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

Is It Celiac


Chrisco

Recommended Posts

Chrisco Apprentice

i have struggled with chronic nausea and other GI issues for 23 years. No doctor could ever figure out what was causing it. About 8 years ago a new doctor I saw felt strongly that it was Celiac. My blood test was negative but she was so sure it was Celiac that she sent me for an endoscopy. The GI doctor I saw was a jerk and told me that if the blood test was negative then that meant I didn't have it. He did the endoscopy but didn't test me for Celiac. When my regular doctor got the results and saw that the GI doc didn't look for Celiac she was beyond upset. She sent me for a DNA test. My DNA test showed that I do have the gene for Celiac. She stated that although that doesn't mean I for sure have the disease that for her it confirmed that I had it. I went gluten free for 8 months but didn't feel much of a difference. Because I didn't test positive in the blood test and because I didn't feel better on the diet I denied the diagnosis. Here I am 8 years later and I just keep getting more sick as time goes on. I started seeing a new doctor and he mentioned Celiac without knowing my history. I told him the above story and he didn't seam to have an opinion about it. Well I recently did a food sensitivity test. I am only sensitive to 3 foods: Gluten, Wheat, Bran. This had me questioning the Celiac diagnosis. Now I'm wondering if I really do have it. I see the doc on Tuesday and am thinking of asking him to do the blood test. Just wondering if anyone has any opinions on this. I know a sensitivity does not mean Celiac. I just found it coincidental that my highest sensitivity is to gluten. 


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



Celiac.com Sponsor (A8-M):



Digging deep Newbie
2 hours ago, Chrisco said:

i have struggled with chronic nausea and other GI issues for 23 years. No doctor could ever figure out what was causing it. About 8 years ago a new doctor I saw felt strongly that it was Celiac. My blood test was negative but she was so sure it was Celiac that she sent me for an endoscopy. The GI doctor I saw was a jerk and told me that if the blood test was negative then that meant I didn't have it. He did the endoscopy but didn't test me for Celiac. When my regular doctor got the results and saw that the GI doc didn't look for Celiac she was beyond upset. She sent me for a DNA test. My DNA test showed that I do have the gene for Celiac. She stated that although that doesn't mean I for sure have the disease that for her it confirmed that I had it. I went gluten free for 8 months but didn't feel much of a difference. Because I didn't test positive in the blood test and because I didn't feel better on the diet I denied the diagnosis. Here I am 8 years later and I just keep getting more sick as time goes on. I started seeing a new doctor and he mentioned Celiac without knowing my history. I told him the above story and he didn't seam to have an opinion about it. Well I recently did a food sensitivity test. I am only sensitive to 3 foods: Gluten, Wheat, Bran. This had me questioning the Celiac diagnosis. Now I'm wondering if I really do have it. I see the doc on Tuesday and am thinking of asking him to do the blood test. Just wondering if anyone has any opinions on this. I know a sensitivity does not mean Celiac. I just found it coincidental that my highest sensitivity is to gluten. 

Hi, I  know how you feel. I am still awaiting my blood test results and did an allergy food test for 40 foods and environmental allergens but they were all negative.  I think you should definitely avoid those foods that you have a sensitivity to and since you have been  ill for a number of years,  it will take sometime to see a change. Your body will have to heal after years of damage.

There's a documentary on YouTube by Dr. TOM O'BRYAN called Betrayalseries;  you should check it out because it addresses  alot of these issues. 

Ennis-TX Grand Master

People can fail the blood test and still have celiac, the golden standard for the test is the endoscope with biopsy where they take several samples of your intestines and check for villi blunting and damage. You have to be eating gluten at least a cracker or half a slice a bread a day for 12 weeks prior to the blood test or 2 weeks prior to the endoscope (If I recall correctly). There is also such as thing as non celiac gluten sensitivity, which you might have if you still test negative for celiac. If you have the gene your going to want a retest every few years by the way especially if any of your family have it.

The progressively getting worse is a sign it might be celiac, your very lucky to have doctors that test for this, I spent years just getting worse and worse thinking I was going to die before they got me diagnosed. 

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,745
    • Most Online (within 30 mins)
      7,748

    Barbfh
    Newest Member
    Barbfh
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Theresa2407
      Maybe you have a low  intolerance to Wheat.   Rye, Barley and Malt are the gluten in Celiac disease.  It has always been stated Wheat and Gluten, not just a Wheat intolerance.  Barley will keep me in bed for (2) weeks.  Gut, Migrains, Brain fog, Diahrea.  It is miserable.  And when I was a toddler the doctor would give me a malt medicine because I always had Anemia and did not grow.  Boy was he off.  But at that time the US didn't know anyone about Celiac.  This was the 1940s and 50s.  I had my first episode at 9 months and did not get a diagnosis until I was 50.  My immune system was so shot before being diagnoised, so now I live with the consequences of it. I was so upset when Manufacturers didn't want to label their products so they added barley to the product.  It was mostly the cereal industry.  3 of my favorite cereals were excluded because of this. Malt gives me a bad Gut reaction.
    • Gigi2025
      Thanks much Scott.  Well said, and heeded.   I don't have Celiac, which is fortunate.
    • Scott Adams
      Do you have the results of your endoscopy? Did you do a celiac disease blood panel before that?  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
      It is odd that your Tissue Transglutaminase (TTG) IgA level has bounced from the "inconclusive" range (7.9, 9.8) down to a negative level (5.3), only to climb back up near the positive threshold. This inconsistency, coupled with your ongoing symptoms of malabsorption and specific nutrient deficiencies, is a strong clinical indicator that warrants a more thorough investigation than a simple "satisfactory" sign-off. A negative blood test does not definitively rule out celiac disease, especially with such variable numbers and a classic symptomatic picture. You are absolutely right to seek a second opinion and push for a referral to a gastroenterologist. A biopsy remains the gold standard for a reason, and advocating for one is the most direct path to getting the answers you need to finally address the root cause of your suffering. 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
      There is a distinction between gluten itself and the other chemicals and processing methods involved in modern food production. Your experience in Italy and Greece, contrasted with your reactions in the U.S., provides powerful anecdotal evidence that the problem, for some people, may not be the wheat, but the additives like potassium bromate and the industrial processing it undergoes here. The point about bromines displacing iodine and disrupting thyroid function is a significant one, explaining a potential biological mechanism for why such additives could cause systemic health issues that mimic gluten sensitivity. It's both alarming and insightful to consider that the very "watchdog" agencies meant to protect us are allowing practices banned in many other developed countries. Seeking out European flour and your caution about the high-carb, potentially diabeticgenic nature of many gluten-free products are excellent practical takeaways from your research, but I just want to mention--if you have celiac disease you need to avoid all wheat, including all wheat and gluten in Europe.
×
×
  • 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.