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The International Coeliac Symposium, Tampere, Finland - September, 1996

Dr. Lionel Fry from the U.K. talked about DH. He stated that all patients with DH have some degree of enteropathy, even though less than 1 in 10 patients with DH have GI symptoms. Dr. Fry also said 40 percent of DH relatives have gluten-sensitive enteropathy. He went on to say that the gluten-free diet can take 6 months to two years to get healing of DH, and a relapse of the DH rash may take 2 to 12 weeks to occur

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after someone eats gluten. Total disappearance of IGA skin deposits may take up to 7 years after a gluten-free diet is started. Dr. Reunala from Finland talked about associated diseases. He quoted others who said 5 to 14 percent of DH patients have thyroid disease and went on to say that DH patients have an increased incidence of lymphoma but a gluten-free diet seems to protect against lymphoma.

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Took me less than a minute, although why did they need our addy and phone?

As mentioned before you said she had rashes, have they checked if that is DH? That is a positive sign of celiac and those with the DH manifestation can have problems getting a postive with the gut biopsy. Here are some links. https://celiac.org/celiac-disease/understanding-celiac-disease-2/dermatitis-herpetiformis/ https://www.gluten.org/resources/getting-started/dermatitus-herpetiformis/ Please read up on this. She can get the rash tested for the disease if it is DH.

Thanks for your reply. I will get her retested. She hasn't had any gluten for a year and is very good at not eating it, but had some cake that night. It's so hard because the Dr who did the biopsy said there wasn't any damage so she can't be classed as Coeliacs. She had ten samples taken, but yes, like you say the intestines are huge.

Thank you for your informative reply. Yes I think you are right in that she is still getting dome cross contamination exposure through chopping boards, condiments etc. I will get her bloods redone to see if her levels have dropped and do a gluten challenge again. We all are on a whole foods diet, buy not all Gluten-Free. I find extended family difficult as because she had a negative biopsy they don't believe she could still possibly have it and aren't so careful with her. Thank you for the links, all very helpful.

Why do you make it so freaking hard to sign up? It's easier to find a replacement for rye bread!