Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

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

pain*in*my*gut

Recommended Posts

pain*in*my*gut Apprentice
pain*in*my*gut
Posted

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!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Takala Enthusiast
Takala
Posted

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.

pain*in*my*gut Apprentice
pain*in*my*gut
Posted
  • Author

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!

Gemini Experienced
Gemini
Posted

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!

pain*in*my*gut Apprentice
pain*in*my*gut
Posted
  • Author

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! ;)

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,901
    • Most Online (within 30 mins)
      7,748
    tessycork47
    Newest Member
    tessycork47
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      New (possible) celiac diagnosis

      By trents · Posted

      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      New (possible) celiac diagnosis

      By Judy M · Posted

      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      Patiently Waiting to See Results

      By Scott Adams · Posted

      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      Gluten free beer ?

      By Scott Adams · Posted

      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
    • trents
      Patiently Waiting to See Results

      By trents · Posted

      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.