Completely Baffled!

[angielackner]

so i started down this journey of gluten free living a year and a half ago. after ruling out diverticulitis, my GI doc and i started brainstorming what was causing my symptoms, and after much thinking and ruling out, he thought celiac. well, i had the IGA, etc tests done, and they were negative. But we went ahead and did the biopsies...the doc said that my insides were really red and i had a scalloped duodenum...he was almost positive i had celiac. well, the biopsies came back negative. he told me to try a gluten free diet and see what happened, as sometimes they can "miss" with the biopsies, and i really could still be celiac. so i went on a gluten free diet back in february of 2005...i started feeling better and everything...and could actually reintroduce dairy into my life (for the 9 years prior, we assumed i was dairy intolerant). well, then i had my son in april of this year. after doing all the research about breastfeeding and introducing solids when a parent has celiac, i was a little overwhelmed. i wanted a REAL diagnosis of celiac...so my doc agreed to do genetic testing for me. well, i just got the results back, and they were NEGATIVE! i couldnt believe it...celiac just explains so much of my health probs over the years! my doc says i am most definitley gluten intolerant, but not likely to be celiac. so does this mean i also really do have my original diagnosises of fibromyalgia and PCOS? am i just nuts? i am just so confused about why i am negative! anyone else have similar experiences?

thanks,

angie

[Fiddle-Faddle]

It depends on how you define a "real diagnosis of celiac."

If you go by the AMA's "gold standard" of positive biopsies and bloodwork, than you may not be--but we already know that it takes an average of 11 years in this country to be correctly diagnosed with celiac.

If you go by positive dietary response, then you obviously have some kind of problem with gluten, which very likely affects or even causes your PCOS and fibromyalgia.

As far as the genetic testing--celiac in Asia is almost unheard of, but in this country, it is becoming more and more common in second and third-generation Asian-Americans. I don't think their genes are morphing, and I suspect that it's perfectly possible to have full-blown celiac without having the genes that predispose you to it.

I couldn't care less about getting a biopsy--I know that I feel and look 100% better OFF gluten (and, except for a rash, I never had terrible gluten symptoms), and I have lost 20 pounds of excess fat without even trying just by not eating gluten. In the wonderful words of Nini, I don't need a doctor's permission to stay off gluten!

[Ursa Major]

Angie, it is not likely that all the genes for celiac disease have been identified yet. Apparently you don't have the ones they're testing for presently. On the other hand, they likely didn't test you for the gluten intolerance genes, which you may well have. Enterolab will test for those Open Original Shared Link. So, if you can afford it, you may want to try that if you need an 'official' diagnosis of something related to gluten.

But your doctor is right, you obviously are intolerant to gluten, no matter what they want to call it. Either way, you need to be gluten-free to feel well. Why does it matter if it's official? And it's nice that your doctor actually stands behind you in the decision to be gluten-free, rather than fighting you, like so many doctors do.

[Fiddle-Faddle]

Isn't full-blown celiac what happens when someone who is gluten intolerant continues to eat gluten?

And, by the way, you are NOT nuts!

[ArtGirl]

First, I want to say how very fortunate you are to have a doctor that doesn't blow off your symptoms and actually understands about gluten intolerance and celiac. You have been spared so much anguish in havnig to fight with a doctor when you KNOW you are sick.

I had genetic testing done through Enterolab who found I have two intolerant genes. I also tested normal for absorbtion. So I feel safe in assuming that I do not have celiac and have had no intestinal damage. That does not, however, minimize the severity of my symptoms when eating gluten (and corn).

so does this mean i also really do have my original diagnosises of fibromyalgia

Just to set the record straight, fibromyalgia is not a disease. It is a group of symptoms. Fibromyalgia is the result of something else being wrong and the immune system not functioning as it should. I had FM for several years, but the symptoms of the "syndrome" went away after I addressed the causes - food allergies being the main one and past exposure to DDT being another. IBS is another "means nothing" diagnosis. If one has IBS, then there is a reason for it. IBS is not a disease anymore than FM is.

Okay, I'm off my soap box now.

[Guest nini]

they have not mapped ALL of the genes that predispose a person to Celiac, or even gluten intolerance. You are obviously gluten intolerant, so no, you aren't crazy. Don't worry about it anymore, stay on the diet, and as far as your kids are concerned, I think standard recommendation is to not introduce gluten until 1 year, then watch for reactions... keeping in mind that it may not manifest as gastrointestinal symptoms...

I think everyone would benefit from the gluten-free diet and it certainly is a healthier way of life....

[Nantzie]

Yep. If you read the signature lines on people's posts, you'll see that a lot of us are technically gluten-intolerant rather than celiac, but we get the same symptoms, and are just as sensitive to small amounts of gluten. I'd bet if you did the Enterolab genetic panel (only $150 and done by Laboratories at Bonfils, by the way) that you'd find out you had at least one of the other genes.

Nancy