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

Celiac Or Not? I Am Going Insane Here...

Matt268

Recommended Posts

Matt268 Newbie
Matt268
Posted

Ok. I am 30 years old and for the past 2 years I have been dealing with a lot of bowel issues that don't seem to ever go away.  I noticed that I was having a lot of different types of stool and a lot of bowel irritation.  I went to the Doctor to have them run tests and no one could find anything so they called it IBS - I never had this issue in my life until 2 years ago.The issue kept going and I couldn't seem to shake it - in fact, I started feeling light headed and experienced a lot of confusion and fatigue.  I decided to go back to the Doctor who tested me for a lot of different issues, some of which included Hep. C., Mono (which he said I had at one point but not currently), white blood cells, MRI (for the head stuff) and a ton more stuff which never yielded results.  I even had a colonoscopy/endoscopy (they found nothing but mild gastritis).  The Doctor finally said that he wanted to test me for Celiac.  I was tested and then diagnosed with Celiac Disease due to a blood test that showed a reaction to Gliadin Peptides.  I had a second Doctor take a look and this doctor said she was going to test for the "Celiac gene".  According to the second Doctor, I didn't test positive for the gene - therefore I did not have Celiac.  So I went back to consuming Gluten. This all happened about a year and a half ago.

 

Fast forward to about a week ago - the symptoms have not stopped for two years, sometimes I feel that they are worse.  I went to a new Doctor, in a completely different state who has looked at my records and is convinced that I have Celiac or some variant, despite the test that said I don't have the gene.

I am at a loss here and I have no idea what to do.  I feel like I can't even live a normal life anymore because I always feel sick.  I am sick and tired of not knowing what is wrong with me and whether or not I actually have Celiac or some form of Gluten intolerance.  Can anyone help me here?

 

 

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

There are celiacs that don't have the usual gene that are associated with celiac. Which blood tests were you positive for? Some of those are pretty specific to celiac and a couple can be seen with other issues.

If you are done with celiac related testing you have nothing to lose by giving the diet a good strict try.

kareng Grand Master
kareng
Posted

Ok. I am 30 years old and for the past 2 years I have been dealing with a lot of bowel issues that don't seem to ever go away.  I noticed that I was having a lot of different types of stool and a lot of bowel irritation.  I went to the Doctor to have them run tests and no one could find anything so they called it IBS - I never had this issue in my life until 2 years ago.The issue kept going and I couldn't seem to shake it - in fact, I started feeling light headed and experienced a lot of confusion and fatigue.  I decided to go back to the Doctor who tested me for a lot of different issues, some of which included Hep. C., Mono (which he said I had at one point but not currently), white blood cells, MRI (for the head stuff) and a ton more stuff which never yielded results.  I even had a colonoscopy/endoscopy (they found nothing but mild gastritis).  The Doctor finally said that he wanted to test me for Celiac.  I was tested and then diagnosed with Celiac Disease due to a blood test that showed a reaction to Gliadin Peptides.  I had a second Doctor take a look and this doctor said she was going to test for the "Celiac gene".  According to the second Doctor, I didn't test positive for the gene - therefore I did not have Celiac.  So I went back to consuming Gluten. This all happened about a year and a half ago.

 

Fast forward to about a week ago - the symptoms have not stopped for two years, sometimes I feel that they are worse.  I went to a new Doctor, in a completely different state who has looked at my records and is convinced that I have Celiac or some variant, despite the test that said I don't have the gene.

I am at a loss here and I have no idea what to do.  I feel like I can't even live a normal life anymore because I always feel sick.  I am sick and tired of not knowing what is wrong with me and whether or not I actually have Celiac or some form of Gluten intolerance.  Can anyone help me here?

 

 

Without the gene, its not likely that you have Celiac disease.

 

Open Original Shared Link

 

 

I would get all the blood tests, gene tests & pathology report from the endoscopy.  See how positive the blood test was.  IF the blood test is only slightly elevated and the endoscopic biopsies are negative, maybe you don't have Celiac disease.  

 

 

 

Open Original Shared Link

 

 

You be non-Celiac Gluten Sensitive.  If not eating gluten makes you feel better, then stop eating it.  

 

 

Open Original Shared Link

Matt268 Newbie
Matt268
Posted
  • Author

Thanks for the response.  I have had an antibody test, I just can't remember exactly what it was called and I don't have the paperwork with me right.  The first Doctor came to the Celiac conclusion based on my antibody test.  I will try to find the paperwork and post the test.

Matt268 Newbie
Matt268
Posted
  • Author

The problem that I think I have here is that the colonoscopy/endoscopy was done prior to the antibody test that was done.  I am not sure if the Gastroenterologist checked for Celiac or not.  Perhaps I need to have another procedure done?  That would be a pain.

GFinDC Veteran
GFinDC
Posted

Here's a list of the tests.

 

If you are still eating gluten you may as well get the antibodie tests done again.  It's been two years and things can change in 2 years.   Some people don't develop celiac disease until later in life, some have it when very young.  It can start at any time.  Sometimes they don't do all the tests.   That's bad because people can be positive on one test and negative on another.  When they did the endoscopy they should have taken between 6 to 8 biopsy samples for microscopic examination.  You should get copies of your test results for your personal records.  Tests can be flubbed sometimes and no test is absolutely perfectly 100% reliable.

 

Celiac disease antibodie tests

Anti-Gliadin (AGA) IgA
Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA

 

If you turn out to be negative on all the tests, then it could be NCGI (non-celiac gluten intolerance).  There aren't any standard tests for NCGI yet.  But more people have it than have celiac disease.  IF you get better not eating gluten then that means something.  NCGI or some other reaction is causing a problem.  It's not good to keep eating things that injure your body.

Matt268 Newbie
Matt268
Posted
  • Author

Here's a list of the tests.

 

If you are still eating gluten you may as well get the antibodie tests done again.  It's been two years and things can change in 2 years.   Some people don't develop celiac disease until later in life, some have it when very young.  It can start at any time.  Sometimes they don't do all the tests.   That's bad because people can be positive on one test and negative on another.  When they did the endoscopy they should have taken between 6 to 8 biopsy samples for microscopic examination.  You should get copies of your test results for your personal records.  Tests can be flubbed sometimes and no test is absolutely perfectly 100% reliable.

 

Celiac disease antibodie tests

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

Total Serum IgA

 

If you turn out to be negative on all the tests, then it could be NCGI (non-celiac gluten intolerance).  There aren't any standard tests for NCGI yet.  But more people have it than have celiac disease.  IF you get better not eating gluten then that means something.  NCGI or some other reaction is causing a problem.  It's not good to keep eating things that injure your body.

Thank you for your help.  I will make sure to ask specifically for those tests when I go to see my Doctor.  I will update when I find out.

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

Celiac.com Sponsor (A8-M):


NoGlutenCooties Contributor
NoGlutenCooties
Posted

Hi Matt and Welcome to the Forum -

 

I agree with the others that you should have the full Celiac panel of blood tests done again - as long as you are still eating gluten.  While some researchers are now claiming that you cannot have Celiac if you don't have at least one of the two known genes, there are people who do not have either of those genes who have been diagnosed with Celiac.  (I think some researchers in Europe are researching a third gene that may also predispose a person to Celiac.)  So not having either of the two known genes doesn't completely rule it out.  Non-Celiac Gluten Intolerance is also a possibility - in which case the blood tests will also come back negative for Celiac but a gluten-free diet will make your symptoms go away.  There is no reliable test for NCGI yet.

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Florence Lillian
      - Florence Lillian replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      11

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Hi Jane: You may want to try the D3 I now take. I have reactions to fillers and many additives. Sports Research, it is based in the USA and I have had no bad reactions with this brand. The D3 does have coconut oil but it is non GMO, it is Gluten free, Soy free, Soybean free and Safflower oil free. I have a cupboard full of supplements that did not agree...
    2. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      results from 13 day gluten challenge - does this mean I can't have celiac?

      highly unlikely NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean...
    3. cristiana
      - cristiana replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      21

      Insomnia help

      Thank you for your post, @nanny marley It is interesting what you say about 'It's OK not to sleep'. Worrying about sleeping only makes it much harder to sleep. One of my relatives is an insomniac and I am sure that is part of the problem. Whereas I once had a neighbour who, if she couldn't sleep, would simply get up again, make a cup of tea, read,...
    4. SilkieFairy
      - SilkieFairy replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      results from 13 day gluten challenge - does this mean I can't have celiac?

      It could be a fructan intolerance? How do you do with dates? https://www.dietvsdisease.org/sorry-your-gluten-sensitivity-is-actually-a-fructan-intolerance/
    5. Lkg5
      - Lkg5 replied to Matthias's topic in Gluten-Free Foods, Products, Shopping & Medications
      6

      Unexpected gluten exposure risk from cultivated mushrooms

      Thank’s for addressing the issue of mushrooms. I was under the impression that only wild mushrooms were gluten-free. Have been avoiding cultivated mushrooms for years. Also, the issue of smoked food was informative. In France last year, where there is hardly any prepared take-out food that is gluten-free, I tried smoked chicken. Major mistake!
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,353
    • Most Online (within 30 mins)
      7,748
    ace14219
    Newest Member
    ace14219
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Florence Lillian
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Florence Lillian · Posted

      Hi Jane: You may want to try the D3 I now take. I have reactions to fillers and many additives. Sports Research, it is based in the USA and I have had no bad reactions with this brand. The D3 does have coconut oil but it is non GMO, it is Gluten free, Soy free, Soybean free and Safflower oil free.  I have a cupboard full of supplements that did not agree with me -  I just keep trying and have finally settled on Sports Research. I take NAKA Women's Multi full spectrum, and have not felt sick after taking 2 capsules per day -  it is a Canadian company. I buy both from Amazon. I wish you well in your searching, I know how discouraging it all is. Florence.  
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      highly unlikely  NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean ground turkey but not much) I was off dairy for years but recently had to add back plain yogurt to meet calcium needs that I am not allowed to get from supplements (I have not had any problem with the yogurt)   I eat almost no processed foods. I don't eat out. almost everything I eat, I cook myself I am going to keep a food diary but to be honest, I already know that it's wheat products and also barley that are the problem, which is why I gradually stopped eating and buying them. When I was eating them, like back in early 2024, when I was in the middle of moving and ate out (always had bread or toast or rolls or a sub or pizza) I felt terrible but at that time was so busy and exhausted that I never stopped to think it was the food. Once I was in my new place, I continued to have bread from time to time and had such horrible joint pain that I was preparing for 2 total knee replacements as well as one hip! The surgery could not go forward as I was (and still am) actively losing calcium from my bones. That problem has yet to be properly diagnosed and treated   anyway over time I realized that I felt better when I stopped eating bread. Back at least 3 yrs ago I noticed that regular pasta made me sick so I switched to brown rice pasta and even though it costs a lot more, I really like it.   so gradually I just stopped buying and eating foods with gluten. I stopped getting raisin bran when I was constipated because it made me bloated and it didn't help the constipation any more (used to be a sure bet that it would in the past)   I made cookies and brownies using beans and rolled oats and dates and tahini and I LOVE them and have zero issues eating those I eat 1 or more cans of beans per day easily can eat a pound of broccoli - no problem! Brussels sprouts the same thing.   so yeh it's bread and related foods that are clearly the problem  there is zero doubt in my mind    
    • cristiana
      Insomnia help

      By cristiana · Posted

      Thank you for your post, @nanny marley It is interesting what you say about 'It's OK not to sleep'. Worrying about sleeping only makes it much harder to sleep.  One of my relatives is an insomniac and I am sure that is part of the problem.  Whereas I once had a neighbour who, if she couldn't sleep, would simply get up again, make a cup of tea, read, do a sudoku or some other small task, and then go back to bed when she felt sleepy again.  I can't think it did her any harm - she lived  well into her nineties. Last week I decided to try a Floradix Magnesium supplement which seems to be helping me to sleep better.  It is a liquid magnesium supplement, so easy to take.  It is gluten free (unlike the Floradix iron supplement).  Might be worth a try.        
    • SilkieFairy
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By SilkieFairy · Posted

      It could be a fructan intolerance? How do you do with dates?  https://www.dietvsdisease.org/sorry-your-gluten-sensitivity-is-actually-a-fructan-intolerance/
    • Lkg5
      Unexpected gluten exposure risk from cultivated mushrooms

      By Lkg5 · Posted

      Thank’s for addressing the issue of mushrooms.  I was under the impression that only wild mushrooms were gluten-free.  Have been avoiding cultivated mushrooms for years. Also, the issue of smoked food was informative.  In France last year, where there is hardly any prepared take-out food that is gluten-free, I tried smoked chicken.  Major mistake!
×
×
  • 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.