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Blood + And Egd Negative


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#1 dsepa730

 
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Posted 08 April 2010 - 06:07 AM

HI my name is Dawn, I'm new to this forum, but have a few concerns and I was hoping that someone could help me out? I blood work for celiac disease in beginning of march. My Transglutaminase was 73.8 and they said it should be less than 15. My GI doctor told me I need to get a Upper End, it came back negative, he then made me go get a small bowel barium series x-ray, that to is negative. I have all the symptoms I have constipation,extremely low iron my ferritin is a 2, I get dry skin, migranes everyday. Now they want me to have a colonoscopy. Has anyone had this happen. Can the blood work be wrong the biopsy right or other way around. I'm so upset I keep going through all these tests, and no answer. I just want to feel better.
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#2 Wolicki

 
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Posted 08 April 2010 - 07:32 AM

With a postive ttg, you most likely are Celiac. False positives are very rare. Did you have a biopsy of the small intestine? If not, then your endo was not correct. Plus, even if you did, the small intesine is over 30 feet. You should have had a small intesine biopsy with at least 6 samples. Xrays will do no good in diagnosing Celiac. Why does he now want you to have a colonoscopy? IMHO, he should have done that at the same time as the endo, to save your body the wear and tear of anesthesia.

How old are you? If you are approaching 50 or if you have a family history of colon cancer, then a colonoscopy is definitely in order. I don't think I have ever heard of a case with positive blood tests when it was not in fact Celiac. if I were in your shoes, I would start the diet post haste. If he wants to do the colonoscopy just because, I would say no thanks. Based on your symptoms and the positive blood test, I think you can safely assume you are Celiac. Unfortunately, some docs will not diagnose unless you have positive tests on every single lab and endo.
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#3 WheatChef

 
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Posted 08 April 2010 - 07:55 AM

That high of a tTG reading means that your body is manufacturing cells to destroy a basic enzyme in your small intestine. Confusion here is somewhat related to Celiac Disease being an actual physical manifestation of noticeable trauma as a result of your body attack itself. Your blood work basically shows that the process has begun whether or not the damage has built up or your GI actually noticed it. The disease itself has already started whether or not the symptom (damaged vili) has progressed to a noticeable amount.

The colonoscopy will not tell you anything about celiacs but it can tell you if you are starting to experience secondary damage related to either celiacs or some other problem upstream. Your doctor may be pushing for the colonoscopy to rule out any other sort of malady related to your physical symptoms but in all honesty with that high of tTG antibodies he should have put you on a gluten-free diet first.

Was IgA tTG the only celiac blood test he did? If so you should probably look for another doctor anyways.
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#4 dsepa730

 
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Posted 08 April 2010 - 09:41 AM

Hi thanks for replying, I'm only 24 . He said that he believes it just a false positive and that I shouldn't worry. I know I'm young but I'm miserable. So I guess I will just start the diet. I'm also thinking about getting a second opinion. Thanks again.

With a postive ttg, you most likely are Celiac. False positives are very rare. Did you have a biopsy of the small intestine? If not, then your endo was not correct. Plus, even if you did, the small intesine is over 30 feet. You should have had a small intesine biopsy with at least 6 samples. Xrays will do no good in diagnosing Celiac. Why does he now want you to have a colonoscopy? IMHO, he should have done that at the same time as the endo, to save your body the wear and tear of anesthesia.

How old are you? If you are approaching 50 or if you have a family history of colon cancer, then a colonoscopy is definitely in order. I don't think I have ever heard of a case with positive blood tests when it was not in fact Celiac. if I were in your shoes, I would start the diet post haste. If he wants to do the colonoscopy just because, I would say no thanks. Based on your symptoms and the positive blood test, I think you can safely assume you are Celiac. Unfortunately, some docs will not diagnose unless you have positive tests on every single lab and endo.


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#5 dsepa730

 
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Posted 08 April 2010 - 09:43 AM

Hi no he did the whole celiac panel that was the only one that was abnormal.

That high of a tTG reading means that your body is manufacturing cells to destroy a basic enzyme in your small intestine. Confusion here is somewhat related to Celiac Disease being an actual physical manifestation of noticeable trauma as a result of your body attack itself. Your blood work basically shows that the process has begun whether or not the damage has built up or your GI actually noticed it. The disease itself has already started whether or not the symptom (damaged vili) has progressed to a noticeable amount.

The colonoscopy will not tell you anything about celiacs but it can tell you if you are starting to experience secondary damage related to either celiacs or some other problem upstream. Your doctor may be pushing for the colonoscopy to rule out any other sort of malady related to your physical symptoms but in all honesty with that high of tTG antibodies he should have put you on a gluten-free diet first.

Was IgA tTG the only celiac blood test he did? If so you should probably look for another doctor anyways.


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#6 ravenwoodglass

 
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Posted 08 April 2010 - 03:48 PM

Hi thanks for replying, I'm only 24 . He said that he believes it just a false positive and that I shouldn't worry. I know I'm young but I'm miserable. So I guess I will just start the diet. I'm also thinking about getting a second opinion. Thanks again.

With symptoms it is highly unlikely IMHO that it was a false positive. Those are really almost unheard of. False negatives in blood and biopsy however are common. Do the diet. Chances are really good you will feel a lot better soon if you do.
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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)




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