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I'm So Frustrated, Please Help Me Out!
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13 posts in this topic

Here's my story

First Dr. in August of 2004 did blood work and colonoscopy not sure what he was going to find. His assistant called 1 week later and said b/w showed celiac disease and get on the gluten-free diet, which I did. When I called back 2 months later to discuss my progress he literally laughed at me for going gluten-free because my b/w was only partially marked by celiac disease. Here are my results.

Blood work from Dr.'s lab:

IgA <20

IgG H39 (moderate to stong positive)

Ttg <20

So, I went ahead and did some testing of my own with Kimball and Enterolab to show him. He of course blew those away also because he said I still didn't have enough markers for celiac disease. See test below.

Kimball Genetics cheek swab:

DQ2 (DQA1*05/DQB1*02) negative

DQA1*0501 or *0505 detected

DQB1*0201 or *0202 not detected

DQ8 (DQB1*0302) positive

DQB1*0302 detected

EnteroLob stool sample:

IgA 39 units (negative <10)

Ttg 37 units (negative <10)

Fecal Fat 88 units (negative <300)

I also tested positive for yeast (21 units) and milk (27 units).

I went for a second opinion with another Dr. who has experience with celiac disease. He also mentioned that "normally" the only confirmed diagnosis that a Dr. will accept is an endoscopy. He did agree that I did not have enough of the celiac disease markers as well.

So after being gluten-free for 8 months, I went off the diet for 4 weeks, feeling horrible and having my migranes return (which went away after 2 months gluten-free). Well, you guessed it, a negative biopsy.

Could it just be that I have an intolerance to wheat and not celiac disease? I just don't know what to do next. I'm thinking of just keeping a food diary for a few months if I have to and mark all symptoms down and take it back to him. I'm just so angry that I can't get a conclusive answer. I've also thought about trying the IBS diet and seeing what results I have with that, but my brain says that the Enterolab results just can't be wrong and I should stay away from the wheat.

Any feedback would so greatly be appreciated.

Laura

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Here's my story

First Dr. in August of 2004 did blood work and colonoscopy not sure what he was going to find. His assistant called 1 week later and said b/w showed celiac disease and get on the gluten-free diet, which I did. When I called back 2 months later to discuss my progress he literally laughed at me for going gluten-free because my b/w was only partially marked by celiac disease. Here are my results.

Blood work from Dr.'s lab:

IgA <20

IgG H39 (moderate to stong positive)

Ttg <20

So, I went ahead and did some testing of my own with Kimball and Enterolab to show him. He of course blew those away also because he said I still didn't have enough markers for celiac disease. See test below.

Kimball Genetics cheek swab:

DQ2 (DQA1*05/DQB1*02) negative

DQA1*0501 or *0505 detected

DQB1*0201 or *0202 not detected

DQ8 (DQB1*0302) positive

DQB1*0302 detected

EnteroLob stool sample:

IgA 39 units (negative <10)

Ttg 37 units (negative <10)

Fecal Fat 88 units (negative <300)

I also tested positive for yeast (21 units) and milk (27 units).

I went for a second opinion with another Dr. who has experience with celiac disease. He also mentioned that "normally" the only confirmed diagnosis that a Dr. will accept is an endoscopy. He did agree that I did not have enough of the celiac disease markers as well.

So after being gluten-free for 8 months, I went off the diet for 4 weeks, feeling horrible and having my migranes return (which went away after 2 months gluten-free). Well, you guessed it, a negative biopsy.

Could it just be that I have an intolerance to wheat and not celiac disease? I just don't know what to do next. I'm thinking of just keeping a food diary for a few months if I have to and mark all symptoms down and take it back to him. I'm just so angry that I can't get a conclusive answer. I've also thought about trying the IBS diet and seeing what results I have with that, but my brain says that the Enterolab results just can't be wrong and I should stay away from the wheat.

Any feedback would so greatly be appreciated.

Laura

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Deleted by poster. See my below post.

Edited by Coulter
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If you were gluten free for 8 months and then only went back on gluten for 4 weeks then a negative biopsy could result in that. They recommend a good 3 months of heavily consuming gluten before testing.

The Enterolab is a good test even though it is not widely accepted by the medical community. I have heard nothing but great things about it and they are on to something big. Also 98% of celiacs have the DQ2 or DQ8 gene....you have the DQ8 gene.

Before you had blood tests the first time were you gluten free? When they did the colonoscopy what did they conclude?

Did you notice a big difference after going gluten free? It sounds like you definitely have a problem with gluten.

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Laura--yes, you could be gluten intolerant and are on the way to full blown celiacs--Dr. Green says that if you do have the DQ 8 gene, then chances are good you could be celiac--at any rate--if you feel better gluten-free then go gluten-free--dont let any doctor change your mind about it--i feel you are a celiac and they just have not found the spot that shows them--its your body, your health--take care of it--its the only one you will ever have---Deb

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Thank you Kaiti for your reply.

The initial blood work and colonoscopy from the first Dr. was NOT gluten-free. When I did Kimball and Enterolab, I had only been gluten-free for 1.5 months.

I definately did feel better gluten-free, but not 100% which was why Dr. #2 wanted the endoscopy. I told him all of my concerns about not having enough damage or sporadic and he assured me he would do multiple biopsies.

I guess there could have been cross contamintation issues as DH is not gluten-free. I will go back to gluten-free and try to be more careful and see if I can't get to being 100% better. I had been sick for so many years, I was looking for a conclusive answer, but I don't think I'm going to get one :(

Thanks again,

Laura

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It's good you were feeling better though. At least you know there is a gluten issue.

When you went gluten free were you 100% gluten free? Like did you check lipsticks (alot have wheat starch) and other products that you put on your hands, face, and head which can easily get into your mouth.

Is there a reason why you need an official diagnosis. The only way to go for that is go on gluten for 3 months but if that causes problems is that worth it? Especially when you have positive Enterolab and a main gene.

If you need any help with anything let me know :D

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I agree with Kaiti, if you know that your body reacts badly to gluten, and is better without, then why put yourself through any more frustration and pain with further testing. You DO show markers for celiac, you just may not have sustained large amounts of damage yet. IMHO gluten intolerance is GLUTEN INTOLERANCE and you know your body better than any dr. Especially since most of the Dr's out there are operating under outdated information and with labs that don't know how to read the test results.

I'm so glad my Dr. recognized all of my symptoms as Celiac BEFORE he did test one. He saved me so much unnecessary suffering and pain and got me onto the road to recovery so much quicker. When I went to him for my yearly follow ups the first year gluten-free and then the second year gluten-free, he was so pleased with my recovery and I'm so pleased too!

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I, like you, have a nin-com-poop for a doctor. YOU and only YOU know your body and what you need for it. If you can shop for another doctor do it, if you can't, go to your appointment and leave knowing you know more than someone who spent way too much money on their college education! If it makes you feel better, treat yourself as if you a celiac, diagnosis or not (thats what I do :D ). I am finally starting to feel better now that I don't live and breathe what the doc says. That doc does not have to live with your body, you do, so you do what you need to to be healthy!

Christi

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oh and Laura,

If you are like me and think you need an official diagnosis to prove you are not insane and this is all in your head, here is your official diagnosis.

positive celiac disease!!!!

ok, so it may be your favorite music celiac disease, celiac's disease, or Christi's dementia,

You decide ;)

Christi

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I have a friend that is allergic to wheat (shows up on allergy tests), but negative blood tests for celiac. Has a physical reaction to wheat without the villi damage...

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Sorry, everyone, this post will look a little weird. There were two posts made and I said DUPLICATE under one, but posted right before Deb did, so she hadn't seen the notice. Then someone else posted under Deb, etc. Meanwhile the other topic also developed. So I just merged them--hence, the two first posts say the same thing.

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Thank you all so much for your responses. I'm so tired of going around in circles, and you have helped me out with your words of wisdom.

Kaiti, I know you asked why I was looking for an official diagnosis, and I guess my answer to that is because both Dr's were trying to tell me that it must be something else because the diet was not working 100%, only about 80%. And because some of my b/w was border line, I was starting to believe them.

So, I am going to go back on the diet and be way more careful with not just food, but also the beauty products, as well as taking the dairy out which Enterolab says I have an issue with too. I am going to ignore the dr's for now and see how things go for a few weeks.

Thanks again for all your support.

Laura

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