Diagnostic Journeys

[jcc]

Have we all been waiting for this???? Please add your story!!

I am so sorry we have lost our original because some members have moved on years ago already... who had really important testimonials... Like Rita, CarryOn, and others. If they still lurk, I hope they will be moved to repost. But... for those of us who remain and those we will meet in the future... Let's get started! Please tell us about your diagnosis and why you are gluten free~ or if you are still in diagnostic pursuit...please share where you are in your journey.

Cara

[jcc]

Diagnosis: Self Diagnosed Gluten Sensitivity
Based on: isolated positive antigliadin IgG antibodies and symptoms
Genetic Type: Double Copies HLA DQ1
Manifestations among family members:
Neurological, Gastrointestinal, Autoimmune Disease (thyroid, pernicious anemia), Nutritional Deficiency, Skin problems

My daughter J. started having diarrhea rather abruptly, around age 3, with bright florescent green, foul smelling, and explosive episodes several times a day. The doctor suggested this might be rotavirus, but it would have to run its course. Weeks and months passed, eventually years. The diarrhea had phases of severity, but in the end she was having five-six explosive episodes daily for about a year. I was first told that intestinal viruses often last months, and later to eliminate dairy (which helped some), and next time to eliminate juice (which she didn't drink). In the end she was also having terrible red rough hand rashes, a recurring mosquito bite like rash with vomiting, and fleeting neurologic episodes (which were starting to happen weekly to daily) of leg weakness, leg drag, staggering, eye lid drooping, lazy eye, and periods of a limp body “rag doll” fatigue. She had a couple episodes each of slurred speech, difficulty swallowing, and loss of bladder control. Nobody noticed, not even me until later, that her weight had dropped on the charts from the 75% to the 25% over two years. She was pale, and had dark purple circles under her eyes. Her happy go lucky nature had turned irritable.

Finally, in May of 2001, our pediatrician recommended we see a GI, who did think of CD. The blood tests were run, although IgA deficiency was never ruled out. My daughter had only a positive antigliadin IgG of 30, and a biopsy was recommended by the GI even though Celiac Disease was considered an “unlikely” possibility.

After careful consideration, and discussion with the pediatrician, we opted to skip the biopsy for several reasons. We knew her blood results were a weak indicator they’d find damage on biopsy. Since I had read the work of Dr. Hadjivassiliou, thanks to BrainTalk Communities Neurology forum, I knew there was at least a chance that gluten sensitivity could manifest neurologically without evidence of intestinal damage. So, whether a biopsy showed negative or positive became rather inconsequential to us. We were prepared for a gluten free diet trial either way.

We chose to spare her the procedure (not to mention the expense) and decided to let the diet to speak to us. Within a week we saw about an 80% improvement with the diarrhea...episodes dropping from 5-6 down to 1-2, and much less explosive. Eventually, after months, her stool became formed. The neurological symptoms completely resolved over several months. She has had no more episodes of unexplained rashes/hives or vomiting. We have also found she needs to be cow's milk free in order to stay GI symptom free.


The discovery of something called Gluten Sensitivity/Celiac Disease led us to a probable answer for my daughter K's many years of symptoms. She is now a young adult, but her symptom list during her childhood years includes: joint and bone pain, rashes and hives, mood swings, frequent general illness, sinus and throat infections, sleep disturbances, stomach aches, dry eyes and mouth, frequent canker sores, defective dental enamel, muscle spasms, back pain, seizures, chronic asthma, and a variety of abnormal labs along the way including abnormal high alkaline phosphatase, abnormal high CK, abnormal low potassium, repeated abnormal low ALT/AST (which can indicate B6 deficiency), and some other borderline low values, ...but none abnormal ENOUGH to raise concern.

K also had only an isolated positive antigliadin IgG of 33. Her Total IgA was slightly below the lower range limit. We followed through on the biopsy for her because she refused the diet without "proof"~ and that we did not get. Her biopsy was normal, and a second expert opinion agreed.

Her GI insisted a gluten free diet was not necessary because her biopsy was negative, and that all the information I had read on gluten related neurological disease presenting before or without biopsy evidence of Celiac Disease was purely speculative. I believe the word was 'poppycock'. She refused to even glance at the literature I brought with me.

K’s stomach sample did show lymphocytic infiltration / indication of minimal chronic gastritis, never mentioned by her doctor, but on the report. My searches led to information that this condition is associated with, but not diagnostic of, gluten sensitivity. It is also associated with h. pylori, which had been ruled out in pathology.

For those unaware, seizures can possibly be a neurologic manifestation of gluten sensitivity, due to nutritional deficiency and/or immunological factors. I suspect my daughter’s seizures were related to B6 deficiency. Shortly after the onset of her seizures at age 12, I received a tip from an Internet acquaintance that my daughter may benefit from B6 or magnesium. So, I tried it, and her seizures seemed to improve more than they had with Depakote alone. Her mood swings and sleep disturbances improved, as well.

A few years later I learned about a little known and somewhat controversial condition called Pyroluria (http://jccglutenfree.googlepages.com/pyroluria) from another Internet acquaintance. So many of the symptoms fit for daughter K, that I decided to pay the $60 dollars for the diagnostic test, and she tested positive with a moderately high result. Pyroluria involves primarily a B6 and zinc deficiency, and is associated with mood disorders, seizures, and gluten/casein sensitivities. The pieces just keep fitting.

I was diagnosed hypothyroid in 1989, and B12 deficient (http://jccglutenfree.googlepages.com/b12deficiency) in April 2000 after 3-5 years of progressive neurological and other symptoms (http://jccglutenfree.googlepages.com/b12deficiencysymptoms). It took three years and eight specialists before one thought to check my B12 level, and thankfully he was a neurologist who realized that a low normal B12 can cause problems. I have had a lifetime of GI issues including frequent bouts of gastritis and frequent on and off episodes of diarrhea. I have also had many abnormal labs including repeated abnormally high alkaline phosphatase, and isolated occurrences of border low albumin, abnormal low calcium, abnormal low potassium, high bilirubin...but again, nothing abnormal enough to raise concern. Most never mentioned to me. All of the Celiac and Pernicious Anemia related antibodies were negative for me. I have had a highly positive anti-TPO (thyroid) and a low positive anti-ANA (likely due to the autoimmune thyroid disease).

I went gluten free primarily to support my youngest daughter on the diet, and because I felt it was likely in my best interest given my personal and family health history… and it certainly wasn’t going to hurt me. Frankly, I can't imagine eating something that was doing such harm to my children. We keep a gluten free home, and while my husband still eats gluten away from home, he has cheerfully supported our gluten free existence.

I had many improvements with B12 and other vitamin therapy one year prior to beginning a gluten free diet, but I have enjoyed additional improvements since. After a lifetime of nagging GI problems, they are all gone! No more reflux, no more pain after eating, no more bouts of diarrhea, no more excessive gas and bloating, and no more blood in my stool. My skin is better. My seasonal allergies are better. No more nagging joint pains. I haven’t had a sinus infection in three years! This is great news from someone who once suffered chronic sinusitis. My labs have normalized. I guess it’s working for me. I still have some memory and concentration problems that have not completely resolved since my B12 deficiency diagnosis.

In March 2003, purely out of curiosity, I decided to do the genetic testing through Enterolab for myself and my youngest daughter. I was just sure with a heavy family history of autoimmune thyroid disease, a father with insulin dependent diabetes, and two gluten sensitive daughters that we would carry the main Celiac genes. WRONG!! We both carry double copies of HLA DQ1~ a gene that shows predisposition for gluten sensitivity, but only rarely Celiac Disease (1-2%), according to Dr. Fine. HLA DQ1 is also the genetic type that Dr. Marios Hadjivassiliou has found in 20% of his gluten sensitive neurologic patients, with the remaining carrying the DQ2 or DQ8 gene seen in Celiac Disease.

I should probably mention somewhere here that I also have a young adult son. He had a childhood of chronic ear infections(ear tubes), lung infections, asthma, significant environmental allergies (allergy shots), and lots of unexplained rashes and hives.

Cara

[aklap]

Ok - here's mine as it was posted back then. I am moving up in the world tho - I was on Page 2 ;)

Official Diagnosis: Idiopathic Sensorimotor Neuropathy, Chronic Reflux, High Blood Presure, Diverticulosis
Self Diagnosis: Gluten Intolerance
Manifestations: Gastrointestinal and Neurological
Gluten free since: Sometime in May 2003
Other intolerance’s: none know at this time

My journey to Gluten Free land has been a pretty smooth road compared to most of you. I do feel lucky. My heart goes out to each of you that has suffered the trials & tribulations far longer and much worse than I have up to this point.

Oct 2001 - After a round of Prednisone & Vioxx to clear up a gout attack, I was having trouble with major reflux, excessive gas & abdominal pains. For a few years previous, I had been experiencing minor reflux and excessive belching on and off - usually connected to food I've eaten - those belonging to the greasy & spicy food groups - some of my favorites!!!

November 2001 - I had had enough and went to the doctor. It was dx'ed as Gastritis secondary to the Prednisone & Vioxx and given samples of Nexium for 1 week and then placed on Prevacid. The Nexium helped almost immediately! But after awhile...I started have problems again. I was having problems w/ nausea, flushing - at the time I was blaming the Prevacid. Started doing research on my own as to my gastro problems. Found Gastro board at www.medhelp.org

December 2001 - Still having gas & abdominal pains. Blood tests, ultrasound & Upper GI series were done. Blood tests were all within limits. Ultrasound conclusion: fatty infiltration of the liver. Upper GI conclusion: Reflux, distal esophagitis, duodenitis. Started a food journal

June 2002 - Registered on MGH PN board (now www.Braintalk.org)in effort to find out nature of my numbness & tingling. Stumbled across posts by JCC (Cara) about gluten related PN and other symptoms. She emailed several articles to me. Thanks Cara, you GF Goddess you!!! :)

October 2002 - Still having gastro problems. Have lost 28 lbs at this point. Numbness & tingling in feet & hands now becoming worse. Visited PCP he did basic sensory, reflex & position tests. He suspected PN and scheduled an EMG. After much begging, B12 & serum folate blood tests were done by PCP. Blood test were within limits. End of Oct I was feeling overall quite ill (chills yet flushed, nausea, shaky, lightheaded). Extremities are hot & tingly. Concentration & focus are foggy and difficult, lightheaded. I can remember laying on the living room floor, covered up, shivering, feeling very ill wondering what was wrong - expecting to die...after eating a can of clam chowder and a pile of soda crackers. It was a very scary experience!! A comprehensive metabolic panel was done. All within limits except Amylase (a pancreatic function) was high normal. Chest Xray - no abnormality found. Finally got referred to Gastro Doc after an angry visit to PCP. Took food journal to Gastro Doc. He briefly looked at it and dismissed it.

November 2002 - Still losing weight. Had EMG performed. Found mild to moderately severe sensorimotor polyneuropathy. EGD & Colonoscopy performed. Colo was done only due to my request. As requested a couple of biopsies were done for celiac. Villi was normal. EGD conclusion: Mild chronic inflammation. Colonoscopy conclusion: Found and removed 25 cm polyp - benign. Still doing research on my own and seriously starting to consider a gluten free trial.

December 2002 - I've had it!! I've had enough of feeling like $h^t!!! I decided to start a gluten free diet. I decided that it would be best for me to start reducing all the big offenders first - bread, pizza, crackers, cookies, etc. If I felt improvement, I'd continue working my way down the list. On the neurological front - I had been through all the usual blood tests to determine the cause of my PN. They were all negative - imagine that!! So I thought that going GF might also help with the PN. Still losing weight

January 2003 through April 2003 - During this time I went back & forth between eating gluten and not eating gluten. Was it all in my head or was it really a problem? After getting to a point where I was feeling pretty good - I'd eat small amount of gluten and monitor myself to see how I felt. The amount of gluten I was consuming did not bother me...so I thought "Ah Haaa - it is all in my head!" and that I'd try eating enough gluten to do a gluten challenge. If I remember correctly I had to consume about 30g of gluten (1 bagel) for about 5 weeks. Well, I lasted about 5 days before I started having problems again. Needless to say, I called off the gluten challenge.

May 2003 to March 2004 - I decided to continue on the gluten free path. With continued research, I was slowing weeding out all forms of gluten. Making mistakes along the way. Buying food, thinking it was safe...double checking it and then giving to the food pantry. This was driving my wife nuts. I don't know who this diet is harder on, me or her having to deal with my issues. Eating a certain food thinking it was GF when in reality it wasn’t (For those of you at home...repeat after me "Twizzler's are not GF"). Stomach pains have vanished, no burping or expelling gas by any other means, no heartburn. I have not been back to the doctor with those type of stomach issues or abdominal pains since. I was dx'ed in Nov 2003 with diverticulosis (pockets in my colon where "stuff" can get caught). This landed me in the hospital for 1.5 days with a major infection. My neuro problems - that's another story...My neuro symptoms seemed to decrease or almost disappear for a number of months. As of Nov 2003, I felt that my symptoms have been spreading to unaffected parts of my body & worsening. I'm beginning accept the fact that stress is magnifying my symptoms. It's not that I don't know that stress is a factor..because I do - I'm just starting to accept & acknowledge it. This is difficult for me. I will be making a concerted effort to deal with my stress levels. My weight loss has stabilized at this point...having lost 40+ lbs.

2004 and beyond - This is a work in progress. I have had a chance to update it yet.

Commentary:
This has been a very interesting journey to say the least. Would I have chosen it? No. Do I like it? No. But since I can not do a lot about it, I try to make the best of it. As strange as this sounds, I have found many positive things. I had to look for them, but they are there. As long as I celebrate & embrace the positives - I'll be alright! We all will.

I would recommend keeping a food journal for anyone who is just starting out on their GF journey. I also had a rating system as to how I felt overall (10 normal - 0 half past dead). Luckily I didn't have too many Zero's. I felt it would help chart my progress/decline. Before this I was not a sick person. I rarely went to the doctor - once a year to get my BP meds renewed and that was about it. One of the things that I learned through this is that the medical institutions definitely do not have all the answers. At least for people like us that maybe fall "outside of the box". I don't blame them for not having the answers, I do blame them for A) Being closed minded about other possibilities. B) The seeming lack of interest to find out about it. Actually I felt very alone and helpless - no one had any answers, no one could offer any real help. Except those of you on this board and the others like it!! I suspect that'd I'd still be suffering if it weren't for all the kind and good hearted people that frequent these places. So...to all you out there I offer my utmost thanks & gratitude for making my life better again!!! I try to give back what I have received, but sometimes all I can offer is maybe a smile, a chuckle, or hopefully a pants wetting laugh!!

God bless & Good Luck

[RathyKay]

I never got around to posting our story on the previous thread. Al, you inspired me to get on page 1.

Tom was born on time after an uneventful pregnancy and we came home from the hospital. Two days later we took him back as he wasn't eating and seemed lethargic. He was diagnosed with severe hypoglycemia (low blood sugar... his was 6... VERY low). He began seizing not long after they rehydrated him and got his blood sugar up. He seized for 24-48 hours and was placed on phenobarb. It took 12 days before he was able to regulate his blood sugar and come home. He was only on phenobarb for 3 weeks, and then we were given a clean bill of health.

At his NICU follow-up check-up at 5 months, we were told he was delayed. It was a shock to us. He did not start having seizures again until 15 months. A CT scan at the time was clean. His seizures were simple partials, and we started him on Tegretol. Tom has always been very well controlled on AEDs. Of course, at that age, kids grow quickly and meds need to be increased fairly regularly to keep up. I began to suspect that it was yogurt that was triggering his seizures. Our neuro laughed. He could see dairy as a trigger, but not yogurt. At this point, I don't think it was yogurt so much as the total quantity of dairy consumed on days he had yogurt versus non-yogurt days.

A few months before he turned 3, his seizures generalized to myoclonics. That blew my yogurt theory out of the water. Because of the change in seizures, we had an excuse to have another MRI (hadn't had one since NICU days). This is when we found the damage from the hypoglycemia. This is also when I began more searching for answers and eventually found BrainTalk.

Not long after I joined BrainTalk, DogtorJ began posting. While I sort of kind of thought of him as a nut (harmless nut), he did remind me of my yogurt theory. I did some reading (online and library)... mostly on autism and gluten-free / casein-free. Tom is not technically autistic, but he does have some autistic tendencies. Some others responded positively to DogtorJ's posts, and then a woman at church gave witness. I missed most of it, but got there in time to hear that her son had epilepsy (which I didn't know). At the end, she mentioned praying to God to give her a sign, and to make it neon. I decided this must be my sign. We would try dairy-free with Tom and prove everyone wrong. Hah!

Bec (on Child Neurology) had posted that you have to go dairy-free for 6 weeks to get it all out of your system. We did Tom for 8 weeks before trying dairy again. Two weeks into our experiment, he had withdrawal seizures (very mild seizures, and I didn't realize they were dairy withdrawal until much later). When we tried him on dairy after 8 weeks, he was soooo hyper. No seizures, but clearly a reaction. I hadn't told his teachers at school about the experiment, and they grilled me when I picked him up that day. "What did you give him?! He could not sit still! He was throwing everything on the floor!" etc, etc, etc.

It took awhile for me to slowly start weaning him off his meds. Mr. Kay made comments about how much better Tom seemed to be doing, and I fessed up about reducing his drugs. Mr. Kay then insisted we talk to our neuro about it before going any further. At our appointment, our neuro said we could do it, but he thought we'd see more seizures if we did. He gave us a weaning schedule (which made us feel better), and we started reducing.

We didn't get too far, when Tom had a minor seizure (2 minutes) one night after supper. It was a simple partial. All of his seizures since going dairy-free have been simple partials. To me, since he has brain damage, partial seizures make sense. My theory is that dairy gave him a "milk-buzz" that caused his seizures to generalize.

Anyway, we were supposed to reduce his Keppra again that night, and I post-poned it. A week later, we had the same meal for supper, and again a minor seizure. So... I decided we would avoid red beans and rice (the culprit). I waited a little longer (2 weeks) and then decided to reduce his meds again. Mr. Kay once again commented on how much better Tom was doing, and I fessed up again. We continued weaning him, but did it at a much slower pace. We saw tons of good developmental progress and awareness during all of this.

The new school year started, and I put Tom in a regular ed preschool, along with special ed kindergarten. At preschool, I was very concerned with what they were serving at snacktime, and I made sure to read the labels every time. One day, organic Graham crackers were served. I was used to the regular ones, which are dairy-free. The organic ones, were made with brown rice syrup, which seemed like an unusual ingredient to me. That night, he had the worst seizure I've ever seen. We used Diastat for the first time, and ended up calling 911. The seizure ended before they showed up, and we decided not to go to the hospital.

We went to see our neuro that day (seizure was at 2 am). I'd been wondering about whether we should try gluten-free. Mr. Kay was against it. I was having nagging feelings, and I knew it would be a royal pain to do, so I asked our neuro about running the blood tests. He was willing to do it, and I even showed him the Gluten File to make sure he wrote up the right tests. (He does scoff at my theories, but he's been a really good neuro for us.)

The blood tests came back negative. By this time, however, we had talked with family and it dawned on me that my MIL is allergic to rice. Red beans and rice (2 seizures, and that was with brown rice), and brown rice syrup (1 seizure). I'm a little slow sometimes, but that seemed pretty obvious to me. So... no more rice.

Two months later, we were at my in-laws for Christmas. My FIL made coconut cake for dessert. It was the only thing that Tom ate that he hadn't had in a long time - pre med-free days. (Tom is a picky eater and I tend to make chocolate desserts.) I noticed he did a lot of drooling afterwards (which is an allergic reaction). And, at 2 am, another fairly nasty seizure. Scratch coconut from the list.

I decided at this point, that I wanted to know for sure about gluten, so I ordered the gene tests from EnteroLab. I realize that having the genes doesn't mean they're activated, but with all of Tom's issues, if he has them, I was sure they were active. He has two different versions of the DQ1 gene... the neurological genes.

So... I tried him gluten-free (February, this year). He has done very well, and we returned to the "guess what Tom did new today?" days that we saw during the Keppra wean. Even Mr. Kay has admitted that it's been a good thing. Tom's picky eating habits have greatly imroved with GF... he's still picky, but he's eating many more vegetables and whole foods.

This summer, we tried the girls GFDF. For Samantha, dairy upsets her stomach, making her nauseous when she goes to sleep. For both, gluten gives them diarrhea (which was never a problem before going GF), and makes them grumpier / more aggressive. For me, colds are not nearly as "snotty" since going DF. GF helped me lose 15 pounds, which was a good thing.

We have recently taken Tom to a DAN! doctor (Defeat Autism Now!). GFCF is the "autistic diet" and since Tom has done well on it, I want to know what else we can do to improve his life. The nice thing with DAN! doctors is they believe in GF without celiac. We drew a lot of blood, as well as urine, stool and hair samples for testing. We'll find out in mid-November what the results are. I'm especially interested in the ELISA IgG food intolerance results. I'm looking to those to tell me which other foods we should avoid for Tom as potential seizure triggers. The other tests are looking at vitamin / mineral blood levels (should we increase his supplements?), malabsorption, heavy metal excretion problems (vaccine preservative), and active viruses (whether he's fighting any bugs... particularly from vaccines). The last three seizures Tom had were due to illness (2 fever and 1 stomach bug... lots of vomitting). I'm hoping to improve his immune system so that he doesn't catch every bug and then risk a seizure.

[Zonulin]

Looks like our story is going to be on Page 2, but that's okay because we're all really on the same page!! ;)

Ted was born chunky and healthy (nearly 9 pounds). I had happily been chowing down on gluten both during pregnancy and while breastfeeding. When he was about 6 months old, he had his first projectile vomiting/diarrhea incident. His diapers literally blew off, the force was that strong. These stools also contained blood, so we spent a terrible couple of days in the hospital to make sure he was all right. Doctors finally diagnosed him as having "some kind of virus." Since he was born, Ted had always had mushy stools - never formed. No one thought this odd. The projectile vomiting/diarrhea reoccurred at least twice a year until he was about 4 or 5. Always doctors diagnosed it as "some kind of virus," and he was given intravenous fluids and/or suppositories to rehydrate him. When he began eating solids, his favorite foods were those thin straight pretzels and Goldfish Crackers :eek: He remained at a good weight on the pediatrician's growth chart, so we were not overly concerned. We were told his "mushy stools" were "hereditary."

In May 2003 when Ted was 9, he began complaining that he "didn't feel well." This progressed to vomiting several times a day/night. He told us he felt the way he did when he was "in an airplane going through heavy turbulence" (we were on a bad flight to Chicago once). And he felt this way ALL the TIME, not just after eating. It might get WORSE, but it never got better, never went away. So his symptoms at this point were constant nausea, vomiting and weight loss. At the beginning of May 2003, he weighed 65 pounds; by the end of May, he weighed 57. He went from being a thin child to being an emaciated one. Then began the nightmare of seeing doctor after doctor - testing for everything from papilladema (some terrible brain disease which requires a shunt) to a brain tumor to a "psychological" problem (he was told he had a "specific phobia" because he carried around a little bowl to catch his sometimes constant vomit - "fear of vomiting on self and/or others?") :mad: We saw ENTs, allergists, eye doctors, multiple gastros and pediatricians...a total of 22 doctors over a 2-year period. The gastro who performed the endoscopy told us afterwards he saw "dark patches" on Ted's stomach which he thought were "probably stomach cancer." Then we had to wait an entire MONTH for the biopsies to show it was NOT stomach cancer :mad: . :eek:

The only testing which anyone recognized as "significant" was his Antigliadin IgG antibody test; 69 with the highest normal range as 20. I began searching the Web in my "spare" time (between vomiting bouts), tearfully and fearfully. I stumbled across Braintalk - EUREKA! I want to cry when I remember the huge relief I felt, realizing that this may be IT!! I began pushing for specific tests, and we discovered over time that Ted had H. pylori (a bacterium that lives in the stomach lining and ultimately causes stomach cancer, which runs in my family), was IgA Deficient (affecting the mucosal membranes), was not absorbing nutrients (Enterolab), had an ELISA reaction to 25 different foods, had a very compromised immune system (immunoglobulin panel all way below normal), and had several "autonomic anomalies," including a lack of acetylcholine, which is necessary to release digestive enzymes (the last diagnosis was made at the Mayo Clinic in Minnesota in the summer of 2005). There is stomach cancer, ulcerative colitis, celiac disease and diabetes in Ted's family history. A history of people with vulnerable mucosal membranes (vulnerable to things like H. pylori and gliadin), which triggered several problems which resulted in that constant NAUSEA.

No one could rid Ted of the terrible nausea during those two years UNTIL we found an acupuncturist recommended by one of the many doctors we saw. He felt a "tiny bit better" after the first treatment; by the 5th treatment, the nausea was so much BETTER. By that time, he was taking digestive enzymes and a probiotic and of COURSE had eliminated gluten and casein.

If it hadn't been for Braintalk, we would probably be in a very ugly place right now...Thank you a thousand times over to Cara and Anne!! They are, quite literally, lifesavers!!! :D And for the tearful and fearful parents out there - you do have to PUSH and PUSH and PUSH for answers - PUSH until the nurses begin to flee from you in terror and the doctors steel themselves for your visits. I had always been this "nice" and "passive" person who hated commotion and conflict. Let me tell you, those days are so OVER when it comes to the life of your child ;) :D

Karen

[annelb]

Am I too late for page 1?

Here is my story as it was posted on the old forum. I will come back and update and maybe steamline it too.
Anne

We all need to share our stories - me too.

It was my search for a way to stop the rapid progression of my idiopathic small fiber peripheral neuropathy that brought me to the Braintalk forums. It was here that I read that 5-15% of peole with IPN have CD. I was also experiencing hypothyroidism and an overwhelming fatigue. Whe I told one doctor about my fatigue his answer was "What do you expect, you are old." I was only 60. I asked both my PCP and my neurologist to test me but they both turned me down. They both told me that I should try a GF diet if I wanted to but they saw no reason for testing. Disappointed, I went back to the internet for help. It was here that I found out about enterlab. I then searched for confirmation that Enterolab was a reliable test and found it at www.uams.edu/celiac This is David Nelsen's site. He wrote "gluten-Sensitive Enteropathy: More Common Than You Think http://www.aafp.org/afp/20021215/2259.html

On Aug 7 I bought a fresh bagel, my favorite bread. That evening I slowly ate the whole bagel, savoring every bite. I wanted to be sure to put the experience of eating a bagel into my memory. If it was going to be my last bite of gluten, I wanted it to be a memorial experience. I started my GF lifestyle on August 8, 2003 the day I received my results from Enterolab.

Gluten Sensitivity Stool Test
Fecal Antigliadin IgA 59 Units (Normal Range <10 Units*)

Stool Test for Autoimmune Reaction to Tissue Transglutaminase
Fecal Antitissue Transglutaminase IgA 53 Units (Normal Range <10 Units)

Stool Test for Small Intestinal Malabsorption
Microscopic Fecal Fat Score: 328 Units (Normal Range < 300 Units)

The first 4 days of the GF diet were horrible. I felt worse, not better. Is there a period of withdrawal? By one week I was beginning to feel better and by 2 weeks there were definite positive changes going on in my body. At 3 weeks I saw Dr. Nelsen (he is now my PCP). Neither he nor I saw any reason to test further. The positive physical and mental changes were enough proof for me to follow a strict GF diet.

POSITIVE CHANGES: No more fatigue. Joints don't hurt. Back pain is almost gone. Muscles feel stronger. Skin is less dry. Eyes are less dry. Increased salivation. GERD is gone. Esophageal spasm is gone. Less gas and bloating. TSH was actually lower at last testing without increasing my Synthroid. Peripheral neuropathy has regressed as I am able to walk without limping and sleep with my feet under the covers. I am not waking up in the middle of the night crying because of my foot pain. Mood is much happier and brighter.

NEGATIVE CHANGES: None!

I have been so excited by my healing that I told Dr. Nelsen that I wanted to start a support group in Central AR. He started things rolling with a talk at the local Wild Oats. There are now (March 2004) over 50 people in the group.

Before starting a GF diet I felt so bad that I thought I was dying. Four yrs ago I had bypass surgery on my heart. I thought my heart was killing me. Thank you all for helping me discover that it was gluten that was killing me.

Update at 9 months GF
I continue to feel like my health continues to improve. This is the first winter that I have not had at least two colds. The small, not itchy, bumps on my back and arms have disappeared. The constant ache in my lower abdomen that I always thought as something that women have to put up with has completely disappeared. My peripheral neuropathy continues to heal ever so slowly. I am amazed at the toxicicity of gluten. I don't think that anyone should eat the stuff.

Update at 18 mos GF
This is the best 18 months that I can remember. My energy levels are great. I can't remember ever feeling so well. My depression is gone - most days I feel as though I have music in my brain. That is the only way I know to describe the happy feeling that I have. Looking back I now believe that I have been depressed all my life. The dark thoughts are gone, just completely gone. How amazing!

My feet remain numb and uncomfortable but not painful. I hope that they are continuing to heal and that I will see more change in the next year.

2 years have gone by since I started the GF diet on August 8, 2003. During the past year I tested with York Lboratories and tested very reactive to yeast and egg white and mildly reactive to turkey and vanilla. Going on a low yeast diet has made the GF diet seem simple. There are no absolute guidelines for yeast reduction and yeast products unclude anything fermented. The list of food involved is very long. Egg white is also a tough one.

I have not had any other big changes in my health but I continue to feel well and have energy to enjoy life. All of the positive changes mentioned above have continued. My feet are still numb and mild pain persists but I do not need pain meds for this. I remain hopeful that my feet will heal more with time. I do not feel that my PN is any worse and that is a big plus.

[diamondheart]

This is the same story as I've posted on NeuroTalk. I fall into the category of gluten sensitive.

About 7 years ago, I was eating wheat 3 times a day. I had Cream of Wheat for breakfast, a sandwich for lunch, and pasta for dinner. I thought I ate so healthy. I noticed that I started having a lot of loose stools and diarrhea. Food came out the same way it went in. I ignored it until I started getting weak. I did the CDSA test thorough Great Smokies Lab (now Genova), and everything was negative. My doctor then wanted me to do an elimination diet, which seemed impossible at the time. My chiropractor offered to do muscle testing for food sensitivities. That seemed much more reasonable and easy. Gluten was the major offender. Every gluten grain was a loser. Some types of rice were too, but not all tested poorly. All the other major allergens at the time were fine.

I cut down on my gluten a lot, but still saved my cheats for cookies and desserts. My digestion also got better without the gluten. I did this for years, until last September when a doctor wanted to do surgery on me to remove uterine fibroids. I embarked on a journey to heal my fibroids naturally. I again tried muscle testing with an acupuncturist. Dairy, corn, wheat, spelt, oats, and quinoa all tested negative. I cut them all out. It wasn’t easy, but I was desperate. Strangely enough, rye, barley, and kamut tested ok. I still avoided rye and barley, but tried the kamut, which proved to be a loser.

This February, I saw a talk by a dietician on gluten sensitivity and celiac disease. She had a list of diseases that have been linked to gluten sensitivity, including some in my family – Asperger’s syndrome, Sjogren’s syndrome, and lupus. She also gave a reference to a lab that tests for the genes for celiac disease & gluten sensitivity called Enterolab. My aunt had told me not long before that that her chiropractor had recommended that she give up gluten as part of her treatment for her Sjogren’s syndrome and lupus, and she felt better when she didn’t eat it. Because I was worried a genetic link, I looked up Enterolab on the internet and ordered the gluten panel. All my results were in the normal range for gluten, casein (which I seem to be ok with, just not the dairy), and malabsorption. This was not surprising since I had been off gluten and dairy for 7 months. However, I had two identical copies of this mysterious DQ1 gene (HLA-DBQ1*0501,0501) that’s supposedly linked to gluten sensitivity. I started researching it on the internet, and found BrainTalk. I asked questions about DQ1 genes, and people were telling me their stories about their experiences with the DQ1 genes and how it causes trouble, especially neurological problems. I had found the right place.

I cut out all hidden forms of gluten, but I was still having digestive problems. I’ve since found out I’m intolerant to soy and most nuts and seeds. Pine nuts seem to be the most tolerable. I also found out that I have bacterial dysbiosis, and a low SIgA. So, now I’m wondering if I’m IgA deficient? I wouldn’t be surprised if I am, as I had a lot of colds and ear infections the first two years of my life.

There are a lot of foods that I can’t eat now and going out to eat is nearly impossible. However, there are silver linings in the clouds. I eat A LOT better than I used to. I cook almost all my food, or I get it from Whole Foods, which seems to be one of the few places I can tolerate prepared foods. So, I’ve become a better cook and have found lots of good new recipes. I don’t have to take as many vitamins because I’m either absorbing my food better or I’m just eating more nutritious food in general. Also, I don’t think about suicide anymore and I’m rarely depressed anymore. The suicidal thoughts were not anything serious, but more like dark thoughts I learned to recognize as something annoying and not anything to act on. One more thing, I seem to have less problems with muscle pain in my back and neck pain. I have some arthritis in my lower cervical vertebrae, and I had been looking into ways of treating it with diet along with everything else I had been trying to do for years. I’m only 40, but I have had some serious muscle spasms and neck pain since I was 27, which is related to my scoliosis, but exacerbated by diet, I believe, as well.

I have days when I question if I’m really intolerant to gluten and if the whole DQ1 gene thing is significant. I wish there was more research on this, but until then, I’m not taking my chances!

Claire

P.S. I still had to have the surgery to remove the uterine fibroids this April, but that's another "Diagnostic Journey", probably not for this board :D .

[pakisa100]

My son, though born very healthy, only grew half of what he was supposed to after birth. He was also requiring doctors visits approximately every six weeks for simple cold viruses that hit him so much harder than other kids.

Our pediatrician kept saying she thought it was Celiac Disease. No specialist would run the test she asked for though... and so I didn't give it any more thought.

Finally, in total desperation, because he was so very ill, I created a total elimination diet (ted) for my family. (I couldn't find any medical professional to help us do this.) We thought it would rule out the possibility of food having any impact on his health. (I made homemade, wholewheat bread - no storebought; we did not eat artificial colours or flavours; we did not drink any pop; etc.)

In four days we had a brand new child, one that we had seen only glimpses of in the previous three years.

It's been six years now, on this diet we've all become healthier. No more headaches, bone pain, muscle spasms, diarrhea, constipation, heavy dysmennorhea, mood swings, and more...

Presently we are gluten free, dairy free and low on grain.

We did SCD for almost a year but altered it to be lower in nuts, no seeds, so skins, no nightshades, no lily family, no kiwi, no fermented product. (Because these things had all caused reactions during our ted.)

The second six month period on our specially tailored diet brought one year's bone growth in sixteen weeks.

The only question now is, is he a celiac kid, gluten sensitive kid, wheat allergy kid or and EE kid? The answer really doesn't matter though because the treatment stays the same.
__________________

[pakisa100]

We were all very different but still, each of us showed vast improvements. I will come back and fill this in... soon... I hope.

I've reserved this space just so it will be easy to follow how the whole family went gf and df.

[Hanna]

In 2000, I woke up in the Emergency room a week after my 40th birthday having had my first epileptic seizure. All through my life, I had intestinal problems; health problems; dark circles under my eyes; difficulty getting pregnant. You all know the story so let me jump ahead. In 2003, I was diagnosed with breast cancer and a genetic disorder "Cowden Syndrome". If you take the symptoms of gluten intolerance and this genetic disorder, it is most difficult to tell which is which. Oh by the way, I had half my thyroid taken out in 1979 and the other in 1994. In Oct 2004, I was fed up with hearing that my epilepsy was idiopathic and taking three time the amount of medication I had been taking since March 2000 and decided to do my own research. That is how I found braintalk. I have been able to cut my tonic clonics to 1/5 of what they were in 2005 with 1/3 the medication. I still have my problems. I had another case of cancer this summer. It takes talent on mastectemies. My body can not tolerate contamination or being glutened after two years.

For all of you who are DQ 1 DQ1, it takes time. Do not loose hope.

My youngest son in Oct of 2004 had had 4 years of daily headaches. I had already stopped eating bread because I thought it was the yeast that had given me the trouble. What a surprise to learn about the "gliadin". In January, I asked a nine year old if he were willing to try changing his diet to get rid of his headaches. It worked like a charm. He eats gluten, he gets a headache. He eats properly, he feels good. He is now starting to grow properly.

His brother has silent symptoms but he is the one that ended up in the hospital with anemia this September. They would not recognize his celiac. He told me this weekend that when he eats gluten he feels tired and also sleeps thirteen hours. He is almost 15. He is almost 1m66. 42 foot size. I don't remember what size that is in American.

His father has gone gluten free with the family. He was surprised in August 2005 when enterolab showed that genetically he is the only DQ2 and DQ8. It is hard for him when he has to eat out because of contamination and lack of understanding. The children have an easier time. The boys are DQ1 and DQ2, and DQ1 and DQ8.

My mother has had a year of no "d". My sister comes and goes with info. Her son is officially allergic to wheat what ever that means.

My dear father who spent that last 5 months of his life on a gf feeding tube had clean smooth legs. I know at least he did not suffer from dermitis herp... at the end.

What I have found around me is that so many people have digestive problems. I have started a university course in nutrition. I would like to get a diploma.

[KnottedYet]

No official diagnosis, but "suspected celiac disease"

My whole family is riddled with epilepsy, thyroid problems, cancers, diabetes. And it is a family trait that at a certain age (generally around 40) you have to stop eating wheat. The stomach trouble from wheat also gets worse with stress, so for the last 20 years or so I've eaten less wheat during stressful times.

I went GF about 5 years ago, because the diarrhea, stomach pain, gas, and nausea just weren't worth it anymore. At the time I didn't know my eczema was related, too.

I started having trouble with symptoms pounding me when I hadn't eaten gluten about 2 years ago. My doc suspected MS. A nurse told me to try B12, because gluten intolerant folks have trouble absorbing it. The B12 helped immensely. My mom, her sister, and their uncle have all taken it for years, but I hadn't thought to ask until after I'd started.

My neuro symptoms seem to recur every spring, and this spring they came back with a vengence. Again my doc said MS. So I got an MRI. Went to a neuro who told me the MRI was good and my problems are just stress and I need more exercise. (I do triathlons, it's hard to GET more exercise!) Went to a second neuro who suspected something (pollen?) in the spring is kicking off my celiac which is in turn kicking off another genetic problem with carbon dioxide and buffering in the blood. I can hyperventilate for about 30 seconds before I get dizzy and feel like I'm going to pass out. Neuro #2 said the average person can go 5 minutes.

Who knows?

I haven't been tested for anything, it's just family trait. And I really don't think I'd be willing to start eating gluten just for a test. Maybe I'll do the genetic testing some day, when I have money or a doc sympathetic enough.

Meanwhile I can see gluten issues in my son, especially when he comes home from his dad's house.

I have noticed that when my gut is grumpy milk products are irritating. So I've eliminated the milk (but kept cheese and yogurt so far).

[RosemaryThyme]

I’m new to these boards and they have been a real eye opener. I’m just learning about gluten sensitivity. I have quite severe osteoporosis, possibly related to undiagnosed gluten sensitivity, so got tested Result: “weak positive” reading on the IgG blood serum test, with two other antigliadin tests negative. For about a year, I paid little attention because the doctor didn’t seem concerned. That's changing.

Here are most of my health problems. At least some of them may be associated with GS. Most started out as problems and I’ve found ways lessen them: supplements, meds, diet, exercise.

Main Conditions

ADHD
Allergies
Arthritis (osteo)
Blepharitis
Chronic Fatigue Syndrome at one time
Depression/Anxiety/SAD
Diverticulitis
Dizziness
Eczema
Fibrocystic breast disease
Gall Bladder disease (GB was removed)
GERD
Hatial Hernia
Hemorrhoids
High Cholesterol
High Tryglycerides
Hypertension
Migraines esp visual & vestibular
Osteoporosis
Plantar Faciitis
PMS (previously)
Polycystic Liver Disease
Rosacea
Tinnitus


Misc conditions?Brittle nails with vertical ridges, mouth blisters (perhaps fluoride sensitivity), thin hair, lip biting, loose joints (double jointed elbows, weak ankles, etc), TMJ, tooth decay, brief stabbing pain in right side at times that no doctor has ever been able to explain.

Family Hx:

Brain: Everyone in my family suffers from varying degrees/types of depression, migraines, ADHD. The migraines can be visual with no headache and or vestibular without headache. (Most of mine are this way). Dad and nephew had/have Tourette’s. My hunch: some other traits may be subclinical manifestations or something Tourette-like. I've had lip biting (often until they bleed) all my life. My brother picks the skin around his fingernails until it bleeds. We've both tried to stop. I have dizziness that comes and goes. This got worse after I took a prescription drug for cholesterol called zetia. I thought I’d ride it out but the dizziness and other cognitive problems got worse and worse. I think there may be a problem with cerebellar ataxia for some people with Zetia. I hope not me.

Circulatory: We all have high cholesterol, high blood pressure. My brother and his daughter have problems with forming clots and strokes at an early age. My cholesterol has been high despite a healthy diet and normal weight. Ditto the hypertension.

Immune: All of us have allergies, commonly seasonal, pets, dust, etc.

Skeletal/Connective: Both women and men also have severe osteoporosis, though some don't. We all have problems with osteoarthritis. I’ve had problems with plantar faciitis, despite being a normal weight. Many of us are double jointed in the elbows and my nephew has a condition of joints that are too loose. Brother and I have had rotator cuff problems at a young age. I have TMJ problems.

Digestive: Everyone in my family (mom, dad, siblings) has ongoing GERD (reflux disease). My dad died of esophageal cancer associated with GERD. There is a gene in our family for autosomal dominant polycystic liver disease (PLD), where the person’s liver forms cysts. My mother has diverticulosis. I have diverticulitis. My mother and I both have very bad problems with tooth decay. I have a hiatial hernia.

Skin: Dad had/brother has skin cancers (non-melanoma). I’ve had a number of precancers burned off. Some of us have rosacea and I have blepharitis, which may be associated. I have a couple of rough itchy spots that the doctor called exzema. My mother and I are very sensitive to things in toiletries. Any fluoride toothpaste will cause mouth blisters. We all have ridged nails that are weak.

Endocrine: My mother and I, normally mild-tempered had severe unreasoning PMS when we were reproductive age. Both also had fibrocystic breast disease. My sister had a hysterectomy due to cancer of the cervix. We are all apple shaped, perhaps metabolic syndrome.

Hearing: Mother has severe hearing loss that has gotten extremely bad as she ages. She was told that this had something to do with “white matter disease” though this was not explained beyond that. Brain problem? My mother has had bad tinnitus for years, so do I, but so far only a little hearing loss.

Sensitivities: I feel as though I’m sensitive to everything. I frequently have bad side effects to drugs.

My experience with alkaline diet: I had undiagnosed gall bladder disease and GERD, I with serious digestive discomfort. I found a website that advocated an alkaline diet. On this diet the only grains were quinoa and millet. There was also no caffeine, sugar or anything like that. Mainly fresh fruits and veggies. No animal protein. Only legumes that had just begun to sprout and were then cooked (gets rid of indigestible quality of legumes), but no soy. Lots and lots of fruits and veggies except nightshades. I used a juicer a lot.

The results of this diet were nothing short of miraculous! At first I felt spacey and foggy for a few days. After that it was like a whole new world had opened up. I felt clearheaded, happy, and healthy like never before, with tons of energy. It was like being on some kind of drug! (Gall stones still intermittent problem, though and I finally got that diagnosed and removed). I had been about 15 lbs overweight and the pounds just peeled off, despite eating all I wanted and not feeling hungry. High cholesterol came down to near normal with only diet (unprecedented despite "healthy" eating int he past).

I did not stay on this regimen for several reasons. First, I lost 25 lbs and was too thin and could not stop losing weight. I started eating my normal ("healthy") diet just to be able to gain some weight back. Second, it was very demanding timewise and I have a brutal work schedule. Third, once the gall bladder came out, some of the problems stopped.

After finding out about GS, I wonder if I felt so fabulous due to no gluten and perhaps some other problems with milk, cheese, etc. So, I’m ready to try diet again, but don’t want to lose too much weight.

Supplements:

SAM-e (s-adenosyl-methionine): Nearly my whole family is on this and it has helped with arthritis and depression to an amazing extent. It’s also helped my liver function tests and ADHD. If anyone has an idea why, I’d be curious to know. I also take various B-vitamins to help this supplement work, but the Bs don’t seem to do it alone. It also helps with energy and some other things. MSM also helps with the arthritis.

Profibe – this is a fiber product that brings down my cholesterol as well as statins. I couldn’t tolerate statins or zetia. I felt like I was being poisoned.

Many, many supplements: I also take a number of other supplements, really too many to even list here. I rarely have migraine symptoms due to some of them. Most of the conditions listed above are better than they were at first. Supplements make a difference, but I’d like to take fewer if some of these things are related to GS. The idea that some of them may contain gluten is freaking me out because it seems very complex to find out about this. The people at the health food store seem clueless about this so far.

Medications:

Aciphex for the GERD, but would be so thrilled to get off it. I’ve been taking it for some years now and know that this is probably worsening my osteoporosis. I also don’t eat after 5:30 at night and have the head of my bed elevated at least 8”.

Hydrochlorothiazide for blood pressure. I also cannot take caffeine for several reasons and blood pressure is one of them (GERD, rosacea, sleep probs are others). Lately I’ve been taking my bp several times a day to see what’s working as I’m also on a number of supplements for this.

Forteo for osteoporosis. My bone density is pitifully low. This drug can only be taken for 2 years, so going GF now could be a real godsend if it works to help preserve my bones. I do numerous other things as well (supplements, exercise).

Bio-identical hormone replacement for bone density. Just started this month. These are hormones customized to my current levels of estrogen, progesterone, and testosterone. I’m working with an alternative doctor who’s an MD and at my next visit I will take him some of the articles I’ve been reading about GS.

Metrogel for rosacea (well controlled). For the blepharitis (potentially more serious) I just wash my eyelids daily in the shower. Perhaps there’s a connection between rosacea/blepharitis and inflammation. Inflammation may be related to GS, I’m thinking.

This is a very long post, I know, but I’m eager to share my journey in case it can help others. It has been great to put all this together without fear of being seen as a hypochondriac and has helped me think about it myself in a way I've never done before. I forgot to add my age. I'm 61 years old.

[jcc]

Bump.... hoping to get some more entries!

[kermane]

I have cowden's syndrome. I've had overgrown gums, fibroid tumour, thyroid cancer, breast cancer. Just about everything you can get from it.

Anyhow since I was little I have had stomach problems, they ran all kinds of tests on me and said it was my nerves. I retain water all the time, even more during that time of the month. Sometimes my stomach hurts bad.

I eat healthy and workout. I eat lots of lean red meat, my periods are normal now since the fibriod was removed. They last 3 or 4 days at the most normal bleeding. I eat spinach everyday, yet I am anemic!

Now when I was younger my periods were horrible so I was anemic then. Throughout most of my life since a teen I've had bouts of anemia. I will be cancer free 3 years in August, I had both breast removed to cut out the chances of additional breast cancer.

I am wondering if it is possible I am sensitive to gluten, gildian(sp) and that causes this anemia. I also break out in weird rashes on my joints not psioriasis, the doctor said it was a reaction of my immune system.

I'm sorry for the long post but I am seeing my family doctor on Tuesday, this past weekend my water retention was so bad my ankles and feet swelled up and I am sick of retaining water! I'd say about 6 pounds of me is water weight. Anyhow I'm trying to get all my ducks in a row, so does Celiac's cause this reaction.

Unexplained anemia, I bruise easily, water retention and bloated lower belly?

Thanks