Was I misdiagnosed with celiacs?

I have stomach issues from my past. I was diagnosed with a Hidela hernia about 6 years ago which they say caused acute gastritis. Recent I started eating badly. Was eating the foods I was told to stay away from spicy foods, caffeine, anything not so easy on your stomach. I was also under tons of stress and had recently recovered from pneumonia. I had an upper endoscopy done cuz I was having a flare up of gastric distress acid Reflex. I asked them to test me for celiacs cuz my great uncle has it. But the biopsy came back suspicious. Not confirmed or denied. I then did the blood test which came back negative. I started the diet after this. And all the gluten free foods I bought (the breads, mixes, bagels etc. all make me sick. I get allergic reactions. I haven't felt better and it's been a full month gluten free now. I tried to eat a little regular bread the other day to see if I got sick. Nothing happened. So I tried a little more the next day. Nothing happened. Do I really have this disease? I could really use opinions on this!

1 Reply

  • When you get a diagnosis of coeliac disease they tell you the level of atrophy on something called the Marsh Scale - here's a useful diagram:


    The diagnosis of coeliac disease usually says something like "shows signs of coeliac disease" . Saying suspicious isn't helpful. Maybe they meant you were Marsh 1, it's worth enquiring - who'd want to follow a gf diet if they didn't need to?

    If the atrophy isn't too bad then you might not show external symptoms when reverting to eating gluten. For those of us with atrophy on the right hand side of the diagram (Marsh 3 and 4) - we get sick. Ultimately increased lymphocytes can cause cancer.

    Processed gluten free foods have an unbelievable list of ingredients in order to make them palatable. Unfortunately sometimes they're hard on the system, so we have to go easy on them.

    Have you been tested for Crohns or colitis?

    PS Without sounding like an old record - not all villous atrophy is coeliac disease.

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