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Test Results Are Negative!


mela14

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mela14 Enthusiast

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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Lesliean Apprentice

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Lesliean Apprentice

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:

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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

mommida Enthusiast

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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    • trents
      I would say two things and then I'm done. Many celiacs have been misdiagnosed for years with IBS. Testing for celiac disease requires regular and significant consumption of gluten for weeks/months in order to be valid.
    • RMJ
      Can the rest of your household eat the food with gluten instead of getting rid of it? Can you create one shelf, or partial shelf, for your new food in the pantry, in the fridge and in the cabinets as a start? My husband is not gluten free so we each have a cabinet, and separate shelves in the fridge. If we have to share space the gluten free foods go on the upper shelves so crumbs with gluten can’t fall onto them. Good luck!
    • The Logician
      Thanks for the advice, if my sensitivity comes back i’ll do that but I am 74, in good health for my age and probably have been sensitive to gluten for over 30 years the beginning of which I didn’t even know or suspect It was gluten. I’m seen by my doctor every three months with fasting labs, he knows I avoid gluten and has never suggested I should be concerned. It is quite possible a doctor did those tests on me 30 years ago, I just don’t remember, if they did and they were negative that’s why I wouldn’t remember. If you are interested I’ll keep you posted, but from what i’ve read there is no cure for genetic celiac disease and right now I’ve never felt worse than diarrhea eating wheat or...
    • trents
      Diarrhea is a classic symptom of celiac disease and may be the only symptom many people experience until damage to the small bowel lining becomes severe enough to spinoff other health issues. There are many with what we call "silent" celiac disease whose symptoms are so minor or occasional like yours that they blow them off. The only way to distinguish between celiac disease and NCGS (Non Celiac Gluten Sensitivity) is to get tested. I strongly recommend that you request your doctor to run these two blood antibody tests: total IGA and tTG-IGA. The antibiotic seems to have put you into some kind of remission at the present time but that may not last.
    • The Logician
      Not that I can remember but my reaction has never been more than diarrhea and I probably ate a lot of wheat products for years not knowing I was sensitive to it. Dr. never tested me because he attributed it to IBS. 
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