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Your Takes On Diagnosis


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11 replies to this topic

#1 heather Goble

 
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Posted 04 May 2011 - 06:25 PM

Hi,

I have just recently had blood tests and biopsy, both came back negative. When I went to the doctor today for the biopsy results I actually met with the phsyicians assistant (who didn't do the biopsy, but read me the results). After hearing my symptoms he said he was very surprised the tests came back negative. I told him that I was off of gluten for a month and a half before testing and only went back on for a couple of weeks for the test (the dr said I only needed to eat gluten for 3 days prior to testing). The physicians assistant that I saw today said he wasn't sure if that would skew the results or not, but told me to just assume I have celiac due to my symptoms. Not really a diagnosis and a long story to explain to everyone that inquires. I guess I'm a little frustrated. Any advice ( I have been gluten free since the day is the biopsy, I just can't eat it) I'm just uneasy of the somewhat diagnosis.

Thanks!
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#2 Dr. B

 
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Posted 04 May 2011 - 07:46 PM

Signs of a gluten intolerance are not always found in the intestines via a biopsy. Other organs can be affected.

http://www.wesupport...utSenBeyond.pdf
http://www.biolifesa...i2abstracts.pdf
http://www.thedr.com...id=21&Itemid=23

Proteins from other foods, which leak through the intestines, might be causing your discomfort.
http://www.drlwilson...les/candida.htm
http://www.holistict...d=87&Itemid=113
http://www6.ufrgs.br...and disease.pdf

Many people in situations such as yours eat the paleolithic diet (no grain diet) for awhile (several months) and then might re-introduce proteins, one at a time, to see if the proteins from that particular food causes them discomfort. Also, once the candida is gone, and the holes in the intestines are healed up/closed up, one can tolerate other proteins better because they don't leak through the intestines anymore.
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#3 ravenwoodglass

 
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Posted 05 May 2011 - 03:25 AM

Go ahead and stick with the diet being aware it can take a bit of time to heal. Not all of us have candida issues and even if you do that doesn't mean you would be able to add gluten back in if you are gluten intolerant or celiac. Going with a whole food diet is the quickest way to heal as there is less risk of cross contamination that way.
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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 JonnyD

 
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Posted 05 May 2011 - 04:34 AM

I had very positive bloodwork as well as family history so I went Gluten-Free right away. I had a biopsy done a month later but never had any gluten before. My GI said it could take 6 months to a year to fully recover so he wasn't too concerned. My biopsy show some moderate signs but not slam dunk atrophy. It's been almost three months Gluten-Free and I'd never go back on gluten. If Gluten-Free agrees with you, stick with it.
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#5 heather Goble

 
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Posted 05 May 2011 - 10:13 AM

Just wondering how seriously to take the "your results are negative, but assume you have celiac" the doctor said he couldn't believe they came back negative due to the symptoms I have. I guess I was just looking for a yes or no answer and am afraid family and others won't take the "assume that you have it" as a real diagnosis. I'm tired of explaining it already....
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#6 Dr. B

 
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Posted 05 May 2011 - 12:31 PM

I think the best test is "go gluten free and see if you feel better". If you do, then you tested positive for gluten intolerance. Just tell "family" that you tested positive. Are they going to want to see the actual test results?

Chemical tests are not always accurate. You know how you feel better than anyone else. I would never put my health in the hands of a medical doctor, or believe 100% in their tests.
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#7 Cara in Boston

 
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Posted 05 May 2011 - 02:09 PM

I had a similar situation. After my son tested positive, I had the blood test done and it came back very positive. I went gluten-free (but only for about 2 weeks) before seeing the GI. He did more blood tests and endoscopy (said the short time gluten-free shouldn't make a difference). Everything came back negative. Went on gluten challenge (3 months) but only did it 1/2 way. At 6 weeks he tested me again (blood only) and it was still negative. By this time my son has been diagnosed with a biopsy and since I have all the symptoms I saw no reason to continue.

My doctor is certain I don't have celiac disease but diagnosed me with gluten intolernace. Whatever. Treatment is the same so I don't really care. I'm pretty sure I have celiac disease. Why else would the original blood test be so positive?

Cara
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#8 ked85

 
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Posted 06 May 2011 - 07:24 AM

I also tested negative with a very deep family history of celiac and intolerance. The doctor wanted to put me on IBS pills and I said NO. I immediately went on a gluten free diet after the nurse told me that it did not test for intolerance and I already feel a difference after a week and a half. Also, people claim there's a false negative rate of about 20% (not sure how accurate that is), but it just goes to show - do what makes you feel good. If removing gluten works for you, maybe try the diet and then reintroduce it to your system at a later date and see how your body reacts. That's what I plan to do.
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#9 Dr. B

 
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Posted 06 May 2011 - 08:17 AM

I think the high gluten content in grains now-a-days makes grains an undesirable food for human consumption. I have read that tens of thousands of years ago that wheat berries were plump and juicy, and contained very little gluten. Today’s grains are very high in gluten. The high gluten content in today’s grains make them too hard for many of us to handle. Some ethnic groups handle them better than others. Maybe, I that's a small maybe, that we can evolve to handle these high gluten grains, but I think the food industry is changing our food supply faster than we can evolve. Even for those ethnic groups that seem to handle grains better, grains still might not be a good choice for good health and longevity.

So, reintroducing gluten to your diet in the future may not be the healthiest way to go.
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#10 ked85

 
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Posted 06 May 2011 - 09:00 AM

So, reintroducing gluten to your diet in the future may not be the healthiest way to go.


Those are very good (and educational) points. Thank you for that information! Definitely want to do some more research out of curiosity now.
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#11 heather Goble

 
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Posted 06 May 2011 - 04:15 PM

Thanks everyone for the helpful info. I have pretty bad reactions when I eat even a small amount. Usually get a really itchy rash which lasts for about a day, headache, fatigue, and terrible joint pain (which lasts for several days). All of which I have had before going gluten free, but now much worse. I know I can't eat it, so I don't.
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#12 sb2178

 
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Posted 06 May 2011 - 07:25 PM

That rash could be biopsied for a definitive diagnosis. Check out the DH board for details on the testing as it's finicky.
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2/2010 Malabsorption becomes dramatically noticable
3/2010 Negative IgA EMA; negative IgA TTG
4/2010 Negative biopsy
5/2010 Elimination diet; symptoms begin to resolve on gluten-free diet round two (10 days)
5/2010 Diagnosed gluten sensitive based on weakly positive repeat IgA & IgG TTGs and dietary response; decline capsule endoscopy.

Now, what to do about my cookbook in progress? Make it gluten-free?




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