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krisb

Anyone With Neg Gene But Has Celiac?

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My 8 year old has been on a gluten free diet for about 3 years now. I know he feels better on the diet and he definitly reacts when he slips up. The only testing we did for him before was the antigen test and it came back way positive. He recently had the genetic test done through a genetisist and it came back negative. I'm still going to keep him off of gluten because I do feel he has a gluten intolerance. I was wondering if anyone else has celiac with a negative gene test. My older son tested positive to the gene.


Kris -gluten intolerant, DH diagnosed without a biopsy

Mom to:

Kevin-11 food allergies, celiac

Owen-8 gluten intolerant

Alex- 5 gluten intolerant

Luke- 3/1/07 not planning on introducing gluten, still breastfeeding

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Im neg. for Celiac genes, but pos. gluten sensitivity. I have 2 gluten sensitivity genes according to Enterolab. But not the official Celiac genes.


GLUTEN FREE 4/4/08. LEGUME/SOY FREE 5/15/08. YEAST FREE. CORN FREE. GRAIN FREE. DAIRY FREE. I am eating all meats, eggs, veggies, fruits, squash, nuts and seeds. I just keep getting better every day. :)

Do not let any of the advice given here substitute for good medical care. Let this forum be a catalyst for research. Find support for any post in here before you believe it to be true. Arm yourself with knowledge. Let your doctor be your assistant. Listen to their advice, but follow your own instincts as well. Miracles are within your reach. You can heal!

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Scientists admit that they haven't found all the celiac disease genes yet. In other countries they consider certain genes official celiac disease genes that here they claim don't cause it.

There are some people with celiac disease who don't have the two 'official' American celiac disease genes. I guess your son may be one of them.

Good for you for keeping him off gluten anyway, you are doing the right thing for your son's health.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

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it is rare to have celiac without the main two genes, but definately possible. There are at least a couple of people on here with biopsy and blood confirmed celiac without the genes. There are documented studies proving that there are some people who get it without the genes. Also males are more likely to not have the 2 main genes


gluten . . . Kiss my grits!

pork and beef free- 1994

wheat free or wheat light- 2003

gluten free- January 2008

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I was firmly diagnosed celiac in 2002. I have had DH since childhood. I had a fantastic resolution of a myriad of health issues, most autoimmune related. I didn't have my gene test done until I had been gluten-free for almost 5 years. By US gene standards I could never develop celiac because I don't have the genes. In other countries I would have been diagnosed celiac in childhood. Gene testing is NOT a reliable test to use to diagnose. We just don't know enough about the genes yet, most doctors don't even know there are now 7 more celiac genes recently 'discovered' and if you use the gene tests for diagnosis many of us will be missed.


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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