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

Stool Tests?

jswog

Recommended Posts

jswog Contributor
jswog
Posted

OK, so all of the doctors here is this little hick town are blooming idiots! I've had people suggest that I look into the stool testing for diagnostics and we're checking with our insurance to see what kind of coverage we can get on that. But my main question is, given that the blood tests/biopsies are totally inaccurate once a person goes gluten free, is this testing as well? I know their web site says otherwise, but I'm more than just a little skeptical...interested in finding out personal experiences...

Thank you!

Jen

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

Celiac.com Sponsor (A8-M):


mushroom Proficient
mushroom
Posted

Jen, you might want to read this article/abstract here on celiac.com which has a comment from Dr. Fine who owns/operates Enterolab:

https://www.celiac.com/articles/995/1/Effectiveness-of-Stool-Testing-in-the-Diagnosis-of-Celiac-Disease-in-Children-With-Comments-by-Dr-Kenneth-Fine/Page1.html

Skylark Collaborator
Skylark
Posted

This is my opinion on Enterolab's stool testing.

jswog Contributor
jswog
Posted
  • Author

Thank you both for those links! Very interesting reading...

I guess I'll consider NOT getting this done to be money well saved. I'm just so frusterated with not getting any results in dealing with doctors to get any sort of diagnostics. In the long run, having the 'official' word from the medical profession (which I do NOT hold in much regard at all) will hold no bearing on what I do or do not eat. I will continue to remain gluten free since after only just one month gluten-free I already feel that I've gained a good 10 years of my life back! My biggest concern is that, if (God forbid) something should happen to me medically, will the 'diagnosis' be taken into account when getting treatment in addition to the fact that my husband and I are trying to conceive and wishing I could have good, sound medical advice concerning ttc/pregnancy with my non-diagnosis.

So what do you think of the genetic testing?

mushroom Proficient
mushroom
Posted

Well, the genetic testing in the U.S. only tests for two of the celiac genes, while other genes are considered to be involved in other countries. The two tested for in the U.S. are shared by approximately 30% of the population, but only a small percentage of that population go on to develop celiac disease. So the gene tests show only a predisposition to developing celiac, and, on their own, have no diagnostic relevance. When you combine the genetic test with symptoms, positive blood results, and symptom resolution on the gluten free diet, they become convincing even to Dr. Fasano. But once you are gluten free it is almost impossible to get a positive diagnosis. I am undiagnosed. I do not have children so it does not matter to me. To others the diagnosis becomes important, and frustratingly difficult to obtain.

That being said, many celiac/gluten intolerant posters have gone on to become pregnant once they have spent some time on the gluten free diet. I would expect that your chances of a successful pregnancy have risen considerably with the elimination of gluten.

I have recently been hospitalized (more than once) and have demanded that my chart be marked that I am celiac (for all the good that does in the hospital kitchen - which does not really understand what gluten is, let alone where it hides :P ) I have had arguments with the hospital pharmacist over taking my medications versus hospital supplied medications and have refused to take medications whose ancestry is in doubt. We have had standoffs... and in the end the nurses generally give me the meds I brought with me (or my hub brought in), if it was something that I could not go without. When I did not win, I had hub smuggle them in to me -- I felt like a prisoner being smuggled cocaine :lol:

ElseB Contributor
ElseB
Posted

I have recently been hospitalized (more than once) and have demanded that my chart be marked that I am celiac (for all the good that does in the hospital kitchen - which does not really understand what gluten is, let alone where it hides :P )

I'm still amazed that hospitals - medical institutions! - cannot accommodate a medically necessary diet! If we were diabetic I'm sure they could accommodate. If it were a nut allergy I"m sure they could accommodate. But gluten, noooooooooooo way! I had to go to the ER last year due to a blood clot and I made sure to stop off on the way there to fill my bag with food. All I could think about was having enough food - forget the clot in my leg! lol

jswog Contributor
jswog
Posted
  • Author

Thank you everyone for your responses! It looks like maybe I'll just have to join the ranks of you all here who are 'undaignosed' or 'self-diagnosed'... It's just hard for me to accept that I'm not going to get that official seal from the medical profession (which I'm not sure I fully understand why it bothers me as have very little respect for it), but it is really not going to change a thing as to how I approach life at this point. I have begun this journey and am not looking back. Sure, there absolutely foods that I miss, but that pales in comparison to how LITTLE I miss feeling like crap every day!

Jen

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

Celiac.com Sponsor (A8-M):


Skylark Collaborator
Skylark
Posted

If there were some sort of "official" seal for gluten intolerance there would be a LOT of happy people around this board! I'm personally waiting for celiac testing that doesn't require me to poison myself, mostly out of curiosity.

Remember that in many emergency health situations your medical records are not available. Nobody will know one way or the other if you lie and say you were diagnosed with celiac disease in childhood. :P

jswog Contributor
jswog
Posted
  • Author

If there were some sort of "official" seal for gluten intolerance there would be a LOT of happy people around this board! I'm personally waiting for celiac testing that doesn't require me to poison myself, mostly out of curiosity.

Remember that in many emergency health situations your medical records are not available. Nobody will know one way or the other if you lie and say you were diagnosed with celiac disease in childhood. :P

Very good points, Skylark! Very encouraging! Thank you very much!

Archived

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

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


  • Member Statistics

    • Total Members
      128,159
    • Most Online (within 30 mins)
      7,748
    Elaine Gilbert
    Newest Member
    Elaine Gilbert
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.7k
  • Celiac.com Sponsor (A22):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Testing

      By trents · Posted

      Did your symptoms improve after going on a gluten-free diet?
    • Scott Adams
      Testing

      By Scott Adams · Posted

      Thank you for sharing your genetic test results and background. Your results indicate you carry one half of the DQ2 heterodimer (DQA1*05), which is associated with a very low celiac disease risk (0.05%). While most celiac patients have either DQ2 or DQ8, these genes are also present in people without celiac disease, so the test alone doesn’t confirm a diagnosis. Since you’ve been gluten-free for 10 years, traditional diagnostic methods (like endoscopy or blood tests) would not be reliable now. If an official diagnosis is important to you, consider discussing a gluten challenge with your doctor, where you reintroduce gluten for a period before testing. Alternatively, you could focus on symptom management and dietary adherence, as your gluten-free diet seems to be helping. Consulting a gastroenterologist or celiac specialist could provide further clarity.  Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
    • Scott Adams
      Celiac or Addison's complications? Can someone share their experience?

      By Scott Adams · Posted

      @cvz Thank you for sharing your daughter’s story. It sounds like she is managing multiple complex conditions with great care and diligence. It’s encouraging to hear that she is compliant with her gluten-free diet and that her Addison’s disease symptoms are under control. The addition of electrolytes seems like a thoughtful suggestion, especially given her fluid intake. It’s also reassuring that she hasn’t shown noticeable symptoms from accidental gluten exposure, though it’s understandable how challenging it can be to monitor for such incidents. The unexplained high lipase levels are intriguing—perhaps further investigation or consultation with a specialist could provide more clarity. Wishing you both continued strength and success in managing her health. Please keep us updated on her progress!
    • Kj44
      Testing

      By Kj44 · Posted

      Hello I received this in a genetic lab test I requested from my provider.    The patient is positive for DQA1*05, one half of the DQ2 heterodimer. The celiac disease risk from the HLA DQA/DQB genotype is approximately 1:1842 (0.05%). This is less than the 1% risk in the general population. Allele interpretation for all loci based on IMGT/HLA database version 3.55 HLA Lab CLIA ID Number 34D0954530 Greater than 95% of celiac patients are positive for either DQ2 or DQ8 (Sollid and Thorsby, (1993) Gastroenterology 105:910-922). However these antigens may also be present in patients who do not have Celiac disease.   Some background, I have been eating gluten free for about 10 years now. I have never had an official celiac diagnosis due to endoscopy and labs tested after I had already been eating gluten free for over 1 year. I was constantly sick and told you slowly remove foods and see what effects my symptoms. I have also come to realize that I have other symptoms of celiacs and recently requested the genetic testing shown above.    I am looking to see if anyone has other recommendations for testing or just to clarify the results for me as I feel the official diagnosis could be helpful but I am not positive that it is even true for me. 
    • cvz
      Celiac or Addison's complications? Can someone share their experience?

      By cvz · Posted

      My daughter, age 48, has Down syndrome, hypothyroidism, Addison's disease, and Celiac disease, which was diagnosed based on blood tests last July.  After a small intestine biopsy last fall, we were told that she has severe celiac disease.  She is taking both levothyroxine and leothyronine for her hypothyroidism and both hydrocortisone and fludrocortisone for Addison's disease.  She also takes Folic acid, magnesium, vitamin B-12, DHEA (DAGA), and a multivitamin.  In July, she started on a gluten-free diet and is very compliant.  She has had constipation and diarrhea issues all her life and now controls the constipation with Miralax, prunes, and apricots.  Shel has only very occasional syncopes or vasovagal events and muscle aches in her upper back and neck.  She drinks 4-6 or more 12 oz bottles or of liquid per day.  Her doctor has just suggested adding electrolytes to one of those bottles daily.   We are sorry to learn about the issues you are having and would like to stay in touch.  We do not know anyone else with both Addison's disease and celiac disease.  So far, she has no recognizable symptoms.  We are doing our best to keep her gluten-free, but have no way of knowing if she has had an exposure to it unless we catch it ourselves.  For example, a few weeks ago, a restaurant mistakenly breaded her fish, and I did not notice it until she had eaten most of it.  She had no identifiable symptoms of the exposure then or days later. By the way, the reason she was screened for Celiac disease was that her blood lipase levels were unexplainably high.  They still are.  We have no idea why.    
×
×
  • Create New...