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

This Doesn't Seem Like Celiac To Me


Pagosapig

Recommended Posts

Pagosapig Newbie

So my doctor thinks I may have celiac disease, but the longer I am gluten free the less I am convinced. I have been gluten free for almost nine months now and I really haven't had any significant improvement. Initially I had some improved symptoms (but I tend to attribute this to being more deliberate about taking the right medications at the right time). When I stopped taking my medicine (antidepressants and Imodium) my symptoms return. I do eat gluten free, but the foods I eat without terrible D seems to be chicken and peanut butter...which isn't really a good mix for prolonged health. I met with my dietician recently and we tried to make out a list of new foods to try. So naturally I tried following here list to the letter, within 24 hours of trying to introduce more complex foods I had terrible symptoms (prepare for some serious tmi here folks) I had terrible stabbing pains on the left side of my abdomen that have lasted for a week (though have diminished in intensity), fairly consistent diarrhea, nausea, loss of appetite and occasional blood in my stool. Now these didn't seem like celiac to me so I went in to urgent care, they sent me for blood test and a small bowel follow through. I have not heard back from these yet since it’s the weekend. To me these seemed like some kind of IBD, does anybody have any input or words of wisdom about this?

 

It should be noted that my doctor thinks that I have celiac because I have one of the genes that makes it more likely, even though the biopsies they have taken and what they have seen in my colonoscopy/endoscopy have not shown any villi damage.


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



Celiac.com Sponsor (A8-M):



SMRI Collaborator

Did your doctor do the blood tests for celiac before you went gluten free? Having one of the genes is not enough to make a diagnosis!

Pagosapig Newbie

My doctor did the blood test, but my iga levels were not elevated very much at all. Not in the range you'd expect for celiac. Thats why I am suspisious that this isn't celiac

kareng Grand Master

Having the gene does not mean you have Celiac. I would push the doctor to look for other things. And.... From my understanding, it isn't a good idea to just stop taking antidepressants. You may need those - no matter what other health issues you have.

You could show your doctor this:

Open Original Shared Link

nvsmom Community Regular

So you did have a positive test, it just wasn't a high normal?  With celiac tests, generally a positive is a positive - just like a pregnancy test.  The tTG IgA can occassionally (<5%) get a weak false positive that is caused by thyroiditis, diabetes, chronic liver disease, colitis, crohn's, or a serious infection, but usually it is celiac disease.

 

These are the tests for celiac disease:

tTG IgA

tTG IgG

DGP IgA

DGP IgG

EMA IGA

(AGA IgA and AGA IgG - older and less reliable tests)

total serum IgA - not a celiac disease test but a control test to check for IgA deficiency which can cause false negatives

 

It sounds like you have some other serious food sensitivities.  Have you tried the FODMAP diet?  Some have problems with histamines (mast cell activation disorder).  Some just react to certain foods like corn, nightshades, and/or dairy.  Maybe you fit i there somewhere.

 

I hope you feel well soon.

Edited to change a word "positive" to "normal"

Pagosapig Newbie

The range my Iga test fell in was just at 4%, which from my research sounded like a false positive. And since my biopsies didn't show anything conclusive it makes me think that it is time to look into anything else. I have tried the low fodmap diet and I also found no relief and I have done my best to rule out any common food sensitivities. As far as mast cell activation disorder nothing has shown up like that on my blood tests, but I will definitely bring it up and see if that's a possibility. Since it seems to be nonresponsive I'm curious about the possibilties of something chronic

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,120
    • Most Online (within 30 mins)
      7,748

    Brayprince84
    Newest Member
    Brayprince84
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • BlakeAlex
      I am 70 years old but very active. Yes, that is the GI Reset and didn't see any issue from using it the first two weeks. I realized the Aleve may not be gluten free and I have reacted to those pills. I am taking AlgaeCal - Natural Algae Calcium Supplements To Increase Bone Density.  It is the swelling of the throat and blisters on the back of the tongue which worries me. I have not seen anyone report these symptoms. Thank you   Blake  
    • Zuma888
      Hello, I was diagnosed with Hashimoto's thyroiditis about 3 years ago. At that time I quit gluten and it really helped my symptoms. I hadn't known that I should've tested for celiac before doing so.  Up till recently, gluten would cause my symptoms to flare up, although I never noticed anything with cross contamination, so I wasn't strict about that. But recently, I noticed I could get away with more gluten, and so I decided to do a gluten challenge to see if I had celiac and if I had to be strict. Note that my thyroid antibodies had been decreasing steadily up to this point. My anti-TPO had reached 50 IU/ml from 250 IU/ml (reference range 0-5.6) when I had first been diagnosed. After just a week of the gluten challenge, I measured my thyroid antibodies and they were at 799 IU/ml! I felt fine, but a few days after I started to feel the symptoms. Extreme brain fog, insomnia, diarheaa, fatigue, sleepiness yet cannot sleep, stomachache after eating gluten, nausea, swollen throat (probably due to my thyroid), burping, and gas. I cannot function properly. I'm also worried that I'm killing my thyroid. Should I just quit the challenge? It's been almost two weeks, but the first week I wasn't tracking well, so that's why I didn't want to count it. I can't eat gluten anyway because of my thyroid, but I wanted the diagnosis to know if I should be strict about cross contamination or not.  
    • Zuma888
      You really saved me as I was on day 4 of 3 g per day for 6 weeks. Thank you very much!
    • trents
      Two weeks is the minimum according to the guideline. I would go for four weeks if you can endure it, just to make sure.
    • Zuma888
      Thank you so much! So I can do 10 g worth of gluten in the form of gluten powder per day for two weeks and that should be enough?
×
×
  • Create New...