Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

My Endo Ordered The Celiac Disease Panel Test, ?'s For Anyone

dizzygrinch

Recommended Posts

dizzygrinch Enthusiast
dizzygrinch
Posted

Hello all, I just noticed, that my endrocinologist, ordered a celiac disease panel test, I am being seen by her because of a severe vitamin d deficiency. Weird thing, I was just telling her all my problems, and after I mentioned to her the findings from a GI doc, right when I said "flattened mucosa" she said, "that is Celiacs disease, that would explain why your deficient in vitamin d", so, I told her my GI doc never even mentioned the possibility of Celiacs, she was shocked, and just shook her head. Well, I have been gluten free for about 5 weeks now, and before that, I have cut back a lot. Should I even bother with the blood test? Im also being tested for other things to, the pituitary glands and things, and I didnt even notice until I read the order for the lab that she is checking for celiacs. I wish I would have known that my Endo would check, then maybe I wouldnt have stopped eating gluten. Should I just start cramming gluten down my throat, suffer, and have the blood work done next week? She needs these tests soon, so I was just wondering... any thoughts?

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

Celiac.com Sponsor (A8-M):


leadmeastray88 Contributor
leadmeastray88
Posted

Unfortunately, you're in a bit of a pickle.

5 weeks gluten free may have been enough to change the antibodies in your blood. Even if you cram gluten down your throat for a week, there's a chance your bloodwork will be a false negative.

5 weeks may have also been enough to heal your 'flattened mucosa', although everyone heals differently.

I really don't know what to suggest, although if a clinical diagnosis is important to you then it may not be too late. If you do want to pursue testing you should be eating the equivalent of 4-6 slices of bread per day for 6 weeks, (I think is the recommended intake) and then do the bloodwork. A week isn't long enough.

Hopefully that helps, someone else will probably chime in soon too.

Best wishes!

ThatlldoGyp Rookie
ThatlldoGyp
Posted

Have you had an edoscopy with biopsies taken that showed flattened villi?

That really may be all that you need for a diagnosis. Check the path report from your endoscopy and see what it says (if you had one). That may be all that they need to secure a diagnosis.

I don't know what to tell you about deliberately glutening yourself. Wild horses could not make me do it for anything, personally! I hope you have had the endo and path report and you don't need to walk down that path at all!

Blessings and please keep us updated!

neesee Apprentice
neesee
Posted

I would definately take the blood test if I were you. If I recall, you said the somewhat flattened mucosa was in the terminal ileum. That is the last little bit of the small bowel. A finding like that might be more consistant with crohn's or colitis. You really need to get to the bottom of what is making you feel sick.

Good luck :)

neesee

dizzygrinch Enthusiast
dizzygrinch
Posted
  • Author

Hello all! you do remember correct, it was flattened mucosa in the TI. But, in the same report, he ruled out Chrons and colitis. Said I was normal. So, I just thought it was interesting that the endo decided to check for celiacs. Since Im getting the blood work anyhow, because she is checking other things as well, Im just going to see what it says. Interesting, cause I have been gluten free for so long, I will just tell her that when I see her in three weeks. Now Im really curious on what the results will be, although, sounds like should be normal cause I have been gluten free for so long, but, I will keep you all posted! thanks

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. glucel
      - glucel replied to Bindi's topic in Super Sensitive People
      36

      Refractory or super sensitive?

      I don't react the same way to all of them but do react badly to many of them where others may not. I also have a touch of hypochondria so when the labs come back too high or makes me anxious. I am dismayed but not really surprised that I may be in the small group of people to suffer a particular side effect. I was originally on warfirin. I think that was...
    2. trents
      - trents replied to Bindi's topic in Super Sensitive People
      36

      Refractory or super sensitive?

      What do you mean when you say, "blood thinners are all the same to me"? Do you mean you react negatively in the same way to all of them? Otherwise, they are not all the same. They work in different ways. Aspirin causes the platelets to be less sticky. Warfarin and related meds work by reducing the production of platelets. You might talk to your doctor about...
    3. glucel
      - glucel replied to Bindi's topic in Super Sensitive People
      36

      Refractory or super sensitive?

      That's interesting because I think that the lousy 81 mg irritates my gut. I'm sensitive to drugs in general and blood thinners are all the same to me so aspirin necessary evil. As they say, better to be a live chicken than a dead duck.
    4. Scott Adams
      - Scott Adams replied to Tonya Kane's topic in Gluten-Free Foods, Products, Shopping & Medications
      5

      Water filters and gluten

      I've been using a Brita water filter for well over a decade without any issues. I seriously doubt that these water filter companies would use glues that would end up in your water, as that would be counter to what they are trying to do, which is to purify tap water. Please provide some specific evidence to back this claim up, as such speculation can...
    5. trents
      - trents replied to aperlo34's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      2 months in... struggling with symptoms

      Welcome to the forum, @aperlo34! You said you had a colonoscopy "ordered" in July? Has that procedure happened yet? A colonoscopy cannot be used to diagnose celiac disease so I assume the order for the colonoscopy is to check for something else. The procedure used to diagnose celiac disease is the endoscopy. So, I assume you have had blood antibody testing...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      125,937
    • Most Online (within 30 mins)
      7,748
    AmyD73
    Newest Member
    AmyD73
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • glucel
      Refractory or super sensitive?

      By glucel · Posted

      I don't react the same way to all of them but do react badly to many of them where others may not. I also have a touch of hypochondria so when the labs come back too high or makes me anxious. I am dismayed but not really surprised that I may be in the small group of people to suffer a particular side effect. I was originally on warfirin. I think that was the one where I had trouble with vitamin k numbers and or was anemic with low hemoglobin, red blood cells etc.  My blood pressure drops to very low numbers after taking something as simple as turmeric for a few weeks. My diastolic had touched 50 one day before I finally figured out that the herb was the problem. No intention to go for 40 so never looked back. I wanted to try benfothiamine but one of the listed side effects is bradycardia and other stuff that I am not going to challenge esp since I have had and still have to a lesser degree heart rhythm problems. 
    • trents
      Refractory or super sensitive?

      By trents · Posted

      What do you mean when you say, "blood thinners are all the same to me"? Do you mean you react negatively in the same way to all of them? Otherwise, they are not all the same. They work in different ways. Aspirin causes the platelets to be less sticky. Warfarin and related meds work by reducing the production of platelets. You might talk to your doctor about alternatives to aspirin. 
    • glucel
      Refractory or super sensitive?

      By glucel · Posted

      That's interesting because I think that the lousy 81 mg irritates my gut. I'm sensitive to drugs in general and blood thinners are all the same to me so aspirin necessary evil. As they say, better to be a live chicken than a dead duck. 
    • Scott Adams
      Water filters and gluten

      By Scott Adams · Posted

      I've been using a Brita water filter for well over a decade without any issues. I seriously doubt that these water filter companies would use glues that would end up in your water, as that would be counter to what they are trying to do, which is to purify tap water. Please provide some specific evidence to back this claim up, as such speculation can cause undo fear, as well as reputational damage to these companies. Don't get me wrong here, I am not saying that this isn't possible, but is very unlikely.
    • trents
      2 months in... struggling with symptoms

      By trents · Posted

      Welcome to the forum, @aperlo34! You said you had a colonoscopy "ordered" in July? Has that procedure happened yet? A colonoscopy cannot be used to diagnose celiac disease so I assume the order for the colonoscopy is to check for something else. The procedure used to diagnose celiac disease is the endoscopy. So, I assume you have had blood antibody testing done and it was positive and then you had an endoscopy/biopsy done to confirm those results? That is the normal process for diagnosing celiac disease. Have your constipation/irregularity problems improved since going gluten free? Some of the continuing symptoms you describe would seem to fall into the category of neurological effects (muscle twitching, shakiness, weakness and headaches) and others such as dry eyes, fatigue, stiffness and joint aches sound like they could be autoimmune effects. Are you taking any high potency to vitamin and mineral supplements? Celiac disease often/typically results in vitamin and mineral deficiencies due to malabsorption from the damage to the small bowel lining it causes. I note that your vitamin D levels are barely within normal range and the only B vitamin testes is B12. The B vitamins and D3 are very important to neurological health. And the several B vitamins all work together synergistically. So, they all need to be up to snuff, not just B12. I would suggest starting on D3 supplementation in the amount of about 5000 IU daily and also a high potency B-complex. Costco's Nature Made and Kirkland brand products are good quality and priced well and usually gluten free (and will state so on the packaging). Realize also that gluten free flours and facsimile foods are not fortified as are their FDA mandated gluten equivalents. So, when you cut out gluten, you cut out a significant source of vitamins. One thing to be aware of is that Celiac disease is an autoimmune disorder and autoimmune disorders tend to cluster. That is, when you have one you there is a good chance you will develop others in time. I don't wish to alarm you because I know you have said you already struggle with heath anxiety but many of your symptoms make me think you have some other autoimmune condition going on in addition to celiac disease. Have you been checked for Sjogren's or lupus for instance?  Finally, I am including an article that is helpful to newly diagnosed celiacs in getting a head start on the learning curve of eating gluten free:   
×
×
  • Create New...