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dbmamaz

Really Might Not Be Celiac

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Well, I"m starting to think i might not have celiac.

First, I quit wheat and milk because they caused problems when I was an infant. I felt much better very quickly, and kept getting better.

The more I learned about celiac, the more I thought that might be it, so I also quit barley, malt, etc.

My A.L.C.A.T test showed sensitivities to gluten and casien, but also to 50 other foods, including rice.

My celiac panel came back negative.

Finally, regular allergy testing showed I was allergic to wheat, and barley, and malt, and milk . . in fact, there were only 6 foods he tested me for that I didnt react to, but the mentioned ones were all at least a 2+ reaction.

So, if I"m actually reacting to gluten foods with both my IgE AND my IgA (but not IgG), then I think i'm just allergic to the world, but probably not celiac. I guess the only thing left to do would be to get the genetic test, to see if I still might be possibly celiac, but it seems less likely than I once thought.

So . . . may be around here less, I guess.


Cara - 42, mom to dd 15, ds 12, ds 4

Off gluten and dairy (and tapioca ;-( ) since 11/07

A.L.C.A.T. test showed over 50 sensitive foods

Celiac panel came back negative.

Regular allergy testing reacted to every inhalant and all but 6 foods.

Slowly adding in foods, started w 19 and now have 25

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even if you are allergic to wheat instead of a true celiac it would seem that you would still have a lot to gain from this site. the solution to both problems are the same. good luck with your testing. i hope you are able to find enough healthy things to eat!

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even if you are allergic to wheat instead of a true celiac it would seem that you would still have a lot to gain from this site. the solution to both problems are the same. good luck with your testing. i hope you are able to find enough healthy things to eat!

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The other poster is right, this site is great if you only have an allergy. However, don't dismiss it yet. If I recall, you were already gluten-free when your panel was done... and it is very possible to be allergic AND intolerant to gluten at the same time. So, please don't give up yet. And definitely stay around. You still have to be gluten-free so, your tips and experiences can defintiely help everyone. :)


Be yourself, everyone else is taken.

Oscar Wilde

Gluten free November 2007

IgA Deficient, Neg Bloodwork, Double DQ2 Positive

Dietary and Genetic Diagnosis June 2, 2008

Soy free Jan 09

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Don't dismiss celiac. I had the same experience as you, I showed negative on the panel, over and over again over the years. So celiac was dismissed. Toward the end I was allergy tested and out of 99 things tested for I only showed up as NOT being allergic to one thing..... beech trees. That would have led to a very restricted diet. :D My allergist saved my life, literally, by telling me that the celiac had put my immune system into hyperdrive. He put me on an elimination diet to finally diagnose me and that was confirmed by a GI when the challenge almost killed me.

Within a year gluten free almost all my other allegies resolved. Don't give up on the diet yet. Since you showed up with an allergy to gluten containing substances you still need to be gluten free. I would be willing to bet that within a year your other allergies will be relieved also.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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I think what is confusing, and frustrating, is that it's really hard to find a doctor who understands both the GI and allergy implications of gluten. There's so much good information on this website - if only doctors would get up to speed! Getting a diagnosis shouldn't be this difficult for something that obviously affects a lot of people. I think grains in general don't do a lot of good to our bodies.

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