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Coping with Celiac Disease

Share stories, techniques, and information to help others deal with the disease and the gluten-free diet.


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    • trents
      By far, the most likely cause of villous atrophy in the Marsh 3 range is celiac disease but there are other possible causes. Did you also have positive antibody tests? My guess is that when you see your physician he/she will declare you to have celiac disease. Of course, the ultimate proof of the pudding will be if you experience definite improvement in symptoms after going gluten free which, since you have now completed testing, you should begin to do.  
    • Lynnard
      Hi again - I received the biopsy results but haven't had follow up appointment with Dr. yet.  Wondering if you could comment on this: "Duodenum, random, Biopsy (Cold Forceps): MILD VILLOUS BLUNTING WITH PROMINENT INTRAEPITHELIAL LYMPHOCYTES, CONSISTENT WITH SPRUE (MARSH TYPE 3A). See Comment. Negative for Infectious Organisms, Dysplasia or Malignancy. COMMENT: While characteristic, the histologic findings are not diagnostic for gluten-sensitive enteropathy / celiac disease. A number of additional entities can enter into the differential diagnosis of celiac disease based on the histologic features, including tropical sprue, bacterial overgrowth / stasis, unclassified sprue, specific food allergies, many drugs including NSAIDs, olmesartan and immune checkpoint inhibitors, and a wide range of autoimmune diseases including adult-onset autoimmune enteropathy, diabetes, thyroiditis, lupus and multiple sclerosis and occasionally common variable immune deficiency. History of drug take, celiac serologies, HLA-DQ status and response to a gluten-free diet might be a key for a definitive diagnosis" They say "consistent with Sprue (Marsh Type 3A)" and then comment that the findings are not diagnostic for celiac disease.  I thought Marsh type 3 was conclusive (and I know that 3A is the best outcome as it relates to intestinal damage). Is this just normal caveat language or am I missing something?  I had appt scheduled for tomorrow but Dr. is sick and now rescheduled to over a week from now.  Appreciate any insight you can offer in the mean time.  Thanks!!
    • Sicilygirl
      Hello Scott, I did lose weight at the beginning of diagnosis and I know that it will take time to put on the weight I did lose. I think I have no appetite because this has been a roller coaster of emotions and a Big change on my body and its out of whack mentally and pysically. I think I am just depressed to be honest.  
    • trents
      It's easy to forget that it's not only the concentration of gluten in a given food item that's significant but also the total amount of gluten we consume over a period of time. This thing and that thing may meet the gluten-free requirement of not exceeding 20 ppm but if we eat enough of those things in a reasonably short amount of time it can have a cumulative effect because our bodies aren't given enough time to clear the gluten we have already consumed. Just curious. Did you know the fries were wheat breaded when you ate them?
    • SamClaire
      Hi! I try to steer clear of dairy and I cut out oats at the same time I did gluten products. It may be that something I had recently that was labeled as gluten-free contained oats. I am just so confused as to why I didn’t react when I know I ate wheat flour (breaded fries) but then reacted to something else 9 days later. Maybe you’re right and that it was the accumulation of things. 
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