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

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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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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! ;)

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    • I think the idea of grinding your own at home stems from the thought that flavored coffees might be ground on the same machines.  The grinders in the grocery are not cleaned between uses.  However, I have not found a flavored coffee bean that had gluten, so it's probably not a real concern.  For coffee that comes from a factory ground, I wouldn't worry at all.   Machines would be cleaned between flavors and nothing but coffee could be made on the machines or even in the same building ( everything made would taste/ smell like coffee). if you still have doubts - I went to the International Celiac Disease Symposium a few years back.  This is held every few years in different countries for medical professionals that study and treat Celiac.  They present research, etc.  All food served was gluten-free.  We drank a lot of plain, already ground, coffee!  A lot!   Coffee is not on any lists as a gluten containing food.  Talking legitimate organizations - not some blogger or pseudo- science website.   After all this, if you still doubt that coffee is gluten free...... Then don't drink it!  It leaves more for me!    
    • To answer some of your questions.... Non celiac gluten sensitivity does not cause any damage to the small intestine so that is not the source of the "little holes or bumps".  You need to get her records including the report of the endoscopy to see exactly what it says as well as the pathology report of the biopsies. You should always get medical records anyway & keep a copy for yourself. How many biopsies did he take? There should be a minimum of 4, ideally 6. The small intestine is very vast even in a small child. An adults is the size of a tennis court! That's a whole lot of territory so biopsies can miss damage especially when enough of them are not taken! She has 2 positives on the serum panel. This crap about "weak" positives should be thrown out of the nomenclature! A positive is a positive, weak or not! Her DgP IGG is way over the range and extremely telling. As far as my knowledge goes, there is nothing else that causes a positive DgP IGG other than celiac disease. False positives are really rare and to have 2 false positives would be astronomically rare! You are right & smart that she really does need an official diagnosis! IMHO, keep her on gluten for right now. Get a second opinion pronto & I believe you'll be able to get her a dx based on the 4 out of 5 rule if nothing else. I wouldn't think it's going to take more than a month to get to see another doc for a second opinion. Then you can take her off gluten. Kids heal up really fast, way faster than us old geezers! I'm sure as others  wake up & get on their computers they will be along to voice their knowledge. I am in the eastern time zone & rise before the birds so I was on here early. Hang in there mom! You're doing the right thing!
    • Now that my initial rage has calmed a tad.... your daughter has to fulfill 4 out of 5 of the diagnostic criteria. Second opinion can do a gene test. If positive, then she will have4 out of 5 of the dx criteria to dx without a positive biopsy. See: http://www.gastro.org/news_items/a-biopsy-should-not-be-required-to-make-the-diagnosis which says in part: The presence of signs and symptoms compatible with celiac disease. Positive serology screening (high serum levels of anti-TTG and/or EMA). Presence of the predisposing genes HLA-DQ2 and/or –DQ8. Histological evidence of auto-insult of jejunal mucosa typical of celiac disease. Resolution of the symptoms and normalization of serology test following the implementation of a gluten-free diet.   Also see: http://www.tenderfoodie.com/blog/2014/5/1/dr-fasano-on-new-gut-autoimmune-research-autism-clearing-up.html She can get a dx after her symptoms resolve on a gluten-free diet!
    • OMG!!!! The doc wants her to get sicker & sicker & do further damage so he can diagnose her? Don't do me any favors doc!!! I'm so spitting med right now I can't even speak! Find a new doc, take the records & get a second opinion. Maybe the next doc will have a freaking brain & dx your daughter. She should be dx'd! This is absurd in the extreme. The very least that should happen is the doc give her a dx now & then in a year or 2 have her do a gluten challenge & do a biopsy all over again but seriously, that would be just as cruel as what he's doing now. He's an ASS!
    • Celiac disease may lead to a host of other inflammatory, gluten-related ... Fortunately, Diet Doc offers gluten-free diet plans which are customized to ... View the full article
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