• Join our community!

    Do you have questions about celiac disease or the gluten-free diet?

  • Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
0
pain*in*my*gut

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

Rate this topic

Recommended Posts

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!

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


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.

Share this post


Link to post
Share on other sites

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!

Share this post


Link to post
Share on other sites

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!

Share this post


Link to post
Share on other sites

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! ;)

Share this post


Link to post
Share on other sites
Ads by Google:


Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

0

  • Forum Statistics

    • Total Topics
      108,946
    • Total Posts
      943,630
  • Member Statistics

    • Total Members
      67,291
    • Most Online
      3,093

    Newest Member
    Babyleprechaun
    Joined
  • Topics

  • Posts

    • They have all given you good advice. Like Ennis_Tx said this is not medical advice. Just some observations. Ennis_Tx mentioned already a good B-complex. But people who have Perncious Anemia low B-12 have "Pens and Needles' feeling in their extremities. Mine was much more pronounced when sleeping. . . while sleeping my nerve ending would go to sleep. This would wake me from my sleep.  I would shake them awake/loose much like a leg that had fallen asleep while awake.  We have all felt that feeling before except the whole side of body's nerve ending would tingle/fall asleep enough to wake me from my sleep. Once taking a homocysteine tablet (B6,b12 and folic acid) tablet call FABB for the abbreviated ingredients under doctor's supervision this "pens and needles' went away. This also happened in my finger and toe tips while awake as if I had pinched a nerve in my back. These sensations are now in remission. Also if you think it is Rynaud's then try Niacin or Niacinamide.  It is a natural vasodialotor and the 'warm sensation" people take when using Niacin especially in a work out supplement is Niacin they add to enhance athletic performance for body builders.. . . because this opens capillaries approx. 10 % more allowing more air into the muscles thus improving their work out. This flushing goes away after a couple days of using Niacin.  The Niacinamide form does not flush the way the Niacin form does but provides the same benefit. Both Niacinamide and Magnesium each lower blood pressure approx. 10% each this way.  But if BP is a real problem for you  take the Homocysteine tablet mentioned above or just Folic Acid by itself. My BP is now normal after taking Folic Acid because it controls' how/what triggers constriction in our blood vessels thus effectively controlling BP. These are some times that I have used to improve my circulation. *** again this is not medical advice just things that have helped me with similar issues.  I hope this is helpful. 2 Tim 2:7 “Consider what I say; and the Lord give thee understanding in all things” this included. posterboy by the grace of God,
    • Thank you for your advices, Kareng and Ennis_TX. Hope you guys are still doing well with celiac. I will ask my doctor about the preparation for the Celiac screening and lymph node checking. By the way, do these test cost much? To Ennis_TX: Did you do any test or check for your lymph nodes, when you noticed them swelling. And did you have many of them? did you member their size? Were they hurt you. Sorry for asking to much. My doctor just told me do ultra sound. I dont know should I ask her to do another tests to make sure the reason of swelling lymph nodes
    • IF your still getting cramps look into supplementing with Magnesium, either Natural Vitality Calm or Doctors best in the glycinate powder. Depending on other symptoms and the way your body works depends on which form is best. Calm is best if you have hard stools, do not go daily with a BM you start it off small 1/4tsp and work it up to the full dose over a week or two. If you get loose stools cut back as you dose this to tolerance. Doctors best is easier on the stomach and will not cause D or loose stools like Calm but can cause you to really relax too much and cause very vivid dreams (this is a good sign that it is working) You will notice the cramps lessen with both of these. The cramps in combination with the numbness is a sign of magnesium deficiency which is caused by your damaged intestines normally and can be made worse by PPIs and a few other issues.
    • There is a test called Biocard available in Canada.  It is a home test kit.  Should be cheaper than $125.  Biocard is NOT a genetic test though.  Genetic tests are of limited usefulness.  
  • Upcoming Events