Diagnoses/Outcomes

[DrRoss]

Biopsy supercedes anti-EMA/anti-ttg supercedes anti-gliadin. Meaning: If you had a positive biopsy as well as positive antibodies, just select biopsy. If you had a negative biopsy, or did not have one, but had positive anti-EMA/anti-ttg as well as anti-gliadin, select anti-EMA/anti-ttg. Only select the anti-gliadin choices if you did not have positive biopsy or anti-EMA/ttg. Thanks.

[jcc]

You forgot a couple of categories. Many of our members discovered their gluten sensitivity on their own through elimination diets/ or dietary trial. Some have used Enterolab stool testing.

I don't think you will get a huge response here, as this forum has been down for an extended period, and people have either found other places to go or are just slowly finding their way back.

Most forums, including this one, don't allow 'research' from outsiders, but if you are a member with CD just curious about this...then you can do a poll like this.

I did a poll very similar to this in the past. I'm trying to locate it via google cached pages, but haven't found it. About 30% of our members are biopsy proven celiac, and I think another 30% had some positive bloodwork, and the rest are self diagnosed...and happy with that.

Most people have improved, but not all, and they represent a cross section.

If I find the old poll, I will post it here.


I'd also have trouble with the 'no symptoms - still symptoms'

My daughter had about a 90-95% resolution of symptoms (GI, neurological, skin), but she also needs to be milk free to be symptom free....although those GI symptoms pale in comparison to the GI symptoms she had with gluten. She had only positive antigliadin IgG antibodies, we skipped the biopsy, she is not DQ2 or DQ8, but DQ1.

Cara

[DrRoss]

You forgot a couple of categories. Many of our members discovered their gluten sensitivity on their own through elimination diets/ or dietary trial. Some have used Enterolab stool testing.

I don't think you will get a huge response here, as this forum has been down for an extended period, and people have either found other places to go or are just slowly finding their way back.

Most forums, including this one, don't allow 'research' from outsiders, but if you are a member with CD just curious about this...then you can do a poll like this.

I did a poll very similar to this in the past. I'm trying to locate it via google cached pages, but haven't found it. About 30% of our members are biopsy proven celiac, and I think another 30% had some positive bloodwork, and the rest are self diagnosed...and happy with that.

Most people have improved, but not all, and they represent a cross section.

If I find the old poll, I will post it here.


I'd also have trouble with the 'no symptoms - still symptoms'

My daughter had about a 90-95% resolution of symptoms (GI, neurological, skin), but she also needs to be milk free to be symptom free....although those GI symptoms pale in comparison to the GI symptoms she had with gluten. She had only positive antigliadin IgG antibodies, we skipped the biopsy, she is not DQ2 or DQ8, but DQ1.

Cara


Thanks for the response. Indeed I was diagnosed with CD by a GI doc. However, I only had positive IgG anti-gliadins. IgA anti-gliadins, anti-EMA, and anti-ttg were negative. My only symptom was diarrhea, and IgA deficiency is rather unlikely given that I rarely get sick. After 6 months on a strict gluten-free diet, there has been little if any improvement in my diarrhea (IBD had been ruled out previously with colonoscopy as well as bloodwork).

Given the fact that my testing turned out negative according to the mainstream medical literature, and that I had no improvement with a gluten-free diet, I'm now administering myself a "gluten tolerance test" to see if I notice any apparent changes. I was interested in seeing how other members were diagnosed, and given those diagnoses, how they fared on a gluten-free diet. I knew many on here had not been diagnosed with biopsy or anti-EMA/ttg. While those that self-diagnosed and got better with the diet certainly should continue what they're doing, I suspect that there are some GI docs that are overzealously diagnosing patients with CD when both physician and patient are frustrated with various symptoms and no apparent cause.

[jcc]

Have you tried removing Cow's milk??? Almost half of those with gluten problems have problems with cow's milk. Many people have found they need to remove additional foods :(.

The number one reason for continuing symptoms is incomplete elimination of gluten. If you have not been a member of a local or online support community, I think your risk is greater (just because it is downright ridiculous where gluten can hide, cross contamination issues, etc). Even the strictest most well intentioned of us have been duped. We can help you there...to see if we can sniff out any hidden gluten.

Have you had a chance to look through The Gluten File? I have a page called Not Celiac? It lists other reasons for celiac like symptoms that may need to be explored. You are right, if you are not getting well, you need to keep exploring. It really might be additional foods need to be eliminated.

I hope you stick around. We might be able to help :).

Cara

[jcc]

Antibodies to dietary antigens in coeliac disease. (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=3775259&query_hl=4&itool=pubmed_docsum)
(http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=3775259&query_hl=4&itool=pubmed_docsum)PMID: 3775259 Oct 1986


Antibodies to gliadin (AGA) were found in 77 (94%) of 82 sera from patients with active coeliac disease (untreated and after gluten challenge). Although IgG AGA had a higher nosological sensitivity than IgA AGA (88% versus 67%), their nosological specificity was lower than that of IgA antibodies (87% versus 100%). The sensitivity of antibodies to casein, beta-lactoglobulin, and ovalbumin in active coeliac disease varied from 36% to 48% without significant difference between IgG and IgA antibodies. IgG and IgA antibodies to milk and egg proteins showed a specificity similar to that of AGA, although some IgA antibodies other than AGA were found in disease controls (Crohn's disease, ulcerative colitis, post-enteritis syndrome).
PMID: 3775259

[jcc]

I have great friends :).

Someone found this poll, in case you are interested. It is a cached copy, so a little weird to read, but I'm happy it was recovered. So my memory was a little fuzzy on the statistics~

About Your Diagnosis

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http://209.85.129.104/search?q=cache...hp%3Ft%3D99725 (http://209.85.129.104/search?q=cache:zA4YSNCZqLYJ:brain.hastypastry.net/forums/showthread.php%3Ft%3D99725)

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[DrRoss]

Have you tried removing Cow's milk??? Almost half of those with gluten problems have problems with cow's milk. Many people have found they need to remove additional foods :(.

The number one reason for continuing symptoms is incomplete elimination of gluten. If you have not been a member of a local or online support community, I think your risk is greater (just because it is downright ridiculous where gluten can hide, cross contamination issues, etc). Even the strictest most well intentioned of us have been duped. We can help you there...to see if we can sniff out any hidden gluten.

Have you had a chance to look through The Gluten File? I have a page called Not Celiac? It lists other reasons for celiac like symptoms that may need to be explored. You are right, if you are not getting well, you need to keep exploring. It really might be additional foods need to be eliminated.

I hope you stick around. We might be able to help :).

Cara

I was lactose-free during the same period. I'm very familiar with the gluten-free diet, including the risks of cross-contamination and possible hidden places.
The most recent studies show that the positive predictive value of AGA is as low as 20%. EMA and tTG antibodies are really where you gain the most sensitivity and specificity, in the 90-99% range.
I need to get IgA levels, and if those are low, IgG EMA and tTG tested. I was interested in seeing how people with positive AGA alone fared, since it's not considered suggestive of Celiac.

[RathyKay]

We're not on the poll.:o My son has epilepsy. I took him dairy-free to prove to everyone that it was not the dairy. Hah! While dairy was not the sole source of his seizures, removing it allowed us to get him off of all meds (Yay!). We've been able to figure out the trigger of all seizures since. (Currently 5 seizures since going med free over 14 months ago.)

I had done some reading about GFCF diet (casein-free... and we avoid ALL dairy, not just lactose and/or casein) doing wonders for autistic kids. Tom is not technically autistic, but has a few autistic tendencies. His neuro was kind enough to order the GF bloodtests for us, but they were all negative. I ordered the genetic test from Enterolab. Tom has two different versions of DQ1. So... we gave GF a try.

Going GF has improved his balance and vision; he seems more mature... all wonderful things.

Oh, and I agree with Cara on the cow's milk. I think you should eliminate ALL of it from your diet. You need to eliminate for six weeks to get it completely out of your system before trialing it again.

[aklap]

Hi DrRoss,

I don't really fit in to any of your poll categories, but wanted to chime in here.

My biopsy test was neg.
My bloodwork was neg. [however I was experimenting with GFD for several months when the IgA test was done. A doctor ran some blood work unbeknownst to me - and that's what was run].

I started a gluten challenge, but sx's came back after 5 days. That was enough for me and I called it quits.

Many things resolved themselves since I've been GF. All gastro issues - gone. No more reflux meds. Most neuro issues - gone.

One thing that was most impressive: No more high blood pressure meds after 20+ years on them. My PCP cut back them back and finally my neuro suggested I suspend them all together after complaining about orthostatic hypotension. Currently I am rx med free!!

I think there are many of us that are in the gray zone. A zone that the medical community doesn't know how to handle yet.

Good luck with your research and your health!!

[DrRoss]

Thanks for sharing your stories!:)

[annelb]

I can't vote on your poll either. I suspected a problem with gluten and confirmed it with Enterolab testing. This is a stool test. I did both the IgA antigliadin antibodies and IgA tTG and fecal malabsorption. All were positive.

I have had fantastic improvement in my health with a GF diet but I can't say I am symptoms free. The reason I looked into gluten sensitivity was because of my peripheral neuropathy. My pain level went from a 9 to a 1-3. My feet have been greatly damaged and may never feel totally normal(can't even remember what that would feel like) but I don't have to take anything for pain.

I found that I would get just as sick on yeast as I did on gluten. I have had to remove yeast too. I also have antibodies to egg white, casein and soy. Not sure I have obvious symptoms to these.

You may have already found this article about reasons for symptoms to persist after starting a GF life.

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=16644460&query_hl=13&itool=pubmed_docsum

Gastrointest Endosc Clin N Am. 2006 Apr;16(2):317-27.Click here to read Links
Monitoring nonresponsive patients who have celiac disease.

* Krauss N,
* Schuppan D.

Department of Medicine I (Gastroenterology, Hepatology, Pneumonology and Endocrinology), University Hospital, Ulmenweg 18, Erlangen 91054, Germany. Norbert.Krauss@med1.imed.uni-erlangen.de

Because of the wide variations in the clinical presentation of celiac disease and because treatment exists that is effective in most cases, screening of the general population for celiac disease has been considered. There is still no evidence that patients who have symptom-free celiac disease are at increased risk of small intestinal lymphoma or other complications. Prevention of osteoporosis seems to be the strongest indicator for widespread screening today [22].The major cause of failure to respond to a gluten-free diet is continuing ingestion of gluten, but other underlying diseases must be considered.Many different drugs (eg, anti-tumor necrosis factor [TNF]-alpha) have been used in patients who have RCD [23]. Steroid treatment has been reported to be effective even in patients who have underlying early EATL.Histologic recovery in patients who have celiac disease usually takes several months but can take up to 1 year, even if the patient remains on a strict gluten-free diet. Some patients report celiac-related symptoms for months after a single gluten intake.The definitions for RCD in literature vary. The authors consider the definition give by Daum and colleagues [24] suitable. They defined true RCD as villous atrophy with crypt hyperplasia and increased IELs persisting for more than 12 months in spite of a strict gluten-free diet.If a patient is not responding well to a gluten-free diet, three considerations are necessary: (1) the initial diagnosis of celiac disease must be reassessed;(2) the patient should be sent to a dietician to check for errors in diet or compliance problems, because problems with the gluten-free diet are the most important cause for persisting symptoms; (3) other reasons for persisting symptoms (eg, pancreatic insufficiency, irritable bowel syndrome, bacterial overgrowth, lymphocytic colitis, collagenous colitis, ulcerative jejunitis, protein-losing enteropathy,T-cell lymphoma, fructose intolerance, cavitating lymphadenopathy, and tropical sprue) should be considered.Other causes for villous atrophy are Crohn's disease, collagenous sprue, and autoimmune enteropathy.Abdulkarim and colleagues [25] examined 55 patients who had a diagnosis of nonresponsive celiac disease. He found that 6 did not have celiac disease, and25 still had some gluten ingestion.Tursi and colleagues [26] reported 15 patients who had celiac disease with persisting symptoms. Because histology improved in all patients after several months, RCD was excluded. Of the 15 patients, 10 had small intestinal bacterial

How is your "gluten tolerance test" going?

Anne

[DrRoss]

How is your "gluten tolerance test" going?

Anne

Ate half a loaf of whole wheat bread today. No effect so far...

[glenntaj]

--that many gastric docs are not yet ready to accept, I think--though I believe the research evidence is starting to point to it--is that gluten sensitivity is a broad ranging condition, of which frank celiac is just one part.
It is possible to be gluten sensitive without EVER having flattened enough villi to get a "clear" diagnosis of celiac, and to have the condition without ever having gastric symptoms--although one may have many other symptoms, form the neurologic to the reproductive.

This is where the value of the anti-gliadin antibodies come in--if they are present, the body is reacting to something. I laugh when people say that anti-gliadin antibodies are non-specific because 12-20% of the population has them--that means 80-88% of the population doesn't, and there's no reason to assume that one out of 5/one out of six people couldn't be gluten sensitive--there are plenty of other intolerances, such as to lactose, that are found in high proportions of certain populations.

While I certainly don't have anywhere near a scientific survey, I'm noticed, anecdotally, that a greater percentage of people with isolated anti-gliadin findings report non-gastric symptoms, either alone or with gastric symptoms, than those who have anti-tranglutaminase/anti-endo positivity; such people typically have some gastric symptoms and/or evidence of villi deterioration.

I have the suspicion that many gastric docs don't want to "let go" of celiac disease just yet--especially as it has recently become a "hot" diagnosis.

[pakisa100]

My dh was on a gf and dairy free diet for 18 months before *d* cleared up. He was about 35 years old at the time. So, 6 months is no where near enough time to notice a difference for an adult.

Also, if you are reacting to casein, then being lactose free is not good enough.

His tests all came back negative so we can't vote on your poll either. (He had a 'classic' celiac childhood.)

Hope you find your answer.

Kind regards,
KimS

[annelb]

Ate half a loaf of whole wheat bread today. No effect so far...

There are people with full blown, total villous atrophy who do not have obvious symptoms if they eat gluten. There are people who show little to no villous changes who react violently to miniscule amounts of gluten. Symptoms do not alway reflect the amount of damage that is taking place in one's body. I know one woman who was diagnosed by biopsy and blood and she says she does not have any symptoms when she eats gluten. She says she wishes she had symptoms as she feels she would be more careful with her diet if she did.

You know you have antibodies to gluten. If you chose to continue to eat gluten it may be wise to be retested for CD every few years to be sure that you do not go on to develop celiac disease.

Anne

[jcc]

--

While I certainly don't have anywhere near a scientific survey, I'm noticed, anecdotally, that a greater percentage of people with isolated anti-gliadin findings report non-gastric symptoms, either alone or with gastric symptoms, than those who have anti-tranglutaminase/anti-endo positivity; such people typically have some gastric symptoms and/or evidence of villi deterioration.


I have read the antigliadin IgA antibodies do have more specificity to intestinal involvement, and the antigliadin IgG antibodies are more representative of non-gut involvement. It is old news that IgA antibodies have more specificty to gut involvement, but the new part is honing in that antigliadin IgG antibodies may not be so meaningless afterall.

I've collected so many articles now that I have a hard time remembering where I have seen what. I will have to track down what I'm thinking of now, because I have added a page to TGF about antigliadin antibodies...so I can add it there, and not lose it again! Of course, this research in regard to gluten sensitivity outside of celiac disease is ongoing, but it is nice to know several researchers are 'on it'.

Cara

[annelb]

Two doctors who believe that the IgG AGA is important are Dr. Ford http://www.doctorgluten.com/articles.htm#Press and Dr. Hadjivassiliou http://brain.hastypastry.net/forums/showthread.php?t=190

Anne

[aklap]

So does Gastro Dr. Rudert

http://www.clanthompson.com/exp_doctor.php?status=show_qa&coded_question_id=50&coded_category=Tests%20and%20Their%20Results&coded_category_id=4

QUESTION: What blood tests need to be taken to diagnose CD?

DR. RUDERT: It is presently thought that the most specific blood test available is tissue transglutaminase. Tissue transglutaminase correlates with total villous atrophy on biopsy. (In other words: a positive tissue transglutaminase correlates with a completely flat small bowel biopsy.) When I screen for Celiac disease, I obtain antigliaden antibodies (IGG & IGA), antireticulin antibodies and tissue transglutaminase (the major endomyosial antibody). Some physicians are no longer obtaining antireticulin antibodies, however I find that this is beneficial in select individuals. Remember seronegative Celiac may exist and has been described in the Netherlands.

http://www.clanthompson.com/exp_doctor_rudert.php3

Cynthia Rudert

Cynthia S. Rudert, M.D., F.A.C.P. is a Board Certified Gastroenterologist in Atlanta, Georgia, specializing in Celiac Disease. She is the Medical Advisor for the Celiac Disease Foundation and for the Gluten Intolerance Group. She is the Medical Director of the Gluten Sensitive Support Group of Atlanta and a member of the Celiac Standardization Group.


Prometheus Labs Celiac Panel: http://www.prometheuslabs.com/wwp/pdf/Diagnostic_Services.pdf

University Chicago's CD Program - Followup testing: http://www.celiacdisease.net/CeliacDisease/FollowUpTesting/tabid/85/Default.aspx

[NancyM]

I'm self-diagnosed, then got confirmation diagnosis with both a dietary trial and Enterolabs. Dr. Fine also found a problem with casein, I'm pretty sure soy is also a problem for me given some pretty bad stomach aches after eating soy based ice cream.

I've got really touchy intestines right now and I'm still figuring out what foods are making them unhappy. Putting myself on a very basic diet of meat, veggies and fruit seems to stablize things. Then I start adding stuff back in and it all goes downhill. I just need to be more methodical with this approach.

[diamondheart]

I don't fit your poll either. I was off gluten for so long that none of these tests would have worked for me anyways. I confirmed my gluten sensitivity through genetic testing.

But being gluten free, dairy free, corn free, and quinoa free were not enough for me. I did additional IgG antibody testing to 90 foods and found out I was reacting to soy and nuts and seeds. Once I cut those out, my diarrhea cleared up.

I don't think it's normal to cut out lots of foods like I am doing, so I'm continuing to do research on my own about leaky gut syndrome and how to heal the gut. My current favorite book is Karen DeFelice's book on Enzymes (http://www.enzymestuff.com/). It has more to do with the autism connection, but she has a lot of good information about how to heal the gut. There are so many other things that can happen to your gut once you have something like celiac disease, such as yeast, dybiosis, lack of digestive enzymes, etc. For some of us, I don't think it's as easy as cutting out gluten to solve our digestive problems. There is a whole holistic approach that has to be taken. It's time consuming to figure it out and I really don't think that there are many doctors who understand it all. Karen also has a new book out that I'm dying to read. I'll try to put up the links later, but gotta run!

Claire

[klasyjo]

I selected biopsy w/no symptoms but I still occasionally have symptoms mostly because of accidential consumption of gluten or from other complications I have.

[diamondheart]

Ate half a loaf of whole wheat bread today. No effect so far...

It can take 24 to 48 hours for me to see an effect.

What are your usual symptoms? I get GI symptoms as well as other not so obvious ones, like depression, brain fog, and fatique. Now that I know what to look for, my arthritis flares up in my neck too.

Claire

[OZZ]

DrRoss.

Well, I guess so far I am the only biopsy proven Celiac still with symptoms. But, how many might be biopsy proven if they examined the whole intestine? How many had negative biopsies because their uninformed gastro only took 2 pieces to examine?

Frankly, my biopsy positive was not total atrophy like they claim it should be with a positive EMA...so where was my damage??? Probably further down. Or better yet, further up...in my brain somewhere which is why I had so many neurological problems.

I agree that 6 months is not enough time to see any results. It took me 15 months and I am just realizing some amazing results.

My gastro said I would feel better in a few weeks:eek: and he also told me I didn't need my Vitamin D tested! He is even written up in one of the best Celiac doctors in the area...this is really scary! When I went to see this doctor, I had only read for a month or so and knew more than he did (about Celiac that is)...except how to do a biopsy..LOL...but give me a little more time and maybe I could do that better too...:D ....At least I would know to take more than 2 biopsies!

DrRoss are you testing your AGA's and tTG's after 6 months to see if the levels are dropping? Did you say what your tTG's were? Some doctors think that if you have tTG's in the blood that you have the early stages of Celiac if they are not positive.

My husband was also diagnosed with positive AGA's and what we consider a positive tTG since it was an 18 out of 20 and he was on an almost gluten free diet for about 6 months. He is going thru the same motions as me and my daughter.

First you notice an improvement, next you feel worse and finally you really start healing and can actually say you feel better. He has been going thru the feeling worse stage although he notices some improvement. For awhile he was like you saying he couldn't possibly have this since his symptoms were so different, but after getting accidentally glutened and becoming so ill, he knows he has Celiac Disease and is starting to believe this is what his father died of at a young age of 73.

Have you read any of DogtorJ's info. I really find his thoughts fascinating. I will find his link and post if for you.

[DrRoss]

6 days now on an unrestricted diet and no change in how I feel. I ordered the Enterolab tests to see how those turn out, but given my history and the fact that my only positive test was IgG AGA and non-response to gluten exclusion/reintroduction, I suspect I have IBS. I'll post my Enterolab results (antibodies and HLA) when I get them.

[Raechel]

Dr. Ross, Since you have been gluten-free for so long, it probably won't do any good to run the "other" Celiac test: Reticulin antibody. Though it should have been done.

Not knowing your medical history, it's hard to give any meaningful advice. Have you tried acidophilus? Are there any drugs or supplements you may be on that adversely affect your GI tract? Have you been tested for parasites, etc.? Have you had a colonoscopy or endoscopy? Has anyone tested your stomach for your pH level (meaning, do you know if you lack stomach acid which can lead to similar problems)?

Are you a "real" doctor? Just curious.

If you have had long-standing celiac disease, chances are that healing will take a long time; therefore, symptoms may last a long time.

I would disagree with you . . . I believe celiac disease is WAY underdiagnosed. I was lucky to have a GI doctor who knows a lot about it, did ALL the antibody tests and several biopsies.

I hope you get the answers you are looking for.

Raechel

[diamondheart]

6 days now on an unrestricted diet and no change in how I feel. I ordered the Enterolab tests to see how those turn out, but given my history and the fact that my only positive test was IgG AGA and non-response to gluten exclusion/reintroduction, I suspect I have IBS. I'll post my Enterolab results (antibodies and HLA) when I get them.

Hi DrR,

Does no change in how you feel mean that you are still getting symptoms that you had before you went gluten-free? I did the Enterolab tests 7 months after I was gluten and dairy free, and everything was negative, not surprisingly. I don't know how long you have to do a gluten challenge to see antibodies show up. You might want to ask the folks at Enterolab so you get the most out of your testing and your money!! My gene tests were the most interesting thing, and I have two double copies of the gluten sensitive gene.

I recently found out that I have bacterial dybiosis, which is a fancy way of saying my good bacteria and bad bacteria are out of balance. I also had SIgA run (secretory IgA) and I was <69. Normal is at least 400, so that means my immune system has been fighting this thing for a long time. I think sometimes it's a chicken and egg thing. Which came first; the bacterial dybiosis or the food intolerances? Regardless, I need to cut out the things I'm reacting to for now until my gut gets better.

I hope the fact that you are not having symptoms (or are you? not sure from your previous posts) that your gut is healing. I'll be interested to hear your Enterolab results.

Claire

[Zonulin]

Hi - I was WorriedMom on the "old" Braintalk, and am finally registering under a "new" name (sorry, Dr. Fasano). That was some hiatus!! (Or was it a sabbatical?) My son began feeling constantly nauseated, with vomiting and weight loss when he was 9. It took us over two years and 22 doctors (including a trip to the Mayo Clinic in Minnesota) to get a handle on what was causing it. No "flattened villi" was found upon endoscopy, but he did have Antigliadin IgG antibodies (69, with the range up to 20). He is also IgA deficient, which skews the celiac marker testing and affects the mucosal membranes. In addition, they found H. pylori (a bacterium which lives in the lining of the stomach and ultimately causes stomach cancer, which runs in our family), and a lack of the neurotransmitter acetylcholine, which helps in the release of digestive enzymes. The Mayo gastro recommended he take Mestinon, which helps the body hang onto the acetylcholine, but Mestinon can cause NAUSEA. So, with the approval of our local gastro, he takes digestive enzymes. He also takes a probiotic and things like calcium supplements, since dairy can make him sick. He is now 12 - still very thin but full of energy and so happy to NOT feel horrible anymore!!! Note: we made many trips to the emergency room when Ted was a baby and toddler due to his projectile vomiting and diarrhea. He never DID have a formed stool. He was hospitalized due to severe dehydration a number of times. Always the doctors scratched their...heads and told us, "...must be some kind of virus." Now we know he was probably reacting to the gluten in breastmilk or, as he grew older, to other foods containing gluten.

Here's some data from Digestive Wellness by Elizabeth Lipski re GI symptoms and dairy:

"Some people have celiac disease without symptoms, while others can be very ill. Symptoms are characterized by recurring attacks of diarrhea or constipation. abdominal cramping, gas, weakness, and steatorrhea (gray or tan fatty stools). Less common symptoms are arthritis, fatigue, brain-fog, bone pain, schizophrenia, fibromyalgia, depression, and epilepsy...anemia is common in people with celiac disease...Other long-term consequences of celiac disease can be diminished calcium reserves and poor fat-soluble vitamin status, which includes vitamins A, D, E, and K. About half of all people with celiac disease are also lactose intolerant at the time of their diagnosis. Lactase, the enzyme required to split lactose, is manufactured at the tips of the villi. Because these villi are damaged in people with untreated celiac disease, their bodies can't manufacture the lactase. Once people have gone onto a gluten-free diet and the intestinal lining is repaired, a few will be able to tolerate dairy products. Remember that about 70 percent of us are lactose intolerant, so many people with controlled celiac disease will still be affected by dairy products."

Karen

[pakisa100]

Because you say that you think you have IBS, I am assuming that your 'symptoms' never went away.

This leads me to believe that you were either being accidentally glutened or that your diet needed to be more strict than 'just gf' in order to heal.

We needed to remove many things from our diet to heal properly... and everyone knows, the older you are, the longer the time to heal damage. Even my 3 year old son was still having issues (*d* whenever he ate certain foods like tomatoes, etc.) . Once we removed all skins and seeds, cooked all foods for the first while and removed all other reactive foods by doing a strict elimination diet (starting with soup broth only and then adding things back slowly).... after a year, his diet (ds was our biggest reactor) expanded further than it had ever been (without the following result of *d).

I suspect you have other foods that needed to be removed in order to heal. This has been documented in scientific studies... esp. of children but of course would apply to adults. I remember them specifically because one little girl had to take chicken out of her diet, which I thought was extremely odd. Nevertheless, the conclusion said that she was successful.

HTH