[jccgf]

Have we all been waiting for this???? Please add your story!! I will link this thread up in post #2 of the Useful Sites and Resources thread so it is always quick to find.

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. 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.


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. About six months into the gluten free diet she began experiencing a resurgence of diarrhea, and we pinpointed other problem foods including dairy, apples, and corn...although we just limit these. They don't cause the neurological problems~ just GI symptoms.

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.

I’ll spare you the trouble I had getting the appropriate tests run, but always request copies of your lab results! "Y" 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.

Y’s stomach sample did show lymphocytic infiltration / indication of minimal chronic gastritis [never mentioned to me, but found upon requesting the biopsy 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. When I reported this to her neurologist, he said, “Vitamins shouldn’t make any difference one way or the other.” After three years she was weaned from Depakote, and has remained seizure free. Of course, I cannot prove that B6 deficiency caused her seizures, but that is my hunch based on everything I know.

A few years later I learned about a little known and somewhat controversial condition called 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 in April 2000 after 3-5 years of progressive neurological and other symptoms. 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. IgA deficiency was never ruled out. I asked for a biopsy, but was denied because of negative antibody tests. 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. Thankfully, he tested negative for Cystic Fibrosis, but it says something that he was even tested for it. They settled on a diagnosis of 'mucousy kid'. He projectile vomited his first year, always full of mucous, and was a svelt 19 pounds on his first birthday. At preschool, they pinpointed his recurrent hives to whole wheat rolls and suggested we feed him cheap white bread. Little did I know then! Like me, he also tested negative to all Celiac related antibodies. My guess is he has some degree of gluten sensitivity nonetheless… and I won’t be utterly surprised if he is hypothyroid by 35.

This is as diagnostic for my family as it’s going to get~ at least in this decade. I still face skepticism by my local doctors about non-Celiac gluten sensitivity and pyroluria. I gladly accept my children's and my own "Internet diagnosis" and "Internet cure" that consists of dietary changes and nutritional supplements. Gone are my old psuedo diagnoses (and symptoms) of BPPV, RLS, idiopathic PVC’s, and GERD. It scares me to think of where my youngest daughter would be now had we not taken the gluten free plunge on a leap of faith. And it saddens me to think of how my older children's health might have been better if I had known twenty years ago what I know now, although at least they know now. Many people suffer an entire lifetime never knowing to suspect diet or vitamin deficiency might be the cause of their health problems.

Cara

[KimS]

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. [/I]

[simbalou]

I received my diagnosis in August of 2004. I am 35 now and felt fine up until January 2004 and all of a sudden (or at least it felt that way) I became extremely anemic (Iron count at 4, no storage levels) I was falling asleep at work, felt like I had to eat constantly too keep up my energy. Went to the gynecologist, she ruled out any female problems. My gyno sent me to a gastroentorologist I had a colonoscopy done and and the scope down my throat. They did a biopsy of my intestine and it was positive for Celiac followed by a blood test confirmation. He immediately placed me on a gluten free diet. It still took me over a year to get my iron levels back up.

I really have no symptoms other than fighting with my iron levels from my Celiac Disease.

[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

[diamondheart]

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

[RathyKay]

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 / BrainTalk) 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 (only "part" of the brain affected.) My theory is that dairy gave him a "milk-buzz" that caused his seizures to generalize (affect *all* of the brain.)

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 fevers 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.

[mistofviolets]

My story isn't terribly impressive or exciting.

I'm not really certain where the Gluten part even starts, so I'll just start somewhere in the beginning.

To summarize, somewhere in my early teen years eating became a bad thing. I'd been overweight...and was actually pretty happy to have bouts of sudden weight loss; though I made sure to eat extra ice cream so my parents wouldn't bug me too much. My metabolism was kicking in.

Anyways...I eventually made the connection to corn. That story is here:
http://maybeitsstress.blogspot.com/2...beginning.html

But giving up corn wasn't enough. The better I felt, the more frustrated I was that I was still having trouble. The next step was to find hidden corn.
http://maybeitsstress.blogspot.com/2006/07/journey.html

And still...I was frustrated by strange "attacks". My gut seemed to freeze up regularly. And then...well, I felt like a pinball machine. Not as bad as I'd been, and I didn't know if it was a good or bad thing. A friend kept telling me it was gluten, and I kept responding that wheat was the one thing I knew I could eat. I did NOT want to give it up. I had a barium enema that showed nothing. Shortly afterward I began feeling a razor blade sensation after some meals. And my throat felt choked up and itchy after certain meals. I finally got to see an allergist.

The allergy testing did not show a problem with wheat. But, the dr reccomended I give it up and if that worked we'd run the celiac panel. He wanted me to give up all grains, which I eventually did. But I wasn't very careful with cross contamination. I switched to spelt, and eventually, dragging my feet, gave that up too. There was definite improvement. My gut seemed to be working again, though I was very aware of it. I went back to the dr for the celiac test after about a month of GF.

I tried to eat some gluten (oatmeal, spelt bread) before the blood test, but it made me sick. I figured that would be enough to trigger something, but it didn't. And I was feeling really bad, cramping, nausea, sharp pains, urgency/incontinence (My very worst nightmare) I started to think it wasn't really gluten, and being sick...just ignored CC. I lost nearly a quarter of my body weight in just a few weeks, they suspect I'd developed pancreatitis but elevated lipase was the only real finding.

One theory was that the gluten triggered the attack. Or I got corned. Either way, I was told to lay off gluten for life and avoid CC. I felt like I was going crazy. I was on a broth diet, and got IgG testing through YORK labs, which showed some other allergies. Many of my suspect foods that I thought were contaminated were on there. My allergist suggested that these were foods that my body associated with corn; which makes sense.

Finally...based on symptomatic response and the presense of the DQ2 gene my GI officially called it celiac disease...although to go to the celac clinic I need to get a biosy proven dx. I don't have the weight to lose on a gluten trial, though. My dr also feels that, based on my descriptions, corn may cause the same type of damage gluten does. He'd love to test out the theory, but I'm more interested in living again than being a guinea pig

Now I'm looking at the kids again. I recently took oldest off of dairy, which has solved her reflux issues (and she no longer is asking me to sit with her in the bathroom, a good sign I think) and would like to take her off of gluten properly once we get "good" at that. With the corn restriction...and no nuts for youngest...its hard to keep them fed well. I figured I could take out gluten, but would end up increasing dairy to make my flops palatable, or give up dairy and still let her have canned soups and sandwiches for school. Oldest was tested for Ttg and total IgA both well within normal. The dr ran a gene test which came back as DR4,1. Since I can't find any info relating DR genes to celiac, I think he ran the wrong one.

Its late...but thats the basic story. I know I'm missing parts...like finding you guys and really relating to a lot of what I've read here. I don't know if its true celiac or gluten intolerance, but that doesn't matter. I do think corn plays a BIG part in my issues, and that corn does cause celiac symptoms. I've seen a lot of other corn avoiders mention they're also DQ1, so I want to research that further. Its only been about a year since I gave up gluten, but it feels like much longer! Looking forward to continued healing!