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

How do I know that I am celiac


Addy86

Recommended Posts

Addy86 Rookie

Hi there. I am facing some digestive issues since 2017. Meanwhile I have been to many doctors, so many tests were conducted including MRI, CT , Fibroscan, ultrasound blood work etc. I have looser stools, somewhat feeling of fullness, nausea and right upper abdominal pain. I thought it may be due to Any liver disorder but doctors did not diagnose anything. Ya I have mild back pain as well. Going through a very tough time. Can someone please help me know that can it be due to celiac?  and how I can get myself diagnosed for the same ?

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



trents Grand Master

Addy86, welcome to the forum.

The first stage of celiac disease diagnosis is a blood test to for antibodies typically produced by celiac disease. The most important test is the Ttg-IGA but since it is very specific for celiac disease but not particularly sensitive, it is wise to have a more complete celiac panel blood test done as described here: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/. I would print this information out and give it to your physician after asking to be checked for celiac disease. Most of the regulars here on the forum will attest to the fact that many physicians lack awareness about celiac disease and so you may have to take the doc by the hand here.

There are also home test kits available for about $100 USD. https://www.imaware.health/at-home-blood-test/celiac-disease-screening

If the blood antibody test is not conclusive then the doctor may want to connect you with a gastroenterologist who can perform an endoscopy/biopsy of the small bowel lining to check for damage to the "villi", the distinguishing characteristic of celiac disease. There is also something called "gluten sensitivity" or non celiac gluten sensitivity (NCGS) that gives many of the same symptoms as celiac disease but does not damage the villi. Currently, there is no test for NCGS so symptoms and how the symptoms respond to a gluten free diet are the only way to diagnosis it. 

Before any testing is done for celiac disease it is very important not to start a gluten free diet. Stopping gluten will invalidate either kind of test.

Have you been checked for gallbladder disease?

Edited by trents
Link to comment
Share on other sites
Addy86 Rookie

Yes. Doctors did not find anything wrong with gall bladder but since I have mild pain in my shoulder blade I said doctor to check my liver and gall bladder. They did CT , MRI MRCP , Fibroscan etc. I am overweight. Just wonder that a person can be overweight with celiac ?

Link to comment
Share on other sites
trents Grand Master

It is more common to be underweight with celiac disease but yes, some go the other way because their body tells them to eat more in order to try and make up for nutritional deficiencies. celiac disease causes poor absorption of nutrients. I'm wondering if you might have NCGS. 

Link to comment
Share on other sites
Addy86 Rookie

I believe there is no confirmatory test for NCGS!!!!! Is it the only way to gluten free and see the change ?

Link to comment
Share on other sites
trents Grand Master
12 minutes ago, Addy86 said:

I believe there is no confirmatory test for NCGS!!!!! Is it the only way to gluten free and see the change ?

Correct. But I would pursue testing for celiac disease first so you don't sabotage the test results by having gone on a gluten-free challenge.

Link to comment
Share on other sites
Addy86 Rookie

Ok. Thanks a lot.

 

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



trents Grand Master

Most welcome!

Link to comment
Share on other sites
  • 3 weeks later...
KylieG Newbie
On 6/14/2021 at 1:22 AM, Addy86 said:

Ok. Thanks a lot.

 

How did you go @Addy86? I have had very similar symptoms and investigations as you and have come to the conclusion that I have NCGS. It’s frustrating that there is no real way to diagnose it but going gluten free was amazing for me. Many of my symptoms lifted within days.

If your bloods do come back negative for celiac it would be interesting to see how you feel from going gluten free. 

I had a duodenal biopsy performed which was my only clue to a gluten sensitivity. Not celiac. 

Would love to hear how you go!

Kylie

Link to comment
Share on other sites
KylieG Newbie
On 6/14/2021 at 1:57 AM, trents said:

Most welcome!

Hi @trents

I’m having trouble finding the original thread but I saw you mention somewhere that there are long term risks for those of us with NCGS if a gluten free diet is not followed.

I’d love to read more about this. I hadn’t heard that to date. Are there any good articles around?

Thanks,

Kylie

Link to comment
Share on other sites
trents Grand Master

Perhaps, I am wrong about NCGS producing essentially the same long term health risks as Celia Disease. I certainly was guilty of an over statement at least. Found this:

"In addition to experiencing GI symptoms, patients with NCGS most often experience a complex of extra-intestinal symptoms, including a “foggy mind”, which is described as an inability to concentrate, reduction of mnemonic capabilities, and lack of well-being as well as tiredness, headache, anxiety, numbness, joint/muscle pain, and skin rash/dermatitis." https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6182669/

And this: 

"Gluten sensitivity shares many symptoms with celiac disease. However, according to a collaborative report published by Sapone et al. (2012), individuals with non-celiac gluten sensitivity have a prevalence of extraintestinal or non-GI symptoms, such as headache, “foggy mind,” joint pain, and numbness in the legs, arms or fingers. Symptoms typically appear hours or days after gluten has been ingested, a response typical for innate immune conditions like non-celiac gluten sensitivity. "https://www.beyondceliac.org/celiac-disease/non-celiac-gluten-sensitivity/what-is-it/

And this: 

"Some people experience symptoms found in celiac disease, such as “foggy mind”, depression, ADHD-like behavior, abdominal pain, bloating, diarrhea, constipation, headaches, bone or joint pain, and chronic fatigue when they have gluten in their diet, yet do not test positive for celiac disease." https://celiac.org/about-celiac-disease/related-conditions/non-celiac-wheat-gluten-sensitivity/

KylieG reports having Hashimotos and NCGS but that may be coincidence: 

 

I think I was keying on things like numbness to hand and fingers and assuming that reflected neurological damage. 

Edited by trents
Link to comment
Share on other sites
juanjo Newbie

Hi @Addy86 I have exactly same problems than you since 2 years ago, tons of tests and doctors without diagnosis. The only thing I have discovered during these months is when I stop to eat gluten my symptoms improve, not to 100% of recovery but maybe to 70% and my transaminases come back to normal... but I'm not ok yet, still with chronic pain in the right side, mid back pain... 

So I can imagine that I'm NCGS.... very frustrating.

Link to comment
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Jean Shifrin replied to Jean Shifrin's topic in Related Issues & Disorders
      16

      Severe joint swelling from Celiac

    2. - Beverage replied to Jean Shifrin's topic in Related Issues & Disorders
      16

      Severe joint swelling from Celiac

    3. - knitty kitty replied to jmiller93's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      What do my test results mean?

    4. - trents replied to Dhruv's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Confused with test results

    5. - Dhruv replied to Dhruv's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Confused with test results


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      125,745
    • Most Online (within 30 mins)
      7,748

    Nightowl2024
    Newest Member
    Nightowl2024
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.8k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Jean Shifrin
      Thank you so much for this info. I won't know my levels of anything until my next appointment, but I am saving this info and will contact you if I'd like to get more detail. I'm so happy you found some real help!
    • Beverage
      I also did not have the so-called typical Celiac symptoms, my main complaint was always getting sick, asthma, loss of sense of smell, and kidneys were failing. My GFR was in 40's - 50's and docs saying "Kidneys don't get better, we can only slow the decline" also "We don't do anything for kidneys until you are ready for dialysis." I was blown away, so decided to go to a naturopath who diagnosed me with Celiacs rather quickly. After the Celiac diagnosis and lots of improvement overall on gluten-free diet, kidneys came back a little, but not great like I'd hoped.  I had improvement in asthma and other issues with benfotiamine (b1), metylcobalamin (b12), and flush niacin (b3), but kidney improvement remained elusive. Ok so I'll admit I became an internet doctor and searched and read everything to get kidney function up. I happened across someone on Twitter who touts natural immunity and supplements for healing. So I tried what she recommended for CKD:  Nettle seed extract, silymarin (milk thistle), and Cordyceps mushrooms. I started at the end of April of this year, and got my kidneys checked in mid-September. In 4 1/2 months, GFR went up to 70!  All other numbers looked fantastic. I can't say it will help you, but worth investigating. I believe dosage amounts are important, so let me know if you want more information.  
    • knitty kitty
      There's different reasons why one may be seronegative. Some Seronegative Celiacs may be genetically encoded to be IgA deficient.  But, they may still make IgG antibodies, hence both IgA and IgG antibodies are tested for in the full Celiac Panel of blood tests.  Instead of IgA and IgG antibodies, some Seronegative Celiacs may make other types of antibodies, like IgM antibodies, which aren't usually tested.  Some may make antibodies, not against Gliadin, but other immunogenic peptides in wheat, barley and rye.   The immune system can respond to gluten by sending in different types of protective immune cells, which don't result in IgA production, but result in changes in the types of immune cells in the intestinal tissues may be seen.  There's also the possibility that in some seronegative Celiacs the production of antibodies in the gastrointestinal tract is so poor and limited in number that sufficient antibodies don't get into the bloodstream where they can be measured.  Chronic Inflammation and Villous Atrophy may result in anemia and thiamine deficiency that can result in poor antibody production.  However, healing of the intestinal lining and villi may restore the ability to produce IgA and IgG antibodies.  They may test positive on serology at a future time. I believe I'm of the last group.  I know at one point my doctor said I had high antibody levels, but the doctor refused to do further testing for specific antibodies found in Celiac Disease.  He laughed at me for suggesting Celiac because I was not the "Classic Celiac", all skin and bones, wasting away from malnutrition.  I was obese, bloated, and prediabetic, all symptomatic of Thiamine deficiency (High Calorie Malnutrition), and also Celiac Disease.  By the time I found a new doctor who would test for Celiac antibodies, my health was so poor from nutritional deficiencies and intestinal damage, I wasn't producing antibodies.  I was seronegative.  I was dismissed as being a hypochondriac, a mental case.  They did not connect my mental health issues with nutritional deficiencies (Wernicke's Encephalopathy, Pellagra, B12 Deficiency Dementia, Scurvy).  Will I undergo a gluten challenge to test for tTg IgA antibodies?  Absolutely not.  I have two genes for Celiac Disease and improvement on a gluten free diet.  That's plenty enough for me.   Interesting Reading: Seronegative Celiac Disease and Immunoglobulin Deficiency: Where to Look in the Submerged Iceberg? https://pmc.ncbi.nlm.nih.gov/articles/PMC4586545/ Clinical profile of patients with seronegative celiac disease https://pmc.ncbi.nlm.nih.gov/articles/PMC10404820/
    • trents
      In the UK and some other nations there is an increasing tendency for doctors to forego the endoscopy/biopsy if the ttg(IGA) is 10x normal range or greater. Your son's score easily exceeds that. There is only a 5% chance that his elevated ttg(IGA) levels are caused by something other than celiac disease and not more than a 10% chance that his elevated ttg(igg) score is caused by something else. Please consider these odds.   Then there is the elevated liver enzyme issue which is found in about 20% of those with celiac disease.  I think there is sufficient evidence to conclude that your son has celiac disease and I would talk to his physician about opting out of the endoscopy/biopsy. On the other hand, if you or your son demand more evidence, then pursue the endoscopy/biopsy.
    • Dhruv
      Ok, so reference range for labcorp for (tTG) IgA Reference Interval: 0-3, Unit: U/mL( for my son it's  >100) Transglutaminase (tTG) IgG Reference Interval: 0-5, Unit: U/mL( for my son is 57)   Thank you, I will ask doctor to order the correct test. Since he is on gluten due to unawakened will investigate throughly. 
×
×
  • Create New...