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Gluten-Free 4 Yrs, Contradictory Test Results


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#1 rehh05

 
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Posted 10 November 2012 - 06:42 PM

Hi, I am new here, but thought you all might have some insight.
My great grandfather died of Sprue. I have 2 cousins who react to gluten. I have been having problems for years and 4 yrs ago a friend suggested removing gluten from my diet. I felt better, and have become quite vigilant about remaining gluten free and mostly dairy and soy free.

I was dxed with Hashimoto's thyroiditis (thyroidectomy), gall bladder quit (and was removed), IBS (was perscribed Librax), GERD (told to take Nexium), migraines (prescribed Zomig), arthritis (told to take ibuprofen), chronic sinus infections (given claritin)... early menopause (was given estrogen)... and have been trying to keep positive.... sooo... last year I changed to a new primary care physician, and he has been working his way through my body systems... sending me to all kinds of specialists. Most recently, I have been to a GI doctor... had a colonoscopy and endoscopy and the blood test that checks for gluten antibodies.

I asked the GI doctor if me being gluten free for a few years would affect the blood test... he said "No, almost no one is truly gluten free unless they are working closely with a nutrionist" so, hey, I didn't worry.

Test results? Probably not IBS... was told to wean off the Librax... he found very inflamed innards... pathology showed no crohn's diease, not colitis... but DID show partial villous atrophy. Blood test was negative... soooo... he had me have more blood taken to do the test to check for the chromosomal markers for celiac disease. hmmmmm... said not having the marker(s) would rule out celiac.

Test results may come back next week... the local hospital was not sure how to run the test, so it was to be sent to Mayo's I think.

I am unsure about all this. I DO feel better without gluten and dairy... and have always suspected corn to be an irritant... could the first blood test for the anitbodies have been a false negative? He seemed surprised to find the villous atrophy after the negative blood test.

Sigh.

Any insight would sure be appreciated!

Thanks ever so much!
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#2 tom

 
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Posted 11 November 2012 - 04:06 AM

...
I asked the GI doctor if me being gluten free for a few years would affect the blood test... he said "No, almost no one is truly gluten free unless they are working closely with a nutrionist" ...
...

AAAAARGH! That's SO ridiculous he must have almost no experience w/ celiac patients. The antibody tests need the gluten.
(He might really think that 'in theory' the antibody tests are affected, but that no one's gluten-free so it doesn't matter? Either way a horrible point of view for a practicing GI.

"Unless working closely w/ a nutritionist" makes him sound like he thinks all foods are a mystery. Most ingredients are gluten-free - it can be a shock at 1st to have to pay attn to it all, but 100% gluten-free is not at all impossible.

... ... could the first blood test for the anitbodies have been a false negative?


It's not even that imho. An antibody test is invalid when done after that long gluten-free. An actual false neg requires a valid test.
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>>>>>>> tom <<<<<<<

Celiac 1st diagnosed as a toddler, in the 60s. Docs then, between bloodletting & leech-tending, said "he'll grow out of it" & I was back on gluten & mostly fine for 30yrs.

Gluten-free since 12-03
Dairy-free since 10-04
Soy-free since 5-07

#3 tom

 
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Posted 11 November 2012 - 04:16 AM

Also, it's a little goofy for him to be turning to the murky world of celiac genetics when you have villous atrophy AND a positive response to gluten-free.
Imho, every good GI would dx you on these, unless they have some other explanation for the villous atrophy.

Just shaking my head at that Dr's failed attempt at the blood test & warped view of the gluten-free diet.
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>>>>>>> tom <<<<<<<

Celiac 1st diagnosed as a toddler, in the 60s. Docs then, between bloodletting & leech-tending, said "he'll grow out of it" & I was back on gluten & mostly fine for 30yrs.

Gluten-free since 12-03
Dairy-free since 10-04
Soy-free since 5-07

#4 ravenwoodglass

 
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Posted 11 November 2012 - 06:31 AM

First off your GI is pretty ignorant about celiac. The fact you still have villi that are impacted may mean that you have not been as gluten free as you thought you were being. If you are sharing things like toasters, butter, nut butters, condiments, a shared colander, baking with gluten flours for others, eating in restaurants that don't have gluten-free menus etc you may still be getting enough gluten to keep the villi damage going.
Don't rely on the gene tests to rule out celiac as there are more than the two genes that most doctors look for associated with celiac. There are also some rare conditions that can also cause villi damage so do make sure your doctor rules those out. The fact that you improved a great deal gluten free is good and an indication that you do need the diet. You continued issues could be a result of cross contamination. Do make sure you also check all your medications, both OTC and script for gluten and read as much here as you can to learn what you need to do to keep yourself safe. Ask any more questions needed.
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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 Bubba's Mom

 
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Posted 11 November 2012 - 06:44 AM

Ask for a SIBO test. It's a bacterial overgrowth that can damage villi. It can mimick Celiac. As far as the blood tests..it's rediculous to say that you are probably still eating gluten because you can't avoid it.

Also..be aware that most Dr.s agree that you have to have DQ2 or DQ8 to be Celiac. They dismiss anything that doesn't fit as not Celiac. I'm one who has DQ2.2..and had total villous flattening when DXed. Two different GIs did scopes and the biopsies said Celiac. Then they did the gene test and said they weren't so sure. It's ridiculous!

Get the SIBO test to see if it could be the cause of the villi blunting. AND..I'm banging the drum now for no GMOs. Corn, soy, canola, cottonseed, sugar beets, papaya, and zucchini and summer squash are all suspect. They have been genetically modified to produce insecticide which doesn't break down and can be released into our systems.
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#6 rehh05

 
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Posted 11 November 2012 - 03:35 PM

Thanks for the comments :) I had not previously heard of SIBO... that is a good idea... also, I am reading all I can to learn more so when I go in again I can ask better questions. I knew you folks would help :)
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#7 rehh05

 
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Posted 20 November 2012 - 07:18 PM

got my test results back today. I have the DQ8 marker... so can't rule out celiac... he didn't really say I have celiac disease, but wants me to go see a registered dietician to follow a gluten free diet... I explained again that I have been gluten free for 4 years and have been very scrupulous (as much as I can be) for 2 years... he told me to humor him, to see the dietician and then come see him in a few weeks. He said if the dietician agrees that I am doing what I need to do, that is great, but I don't think he realizes that I have been sooooo careful. I feel as though my problems have just been handed off to someone else. ah well... at least I am now officially supposed to be gluten free and can tell my family as much :)
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#8 guest134

 
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Posted 20 November 2012 - 08:05 PM

Going against what others are saying I think you have a good GI, he is not jumping to the conclusion of celiacs until all else is ruled out and getting you properly diagnosed and treated with a nutritionist shows that he cares. Be happy you have someone who is very thorough and is not just handing you a celiac pamphlet and saying get the hell out. At least after all this you can be assured of whatever it is you have.

This is an interesting article on a rare case:
http://www.ncbi.nlm..../pubmed/9672361
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#9 tom

 
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Posted 21 November 2012 - 12:06 AM

Going against what others are saying I think you have a good GI,
...

Are we reading the same story? The Dr who said the blood/antibodies test will work fine despite 4 yrs gluten-free?

That's an ignorant Dr.
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>>>>>>> tom <<<<<<<

Celiac 1st diagnosed as a toddler, in the 60s. Docs then, between bloodletting & leech-tending, said "he'll grow out of it" & I was back on gluten & mostly fine for 30yrs.

Gluten-free since 12-03
Dairy-free since 10-04
Soy-free since 5-07

#10 guest134

 
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Posted 21 November 2012 - 07:31 AM

Are we reading the same story? The Dr who said the blood/antibodies test will work fine despite 4 yrs gluten-free?

That's an ignorant Dr.


I was looking at the whole picture and not every word that came out of his mouth. My only direction is that you can have more than one issue going on at the same time and at least this doctor is taking his time to look into everything.

Unfortunately not everything that comes out of a doctors mouth is always accurate, but this one seems to at least be trying to find the cause.
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#11 rehh05

 
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Posted 21 November 2012 - 11:12 AM

interesting abstract, thanks! Fortunately, they did not find any evidence of crohn's in the pathology report.

it is interesting to me that his first impressions, based on what he saw during the endoscopy and colonoscopy changed dramatically when my pathology report showed villous atrophy. I am glad that that at least now I can say that a doctor has told me I should follow a gluten-free diet... and he does want to make sure I am doing it well and completely... and he does want to see me in a few weeks after I have had time with the dietician... it just frustrated me a little to feel like I was being pushed off onto the dietician and that he really didn't believe that I have been as careful as I think I am being... and maybe he is right... maybe I am being exposed somehow... I do have the damage in there. I just hope we can figure out how to fix it so everything can heal. I worry about not absorbing vitamins and minerals and medicines properly.

But I kinda want to smack him in the head with the blood report I just picked up from his office which says in big all cap pletters that the results of the antigen test would be affected by previous non-gluten diet.

ah well... next hoop... I will jump... I just want to figure it all out. :)
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