I Need Help With Understanding

[elbar]

I need advice and am hoping to get it here. I was diagnosed with celiac disease 62 years ago and after 8 years on a special diet, my family was informed that I was cured. Apparently, according to Canadian medical journals, if it can be caught before a year, it can be cured, or so I always believed! Now, 54 years after the "cure", I went to a dermatologist for a very itchy, bumpy rash. (I did not have any gastro-intestinal symptoms for all these years). She diagnosed Dermatitis Herpetiformis and the journey started there. I followed a gluten-free diet for about 7 weeks and even though I had less itching at the beginning, my stomach rebelled and all the symptoms I read about people having when they eat gluten started to happen to me when I went gluten-free.

Now, after having an endoscopy and biopsy, and the blood test, all reports seem to say that I don't have celiac disease (and probably never had it!) However, I am still itching. I have an appointment next week for a skin biopsy to see if it is DH but, since all the tests have come back negative, is it possible for me to have celiac disease manifesting itself as DH without any test showing it's there?

The blood test did reveal that I have a zinc deficiency. Can that be causing this itching? When I get itchy, it's in a single spot and doesn't resemble any of the photos I've seen of DH, which looks like it's all over (like measles) or in a cluster. I'm quite confused about what I have and my husband says I am obsessed about it. I think I am!

Hopefully someone out there may have some answers for me. Thanks in advance for your help and I'm sorry it's such a long post.

elbar

Massachusetts

[Carriefaith]

I was diagnosed with celiac disease 62 years ago and after 8 years on a special diet, my family was informed that I was cured.

Do you remember or know how you were diagnosed? If you had celiac disease then you still have it. There is no cure for celiac disease. The disease can go into remission and make you think that you're "cured" but there is still damage occuring in the intestine. The fact that you have DH and a zinc deficiency point towards celiac disease.

Apparently, according to Canadian medical journals, if it can be caught before a year, it can be cured, or so I always believed!

Do you have those articles or links to them? I would be very interested in seeing those.

[elbar]

Hi,

I have always been told that I was diagnosed with celiac disease at approximately 7-8 months old and was on a special diet for 8 years. During that time, the only food that I could have a lot of were bananas and I had terrible diarrhea during that time. My parents were told I was cured, but as I got older, and the Internet became available, I went online and read that there is no cure. I never had any symptoms so for 54 years I have been eating normally with normal intestinal processes.

I think I have DH but I'm having a skin biopsy at the end of this week. After all my tests, that will be the final piece of the puzzle.

I would love to see the Canadian Medical Journal but I don't know how to get one from the early 1950's. Neither my parents or the doctor are still alive to find out.

My main issue is that when I went gluten-free last summer, I started having terrible intestinal problems and had none before, while eating gluten. At the end of next week, I will put everything down on paper and study it so that I can determine whether or not I actually have celiac disease.

Thanks for your help.

Do you remember or know how you were diagnosed? If you had celiac disease then you still have it. There is no cure for celiac disease. The disease can go into remission and make you think that you're "cured" but there is still damage occuring in the intestine. The fact that you have DH and a zinc deficiency point towards celiac disease.

Do you have those articles or links to them? I would be very interested in seeing those.

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