Bloods And Biopsy Both Negative For Celiac, Still Sick... What Next?

[Jennyroars]

I am hoping that you will read this and have some fresh ideas for me, so from the beginning....

As a child (age 6) I went for a year or more hardly eating as it made me feel sick and gave me a sore stomach. I was told I was a fussy eater and would grow out of it and in the main I think I did.

8 years ago (I was 25) I caught what I thought at the time was a bad dose of food poisoning whilst on holiday. I had chronic sickness, diarrhoea, dizzy spells, anxiety, depression and tingling in my hands and feet. I had 2 endoscopies and a colonoscopy to rule out Crohns and bowel cancer, nothing was mentioned about celiac and I don

[mushroom]

I am so sorry you are having such a rotten time. It must be hard to be a mom when you are feeling so bad.

Some random thoughts: being gluten "lite" for almost a year prior to the testing could definitely have an effect on your results. It is recommended you eat the equivalent of 4-6 slices of bread a day for at least six weeks prior to testing to maintain the level of gliadin antibodies to test levels. However, even had you done that there is still the possibility your GI mentioned, that you are gluten intolerant rather than diagnosable celiac. The symptoms are the same in most instances and just as devastating.

Living with gluten eaters is a difficult situation if they do not do everything they can to prevent cross-contamination. It takes very little gluten to continue the reaction; for some people one small crumb can set off the whole cascade of symptoms. You should not use any pans or utensils used by them,you should have your own toaster and your own storage areas in pantry and refrigerator and your own gluten-free counter space.

It is important to eliminate all sources of gluten, including household cleaning products, personal care products (soap, lotion, shampoo, toothpaste), and in medications and supplements. Many of the latter use wheat as a binder/filler. You should check the labels of all supplements and have your pharmacist check on all prescription medications.

You must read all labels of processed food very carefully because both gluten and casein hide in many different forms. In a state such as you are in it is best to avoid all processed food altogether and stick to fresh, naturally gluten free meat, fish, vegetables, fruits, rice. There is also a possibility that you have an additional food intolerance--many of us do. But until you can be completely sure you are not getting trace amounts of gluten you will not be able to find this out.

Did you get a copy of your test results from your GI? Sometimes there is stuff in there that is missed by the doctor that is significant. We always recommend you get a copy yourself and if you care to post them on here with the references ranges the lab uses the folks who know about these things will look at them and see if they pick anything up

Gluten withdrawal is not at all unusual and some people report feeling worse before they feel better. It usually takes a good one-to-two month trial before you can be sure whether or not the diet is helping.

At this point, that is the best I can offer. Maybe others have some additional ideas. I do hope you are feeling better soon.