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

To Gluten Challenge, or not to Gluten Challenge?


CeliacSally

Recommended Posts

CeliacSally Newbie

In the past I have struggled chronic pain, fatigue, irritability and IBS-like symptoms almost everytime I eat. I found myself feeling uncomfortable almost all the time and couldn't figure out why. I tried eliminating certain things from my diet (dairy, sugar, etc.) and found that when I stopped eating gluten I started feeling much better. I have not officially been tested for celiacs, but I have quasi-diagnosed myself. I would like to have an official diagnosis from a doctor. However, I have heard you must start eating gluten again (or complete the ¨gluten challenge¨) in order to do so, and I'm not sure the pain would be worth it.  Any suggestions, or do I have any other options in order to be diagnosed?


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



Celiac.com Sponsor (A8-M):



squirmingitch Veteran

I'm sorry, there are no other options to being diagnosed. You will have to do a gluten challenge.

Open Original Shared Link

pippylongstocking Newbie
8 hours ago, CeliacSally said:

In the past I have struggled chronic pain, fatigue, irritability and IBS-like symptoms almost everytime I eat. I found myself feeling uncomfortable almost all the time and couldn't figure out why. I tried eliminating certain things from my diet (dairy, sugar, etc.) and found that when I stopped eating gluten I started feeling much better. I have not officially been tested for celiacs, but I have quasi-diagnosed myself. I would like to have an official diagnosis from a doctor. However, I have heard you must start eating gluten again (or complete the ¨gluten challenge¨) in order to do so, and I'm not sure the pain would be worth it.  Any suggestions, or do I have any other options in order to be diagnosed?

Hi C-Sally,

I never had the biopsy for the same reason, I am not willing to have it if it means I have to eat gluten.   That is cruel and unusual punishment imo.  Instead, I went to a naturopath doctor for assistance.  At first it was hard; I was a vegetarian and had to start eating clean meat and organic veggies, and I had to eat lot of it to gain weight (6 full meals a day), I was 5 pounds under the BMI.  Over time I have added new foods and have found out what is upsetting to the digestion (sugar, coffee, and many fruits). I also found that taking probiotics made things worse (loose), so for now I am not taking them.   If constipation is your issue, probiotics are good, they can cause loose stools or diarrhea.  

(I am not a doctor and I am not telling anyone to do what I do)  Here is what helped me. I take quality digestive enzymes (enzymedica digest complete formula), (Country Life) coenzyme  B comp, and (Yarrow) L-glutimine have all helped.  The L-glutimine really helped a lot with the muscle pain!!!  I take double of what it says to per the ND

I have discovered that the pain I was having was in part  from lack of nutrition.  I don't know if this is the case for you, but it has taken me since June of this year to finally be out of pain, muscle spasms all over, and debilitating fatigue.  I am still very weak still, but much better.  Gladly, I can walk and clean house now.  

This is such a challenging disease on so many different levels.  You are not alone! Hang in there, your body does want to heal, but it takes time and do diligence.  

Also, i do gentle/trauma yoga, light weights, light dancing, and daily walking.  The ND also said to chew food till it is pulverized, sip a bullet drink all day made of  of kale, spinach, (any dark greens) beets, very small amounts of blueberries/blackberries/sour cherries, to make it palatable. All organic.  Anything organic, but not too much fruit. 

I was diagnosed after nearly dying. This is a life changing disease; most folks do not understand how hard it is, not only how we have to eat, but the emotional pain from others not supporting us.  

and you know this, but drink lots of water!


hang in there!

Best regards,

Pip

 

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,202
    • Most Online (within 30 mins)
      7,748

    PatBurnham
    Newest Member
    PatBurnham
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
    • Xravith
      I'm very confused... My blood test came out negative, I checked all antibodies. I suppose my Total IgA levels are normal (132 mg/dl), so the test should be reliable. Still, I'm not relieved as I can't tolerate even a single biscuit. I need to talk to my doctor about whether a duodenal biopsy is necessary. But it is really possible to have intestinal damage despite having a seronegative results? I have really strong symptoms, and I don't want to keep skipping university lectures or being bedridden at home.
    • Scott Adams
      They may want to also eliminate other possible causes for your symptoms/issues and are doing additional tests.  Here is info about blood tests for celiac disease--if positive an endoscopy where biopsies of your intestinal villi are taken to confirm is the typical follow up.    
    • Scott Adams
      In the Europe the new protocol for making a celiac disease diagnosis in children is if their tTg-IgA (tissue transglutaminase IgA) levels are 10 times or above the positive level for celiac disease--and you are above that level. According to the latest research, if the blood test results are at certain high levels that range between 5-10 times the reference range for a positive celiac disease diagnosis, it may not be necessary to confirm the results using an endoscopy/biopsy: Blood Test Alone Can Diagnose Celiac Disease in Most Children and Adults TGA-IgA at or Above Five Times Normal Limit in Kids Indicates Celiac Disease in Nearly All Cases No More Biopsies to Diagnose Celiac Disease in Children! May I ask why you've had so many past tTg-IgA tests done, and many of them seem to have been done 3 times during short time intervals?    
×
×
  • 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.