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Can I Be Gluten Intolerant And Not Have Celiac Disease?


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12 replies to this topic

#1 Pig Daddy

 
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Posted 12 June 2010 - 06:21 AM

Can I be gluten intolerant and not have celiac disease? I test negitive for celiac but have all the symptoms pluse maybe one or two really strange ones.
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#2 psawyer

 
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Posted 12 June 2010 - 08:13 AM

Yes, you can. My niece (not biological) is an example. She is gluten- and casein-intolerant, but does not have celiac disease.
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Peter
Diagnosis by biopsy of practically non-existent villi; gluten-free since July 2000.
Type 1 (autoimmune) diabetes diagnosed in March 1986
Markham, Ontario (borders on Toronto)

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#3 ravenwoodglass

 
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Posted 12 June 2010 - 08:36 AM

You can also be celiac and test negative. Both need to be just as strict with the diet.
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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)

#4 Heidi S.

 
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Posted 12 June 2010 - 08:47 AM

Yes, Yes, Yes! My mother and sister are celiacs. I and my niece are gluten intolerant. In the case of my niece and I we are very symptomatic, we react within an hour of glutening. My doctor told me that first degree relatives of Celiacs are sometimes the most severe with reactions.

A negative celiac test really means nothing. My niece and I were diagnosed gluten intolerant b/c we do not carry the 98% gene. Either we are the 3% who do not carry the gene but are celiacs or we are just gluten intolerant. Either way a gluten free diet is all we need! I myself are done with testing and have accepted the gluten free diet! Doctors are "practicing" medicine for a reason. Celiac tests are lacking and there are some terrible information out there from doctors about celiacs.

Trust your body and symptoms!
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#5 jackay

 
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Posted 12 June 2010 - 09:19 AM

I do not know if I am Celiac or gluten intolerant. I did not have tests done until after I had eliminated most gluten. I will never go back to eating gluten just to have accurate test results.

Gluten makes me very ill. With that being said, I completely avoid it.
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#6 K8ling

 
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Posted 12 June 2010 - 01:38 PM

ABSOLUTELY!! I am! :)
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Diagnosed with Gluten Allergy April 2010. Family history of Celiac disease and bowel cancers. Already feeling a billion times better since going gluten free.

#7 siglfritsch

 
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Posted 12 June 2010 - 04:08 PM

You can also be celiac and test negative. Both need to be just as strict with the diet.

That is just incredible that all those health problems resolved after going gluten free. My blood tests were negative, but I had been gluten free for 3 weeks before the tests. I'm just staying gluton free also. I don't want to make myself sicker just to satisfy a doctor.
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#8 Coolclimates

 
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Posted 12 June 2010 - 05:46 PM

Yes. In fact, most people with gluten intolerance DO NOT have Celiac disease. Read "Better without wheat." This book puts a lot of emphasis on people with gluten intolerance who don't have Celiac. Unfortunately, people with gluten intolerance (but not celiac disease) have an even harder time being diagnosed because doctors know so much less about this than Celiac. Also, some people with gluten intolerance actually suffer more than people with Celiac and are often taken less seriously than those with Celiac.
All these terms can be easily thrown around, and this book explains this better. Celiacs also have gluten intolerance. Celiac Disease is just a specific type of gluten intolerance. The only difference is with Celiac disease, the villi are blunted or smooth. For people with general gluten intolerance (but not celiac disease), their intestines appear normal, as does the villi.
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#9 glutenfr3309

 
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Posted 12 June 2010 - 08:49 PM

yep! i didn't test positive for celiac through blood tests or a small intestine biopsy but i follow the gluten-free diet. already started to show inflammation in my intestines but the biopsy was negative for sprue. my doctor said had i not caught it this early 20 years from now i most likely would have been positive. i will NEVER go back to gluten!!
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#10 mushroom

 
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Posted 12 June 2010 - 08:55 PM

Dr. Rodney Ford, New Zealand's Mr. Celiac. believes that celiacs are a very small minority of those with gluten intolerance. I myself believe that you become celiac after you have been gluten intolerant and gluten eating for long enough (although there are the rarer celiacs who will never test positive no matter how long they eat gluten).
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

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Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

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#11 ravenwoodglass

 
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Posted 13 June 2010 - 04:36 AM

That is just incredible that all those health problems resolved after going gluten free. My blood tests were negative, but I had been gluten free for 3 weeks before the tests. I'm just staying gluton free also. I don't want to make myself sicker just to satisfy a doctor.


I was only expecting my constant D to go away. When all the other stuff resolved it felt like a miracle.
  • 0
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)

#12 kayo

 
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Posted 13 June 2010 - 09:45 AM

Count me in too. My diagnosis has gone like this: celiac, not celiac, celiac, not celiac.

Frustrating? For sure.

I'm in the camp that believes celiac and non-celiac gluten intolerance are the same thing, just varying degrees.

What I know: when I eat gluten I get violently ill. When I don't eat it I feel better. My body is healing and my viatmin levels are improved. Next month will be my one year anniversary of being gluten-free. best thing I have done for myself and Ill never return to eating gluten.

"Better without wheat."


Thank you for this, it's going on my wishlist pronto.
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40 year old former foodie on a quest to feel better!

-IgE to oats and rye
-Diagnosed with Colitis via endoscopy/colonoscopy Oct '10
-Following FODMAP diet since June '10, Positve SIBO test, July '10
-Diagnosed non-celiac gluten intolerant June '10 (celiac in March '10, endocsocopy in Oct '10 shows no signs of celiac)
-Osteopenia June '10
-Gluten free since July '09 & Soy free since December '09
-Dairy free since '06
-IBS & Sjogren's diagnosed '05
-RA diagnosed as a toddler


#13 Skylark

 
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Posted 13 June 2010 - 03:00 PM

Dr. Rodney Ford, New Zealand's Mr. Celiac. believes that celiacs are a very small minority of those with gluten intolerance. I myself believe that you become celiac after you have been gluten intolerant and gluten eating for long enough (although there are the rarer celiacs who will never test positive no matter how long they eat gluten).

Ditto Dr. Markku Mäki, Finlan's Mr. Celiac. He says there is a whole spectrum of gluten intolerance symptoms.
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