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Negative For Celiac, Positive For Genetic Markers


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#1 MGMG

 
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Posted 02 May 2010 - 05:41 PM

Hello
I am new to this site.
My brother was diagnosed with celiac disease in October of 2009.
I tested negative for celiac, but postive for the genetic markers.
I am deciding whether or not to embrace the celiac life style.
Any advice??
MGMG
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#2 Heidi S.

 
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Posted 02 May 2010 - 08:28 PM

Tough decision.

Your gene could be active and silent, active later in life, or never at all. I am not sure of your sex but you can pass it down to your children and not exposing them to gluten for the first year of their life, greatly helps the chance of activation.

A gluten free diet is tedious, expensive, and inconvenient, I do not wish it upon anyone, and NO one goes into it lightly. In my opinion, it is hard to follow if you don't have symptom, the symptoms are what keep you from cheating ;) It would be great to support your brother and understand his needs even if you choose not to follow the diet for yourself:)

Do you have any symptoms or medical problems?
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#3 Skylark

 
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Posted 03 May 2010 - 10:31 AM

I saw a talk by Dr. Markku Mäki recently. One of his clinical observations is that a lot of people who are DQ2 or DQ8 positive generally feel better when they try a gluten-free diet, even if they are lucky enough to have negative biopsies and serology. Another advantage he pointed out is that people with a genetic tendency towards celiac who avoid eating a lot of gluten have a much lower chance of converting to full-blown celiac serology with all the attendant problems and health risks.
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#4 ravenwoodglass

 
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Posted 03 May 2010 - 03:23 PM

If your having symptoms then yes do give the diet a shot.
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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)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
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 with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity 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)

#5 MGMG

 
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Posted 04 May 2010 - 05:07 PM

Thank you for your quick response.
I am able to tolerate gluten-containing products. The only symptom I present with is abdominal bloating at times.I have tried to embrace the gluten-free diet and after a few days I have significantly less abdominal bloating. I also lost a few pounds while following the gluten-free diet!! It is extremely difficult to follow when eating in restaurants.
MGMG
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#6 WheatChef

 
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Posted 04 May 2010 - 07:30 PM

Thank you for your quick response.
I am able to tolerate gluten-containing products. The only symptom I present with is abdominal bloating at times.I have tried to embrace the gluten-free diet and after a few days I have significantly less abdominal bloating. I also lost a few pounds while following the gluten-free diet!! It is extremely difficult to follow when eating in restaurants.
MGMG


Certainly sounds like your body is reacting to the gluten. Since its normally a constant chronic exposure in a regular diet it can be hard to tell just all of what changes the gluten is causing in your body. I'm at the 2.5 month mark now and weekly notice a new thing that apparently was abnormal in me because it's now fixed but before I didn't even realize that it wasn't supposed to be that way (this week's discovery, not everyone has dermatographism and now neither do I!). You may be tolerating gluten less than you think. The bloating thing is definitely easy to notice however, one of the first changes that happened with me upon going gluten-free was losing 10 pounds and going down 2" in waist size.
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Receiving a qualified diagnosis of Irritable Bowel Syndrome is as useful as a Psychiatrist giving you a diagnosis of "Doesn't Think Right".




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