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mela14

Test Results Are Negative!

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OK...dr Lee just called from Columbia and gave me my results. the small intestine looks good with no damage. The gene testing was neg for celiac so she said there was no way that I could ever be celiac. I said that's great!...but I am still feeling poorly and getting sick after certain foods. she said that i probably DO have food intolerances and to try working with a nutrionist to see what I can eat. She also said that being that I have fibromyalgia I could be getting a lot of symptoms from that and that it's hard to figure out what is coming from that......... hhmmmmmm........ anyway, she said that i have to get my IGG levels checked as I have an immune deficiency and that could be causing me to over react to certain foods. I went to the hematologist this past friday and had bloods drawn to check my levels. Let's see how they are....if they are low again I might have to go back on monthly immunoglobulin infusions.

Either way,

I am going to stick with the diet and probably try to fine tune it a little more. I've been sick since friday with some sort of reaction from soy (it was on the popcorn) and in addition i think that ALL tree nuts are doing me in. At first it was only peanuts, almonds and walnuts....I think i can add cashews to the list too. It seems that the more I try to eat ....the more problems I run into. My gut is raw and sour....Here we go again...back to simplifying!

I just don't know what to eat anymore when I am hungry between meals or am out of the house. I was eating nuts to steer awasy from junk food but that doesn't seem to be working.

does anyone know of a good nutrionist in NJ to help me work on my food intolerances?

thanks,

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I hope you are negative for Celiac disease but I was told that and then did additional testing with Enterolab and found to have 2 copies of the DQ1 gene. The other gene that causes Celiac in 2% of the cases. It causes neurological presenting Celiac more often but because it manifests outside the gut it often tests negative on the "Gold Standard" biopsy, not that I didn't have a lot of gut symptoms too. That is why I am a big believer in Enterolab. They check for malabsorption (intestinal damage), antibodies, and all three genes (actually I think it is four).

See:

http://jnnp.bmjjournals.com/cgi/content/full/72/5/560

http://jnnp.bmjjournals.com/cgi/content/full/63/6/770

If a GFD helps I would consider that a positive but you have to be vigilant. When I first went gluten-free I was still eating Muesli cereal thinking oats were ok and found out later that it also had bran and rye in it. No wonder I thought I was negative and went back to being sick for another 2 years. Even 100th of a piece of bread will bring about symptoms if you are Celiac. Also watch out for natural ingredients, carmel coloring, and modified food starch. To really check and see if a GFD works, could you be really careful and limiting for just 2 weeks? If your intestines are damaged you will have temporary trouble digesting dairy for awhile (if you skip dairy make sure to supplement calcium). Also lots of people have trouble with soy.

Leslie

trust your gut

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Every test can have a false positive/false negative. If you were to question the lab that did the testing they will tell you there is no such thing as a 90 some % accurate test. (That was the explanation given to us from Prometheus Labs.)

My biological daughter's test showed DQ2 and DQ8 for Celiac. I am symptamatic after ingesting gluten and my test came back negative. Funny thing, they can't tell me exactly what the test results were, just negative. Cost a lot of money to be told "Just stay on the gluten free diet and maybe someday we can prove you have Celiac. Would you be available for a study in the future?"

From one of celiac3270's news posts, there is a new test just FDA approved for Celiac screening. I am very hopefull and bought stock in the company, Stratagene.

Laura

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