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Please Help! Positive Blood Test After Over A Year Of Gluten Free!


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4 replies to this topic

#1 pain*in*my*gut

 
pain*in*my*gut

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Posted 05 December 2012 - 04:53 PM

Hi all! I have been gluten-free since September 2011, and my tummy has been good. Up until 6 weeks ago! I started having bouts of diarrhea, bloating, gas and reflux. Then the dreaded left sided abdominal pain came back (this was what lead me to my Celiac dx in the first place). My current GI, who is clueless about Celiac, wants me to have an upper GI barium study done. Before I agreed to that, I asked him to recheck my Celiac panel, because my symptoms were like I had been glutened. Lo and behold, my DGP antibodies are still elevated! They came down from 59 to 29 (anything over 19 is positive). I have been out to eat several times over the past few weeks that I could have been glutened, but would that make my antibody go up? I thought it took more of an ongoing CC issue to keep antibodies elevated. I have been less OCD about cross contamination lately, so I guess it's possible I'm getting gluten from somewhere.

I am NOT getting the barium GI study done! What a waste! It's obvious there is gluten getting in me somewhere, somehow. My GI isn't convinced that I even have Celiac because my biopsy was negative, even though I have 4 out of the 5 diagnostic criteria (+ blood work, + genes, symptoms consistent with Celiac and a positive response to the gluten-free diet). Not to mention 4 other auto-immune diseases, including Hashimoto's thyroiditis! But because my biopsy was neg, he refuses to treat me as Celiac. Whatever...I'm not going back to him!

So I guess my question is would a few instances of glutening cause my DGP to still be elevated, or do I need to assume that even a crumb of gluten here and there from CC is causing my issues? Thanks!
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Celiac DX 9/2011 ~ Gluten free ever since
Hashimoto's Thyroiditis 10/2011
Premature Ovarian Failure 11/2010
Rheumatoid Arthritis 10/2011
Sjogren's Disease 10/2011

"The best way out is always through" ~Robert Frost

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#2 Takala

 
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Posted 05 December 2012 - 06:50 PM

Well, that's a bummer.
Say, while you're in a state of having a positive blood test, :rolleyes: could you possibly finangle another biopsy from some other GI ? :lol: ( just kidding.... :ph34r: )

So, it is just a matter of figuring out where the gluten has crept into your life, again, and eliminating it. So, first ask: has anything changed recently in your life ? Medications ? Got a pet ? New foods ? New grocery store ? One of my favorite treats recently changed their label to now say "processed in a facility with.... wheat " I nearly had smoke coming out of my ears, as my spouse had purchased it for me, and I won't touch it without more research, I can't think of anything more freaking annoying than something labeled gluten free now putting that on the label. WTF. On the other hand, I recently accidentally ate something not labeled, as such, which I very seldom do, especially in that food category, and didn't react, which was strange, and then when I went back to the store, the new bags had the "Gluten Free !" label now on the front. Now, I just hope they don't screw them up.
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#3 pain*in*my*gut

 
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Posted 06 December 2012 - 10:53 AM

My GI doc actually said that if my Celiac panel came back positive, then we would "obviously" do another biopsy to try to get that positive biopsy. I told him I didn't need a positive biopsy to convince me that I have Celiac, and that the +DGP was enough for me (and my rheumatologist). He disagreed, and said there were other things that could cause positive bloodwork. When I asked him what "other things" he started talking about the ttG test. Right, but what about the DGP, which is more specific than ttG for Celiac? He wasn't even familiar with what I was talking about! I had to explain what DGP stood for and how it indicated an immune response to gluten. He got all defensive and said I still needed further testing. What an idiot!

I am pretty sure that a have been glutened at least 5 times over the last few months. We have been eating out more, and I have been lax about making sure stuff like salad dressings are gluten-free. There is a new Chineese restaurant that we have eaten at several times that has a gluten free menu, but I am worried that they might not have known that soy sauce has gluten or there is CC going on in their kitchen. I am going to talk to the manager before I eat there again to make sure!


  • 0
Celiac DX 9/2011 ~ Gluten free ever since
Hashimoto's Thyroiditis 10/2011
Premature Ovarian Failure 11/2010
Rheumatoid Arthritis 10/2011
Sjogren's Disease 10/2011

"The best way out is always through" ~Robert Frost

#4 Gemini

 
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Posted 06 December 2012 - 01:48 PM

Hi all! I have been gluten-free since September 2011, and my tummy has been good. Up until 6 weeks ago! I started having bouts of diarrhea, bloating, gas and reflux. Then the dreaded left sided abdominal pain came back (this was what lead me to my Celiac dx in the first place). My current GI, who is clueless about Celiac, wants me to have an upper GI barium study done. Before I agreed to that, I asked him to recheck my Celiac panel, because my symptoms were like I had been glutened. Lo and behold, my DGP antibodies are still elevated! They came down from 59 to 29 (anything over 19 is positive). I have been out to eat several times over the past few weeks that I could have been glutened, but would that make my antibody go up? I thought it took more of an ongoing CC issue to keep antibodies elevated. I have been less OCD about cross contamination lately, so I guess it's possible I'm getting gluten from somewhere.

I am NOT getting the barium GI study done! What a waste! It's obvious there is gluten getting in me somewhere, somehow. My GI isn't convinced that I even have Celiac because my biopsy was negative, even though I have 4 out of the 5 diagnostic criteria (+ blood work, + genes, symptoms consistent with Celiac and a positive response to the gluten-free diet). Not to mention 4 other auto-immune diseases, including Hashimoto's thyroiditis! But because my biopsy was neg, he refuses to treat me as Celiac. Whatever...I'm not going back to him!

So I guess my question is would a few instances of glutening cause my DGP to still be elevated, or do I need to assume that even a crumb of gluten here and there from CC is causing my issues? Thanks!


Geez...you are like my twin! I have a Celiac diagnosis like yourself, based on all the positive criteria except I refused the endo. At 94 pounds at time of diagnosis, plus all the other positive stuff, you'd have to be a complete idiot to question whether I have Celiac. I never go to GI doctors because I have yet to find one that didn't sound like yours. :blink:

I also have Hashi's and Sjogren's so can understand your suffering. Lovely combo, huh? :(

What I do want to suggest...and you won't like this.....you have to stop eating out for awhile. You are eating out more regularly than a Celiac should and now your DGP is elevated, with symptoms. I bet it's the eating out. I would quit for awhile and I bet you'll feel better and your blood work will return to normal. Then you can investigate eating out again, only being more careful about the food prep. I know, it's a pain in the butt but I think that, unless you are glutening yourself from your own kitchen, it's the eating out that is doing it.

Take care and I hope you feel better soon!
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#5 pain*in*my*gut

 
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Posted 06 December 2012 - 02:38 PM

Geez...you are like my twin! I have a Celiac diagnosis like yourself, based on all the positive criteria except I refused the endo. At 94 pounds at time of diagnosis, plus all the other positive stuff, you'd have to be a complete idiot to question whether I have Celiac. I never go to GI doctors because I have yet to find one that didn't sound like yours. :blink:

I also have Hashi's and Sjogren's so can understand your suffering. Lovely combo, huh? :(

What I do want to suggest...and you won't like this.....you have to stop eating out for awhile. You are eating out more regularly than a Celiac should and now your DGP is elevated, with symptoms. I bet it's the eating out. I would quit for awhile and I bet you'll feel better and your blood work will return to normal. Then you can investigate eating out again, only being more careful about the food prep. I know, it's a pain in the butt but I think that, unless you are glutening yourself from your own kitchen, it's the eating out that is doing it.

Take care and I hope you feel better soon!


Yeah, I know you are right. That is the plan for at least several months. :( I was definitely getting very complacent about making extra super sure my food was gluten-free. I even had nachos with queso dip at the movies a few weeks ago without even asking if it was gluten-free! Odds are it was NOT, as I was really sick that night. Duh. Live and learn! Thanks for your reply! ;)
  • 0
Celiac DX 9/2011 ~ Gluten free ever since
Hashimoto's Thyroiditis 10/2011
Premature Ovarian Failure 11/2010
Rheumatoid Arthritis 10/2011
Sjogren's Disease 10/2011

"The best way out is always through" ~Robert Frost




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