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Me? A Celiac?

princezz1983

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princezz1983 Newbie
princezz1983
Posted

Hello,

I think I just found the answer to my main question in someone else's post, but I'll ask for more input anyway.

For five years, I've been suffering from violent episodes of stomach pain and vomiting. They started off every 6 months and have gradually increased in frequency to once a week. I've been in the E.R. being rehydrated, etc etc. Good stuff. I usually have a mild fever and bone pains for a short while afterwards. Two previous endoscopies showed mild chronic gastritis (lymphocytic) but nothing that could be causing my pain.

For two years, I've had paresthesia and muscle twitching, serum B12 of 440 two years ago. Ordered an MMA test kit because my doctor won't do it for me.

For one year I've suffered from anxiety and depression.

Celiac panel was all negative except for the IgG. However a duodenal bulb biopsy last year was negative.

A . L . C . A . T said - severe gluten intolerance. Mild wheat intolerance (i.e. gluten needed in high concentrations to produce a bad reaction) Also severe intolerance to corn, potato, carrot, etc..

Moderate positive RAST reaction to wheat (and corn, and rice, and peanut)

This year a new GI did another endoscopy and I believe looked further into my small intestine. It showed mild inflammation. The lab said "could be minor or early celiac." I had been off my allergens for three months prior and then back on for one month before the endoscopy. During the months off, my episodes decreased to once a month. Back on, once a week.

Back in the E.R. again yesterday, I demanded to see my lab results. Imagine my surprise when my neutrophils were 87% of my WBC and there were hardly any lymphocytes to be found. As background, I suffer from chronic, "benign" neutropenia, and have for at least the past four years.

My question was if this mild inflammation of the small bowel could really be due to gluten intolerance, and if my symptoms could be related.

Gemini said in another post - "Your intestines will become inflamed first, sometimes for years and then when enough damage has been done, the villi start to go. That could take a long time to happen too, depending upon the person."

I can't really make the connection on how this would all work, but I know lymphocytic gastritis is associated with celiac. I must have some kind of acute form of it that won't heal until I get off the gluten. I know the nerve and psychiatric symptoms are also associated, although I want to see what my B12. Um, I also have a severe vitamin d deficiency that is not responding to oral treatment.

I read that on average it takes 9 years to diagnose celiac after symptoms start. Is that because everyone is looking for this villi damage when that is an end stage of the disease?

I'm sorry, I'm just rambling. I've been plagued with so many health problems for so long that now I'm afraid to believe that this could be the problem. After I was told last year I was NOT celiac as well. Right now I'm trying to deal with getting off the Klonopin they prescribed for the anxiety.

Any comments would be appreciated.

Thanks,

Leia

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Ursa Major Collaborator
Ursa Major
Posted

Leia, it sure sounds like celiac disease to me. And you are right in saying that destruction of the villi is the end stage of celiac disease. Most doctors won't diagnose you with celiac disease until that happens. It is ridiculous.

If you have taken prescription vitamin D, then that could be why you don't respond to treatment. The prescription vitamin D is D2, which is almost useless. You need D3, which is the natural form. The best way of getting that would be by taking cod liver oil. The Carlson brand is the best, and doesn't taste terrible, either (get the lemon flavoured one).

I had very low vitamin D 2 1/2 years ago, and took two tablespoons of Carlson's cod liver oil daily for a year. When I was tested again, my vitamin D level had gone up a little too far (159) and I had to cut back on my cod liver oil intake (around 120 is optimal).

You might get yourself some sublingual vitamin B12 to bring that up. Often the pill form isn't well absorbed. Especially if you have bowel damage.

And I suggest you get onto the gluten-free diet immediately! And since dairy and soy can hinder healing, you may want to eliminate those as well.

princezz1983 Newbie
princezz1983
Posted
  • Author
Leia, it sure sounds like celiac disease to me. And you are right in saying that destruction of the villi is the end stage of celiac disease. Most doctors won't diagnose you with celiac disease until that happens. It is ridiculous.

Thanks! But can I have minor inflammation with major symptoms?

- Leia

Ursa Major Collaborator
Ursa Major
Posted
Thanks! But can I have minor inflammation with major symptoms?

- Leia

Yes, absolutely!

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