Can Celiac cause muscle, speech & swallowing problems?

[Seeker]

Wondering if anyone with Celiac has had problems with speech, swallowing or muscle weakness in other areas (either progressive, constant or fluctuating) and if any doctor has thought such symptoms might be related to the Celiac. Is Celiac recognized by medical profession to cause neuromuscular disorder/deficits?

Wondering because looking for answers for undiagnosed muscle, swallowing, etc. problems, though tested negative for Celiac. Still, father has Celiac, I have APS and maybe a primary immune deficiency and lots of autoimmune disorder in family.

Thanks

Hopeseeker

[Zonulin]

That is a good question - I know Dr. Marios Hadjivassiliou of the U.K. has done a lot of research on neurological symptoms caused by gluten/gliadin. If you google "Hadjivassiliou +neuromuscular" you will get over 400 hits. Have you had your acetylcholine levels checked (blood test)? This study mentions problems with acetylcholine caused by gluten/gliadin (acetylcholine helps your body with digestive enzymes, among other things - my son had very low levels and also immune problems): http://ajpgi.physiology.org/cgi/content/abstract/294/1/G217

...Gluten sensitivity in HLA-DQ8 mice induces immune activation in the absence of intestinal atrophy. This is associated with cholinergic dysfunction and a prosecretory state that may lead to altered water movements and dysmotility. The results provide a mechanism by which gluten could induce gut dysfunction in patients with a genetic predisposition but without fully evolved celiac disease.

Here is a small study from PubMed:
Neuromuscular disorder as a presenting feature of coeliac disease.Hadjivassiliou M, Chattopadhyay AK, Davies-Jones GA, Gibson A, Grünewald RA, Lobo AJ.
Department of Neurology, Royal Hallamshire Hospital, Sheffield, UK.

OBJECTIVES: To describe the range of neuromuscular disorders which may be associated with cryptic coeliac disease. METHODS: Nine patients were described with neuromuscular disorders associated with circulating antigliadin antibodies, whose duodenal biopsies later confirmed the diagnosis of coeliac disease. Neurological symptoms antedated the diagnosis of coeliac disease in all, and most had minimal or no gastrointestinal symptoms at the onset of the neuromuscular disorder. RESULTS: Three patients had sensorimotor axonal peripheral neuropathy, one had axonal motor peripheral neuropathy, one had probable inclusion body myositis and axonal motor peripheral neuropathy, one had polymyositis and sensorimotor peripheral neuropathy, one had mononeuropathy multiplex, one had neuromyotonia, and one had polyneuropathy. CONCLUSION: A wide range of neuromuscular disease may be the presenting feature of coeliac disease. This represents the first report of inclusion body myositis and neuromyotonia associated with coeliac disease. Estimation of circulating antigliadin antibodies should be considered in all patients with neuromuscular disease of otherwise obscure aetiology.
PMID: 9416814 [PubMed - indexed for MEDLINE]
PMCID: PMC2169858

Karen

[halsgluten]

Is Celiac recognized by medical profession to cause neuromuscular disorder/deficits?
Hi, Hopeseeker. The first trick is getting them to recognize Celiac Disease and gluten sensitivity. :rolleyes:

Can Celiac cause muscle, speech & swallowing problems?
Remember that Celiac Disease is a result of untreated gluten sensitivity, gluten sensitivity can cause many other things, such as Diabetes and Spinocerebellar Ataxia (good call on the ataxia symptoms and Hadjivassiliou, Karen). The broader question to ask is whether sensitivity to gluten (gliadin) can cause muscle, speech & swallowing problems? The answer is yes, at the very least, the cerebellum is directly affected.

Now, the intestinal injury that is the definition of Celiac Disease can cause and worsen other conditions. Celiac Disease injuries result in deficiencies, leaky gut, and “neuroendocrine tumors, or more properly gastro-entero-pancreatic”; and each of these results change the function the central nervous system.

Non-treatment of gluten sensitivity accelerates development of autoimmune conditions.
... though tested negative for Celiac. Still, father has Celiac, I have APS
Is ASP "autoimmune polyendocrine syndromes" or “antiphospholipid syndrome”? You’re in “luck”,:rolleyes: both are linked to gluten sensitivity.

Most gluten sensitive people test negative for celiac, and most celiac tests miss most Celiacs and gluten sensitivity.

Non-treatment of gluten sensitivity accelerates development of autoimmune conditions.

Hal

[Seeker]

Yes, I have Antiphospholipid antibody syndrome (APS). Tested negative for Celiac a few times. What do you base your answer that fluctuating speech and swallowing problems can be due to Celiac or Gluten Sensitivity? Just wondering.

Do the symptoms related to Celiac fluctuate depending on how much gluten one has in, say, a day? I am wondering if my symptoms don't get worse after having one or a few days of more than usual amount of wheat products.

I also wonder if Celiac could actually cause or lead to other definite neuromuscular diseases, like ALS, MS or Multifocal Motor Neuropathy. I don't think they check for Celiac in an ALS work-up, so wonder how they would ever know if there might be an explanatory connection.

Acetylcholine connection is interesting, as there was recent study possibly implicating acetylcholine in some way (forget or didn't fully understand) in ALS.

Seeker

[Zonulin]

Hi -

Maybe I'll let Hal answer the gluten/swallowing question - but as to the others:

Do the symptoms related to Celiac fluctuate depending on how much gluten one has in, say, a day? I am wondering if my symptoms don't get worse after having one or a few days of more than usual amount of wheat products. Dr. Alessio Fasano has done several studies (all now published in PubMed) that show that gliadin (the protein in wheat) causes the body to produce more of another protein called Zonulin, which causes more space between the cells. This can trigger any number of autoimmune illnesses and other health problems - gliadin has been found in the BRAIN, so it is able to get through the brain/blood barrier. The proteins in barley and rye are (hordein and secalin, respectively) have also been found to be harmful to humans/mammals. All three proteins are referred to as "gluten." (Researchers use gliadin for lab research and testing because it won't dissolve easily - hence the antigliadin antibody testing, etc.) So to answer your question, any amount of gluten, whether it's wheat, barley or rye will cause the Zonulin reaction which may lead to health problems (187 of them are listed in the appendix of the book, Dangerous Grains). You might feel more sick if you eat a loaf of bread instead of just one slice, but I don't think anyone has measured how much more sick a person can get due to the sheer VOLUME of gluten!

I also wonder if Celiac could actually cause or lead to other definite neuromuscular diseases, like ALS, MS or Multifocal Motor Neuropathy. I don't think they check for Celiac in an ALS work-up, so wonder how they would ever know if there might be an explanatory connection. As Hal was explaining, if they're looking for Celiac disease, they are looking only for "flattened villi upon endoscopy" - the test to ask for to see whether you might have gluten sensitivity is the Antigliadin IgG Antibody test. Or you can eliminate gluten for several days and see what happens (you don't need a doctor's prescription for this). Or you can do an elimination/challenge (eat no gluten for at least one week, then eat a whole lot of it -- see whether you feel terrible after the "challenge"). Or do stool sample testing for gluten sensitivity at Enterolab www.enterolab.com. A great source of information on gluten sensitivityintolerance versus CELIAC is The Gluten Connection by Shari Lieberman and published by Rodale Books.

Acetylcholine connection is interesting, as there was recent study possibly implicating acetylcholine in some way (forget or didn't fully understand) in ALS. It is definitely complicated - it's a neurotransmitter that is responsible for many things. The Mayo Clinic gastro told us that my son's low levels of acetylcholine may have been one of the reasons he was nauseated 24/7 because one of the many things it does is make the body hold onto its own digestive enzymes. Low acetylcholine = problems with digestion.

Karen

[veggienft]

I agree that acetylcholine and related cholines are important liver-created chemicals, and are depleted by wheat disease.

Acetylcholine and acetylcholinesterase are responsible for making and breaking nerve impulses along nerves. Cholinesterase is responsible for reabsorbing bile acid in the intestine, for return to the gall bladder. Un-reabsorbed bile acid keeps fats and fatty acids in the digestive system, and burns the lining of the intestine.

Gluten intolerance and gluten sensitivity affect the liver's ability to process these cholines. As Dr. Fasano discovered, the facilitator of both wheat-disease manifestations is the zonulin dump, where the intestine, in the presence of ingested gluten, dumps all sorts of antigens into the bloodstream.

The body may "zonulin dump" as an innate learned reaction, with no current immune involvement whatsoever.


There are three manifestations of wheat-induced autoimmunity:

1. Celiac Disease
2. Gluten Intolerance
3. Gluten Sensitivity


But the list format of wheat manifestations does not reflect the flow of wheat disease:


Wheat Disease Flow:

Gluten ingestion

Celiac Disease: Digestive system reacts by attacking the small intestine

Digestive system reacts by zonulin dumping antigens into the bloodstream:
gliadin, casein, other glycoproteins, fungus, viruses and bacteria


Dumped gliadin attacks tissue

Gluten Intolerance: The blood's immune system
Reacts by attacking gliadin-compromised tissue.

Gluten Sensitivity: The blood's immune system fails to react


Other dumped antigens attack tissue

Gluten Sensitivity: The blood's immune system reacts
by attacking tissue compromised by dumped non-gliadin
antigens

Gluten Sensitivity: The blood's immune system fails to react


American doctors don't search for gluten or gliadin. Such a search would reveal nothing. Doctors search for the immune reactions to gluten and gliadin. The above flow chart shows that such a search reveals only two of the five manifestations of wheat disease.

American doctors do not even search for the majority of wheat disease. A gluten-free diet reveals all of the above.

..

[Seeker]

I made an appointment to see Dr. Fasano today, for Dec. 2. Anyone here see him? Will he be able to tell me definitively if I have Celiac and if my muscle problems are likely connected? Should I try to go gluten free before the appointment to see if symptoms improve?

[Seeker]

I do remember seeing this before. I wonder, then, why Celiac isn't apparently routinely tested for in many of these neuromuscular disorders, as far as I can tell.


That is a good question - I know Dr. Marios Hadjivassiliou of the U.K. has done a lot of research on neurological symptoms caused by gluten/gliadin. If you google "Hadjivassiliou +neuromuscular" you will get over 400 hits. Have you had your acetylcholine levels checked (blood test)? This study mentions problems with acetylcholine caused by gluten/gliadin (acetylcholine helps your body with digestive enzymes, among other things - my son had very low levels and also immune problems): http://ajpgi.physiology.org/cgi/content/abstract/294/1/G217



Here is a small study from PubMed:


Karen

[veggienft]

I made an appointment to see Dr. Fasano today, for Dec. 2. Anyone here see him? Will he be able to tell me definitively if I have Celiac and if my muscle problems are likely connected? Should I try to go gluten free before the appointment to see if symptoms improve?


Why is it important that you have a name for your symptoms? I mean, we're not talking about knowing the cause. If you go on a gluten free diet, and it cures your symptoms, you will know the cause is gluten. You will know to avoid it.

If the mechanism is celiac disease or gluten intolerance, a doctor can tell you, and give it a name. If the mechanism is gluten sensitivity, no doctor can tell you.

But the diet will cure it just as it will cure celiac disease and gluten intolerance.

If you go to your family doc with painful swolen sinuses and a 101 fever, likely he'll diagnose your bacterial infection by treating it. He'll prescribe you some antibiotics which will have you feeling better in a couple days. The tactic avoids worsening illness with a seemingly low-risk treatment.

Everybody seems to crave this strategy with suspected bacterial infection. But when the illness is as lethal as autoimmune disease, when the diagnosis/treatment is as safe as a change in diet, then people don't want to risk curing themselves.

.......What is that?

..

[Zonulin]

Yes - what IS that?? :confused: I too am amazed that people have to somehow get that medical "seal of approval" even if they have already tried the gluten-free diet and feel better. I think being able to say "I have been diagnosed as having celiac disease" somehow appeals to everyone more than "I have a problem with gluten." Plus the official diagnosis by a doctor makes it easier for others (especially people in the same family) to accept. And I wonder what is THAT? I could go on about this being a patriarchy or how we don't even trust our own bodies' responses to food, etc. but I won't! There are probably a bunch of reasons why nearly everyone seeks that confirmation by a "professional" instead of trusting their own gut (so to speak). :) And there are others whose symptoms are NOT gastro-related who have seen several doctors and who have not yet been properly diagnosed - they just want a DIAGNOSIS so they can get on with their lives. But right now most doctors do NOT diagnose gluten sensitivity/intolerance.

Well Seeker, how exciting that you have an appointment with Dr. Fasano! Boy would I have some questions for him! I know that at least two people on this forum: www.glutenfreeandbeyond.org have seen him or have had their children see him there in Maryland - you might want to post there and see whether they have any advice. I know one person was pleased with him; the other was not. Although he and his research team "discovered" Zonulin and its effect on intestinal permeability and autoimmune disease, he is still considered a CELIAC doctor - he is not mentioned in The Gluten Connection book by Shari Lieberman, which addresses gluten intolerance/sensitivity. I would think that his office would advise you to continue on a diet that includes gluten so that any testing he would do would not be skewed, but definitely call them to confirm this as soon as you can!

Karen

[Zonulin]

I forgot to add that problems with gluten can trigger a whole range of seemingly unrelated immune disorders, making it a true chameleon for the doctors, and difficult to diagnose.

Just last week, my son's immunoglobulin panel was run, and his IgA and IgG are still way below the normal range :(:confused: So the damage was done - he also has elevated levels of mercury and lead, which I suspect triggered his vulnerability to many other problems (H. pylori, lack of acetylcholine, C. albicans overgrowth, antigliadin antibodies, etc.). Even the Mayo Clinic gastroenterologist, exasperated by my questions, practically yelled at me, "We still don't know much about the immune system!!!" Oh yeah. You will probably get the same response, Seeker, as you try to find the reasons for your symptoms.

So...it might be gluten. It might be something else. It might be several things. It might be gluten plus something else. Definitely mention to Dr. Fasano that you have read his research - he might spend more time with you than someone who hasn't read it to help you figure things out :) Just click on the PubMed link at the top of this forum and plug in "Alessio Fasano."

Karen

[Zonulin]

Oh I see Dr. Fasano has been busy with more published research - here are two from October 2008:

http://www.ncbi.nlm.nih.gov/pubmed/18832585?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum

Am J Pathol. 2008 Oct 2. [Epub ahead of print] Links
Physiological, Pathological, and Therapeutic Implications of Zonulin-Mediated Intestinal Barrier Modulation. Living Life on the Edge of the Wall. Fasano A.
From the Mucosal Biology Research Center and Center for Celiac Research, University of Maryland School of Medicine, Baltimore, Maryland.

The anatomical and functional arrangement of the gastrointestinal tract suggests that this organ, beside its digestive and absorptive functions, regulates the trafficking of macromolecules between the environment and the host through a barrier mechanism. Under physiological circumstances, this trafficking is safeguarded by the competency of intercellular tight junctions, structures whose physiological modulation is mediated by, among others, the recently described protein zonulin. To prevent harm and minimize inflammation, the same paracellular pathway, in concert with the gut-associated lymphoid tissue and the neuroendocrine network, controls the equilibrium between tolerance and immunity to nonself antigens. The zonulin pathway has been exploited to deliver drugs, macromolecules, or vaccines that normally would not be absorbed through the gastrointestinal mucosal barrier. However, if the tightly regulated trafficking of macromolecules is jeopardized secondary to prolonged zonulin up-regulation, the excessive flow of nonself antigens in the intestinal submucosa can cause both intestinal and extraintestinal autoimmune disorders in genetically susceptible individuals. This new paradigm subverts traditional theories underlying the development of autoimmunity, which are based on molecular mimicry and/or the bystander effect, and suggests that the autoimmune process can be arrested if the interplay between genes and environmental triggers is prevented by re-establishing intestinal barrier competency. Understanding the role of zonulin-dependent intestinal barrier dysfunction in the pathogenesis of autoimmune diseases is an area of translational research that encompasses many fields.
PMID: 18832585 [PubMed - as supplied by publisher]

and this: http://www.ncbi.nlm.nih.gov/pubmed/18799121?ordinalpos=3&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum

Curr Gastroenterol Rep. 2008 Oct;10(5):466-72.Links
Is this really celiac disease? Pitfalls in diagnosis. Catassi C, Fasano A.
University of Maryland School of Medicine, Mucosal Biology Research Center and Center for Celiac Research, Health Science Facility II, Baltimore, MD 21201, USA.

Celiac disease (CD) is an autoimmune enteropathy triggered in susceptible individuals by ingestion of gliadin-containing grains. Although the autoimmune process targets mainly the intestinal mucosa, CD can manifest itself with a variety signs and symptoms affecting any organ or tissue. For many years, CD has been underdiagnosed because of poor awareness. However, studies showing a high prevalence of CD in North America, followed by a consensus conference on CD organized by the National Institutes of Health, have fueled a campaign to raise awareness among subspecialists and primary physicians. Nevertheless, guidelines for the diagnosis of CD remain poorly appreciated and many health care professionals remain confused about its proper management. This review is intended to clarify "facts and fantasies" about CD diagnosis.

PMID: 18799121 [PubMed - in process]

Karen

[Seeker]

Thanks,

I will definitely ask Dr. Fasano and the new Antiphospholipid antibody specialist I'm seeing next week if the APS I definitely have might be related to Celiac or gluten sensitivity, and if either or both could be causing my troublesome problems with swallowing, speech and other muscles. I do take the point that the most direct way to see if there is a gluten/Celiac problem and connection to these problems would be to go gluten free, which I might try to do. Tried once before but found it very difficult to totally cut out gluten.

[Tootsie]

Seeker, I wish that you could attend a few of the meetings of a local support group. In the one I attend, there are children who could give you lessons on how to deal with avoiding gluten. They attend, with their parents, and are friendly, healthy, well adjusted and very, very helpful.

I go to the group as my grandson has had wonderful results from avoiding gluten, and now dairy also. His uncle has learned to make GF pizza crusts and we all keep GF pancake mix on the shelf.

A GF diet takes a total commitment and lots of planning but is not all that difficult once you learn what to buy, where to go to find it, and learn to cook from scratch. Everyone knew how to cook years ago but it seems to becoming
a lost art. You can eat any thing that is grown, it is the commodities, or manufactured items that will cause you grief. Cheerio.

[Seeker]

Seeker, I wish that you could attend a few of the meetings of a local support group. In the one I attend, there are children who could give you lessons on how to deal with avoiding gluten. They attend, with their parents, and are friendly, healthy, well adjusted and very, very helpful.

I go to the group as my grandson has had wonderful results from avoiding gluten, and now dairy also. His uncle has learned to make GF pizza crusts and we all keep GF pancake mix on the shelf.

A GF diet takes a total commitment and lots of planning but is not all that difficult once you learn what to buy, where to go to find it, and learn to cook from scratch. Everyone knew how to cook years ago but it seems to becoming
a lost art. You can eat any thing that is grown, it is the commodities, or manufactured items that will cause you grief. Cheerio.

I did attend one meeting of a local Celiac support group. One problem I encountered is that eliminating gluten isn't the only nutrition goal. So, for example, I also have to take into consideration high fat, high carb, too many calories, etc. Yet those at the meeting were, understandably, apparently only concerned about being gluten free. Now if going gluten free would really make a very significant difference in my health without sacrificing too much in other health areas (like gaining too much weight, high fat) than I would probably find a way to do this, even if it takes more time and money (and I already spend too much time on meals).

I wonder, though, if I do a gluten free trial to see if this really makes a difference, how long the trial would have to be. Perhaps Dr. Fasano will be able to give some guidance on this.

[halsgluten]

I wonder, though, if I do a gluten free trial to see if this really makes a difference, how long the trial would have to be. Perhaps Dr. Fasano will be able to give some guidance on this.
From http://members.cox.net/hal.kraus/gluten/FAQ.htm :
Q: How long does it take to work?
A lot depends on how bad your case is. It makes sense that if you have no symptoms yet, there is no delay, but if you are severely injured, you may never completely heal.

Some articles suggest that the intestinal villi can grow back (if they can still grow back) in, say, three days. Another suggests that the damaged villi may take a few months to heal. [1] In two weeks, maybe, the first improvements can appear, perhaps improvements in pain, inflammations, and mood. When I accidentally eat gluten or something else that gets me, the immediate symptoms develop over a period of 1 to 50 hours, and full recovery can take a couple of weeks (how long does it take to completely get over a bad case of the flu?). Reduction in some symptoms like hypoglycemia takes several months. Antigliadin antibody levels in the blood fall after 6 months, according to Dr. Hadjivassiliou. What such a drop means specifically for symptoms I don’t yet know. Some Celiacs say that additional improvements appear around 18 months (“things start working again”). Effectiveness of diet therapy for ADHD, autism, and reproductive problems seem to be best evaluated at 12 months. The increased death rate of adult Celiacs returns to that of the general population after about five years on the G.F. diet.[2]

For me, after a couple months I was walking without slouching, at 13 months I noticed that I had stopped biting my nails, and at 20 months I found myself whistling to work. Because gliadin has such a preference for nerve damage and because nerve healing is slow, this might account for subtle symptom improvements years into the diet.

Some theorize that in 10 to 20 years, the immune system may “forget” its sensitivity to gliadin, as it is known to do with some viruses. But I figure if you start eating gliadin again, you body will learn the sensitivity again.

[1] “Celiac Disease (Non-Tropical Sprue)”, Aetna InteliHealth, Aetna Inc., 2004
[2] “About Celiac Disease”, Peter H R Green MD, FRACP, Director of the Celiac Disease Center at Columbia University, Clinical Professor of Medicine, College of Physicians and Surgeons, Columbia University, New York, Medical Adviser, Westchester Celiac Sprue Support Group.
I also have to take into consideration high fat, high carb, too many calories, etc.
You may find on the GF diet, weight comes off and your lipids scores improve, naturally.

Hal

[veggienft]

From http://members.cox.net/hal.kraus/gluten/FAQ.htm :


You may find on the GF diet, weight comes off and your lipids scores improve, naturally.

Hal


A bullseye for halsgluten.

When you go off gluten, the cholesterol will start coming down. What completes the downward cholesterol spiral is avoiding sugar. But avoiding sugar is the key to losing your craving for wheat.

Drop sugar and wheat. You'll stop craving either one. Your cholesterol and insulin levels will both normalize, and so will your weight.

..

[annelb]

I have gluten intolerance and one of my many symptoms was difficulty swallowing food and choking on water. My GI doc was totally unconcerned when I mentioned these symptoms when I was to have my colonoscopy at age 55. I never got tested for CD as my doctors refused. I did an Enterolab test and had elevated antibodies to gluten. My swallowing difficulties, along with many other symptoms, disappeared with a GF diet.

I run a support group. Recently a woman contacted me because her severe swallowing difficulties disappeared when she started a South Beach Diet. Then when she added back in breads, she started having problems again. She is now GF and doing great. She decided not to get testing as she says it would not change anything she was doing.

See Dr. Fasano and get his take, but no matter what he says, you may still want to do a GF trial. You really have nothing to lose. As far as weight gain or weight loss with the GF diet, you can go either way. All the GF processed foods that are high in carbs and sugars can add many pounds and are not very nutritious. I eat a very simple diet- I keep it to whole foods and low carb because of blood sugar problems. The GF diet can be as junky or as nutritous as you want to make it.

Will be interested in hearing about your visit with Dr. Fasano. Wish you well.
Anne

[Zonulin]

Hey Seeker -

A friend of mine gives me her The New York Times when she's read them, and tonight I read an article published on October 7, 2008 about Sjogren's Syndrome - have you done any research about this autoimmune, difficult-to-diagnose illness? Here is a link: http://www.nytimes.com/2008/10/07/health/07brod.html and I thought of you when I read this part:

Sjögren’s can affect the basics of daily living and forces its sufferers to adjust life around it.

“I have trouble swallowing,” Ms. Worthington said. “I can’t swallow anything without liquid. I always carry a bottle of water with me, long before it was fashionable. Even at night, I have to drink water frequently and, of course, use the bathroom frequently. I often wake up feeling like I never slept.”

My stepmother, Sophie Brody, also had Sjögren’s. She thought at first she had a tumor because food would become stuck in her throat. Eventually she was unable to swallow anything but pureed and liquid foods. Even to swallow those without difficulty, she had to have her esophagus dilated every three months.

The article also states, "Though a blood test for telltale antibodies was negative, which happens in 40 percent of cases, the doctor sent her for a lip biopsy at the Sjogren Clinic at the National Institutes of Health, which confirmed his suspicions. The all-too-common delay in diagnosis, which Dr. Vivino said still average six years, can result in serious complications, including damage to vital organs."

The Gluten File (on this forum) has some info on Sjogren's, since it IS an autoimmune disease.

Karen

[Zonulin]

In case the NYT link is gone in a few days, I'll make sure this portion of the article gets into Braintalk:

...In fact, doctors at Johns Hopkins Medical Center are investigating various neurological manifestations of the syndrome, including spinal inflammation that can result in a misdiagnosis of multiple sclerosis.

Because Sjögren’s affects so many organ systems, other common symptoms and signs include vaginal dryness; enlarged parotid glands, the salivary glands in front of the ears; hoarseness; chronic dry cough; recurrent sinusitis, bronchitis and pneumonia; an extreme sensitivity to cold; dry skin and rashes; digestive problems, including a sensitivity to gluten; thyroid disorder; kidney problems; memory problems; numbness, tingling and burning pain in the feet and hands; frequent oral yeast infections; and an altered sense of taste.

Here's a link to testing for this "chameleon" - although they do note in the article that the blood test will show a false negative in "40% of cases" (my previous post directly quoting the NYT article): http://www.sjogrens.org/syndrome/diagnosis.html

Karen

[Seeker]

Hey Seeker -

A friend of mine gives me her The New York Times when she's read them, and tonight I read an article published on October 7, 2008 about Sjogren's Syndrome - have you done any research about this autoimmune, difficult-to-diagnose illness? Here is a link: http://www.nytimes.com/2008/10/07/health/07brod.html and I thought of you when I read this part:



The article also states, "Though a blood test for telltale antibodies was negative, which happens in 40 percent of cases, the doctor sent her for a lip biopsy at the Sjogren Clinic at the National Institutes of Health, which confirmed his suspicions. The all-too-common delay in diagnosis, which Dr. Vivino said still average six years, can result in serious complications, including damage to vital organs."

The Gluten File (on this forum) has some info on Sjogren's, since it IS an autoimmune disease.

Karen

Thanks Karen,

Just saw a rheumatologist (Lupus and Antiphospholipid Antibody specialist) today. I've now seen 3 different rheumantologists and none have suggested Sjogren's though think I once raised it as was once told I have yet another connective tissue disorder (though other specialists disagreed). I definitely do have the Antiphospholipid antibodies though.

Seeker

[Zonulin]

When I google "Antiphospholipid antibodies +Sjogren's" I get over 7500 hits. :confused: Maybe you need to move to another country to get proper medical care...

Karen

[halsgluten]

Seeker, sorry I missed this post.
Tested negative for Celiac a few times.
So far, Celiac blood tests miss more cases than they detect. Gluten sensitivity blood tests miss more cases than they detect. They are poor tools, in my opinion, Enterolab’s opinion, too.
What do you base your answer that fluctuating speech and swallowing problems can be due to Celiac or Gluten Sensitivity?
Fluctuating speech and swallowing problems can be a sign of ataxia, which is not rarely caused by gluten. But it can also be Parkinsonism, which I can’t say gluten can’t cause. I saw a young high functioning autistic child with untreated gluten sensitivity walking with a slight Parkinson gait and suddenly saw that “Hey, I used to walk like that!” before the diet.
Do the symptoms related to Celiac fluctuate depending on how much gluten one has in, say, a day? I am wondering if my symptoms don't get worse after having one or a few days of more than usual amount of wheat products.
In my late twenties, when I had the first occasional bowel signs, if I had a particular brand of whole wheat bread with “vital gluten” added, I would get loose stool the next couple days a least. Gluten tends to be a “delayed allergy” in that the symptoms can take hours or days to appear. Indirect malabsorption symptoms can also take time to appear, say when you eat hard to digest fats or starches

Hal

[halsgluten]

When I google "Antiphospholipid antibodies +Sjogren's" I get over 7500 hits.
I had really dry eyes and mouth that got better on the diet.

Hal

[halsgluten]

American doctors don’t look for it because of a flawed study that was made definitive; as such, they are told in medical schools that they might only see one case in their career.

This shows the importance of crowdsourcing.

Hal

[Zonulin]

Gluten tends to be a “delayed allergy” in that the symptoms can take hours or days to appear. Indirect malabsorption symptoms can also take time to appear, say when you eat hard to digest fats or starches. - Halsgluten

That's it - it's rarely an anaphylactic, immediate reaction. It's not an IgE reaction (think: E-mediate/immediate), but an IgG reaction (think: "G I feel pretty awful, but man I ate that pizza two days ago, so it couldn't be THAT").

Crowdsourcing might be a good thing, so those individual doctors who DARE to venture out of the conventional medical loop would be given credibility instead of incredulity (much like the response of the Church to Galileo, fer instance). :rolleyes:

Karen "Hail, hail, Freedonia, Land of the Brave and...Free" (Duck Soup)

[Seeker]

Thanks for all the feedback.

Unfortunately, it seems that speech and swallowing difficulties are related to clear tongue atrophy (confirmed by comparison of how tongue looks now and pictures I had taken of it 2 years ago when having some milder speech, swallowing problems and some apparent subtle tongue changes). These and other symptoms are pointing towards a picture of an evolving case of ALS or at least some motor neuron disease. I haven't heard or read of anything that specifically links gluten sensitivity or Celiac to either a symptoms like actual tongue atrophy and weakness or ALS itself. If anyone has heard of any such evidence, PLEASE let me know, and also pass it on to the ALS forum, as ALS is as bad as it gets!

Can gluten sensitivity cause more severe symptoms than overt Celiac? The rheumatologist I saw last week thought it unlikely I have Celiac given the negative tests I had for it. But I do have very elevated (and apparently increasing over time) Antiphospholipid Antibodies.

(desperate) Searcher

[Zonulin]

Have you been researching this? When I google antiphospholipid antibodies +autoimmune, there are nearly 40,000 hits, including this one: http://www.associatedcontent.com/article/231775/antiphospholipid_antibody_syndrome.html?page=1&cat=70 Are you being told you have an autoimmune illness? :confused: Have you had a chance to look at Dr. Alessio Fasano's research on intestinal permeability and autoimmune diseases, as posted on this forum?

Can gluten sensitivity cause more severe symptoms than overt Celiac? The rheumatologist I saw last week thought it unlikely I have Celiac given the negative tests I had for it. But I do have very elevated (and apparently increasing over time) Antiphospholipid Antibodies. - Seeker

The answer to your first question is YES! Gluten sensitivity can be a major causal factor in any number of autoimmune diseases - Dr. Fasano's research shows that eating gliadin causes us to produce more of the protein, Zonulin, which causes more space between the cells. His research shows there is a link from this "space" and autoimmune diseases... I look at it this way (sorry - I have posted this before) - think of gluten sensitivity as the palm of a hand. Radiating from that palm are the fingers of autoimmune diseases, such as Lupus, M.S., Rheumatoid Arthritis, Type I Diabetes, Celiac Disease, etc. The instigator/the source of these illnesses is the PALM - the sensitivity to gluten/permeable intestine, triggered by the ingestion of gluten/gliadin. The M.S. Recovery Diet Book's authors have reversed their M.S. symptoms on a gluten-free, casein-free diet. So if you don't have celiac (celiac/shmeliac!), ask your doctor whether that's the only autoimmune disease he's looking for. Then ask him to run the Antigliadin IgG Antibody test, a lactulose-to-mannitol test to check for malabsorption, and an Immunoglobulin Panel to check your immune system. And if he won't order the test, find a doctor who will. :) (Easier said than done.)

1: Scand J Gastroenterol. 2006 Apr;41(4):408-19. Links
Gliadin, zonulin and gut permeability: Effects on celiac and non-celiac intestinal mucosa and intestinal cell lines.Drago S, El Asmar R, Di Pierro M, Grazia Clemente M, Tripathi A, Sapone A, Thakar M, Iacono G, Carroccio A, D'Agate C, Not T, Zampini L, Catassi C, Fasano A.
Mucosal Biology Research Center, Center for Celiac Research and Division of Pediatric Gastroenterology and Nutrition, University of Maryland, School of Medicine, Baltimore, MD 21201, USA.

OBJECTIVE: Little is known about the interaction of gliadin with intestinal epithelial cells and the mechanism(s) through which gliadin crosses the intestinal epithelial barrier. We investigated whether gliadin has any immediate effect on zonulin release and signaling. MATERIAL AND METHODS: Both ex vivo human small intestines and intestinal cell monolayers were exposed to gliadin, and zonulin release and changes in paracellular permeability were monitored in the presence and absence of zonulin antagonism. Zonulin binding, cytoskeletal rearrangement, and zonula occludens-1 (ZO-1) redistribution were evaluated by immunofluorescence microscopy. Tight junction occludin and ZO-1 gene expression was evaluated by real-time polymerase chain reaction (PCR). RESULTS: When exposed to gliadin, zonulin receptor-positive IEC6 and Caco2 cells released zonulin in the cell medium with subsequent zonulin binding to the cell surface, rearrangement of the cell cytoskeleton, loss of occludin-ZO1 protein-protein interaction, and increased monolayer permeability. Pretreatment with the zonulin antagonist FZI/0 blocked these changes without affecting zonulin release. When exposed to luminal gliadin, intestinal biopsies from celiac patients in remission expressed a sustained luminal zonulin release and increase in intestinal permeability that was blocked by FZI/0 pretreatment. Conversely, biopsies from non-celiac patients demonstrated a limited, transient zonulin release which was paralleled by an increase in intestinal permeability that never reached the level of permeability seen in celiac disease (CD) tissues. Chronic gliadin exposure caused down-regulation of both ZO-1 and occludin gene expression. CONCLUSIONS: Based on our results, we concluded that gliadin activates zonulin signaling irrespective of the genetic expression of autoimmunity, leading to increased intestinal permeability to macromolecules.
PMID: 16635908 [PubMed - indexed for MEDLINE]
Karen

[halsgluten]

Can gluten sensitivity cause more severe symptoms than overt Celiac? Most of the time gluten sensitivity causes symptoms other than overt Celiac. If one has gluten sensitivity, it can't be said yet which autoimmune disease you will get first: Celiac, ataxia, diabetes, MS, rheumatoid arthritis, etc.

Make sure your guys can tell the difference between ALS and Spinocerebellar Ataxia.

There is a theory that ALS and MS are in fact infections by cell wall deficient (CWD) bacteria, for example, most ALS and MS patients have chronic atypical infection of something like whooping cough or lyme disease bacteria, even if immunized:
“MS and chronic Bordetella pertussis infections”
http://brain.hastypastry.net/forums/showthread.php?t=36144&highlight=pertussis
If you find a CWD-literate doctor who will correspond with me, let me know.

http://bcbsma.medscape.com/viewarticle/572273_5
Amyotrophic lateral sclerosis is a diagnosis of exclusion.
Which means the doctor has reach the limits of his knowledge.
//bcbsma.medscape.com/viewarticle/572273_5
There are many mimics of ALS (discussed previously) that need to be ruled out before ALS is even listed in the differential to the patient. Because of the wealth of information available on the Internet, breaking the news to the patient needs to be performed only when the diagnosis is certain.

“A Case of Celiac Disease Mimicking Amyotrophic Lateral Sclerosis”
http://www.medscape.com/viewarticle/563701
Pet peeve: A doctor diagnoses you with X, then you find out the gluten free diet fixes you, "Well then, you never had X to start with, did you?" (and they still don’t know what the heck X is anyway.)

http://www.ncbi.nlm.nih.gov/pubmed/16508226
Gluten sensitivity in Japanese patients with adult-onset cerebellar ataxia.
RESULTS: We found a high prevalence of AGA in 5 (36%) of 14 cerebellar ataxia patients, but in only 1 (4%) of 27 disease controls [but with either Parkinson’s or ALS] without cerebellar ataxia (odds ratio, 14.4; 95% CI, 1.41147; p<0.05) and in only 1 (2%) of 47 normal controls (odds ratio, 25.6; 95% CI, 2.66246; p<0.001).

Systemic lupus erythematosus, celiac disease and antiphospholipid antibody syndrome: a rare association.
Association of celiac disease with systemic lupus erythematosus is rare, even though HLA B8 and DR3 are commonly associated with these diseases. We read with great interest a similar case reported by Hrycek and Siekiera in this journal and wish to highlight another case of ours, which had celiac disease, systemic lupus erythematosus and antiphospholipid antibody syndrome, an association which has never been described before.
"Rare" could mean that they just never though to look for it before, which is exactly why gluten sensitivity was thought to be rare.

Hal

[Razzle0]

Tongue atrophy can be caused by Vitamin B12 Deficiency, as can a lot of other neurological symptoms. B12 Deficiency can also cause swallowing difficulty. I would strongly suggest that you get your blood level of Vitamin B12 and Methylmalonic Acid checked. If your B12 level is under 300, you would likely benefit from a daily B12 supplement. If your B12 level is under 150, you are severely deficient and may need shots to correct the deficiency. If your MMA level is elevated, your deficiency is chronic and you may need supplements/shots for a long time to repair the damage. Also, make sure you are getting enough Folic Acid and other B Complex vitamins - the nervous system requires these vitamins for proper function.

-Razzle
Gluten Sensitivity, Chronic Lyme, etc.
TPN-Dependent for Gastroparesis/Dysphagia
Just got a GJ Feeding Tube to try to help my liver be happier with the TPN.

[Seeker]

Thanks,

I have had my B12 and MMA level checked in the past and was normal. Also do take B12 supplement.

Did Lyme or Gluten sensitivity cause your dysphagia? Do you have weakness or symptoms elsewhere?

[Razzle0]

That's good you take B12. A "normal" level could still indicate a deficiency if it is at the lower limit of normal. And were your B12 levels checked since you started having the swallowing issue, or before it started/got worse?

The cause of my dysphagia is unknown - might be Lyme, might be nutritional deficiencies, might be a combination of different things, or might be something else. I know it's not from Gluten Sensitivity because I've been gluten-free for over 3 years but this swallowing issue started in June of this year. I have weakness, fatigue, muscle & joint problems, and many other symptoms. Thanks & take care,

-Razzle
Gluten Sensitivity (GF since 7/05), Chronic Lyme, etc.
TPN-dependent for Gastroparesis & Dysphagia; new GJ feeding tube to try to make my liver happier with the TPN.

[OZZ]

Hi, HopeSeeker:

Wondering if anyone with Celiac has had problems with speech, swallowing or muscle weakness in other areas (either progressive, constant or fluctuating) and if any doctor has thought such symptoms might be related to the Celiac. Is Celiac recognized by medical profession to cause neuromuscular disorder/deficits?

I have Celiac Disease and the answer to all your above questions are yes, yes and yes again and no to the last question.

I was diagnosed in 2005 after spending megabucks on MRI’s, EMG’s, NCT’s, Xrays, Ultrasounds, tons of bloodwork…etc. Believe me; most doctors do not get the connection to neurological complications and Celiac Disease/Gluten Sensitivity. Even the Cleveland Clinic never thought to test me for Celiac Disease.

I was diagnosed first with Axonal Neuropathy which progressed to muscle wasting and extreme weakness. My weakness progressed and imitated both ALS, MG, MS and Parkinson’s at the end. It has taken 3 years but I finally feel I have broken thru some of the weakness and walk almost normal. I still have weakness with repetition and steps but nothing like it used to be.

With swallowing, it was on and off all the time for me. I used to start eating and then suddenly not have any ability to make myself swallow which would lead to choking and embarrassment. I don’t choke anymore but do have trouble with painful swallowing and vitamins sticking in my throat for up to an hour.

I also had about every other neurological problem at one time or another.

I know when you are sick you want definite answers because that is the way we were brought up, but if I were you, I would not worry so much about what name you give your physical problems but…how are you going to fix your problems. Doctors were not taught to fix autoimmune and other similar diseases, they are only taught to diagnose and treat with medicine.

If you tested negative for Celiac…how negative are you? Some doctors will ignore high negative bloodwork. If your numbers are low, you may still have a gluten problem that just hasn’t been found by the researchers because they have only been interested in Celiac in the last few years.

I guess I like to think that at one time my body was somewhat normal and something I did made my body start to self destruct. For me it was Gluten. For you it could be just wheat and eggs or milk and sugar. What I am trying to say is, doctors know how to match symptoms to a disease but do not know how to cure them. They may cover up the symptoms with drugs, but believe me that is not the path you want to take

Even if you test positive for Celiac, that is not your final cure for neurological symptoms.

It has taken me 3 years to fix myself by doing lots of reading and asking and begging for different vitamin tests to figure out where I am malabsorbing. I am still a work in progress but I now feel I have control of my life and continue to research more in the area of vitamins and natural foods.

Early this summer I accidentally found that adding Vitamin C and zinc to my D3, B complex and occasional B12 that I felt amazing. I was going to Europe and didn’t want to end up with a cold from the flight so I added C and Zinc everyday for 2 weeks….and I do believe this is what finally made a difference. I did not even get jet lag if you can believe that????

C: Vitamin C is required for the synthesis of collagen, an important structural component of blood vessels, tendons, ligaments, and bone. Vitamin C also plays an important role in the synthesis of the neurotransmitter, norepinephrine. Neurotransmitters are critical to brain function and are known to affect mood. In addition, vitamin C is required for the synthesis of carnitine, a small molecule that is essential for the transport of fat to cellular organelles called mitochondria, for conversion to energy (1). Recent research also suggests that vitamin C is involved in the metabolism of cholesterol to bile acids, which may have implications for blood cholesterol levels and the incidence of gallstones (2).
Vitamin C is also a highly effective antioxidant. Even in small amounts vitamin C can protect indispensable molecules in the body, such as proteins, lipids (fats), carbohydrates, and nucleic acids (DNA and RNA) from damage by free radicals and reactive oxygen species that can be generated during normal metabolism as well as through exposure to toxins and pollutants (e.g. smoking). Vitamin C may also be able to regenerate other antioxidants such as vitamin E (1). http://lpi.oregonstate.edu/infocenter/vitamins/vitaminC/index.html

Zinc: plays an important role in the structure of proteins and cell membranes. A finger-like structure, known as a zinc finger motif, stabilizes the structure of a number of proteins. For example, copper provides the catalytic activity for the antioxidant enzyme copper-zinc superoxide dismutase (CuZnSOD), while zinc plays a critical structural role (4, 5). The structure and function of cell membranes are also affected by zinc. Loss of zinc from biological membranes increases their susceptibility to oxidative damage and impairs their function (6).Regulatory role. Zinc finger proteins have been found to regulate gene expression by acting as transcription factors (binding to DNA and influencing the transcription of specific genes). Zinc also plays a role in cell signaling and has been found to influence hormone release and nerve impulse transmission. Recently, zinc has been found to play a role in apoptosis (gene-directed cell death), a critical cellular regulatory process with implications for growth and development, as well as a number of chronic diseases (7).
http://lpi.oregonstate.edu/infocenter/minerals/zinc (doctors are starting to find zinc deficiency in Celiacs)

And finally, I started religiously taking vitamin D3 (8,000IU everyday)

So, when you go to the doctors in a couple of weeks be prepared and ask for lots of tests to find out not only if you have Celiac but also lots of Vitamin and Mineral tests that would indicate if you are malabsorbing.

Be a fighter for your health don’t be afraid to make yourself better without a doctors approval. You are doing the right thing by stopping by here and posting. You will learn a lot. It was BrainTalk that saved me...not the doctors.

OZZ

[Seeker]

Ozz,

Thanks for your detailed response. Did your symptoms start to improve when you went off gluten? Did you have any speech problems, tongue weakness or atrophy or breathing problems? You said you had just about every neurological symptom. I wonder if having such a wide array of neuro symptoms is a clue that Celiac is the cause, since most neurological diseases and disorders have a more defined and limited range of symptoms, though obviously there is often overlap between them.

I've been tested in the past for some vitamin levels and have not shown deficiencies, except possibly for D (based on new standards for the normal range). I do notice a trend toward more loose stools (though not frank diarrhea) when I eat more bread and bread products. Don't know if this is suggestive of either gluten sensitivity or Celiac.

Not quite sure what you mean by having high negative bloodwork.
I definitely plan to ask Dr. Fasano if Celiac or gluten sensitivity might be causing my neuromuscular problems and to do any test that might answer this.

Thanks again,

Hopeseeker

[pab]

Ozz,

Thanks for your detailed response. Did your symptoms start to improve when you went off gluten? Did you have any speech problems, tongue weakness or atrophy or breathing problems? You said you had just about every neurological symptom. I wonder if having such a wide array of neuro symptoms is a clue that Celiac is the cause, since most neurological diseases and disorders have a more defined and limited range of symptoms, though obviously there is often overlap between them.

I've been tested in the past for some vitamin levels and have not shown deficiencies, except possibly for D (based on new standards for the normal range). I do notice a trend toward more loose stools (though not frank diarrhea) when I eat more bread and bread products. Don't know if this is suggestive of either gluten sensitivity or Celiac.

Not quite sure what you mean by having high negative bloodwork.
I definitely plan to ask Dr. Fasano if Celiac or gluten sensitivity might be causing my neuromuscular problems and to do any test that might answer this.

Thanks again,

Hopeseeker

'I do notice a trend toward more loose stools' .....yup i would tend to think celiac......also,what the poster meant about high negative labs are labs that fall in the negative range, but on the HIGH end.......the best thing for you to do would be to get ALL your lab work (copies) to have for your personal record.....and then you can look them up and check to see if they are really as your doctors have been telling you,,,,some borderline results that fall OUT of range are given to patients as "normal" ....! also, you will want to see the trend as labs are repeated....is it stable , up, down.....

[OZZ]

Dear Seeker:

When I went on the Gluten Free diet, my health was like a roller coaster. For a couple of weeks I felt better and then would relapse and then feel better and then relapse. I actually at one point got worse and had both my TTG and EMA go up for almost a year while being on a very strict gluten free diet. I think most of my damage was in my brain and it is not as easy to get the TTG out of your brain…that is my only thought on why it took me so long to feel better. My family doctor thought I had Refractory Celiac Disease but I didn’t. I thought about seeing the top Celiac Doctor but when I heard he didn’t test all patients for Vitamin D, I was a little appalled and figured he didn’t know much more about vitamins than I did….actually I felt he knew less..hehe..so I just kept reading asking question and looking for someone that did know about vitamins…sadly I still haven’t found that someone other than studying online and reading Mike Adams from Natural News; Dr. John Cannell the Vitamin D expert and Doctor Mercola….and of course you still have to research what they tell you too! And of course Braintalk and the Gluten Sensitive and Beyond site are great places to get advice and read the latest research

Getting yourself healthy is not easy because doctors can only do so much….they can tell you what you might have and can prescribe drugs. Many people are happy with that type of treatment. I am not. I don’t want to cover up a problem; I want to figure out why it is there and get rid of it. I also know drugs affect me strangely so I always try to avoid them as much as possible.

If you do get a doctor to test all your vitamins, they might not even mention that you have a low level because then they would have to tell you how to fix it and most have no idea how to treat vitamin deficiencies unless it is B12 or folate and even then they are mostly clueless.

My walking actually became slower after on the diet and I had some problems with cysts rupturing in my uterus. Eventually, all the cysts in my breasts actually shrunk and are gone. I also had trouble with stones in my salivary glands. I think my body was full of toxic stuff and it just took a long time to be rid of it. It probably would have happened faster if I new what vitamins to take and how much.

If you find your Vitamin D was low according to the new standards, that means you are really low as you want about double of the new standard in your blood and for people that don’t absorb it takes a lot of D to get your numbers up. I am not sure but when I started taking D and C together and added the zinc, I think that combination really helped me. My zinc was a normal low range so I wasn’t deficient but I had read were zinc deficiency causes you not to taste and I was having a lot of trouble with taste so I started taking zinc in June along with C and all the others I mentioned and now I feel much much better. I have in my last Celiac Meeting notes that you need Vitamin C to make Vitamin D work….not sure if that is true but maybe that is why I feel better. I know Vitamin C repairs cells and I am sure neurological patients must have a lot of damaged cells.

Vitamin D is such a major vitamin and there was just a post out from Dr. Cannell that warned about cod liver oil having too much vitamin A and stated we needed more Vitamin D

In addition to warning about the consumption of cod liver oil, the above experts recommended healthy children take 1,000 IU/day of vitamin D for every 25 pounds of body weight. In some cases this is more than ten times current recommendations for children by the government and professional organizations.

Finally, the group recommended that "children with chronic illness such as autism, diabetes, and/or frequent infections" may need to take even more vitamin D, "doses adequate to maintain their 25-hydroxy vitamin D in the mid normal of the reference range (65 ng/ml) - and should be so supplemented year around." Less than one percent of American children currently have such levels.
John Cannell, MD
http://www.vitamindcouncil.org

Breathing Problems…yes

• Difficulty getting deep breath
• Became very breathless with mild exertion
• Peak Flow down to 225-250 not asthmatic
• Pulmonary Functions test showed mild restrictive and obstructive disease
• Fatigue caused soft strained voice

Tongue:
Geography type look which can also cause an atrophy look too
As I said I would sometime just not be able to swallow. I also lost the ability to whistle for months. I had one very important MG doctor ask me why I whistled…And doctors wonder why we loose faith in them….Just because I was so sick didn’t mean I was depressed….I whistle because I am a naturally happy person…is what I said. I think doctors have a very hard time reading patients anymore because they think the whole world is depressed.

Speech:
In the evening I would slur if fatigued and loose words often and blank out.

My most embarrassing moment and when I realized I was ever so sick was when I was at my daughters band meeting in their gym. The speaker was introducing the new vice president etc and people were clapping after each. So they introduced the President of Band for next year and while everyone was clapping, I was waving…I stopped and realized how inappropriate that was and had no idea why I was doing this….it was an ALS moment that really made me wonder what was going on in my body. It was pretty scary and still scares me when I think back to the many problems that were flooding my body.

Eating Bread: I never really had diarrhea except maybe as a child but I went often and was always loose…I thought that was normal….eventually though, visits became emergencies in other words when I had to go, I had to go now. Triscuits were a big problem for me but I never connected the dots.

It you have negative Celiac tests, I wouldn’t be surprised if Dr. F sends you packing as most Celiac Doctors only recommend GF diet if you are a gold standard which is really sad. Maybe they are changing, I don’t know but that is how it was a few years ago.

Have you read Dr. Marios Hadjivassiliou, he is a very well respected doctor from England….I heard him talk at the International Celiac Conference a couple of years ago. http://jccglutenfree.googlepages.com/halloffame He believes there is just as much damage without being Celiac positive and he has proven it. Read him please! My biopsies were very mildly damaged which is unusual for having positive EMA and TTG. To me that proves that the damage was of course elsewhere like in my brain and muscles. But I was so glad to be positive only to show my neurologist that food actually can be very damaging to the muscles and brain.

Remember although Dr. F is a Celiac Doctor, no doctor is an expert because they are just beginning to chisel away at the iceberg that has been around for 100’s of years.

Also, my youngest daughter who was sickly most of her life had extremely low numbers on all Celiac tests and a poorly done negative biopsy (2 samples…that’s all), had the Celiac DNA and when challenged had her iron, saturation and ferritin all drop to extremely low levels. The family doctor gave her the Celiac diagnosis. But, she probably did have the dermatitis herpetiformis form of Celiac too, which we didn’t bother to test.

My older 2 children tested positive TTG for Celiac as did my husband testing positive Gliadin IgA and IgG and high normal TTG so we are all considered Celiac. The 2 older and husband skipped the biopsy because they knew they had the disease and didn’t need the gold star.

OZZ

[Seeker]

Hi OZZ,

Wow, an entire family of Celiacs! Sounds like you've certainly been on a journey. I identify with several things you've mentioned, including the intermittent inability to whistle.

Saw Rheumatologist today about another autoimmune condition (APS). I mentioned the loose stool tendency and she agreed that I likely have gluten sensitivity, but doubts Celiac in light of absence of positive tests and signs of malabsorption. Still, from what I've read here, even gluten sensitivity might be causing some of these problems. I did read one case study of Celiac masquerading as ALS, so would think this might happen more than is believed, since I don't get the feeling that Celiac or gluten sensitivity is routinely checked for in ALS or the diagnostic work up to arrive at an ALS dx.

I will not let Dr. Fasano so easily dismiss me if I test negative; not when I'm having these very distressing, seemingly progressive symptoms! In fact, I wonder if I should ask or even insist on a biopsy?

Hopeseeker

[Zonulin]

I will not let Dr. Fasano so easily dismiss me if I test negative; not when I'm having these very distressing, seemingly progressive symptoms! In fact, I wonder if I should ask or even insist on a biopsy? -Seeker

The Gold Standard, "flattened villi upon endoscopy" will show whether there is late-stage celiac disease. But little else. I would ask for a lactulose-to-mannitol test (swallow the sugar/collect the urine), which is the same test they use in their research studies to show gut permeability. You might request the endoscopy just for your own curiosity. I would not recommend it - I have heard some horror stories, plus my son's own experience (at 9) was extremely unpleasant. Others have not had problems...:confused:

Ideally the gastroenterologists would use the Capsule Endoscopy (large pill you swallow which contains a camera and takes 50,000 images of the ENTIRE gastro tract). But because there are so few specialists who can "read" the images, the relatively non-invasive CE is rarely used. Also - if the person analyzing the images comes across something that looks suspicious, the gastro would be obligated to do exploratory surgery, and the suspicious area might turn out to be just a fold of skin or something equally benign. You might want to ask Dr. Fasano whether he uses the CE. The CE is also the only way gastros can "see" the entire small intestine (the endoscopy only goes down so far; the colonoscopy only goes so far up).

Karen

[Marciab]

I've had problems with my speech, ataxia, myoclonus, swallowing, etc and it turned out to be food related. Most of my problems were from gluten but I'm looking at dairy now too.

I gave up all known allergens in 2005 when I figured out that foods were causing problems. But, I've been experimenting with dairy lately and I noticed it caused my throat to feel a little tight like the membranes were swollen. And last nite and today I had problems swallowing my supplements. It's been easy for years now so I have to suspect the dairy.

I'm still struggling with finding the right word or combining words but it's not nearly as bad. Fatigue or hunger will make it more obvious though.

Part of my problem with speech has been hypoglycemia. Normal blood glucose is important in order to think clearly, etc. I just had some nutritional testing done and found out that I'm low on chromium and this helps to regulate our blood glucose.




OZZ,

Congrats on healing yourself. I know first hand how challenging this is.

IMHO everyone today really has to take on the job of healing yourself. Doctors look at those labs and think this person is fine, not really caring that you feel like crap. Someday I hope they learn what labs to run.

I found an integrative doctor who ordered stool and blood tests to check my food allergy, candida, leaky gut and nutrient levels finally after 19 years of being sick. :eek: My last GP acted like I'd lost my mind when I asked him to do it. And the one before that, acted like she'd seen a ghost when I started to heal from CFS after removing gluten from my diet. Scarey, huh ?