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AandGsmomma

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AandGsmomma Apprentice
AandGsmomma
Posted

Hello,

I have been lurking for a while and just joined today. I had horrible stomache pain off and on for years but it isially went away. Well this year after the birth of y second child my horrible stomache pain came back worse then ever. Went to my primary amd they ran blood work and said I had pancrititis and had to see a gi. If it wasnt my pancreas then it was probably a chronoc pain issue that I would just have to deal with the rest of my life. The gi was just as helpful to run a million tests and an endoscopy to tell me I have a sensitive stomach and to tale 80 mg of Omiperzole a day and anti depressents. I refised the antidepressents and would not accept its a chronic pain and all in my head. I went for accupuncture and she suggested I go off wheat simce I have a family history of Celiac. What a difference! I was pff the acid reducer in days and dont have horrid stomach pain, headaches, heart burn or bumps on my legs without gluten. Now I am having a hard time not being angry at all the invasive testing. I later found out I have a bad vitamin B, D, and Calcium deficiancy and that my high liver enzyimes where not due to fatty liver.

Thanks for all the info so far and I look forward to coping and learning as I heal.

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GFinDC Veteran
GFinDC
Posted

Welcome to the forum! :) Missed diagnosis is very common. Most celiacs in the USA don't know they have it. Stick around and learn with us. We are a very freindly group when we aren't getting over being glutened. :)

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  • Recent Activity

    1. trents
      - trents replied to MagsM's topic in Related Issues & Disorders
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      Inflammation and Menier’s disease link?

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    2. nataliallano
      - nataliallano replied to MagsM's topic in Related Issues & Disorders
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      Inflammation and Menier’s disease link?

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      Hypothetical question about antibodies

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    • trents
      Inflammation and Menier’s disease link?

      By trents · Posted

      How long have you been strictly gluten free? Certainly, it would be good to look into vitamin and mineral deficiencies and supplementation. The B vitamins, magnesium and D3 are all very important to neurological health. Unfortunately, it can be difficult to reverse gluten-induced neurological damage damage if it has gone on for a long time. 
    • nataliallano
      Inflammation and Menier’s disease link?

      By nataliallano · Posted

      Thanks Trents I'm strict with my gluten-free diet now. I just don't feel any better. I'm going to get tested for vitamins and minerals to see if I need some supplements. For sure I got some damage that doctors call Menier's and the only way they treat it is with medicine that does damage my body more than it helps.   
    • Zuma888
      Hypothetical question about antibodies

      By Zuma888 · Posted

      Thank you Scott for your helpful response! Based on this, would you say someone who is on a gluten-free diet - but not strict about cross-contamination and occasional cheating - and tests negative for tTg-IgA while having normal total IgA is not likely to have celiac, even if they have been 'gluten-free' for years?
    • Scott Adams
      Hypothetical question about antibodies

      By Scott Adams · Posted

      That’s a really insightful observation about antibody testing and the gluten challenge! You’re absolutely right that antibody levels can remain elevated for months or even years after going gluten-free, especially if there’s ongoing cross-contamination or occasional slip-ups. The immune system doesn’t reset overnight—it can take time for antibodies like tTG-IgA to normalize, which is why many doctors recommend waiting at least 6–12 months of strict gluten-free eating before retesting. For someone who’s been gluten-free for less than two years or hasn’t been meticulous about avoiding cross-contact, there’s absolutely a chance they’d still test positive, since even small amounts of gluten can keep antibodies elevated. This is partly why the gluten challenge (where you eat gluten before testing) exists—it’s designed to provoke a measurable immune response in people who’ve been gluten-free long enough for antibodies to drop. But you raise a great point: the challenge isn’t perfect, and false negatives can happen if the timing or amount of gluten isn’t sufficient to trigger a strong antibody response. This is why diagnosis often combines antibody tests with other tools like genetic testing or endoscopy. Your question highlights just how nuanced celiac testing can be! For people with celiac disease hidden gluten in their diets is the main cause of elevated Tissue Transglutaminase IgA Antibodies (tTG-IgA), but there are other conditions, including cow's milk/casein intolerance, that can also cause this, and here is an article about the other possible causes:      
    • Betsy Crum
      Chest pain from celiac

      By Betsy Crum · Posted

      Thank you for your response! I have considered starting a food diary in the past, I suppose this is as good a time as any to start.  
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