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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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    • trents
      Welcome to the celic.com community @Dizzyma! I'm assuming you are in the U.K. since you speak of your daughter's celiac disease blood tests as "her bloods".  Has her physician officially diagnosed her has having celiac disease on the results of her blood tests alone? Normally, if the ttg-iga blood test results are positive, a follow-up endoscopy with biopsy of the small bowel lining to check for damage would be ordered to confirm the results of "the bloods". However if the ttg-iga test score is 10x normal or greater, some physicians, particularly in the U.K., will dispense with the endoscopy/biopsy. If there is to be an endoscopy/biopsy, your daughter should not yet begin the gluten free diet as doing so would allow healing of the small bowel lining to commence which may result in a biopsy finding having results that conflict with the blood work. Do you know if an endoscopy/biopsy is planned? Celiac disease can have onset at any stage of life, from infancy to old age. It has a genetic base but the genes remain dormant until and unless triggered by some stress event. The stress event can be many things but it is often a viral infection. About 40% of the general population have the genetic potential to develop celiac disease but only about 1% actually develop celiac disease. So, for most, the genes remain dormant.  Celiac disease is by nature an autoimmune disorder. That is to say, gluten ingestion triggers an immune response that causes the body to attack its own tissues. In this case, the attack happens in he lining of the small bowel, at least classically, though we now know there are other body systems that can sometimes be affected. So, for a person with celiac disease, when they ingest gluten, the body sends attacking cells to battle the gluten which causes inflammation as the gluten is being absorbed into the cells that make up the lining of the small bowel. This causes damage to the cells and over time, wears them down. This lining is composed of billions of tiny finger-like projections and which creates a tremendous surface area for absorbing nutrients from the food we eat. This area of the intestinal track is where all of our nutrition is absorbed. As these finger-like projections get worn down by the constant inflammation from continued gluten consumption before diagnosis (or after diagnosis in the case of those who are noncompliant) the efficiency of nutrient absorption from what we eat can be drastically reduced. This is why iron deficiency anemia and other nutrient deficiency related medical problems are so common in the celiac population. So, to answer your question about the wisdom of allowing your daughter to consume gluten on a limited basis to retain some tolerance to it, that would not be a sound approach because it would prevent healing of the lining of her small bowel. It would keep the fires of inflammation smoldering. The only wise course is strict adherence to a gluten free diet, once all tests to confirm celiac disease are complete.
    • Dizzyma
      Hi all, I have so many questions and feel like google is giving me very different information. Hoping I may get some more definite answers here. ok, my daughter has been diagnosed as a coeliac as her bloods show anti TTG antibodies are over 128. We have started her  on a full gluten free diet. my concerns are that she wasn’t actually physically sick on her regular diet, she had tummy issues and skin sores. My fear is that she will build up a complete intolerance to gluten and become physically sick if she has gluten. Is there anything to be said for keeping a small bit of gluten in the diet to stop her from developing a total intolerance?  also, she would be an anxious type of person, is it possible that stress is the reason she has become coeliac? I read that diagnosis later in childhood could be following a sickness or stress. How can she have been fine for the first 10 years and then become coeliac? sorry, I’m just very confused and really want to do right by her. I know a coeliac and she has a terrible time after she gets gluttened so just want to make sure going down a total gluten free road is the right choice. thank you for any help or advise xx 
    • xxnonamexx
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