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My Celiac Id?

Wheat Wacker

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Wheat Wacker Rookie
Wheat Wacker
Posted

Has anyone tried this My CELIAC ID ad thats on this site?? It seems logical and is alot cheaper then an endoscopy matched with blood tests. At least a stepping stone to those tests?

I was diagnosed by both blood tests and endoscopy in March, sure it took me a few months to really figure out what gluten free was but I have been a super strict for the last three or more months, have not eaten anything I have not prepared my self and know is gluten free, yet I still suffer abdominal pain and bloating.

I think I might take the Gene test as this will confrim weather I could have been mis Diagnosed?

And idea's or advice,

Cheers

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Jestgar Rising Star
Jestgar
Posted

The gene test is interesting, but not diagnostic. The genes they test for are associated with celiac disease, but not shown to be solely responsible for the disease. Additionally, you can have celiac disease without having any of the known associated genes.

Skylark Collaborator
Skylark
Posted

The endoscopy is completely diagnostic, especially with supporting blood tests. Your doctor actually saw the villous damage in your intestine and nothing does that but celiac disease.

A lot of celiacs don't tolerate dairy very well. You might try seeing if removing dairy from your diet helps the remaining pain and bloating.

Wheat Wacker Rookie
Wheat Wacker
Posted
  • Author

I have tried to cut dairy out for prolonged periods but I really see no differences. I almost feel like I should start eating wheat again to see if I get sicker or something? The gluten free diet doesn't seems to work this far, I'm going to go back to the doctors again.

The doctor that Diagnosed my was un convincing, about to go on vacation, and told me after my endoscopy that if he didn't see my blood tests he wouldn't think that I had Celiac. but after the lab reports came back from the endoscopy he said I had celiac, almost feel like maybe it was just the easy diagnoses?

Thanks for the advice

Skylark Collaborator
Skylark
Posted

If you were Marsh 2 or worse, my understanding is that there is pretty much nothing else that causes that particular kind of damage in combination with the blood tests. There is not necessarily anything to see on endoscopy before the path report comes back, as the damage can be only microscopic.

I think I read somewhere that inflammatory bowel diseases like microscopic colitis can show a combination of Marsh 1 biopsy (intra-epithelial lymphocytes with no damage) and anti-TTG. You should talk to a GI about that, as I've only been reading about celiac and not other bowel diseases. Seems like that would have been caught on endoscopy too.

GFinDC Veteran
GFinDC
Posted

You could have another condition in addition to celiac disease. There is no rule preventing someone from having multiple health issues. If you do a search on "celiac associated condition" or "celiac related condition" you can find lists of other diseases that celiacs tend to get more often than other people get them. Higher risk in other words. Some people are first tested for R. arthritis, or lupus, or fibromyalgia, thyroiditis etc, and then along the way the doc also tests them for celiac, and finds they have it also.

It could also be that you are like many people here that have additional food intolerances beyond gluten. Soy, dairy, nightshades, corn, eggs, etc, etc, any of which can cause GI symptoms and other symptoms too.

You could get your doc to do another series of blood tests for the antibodies. Not to rule out celiac, but to confirm you are actually staying glutenfree and recovering. Some people like to do this every so often as a progress check on how they are recovering and also how well they are maintaining their gluten-free diet.

Once you have celiac though it doesn't go away. Your body will stop pouring out tons of antibodies after a while of being gluten-free, but it doesn't forget how to make them. So new exposures to gluten will kick the autoimmune process right back in gear.

The usual things to double-check for gluten are vitamins, meds, drinks, shared condiments, toasters, pet food, cosmetics/shampoos etc.

Also the time it takes to heal varies. Some people have less damage and heal faster, others may take longer for whatever reason. Other food intolerances can make you feel as bad as gluten does. That would be the first thing I would suspect, if you are sure you are strictly glutenfree.

bincongo Contributor
bincongo
Posted

Has anyone tried this My CELIAC ID ad thats on this site?? It seems logical and is alot cheaper then an endoscopy matched with blood tests. At least a stepping stone to those tests?

I was diagnosed by both blood tests and endoscopy in March, sure it took me a few months to really figure out what gluten free was but I have been a super strict for the last three or more months, have not eaten anything I have not prepared my self and know is gluten free, yet I still suffer abdominal pain and bloating.

I think I might take the Gene test as this will confrim weather I could have been mis Diagnosed?

And idea's or advice,

Cheers

____________________

I don't think I would waste my money on another test because the endoscopy is the "gold standard" for testing. I would ask for a copy of my endoscopy results(the biopsy) and even the blood tests if you haven't done so and really read what it says. You can ask people on this site how to interpret the results.

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  • 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.    
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