Bloodwork Negative, Now What?

[julirama723]

My results are FINALLY back, 2 weeks after my blood was drawn. (How long does a celiac panel usually take? 2 weeks seems utterly ridiculous!) Guess what, they're NEGATIVE for celiac. I had the nurse read the results (and she couldn't even pronounce half the words correctly) to me, and she said for each test, no antibody was present. I was honestly frustrated and upset by this news, even though it's supposed to be "good." The nurse seemed to think that everything was hunky-dory with this negative verdict, and that since it was negative, my symptoms would just magically disappear with this diagnosis.

I explained that I obviously have something wrong with me, I did not imagine these symptoms. I asked if perhaps the results would be inconclusive because I hadn't been eating enough wheat in the past few months? She of course, had no clue about any of this, but did say that perhaps my levels weren't high enough to be detected? I guess it's partially my fault, since I'm a little confused about the whole testing procedure.

So now, where does this leave me? What should I do? I couldn't stand eating gluten anymore and I've been gluten-free for about 10 days (since a few days after the test.) I've started losing weight again, which is GOOD (I gained about 20 pounds since I had added grains back into my diet in February) and I feel so much better, no GI symptoms, no brain fog.

My mom is celiac. I have a history of thyroid disease. I have an obvious problem with wheat/gluten. Should I get genetic testing, or do I just stick with the gluten-free diet?

[happygirl]

You could always do both. Whatever makes it easiest for you to resolve your symptoms and stick with the diet.

If you are gluten free for awhile and your symptoms don't resolve, then you may want to follow up for other diagnostic testing.

[ShayFL]

Yes, go ahead with the genetic testing. It isnt diagnostic, but it could be a useful tool in helping you stick to the diet. Remember healing takes time. For some up to a year or 2. So be patient and make sure you are 100% gluten-free and see if your symptoms subside.

[veggienft]

This happened because of one thing, an incorrect view of medical science's capabilities.

There are three types of autoimmune wheat disease. You have been tested for two of them. Medical science has not yet developed a test for the third type, because it does not involve antibodies to wheat.

1. Celiac disease

2. Gluten intolerance

3. Gluten sensitivity

Although medical science is incapable of testing for gluten sensitivity, it is quite capable of proving that it exists in abundance.

Here's an outline of wheat disease:

Gluten ingestion

......Celiac Disease: Digestive system reacts by attacking the small intestine

......Digestive system reacts by zonulin dumping antigens into the bloodstream:

......gliadin, casein, other glycoproteins, fungus, viruses and bacteria

............Dumped gliadin attacks tissue

..................Gluten Intolerance: The blood's immune system

..................Reacts by attacking gliadin-compromised tissue.

..................Gluten Sensitivity: The blood's immune system fails to react

............Other dumped antigens attack tissue

..................Gluten Sensitivity: The blood's immune system reacts

..................by attacking tissue compromised by dumped non-gliadin

..................antigens

..................Gluten Sensitivity: The blood's immune system fails to react

Past the intestinal celiac reaction, wheat disease hinges on the "zonulin dump". The small intestine releases the cytokine zonulin in the presence of ingested gluten. Zonulin causes the small intestine to dump its contents into the bloodstream. The contents include undigested gliadin protein. But they also include other undigested glycoproteins like casein. In addition, zonulin dumps any number of large antigens into the blodstream, bacteria including hepatitis, micoplasma, etc, and viruses like varicella zoster, Epstein Barr, etc.

Any of these antigens can attack organs and tissue. And the attacks all hinge on the ingestion of wheat.

You were tested for immune reactions to wheat. The "zonulin dump" can happen as a learned response to gluten, without any current immune reaction whatsoever. The subsequent antigen attacks can also happen without any immune reactions .......to wheat or anything else.

Many people, including professionals, have and/or foster a view of medical science which is incorrect. Medical science does not possess the capability of proving whether any individual does or does not have wheat disease.

The remaining question is, what do you intend to do with this information? I hope you will change your view. All of the above wheat disease manifestations can be diagnosed and cured with a sugar-free wheat-free diet.

You can do that .......or not. Short of further progress in medical science, those are the only choices.

You're welcome.

..

[Amyleigh0007]

I was in your shoes. My test was also negative and I believe it was because I wasn't eating enough gluten. My son has Celiac and I have had symptoms almost my entire life, although I had never heard of Celiac until my son was dx. I decided to forget about my crazy doctor and go completely gluten free despite my negative test. I have had a terrific response. I took this information to an allergist who was wonderful. She seemed to know much more about gluten intolerance and Celiac and dx me with gluten intolerance. Could you go to an allergist?

[pele]

I had the nurse read the results (and she couldn't even pronounce half the words correctly) to me, and she said for each test, no antibody was present.

I strongly recommend that you get a paper copy of your lab results and read it yourself.

[Rachel--24]

I agree with the previous poster. Make sure that you get a copy of your results.

Did they test your total serum IgA? That would be important to know because if you are IgA deficient you will have negative bloodwork even if you do have Celiac Disease.

[julirama723]

Thank you for your posts!

I'm definitely going to stick with a gluten-free diet. I feel so much better eating this way.

I will see if there is a legitimate allergist in the area. Thanks for the suggestion! I will also try to get a copy of my test results.

[CMCM]

I never tested positive either via a blood test. But my lifelong low-grade symptoms which I'd lived with for my entire life took a major turn for the worse 3 years ago, and I started reading up on gluten and celiac disease. My mom was diagnosed with celiac disease 40+ years ago, but my symptoms didn't match hers so I never took it seriously for myself. However, when I suddenly got quite sick, started researching, and found out about Enterolab, I decided to see what I could find out. Through them, I learned I had the celiac gene and a gluten sensitivity gene, and the stool tests showed the antibodies and I also learned I was casein sensitive. Dr. Fine told me that one possibility was that I did not yet have ENOUGH intestinal damage to show up in traditional blood tests, especially since I had been minimizing gluten for a long time anyway. Or perhaps I was just quite gluten sensitive at that point, and the blood tests would not show that. I'd love to know "for sure" if I have celiac disease, but I can't afford to go the traditional medicine approach. The fact is, going gluten and casein free made me feel so much better that I don't need an endoscopy to tell me what I should do. However, I think if I had "real" confirmation I might do better in sticking with a gluten free diet. I also have near zero faith in traditional doctors with regard to celiac disease and gluten issues. The simple fact is, they just don't know about it at all.

[julirama723]

I do believe that my test results weren't what they "should" have been--I was not consuming the recommended 4-slices-of-bread-per-day-for-6-weeks amount of gluten prior to the testing, simply because I don't eat that much grain product to begin with! So I guess I was "gluten-lite" when I was tested.

I did pick up a copy of my lab results and they did NOT test my total serum IgA. This could also have given me a false negative. I could possibly have celiac but now I'll probably never know for sure, since I've been gluten-free for over a month and don't plan on eating gluten just for the sake of a test.

I have an appt. tomorrow with a internist (well he specializes in gastroenterology) to find out more. I'm interested in having more in-depth serological testing. I want to know if my thyroid is still OK, if my iron is OK (I bruise even if somebody pokes me!) and if I'm deficient in vitamins or anything. Even though he's not an allergist, I'm going to ask about food intolerances/allergies while I'm there. (I have discovered that along with gluten, I cannot handle corn, dairy, or soy.) I'm also going to ask about Reynaud's syndrome, which my celiac mother also has; I'm about 99% sure that I have it, too.

Having diarrhea for 5 days straight scared me into seeing a real doctor. I just need to know where I'm starting from health-wise, so I know where to go from here.