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Specialist Says 'while I'm Reactive, I Don't Need To Be Extremely Careful To Avoid Gluten'


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#1 Bananas

 
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Posted 26 December 2010 - 10:15 PM

Hello! I'm a newbie to this forum and I'm really impressed by all the information and knowledge members are sharing. Thank you!

I am very confident I've got gluten intolerance but I have a few questions. I'm 26, female and have 'belly issues'. However, I've been told that I don't need to be very careful to avoid gluten.

I had the endo & colonoscopy last week to rule out ulcerative colitis, crones, celiac disease, ulcers and all the other things.
Apparently my bowels are beautiful and although I almost certainly had an ulcer at some stage, it has healed itself (apparently this is from all the neurophen and aspirin I took). I've got 'IBS' - which means that I've destroyed my savings and Christmas for absolutely no reason!

We're still waiting on the biopsy results for celiac disease, but I am certain they'll come back negative. I didn't eat enough gluten for the test as I was scheduled two weeks later and I struggled to consume the 2 sandwiches a day. Also, (and please correct me if I'm wrong) as I'm still not at the extremely sick end of the disease yet, it's unlikely that they'll be able to find the diseased tissue in the random selection of the biopsy. My blood tests (taken about 3 months before I saw the specialist) came back as borderline, which is interesting as I eat hardly any gluten and was having a day when I didn't feel so bad.

My gastroenterologist told me that if the biopsy comes back as negative, then I'm likely to not have an extreme reaction to gluten and therefore I don't need to go out of my way to avoid it. However, I do have a reaction to gluten and since the procedure, I've become extremely sensitive. Is there such a thing as being only 'a little bit sensitive?' to gluten as his opinion is very different to what I've heard?

My sister is celiac and is the runt of the family. My mother and another sister also have reactions when they eat certain foods.

Excuse the long post, but I would like to know if it is ok to eat gluten sometimes when one isn't at 'deaths door'.

If you need symptoms or any other information, please let me know.
Thank you!
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#2 ravenwoodglass

 
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Posted 27 December 2010 - 03:41 AM

Excuse the long post, but I would like to know if it is ok to eat gluten sometimes when one isn't at 'deaths door'.


No it's not safe to only eat it sometimes. But I think your body is going to let you know that anyway once you have been strict with the diet for a bit and have healed. If you are forming antibodies to gluten even a small amount will flare those antibodies into action.
Now that you have had your testing done do give the diet a good strict try. I hope your feeling better soon.
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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)

#3 Bananas

 
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Posted 27 December 2010 - 06:52 PM

Thank you very much. When I was strictly gluten free and enjoyed lots of exercise I was very healthy.
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#4 frieze

 
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Posted 28 December 2010 - 09:29 AM

A "little bit" celiac, is like being a little bit pregnant....
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#5 quakenbake

 
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Posted 28 December 2010 - 10:56 AM

If you were very healthy while on a strict gluten-free diet and exercising, then you should go back to that. Since there is so much food sensitivity (including actual Celiac) in your family and you're done with your tests, it just seems like a good choice all around to avoid gluten.
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