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Does This Sound Like Celiac


Happy2bhere

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Happy2bhere Newbie

1992 - Diagnosed with IBS. Learned how to control symptoms and over time learned that large, fattening, greasy type foods were the worst. Mainly high fat foods.

2006 -Virus. They believe it was Parvo. I had a rash (itchy burning bumps) followed by extreme joint pains, numbness and tingling in my extremities. I had diahrea for one months time. I also had bouts of ataxia at this time which I thought (what is going on). My face even went numb at times. I was tested for MS.Five months into this now complaining of only joint pains, I was given a Celiac panel. The only one that was off the charts was for the Antigladin Igg. She then sent me to a GI. I was given an Endoscopy. She said it was negative for Celiac and that was it. I was relieved because the thought of learning the diet seemed a bit overwhelming. However, I was diagnosed with Barett's Esophagus due to GERD. What? I later learned that I had atypical reflux. (burping, belching, nausea with some chest pains). I was put on Zantac. They also found a precancerous polup in GI track. I followed up a year later and they now found an ulcer and a hiatial hernia. I was put on Nexium and checked again 3 months later and the ulcer healed. While on Nexium I began to have EXTREME BLOATING (looking very pregnant). It was to the point the GERD was worse and I lost my appitite because it seemed that food was just sitting in my stomach not going anywhere. I was told to take some probiotics. This didn't seem to help. I was given an antibiotic that only felt in the bowels. This was nice because I didn't have the usual side effects of full body antibiotics. This cured the bloating for some time. I was told I had Small Bowel Overgrowth. I was given a 24 hour ph test and a esophageal mamometry. I was being tested to see if surgery (fundoplication) might help me. They felt for sure my LES was non-functioning. During the testing my doctor retired and met with a new doctor. He looked at everything and said he wasn't sure about the surgery now because my LES had normal pressure. What he did notice was that it was opening without a swallow and was happening mostly at night when lying flat which was causing the Barrett's. He asked current symptoms: bloating, nausea, fatigue after eating. He went back to this blood test and wants me to try the celiac diet. He believes all these things are happening because of Celiac. Has anyone been told they have this with only one blood marker and no biopsy. I also get this warm/burning pain in my feet sometimes at night which I have to put them under cold water to be able to fall asleep. Could all these symptoms be a result of Celiac. The joint pains come and go and move around. He thinks this might help the burping with in turn will help all the other symptoms.

Does this sound like anyone else out there?


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You've got an excellent doctor! Yes, ALL those problems could be caused by celiac disease, and his recommendation to try the gluten-free diet is a good one.

What have you got to lose? The gluten-free diet is healthy, and it might just be what you need to finally get better.

I have a hiatal hernia as well, and it doesn't bother me any more now that I am on the gluten-free diet.

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    • knitty kitty
      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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