I Need Help With A Gluten-free Diet

[elbar]

I need help with staying on a gluten-free diet. In August, I was advised that I had DH and had to have a gluten-free diet. I started immediately and for the first three weeks felt great. I hadn't had any intestinal problems and if it was celiac disease, it was only manifesting itself in the skin. (I was diagnosed with celiac disease 62 years ago and have been told that at 8 years old, the doctor said I had been cured - now I know that can't happen but for most of my lifetime, I believed it).

I went gung-ho and started investigating this diet very carefully. For the first three weeks, I stopped itching, seemed to not be lactose intolerant and lost bloat. Then the trouble started. I started having terrible cramps and diarrhea all the time and, even if I had been accidently glutened occasionally, this was happening way too often for an accidental glutening (and no itchy rash happened at the same time). I went to a G.I, had an endoscopy and biopsy of my intestines and was told I didn't have celiac disease and I should start eating gluten. So back I went to a more normal way of eating. I felt great again!

I still have the itchy rash and am sure it is DH. I had a skin biopsy yesterday and the dermatologist told me she felt that I should start a gluten-free diet because even if it isn't celiac related, it definitely seems like a gluten intolerance. In fact, she doesn't believe the results of the biopsy will solve this puzzle.

Finally (thanks for reading such a long post), I have to determine the medical risks of not following a gluten-free diet and having a higher risk of lymphoma or start a really careful investigation to find out just what was upsetting my insides so

much last summer. I know there has to be something in gluten-free foods that is not in glutened foods but I don't know where to start my elimination trials. I know that I have problems with brown rice at normal times so one thing would be to eliminate that, but I don't think I ate that much brown rice during this past gluten-free summer. Does anyone have any ideas of any preservatives, modifiers, etc. that could be in gluten-free foods that can cause stomach irritation?

Thanks for advice. This forum is a wonderful resource which I read constantly.

Elaine

[ravenwoodglass]

I need help with staying on a gluten-free diet.  In August, I was advised that I had DH and had to have a gluten-free diet.  I started immediately and for the first three weeks felt great.  I hadn't had any intestinal problems and if it was celiac disease, it was only manifesting itself in the skin.  (I was diagnosed with celiac disease 62 years ago and have been told that at 8 years old, the doctor said I had been cured - now I know that can't happen but for most of my lifetime, I believed it).

I went gung-ho and started investigating this diet very carefully.  For the first three weeks, I stopped itching, seemed to not be lactose intolerant and lost bloat.  Then the trouble started.  I started having terrible cramps and diarrhea all the time and, even if I had been accidently glutened occasionally, this was happening way too often for an accidental glutening (and no itchy rash happened at the same time).  I went to a G.I, had an endoscopy and biopsy of my intestines and was told I didn't have celiac disease and I should start eating gluten.  So back I went to a more normal way of eating.  I felt great again!

I still have the itchy rash and am sure it is DH.  I had a skin biopsy yesterday and the dermatologist told me she felt that I should start a gluten-free diet because even if it isn't celiac related, it definitely seems like a gluten intolerance.  In fact, she doesn't believe the results of the biopsy will solve this puzzle.

Finally (thanks for reading such a long post), I have to determine the medical risks of not following a gluten-free diet and having a higher risk of lymphoma or start a really careful investigation to find out just what was upsetting my insides so

much last summer.  I know there has to be something in gluten-free foods that is not in glutened foods but I don't know where to start my elimination trials.  I know that I have problems with brown rice at normal times so one thing would be to eliminate that, but I don't think I ate that much brown rice during this past gluten-free summer.  Does anyone have any ideas of any preservatives, modifiers, etc. that could be in gluten-free foods that can cause stomach irritation?

Thanks for advice.  This forum is a wonderful resource which I read constantly.

Elaine

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Hi, You may want to think about contacting an allergist they can lead you through an elimination diet to try and pinpoint what you are still reacting to.

I believe there are blood tests for food sensitivities also but I don't know a lot about them.

Do you consume gluten-free foods with artificial sugars like malitol? Some react to the sugar alcohols. You could also have sensitivities to the xanthan gum or the rice flour or really anything. That's where the allergist can come in handy.

For my family cross contamination was a real issue, gluten is everywhere it seems. Have you checked your cosmetics, soaps, shampoos, all medication? Pet foods and litters? Did you get a new toaster and can opener?

I hope you find the reason for your continuing trouble. Best Wishes

[Matilda]

...

[Rachel--24]

Did you get a new toaster and can opener?

<{POST_SNAPBACK}>

Can opener?? I never heard this one before...although I did think about it but figured I was being a little overly paranoid. Has anyone else changed their can openers?

ok...I found this on a website:

The can opener? The knife blade can collect a film if not washed after each use---so rinse before and after using,. Crumbs on the counter? Collect and wipe with disposable paper towels rather than your dishcloth.

Is this for real...my can opener blade isnt clean...its the electric kind and been used for 6 years now. I dont think I've ever meticulously cleaned the blade. How could it really contaminate my tuna though?