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
 Share

Recommended Posts

Addy86 Rookie
Addy86
Posted

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 ?

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

Celiac.com Sponsor (A8-M):


trents Grand Master
trents
Posted
(edited)

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
Addy86 Rookie
Addy86
Posted
  • Author

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 ?

trents Grand Master
trents
Posted

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. 

Addy86 Rookie
Addy86
Posted
  • Author

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

trents Grand Master
trents
Posted
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.

Addy86 Rookie
Addy86
Posted
  • Author

Ok. Thanks a lot.

 

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

Celiac.com Sponsor (A8-M):


trents Grand Master
trents
Posted

Most welcome!

  • 3 weeks later...
KylieG Newbie
KylieG
Posted
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

KylieG Newbie
KylieG
Posted
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

trents Grand Master
trents
Posted
(edited)

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
juanjo Newbie
juanjo
Posted

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.

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


  • Member Statistics

    • Total Members
      126,097
    • Most Online (within 30 mins)
      7,748
    Claire Singer
    Newest Member
    Claire Singer
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.2k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Kathleen JJ
      Options - 7 year old boy - Helicobacter pylori and serology

      By Kathleen JJ · Posted

      We just had his diagnosis confirmed. The biopsy showed Marsch 3B.
    • Jeff Platt
      Weird Symptoms

      By Jeff Platt · Posted

      With patients who are experiencing ear ringing and ear pain I first want to make sure there is not any kind of ear infective process verified by your primary care. The next thing that I see as a dentist who treats a lot of temporomandibular joint disorders (TMJ), is that the jaw joint can be having a problem that causes the ringing to happen. My primary care physicians here in Colorado Springs will refer these patients to me for evaluation when they don’t find any source of infection with the ear. We are able to treat with a specific type of mouth splint and get resolution of the ringing and ear pain as we resolve the TMJ problem.  First a visit to your primary care to make sure your inner and outer ear is infection free. And if it is clean, a visit to a dentist who treats TMJ disorders. 
    • cristiana
      Options - 7 year old boy - Helicobacter pylori and serology

      By cristiana · Posted

      One thing I ought to add is that although any new medical condition diagnosis can come as a huge shock/blow, navigating the gluten free diet will one day become second nature to you all  Yes, mistakes occur on the way, but it will get easier.  A few things that have helped me on my journey: 1/ My husband has said to me a few times, and I think it helps. I should to try think of all the food I CAN still eat.  So much natural, unprocessed food, is gluten free, and a whole lot of processed and canned goods available in the supermarkets, too.  I can still eat Heinz Baked Beans and Tomato Soup, for example, and a lot of oven chips are gluten free.  Not all chocolate and candy contains gluten.  Excellent gluten free substitutes now exist in the supermarkets and I've lost count of the times I've been eating a product and shared it with a friend, and they have loved it.  Gluten-free doesn't mean taste free.  A lot of gluten-free substitutes are just as good as the 'real thing'. 2/ As time has gone by, I have met more and more coeliacs and other people who react strongly to gluten. This will happen to your son in time, and it often helps to be able to chat with someone who walks a similar path.  I now have over a dozen such buddies and we share tips and recipes, and also recommend 'safe' restaurants and cafes to each other.   3/ Family support.  It is good if you can offer a safe haven at home.  My family aren't coeliacs, but the only things they eat that are not gluten free is shop bought bread and pies, and occasionally biscuits and we keep them very separate.  The rest of the time we cook with gluten free substitutes and all eat the same.  I have always been a keen cake baker and my daughter who is not a coeliac actually prefers the crumbly texture of gluten free flour, so she always uses that, even outside the home.  You can spend lots of time cooking and baking with your son, he'll acquire a new skill, and without wishing to boast, if his cakes are as good as mine he will never be short of friends!!  My daughter has quite a following at Uni, and I don't think they realise that her cakes are even gluten-free! I hope some of this serves to encourage you. Cristiana    
    • cristiana
      Options - 7 year old boy - Helicobacter pylori and serology

      By cristiana · Posted

      @Kathleen JJ  I am based in the UK.  The following link is to a website for UK based consumers but even post-Brexit, we are still importing from and exporting to mainland Europe, so chances are some of the products mentioned in the link are from the same factory.  Therefore, what your son eats would likely be the same product that I eat when it comes to eating sweets. https://libereat.com/2021/07/gluten-free-sweets/#:~:text=Haribo Gold Bears are gluten,Starmix It would therefore appear that Haribo Gold Bears are the ones you need to buy for your son. In answer to your other questions - yes, European labelling is strict so "Gluten free" is trustable.  However, if I read "Residual gluten" on a label I would say that is not safe for coeliacs. But always check the ingredients lists first as ingredients do change over time.  When doing this, what you need to avoid (usually printed in bold in the ingredient list) are: Wheat, barley and rye. These grains all naturally contain gluten. Coeliacs must also avoid products which state, "May contain traces of wheat, barley and rye" or products where the statement occurs: "Made in a factory which also handles wheat, barley and rye"    However, one other thing to think about:  oats.  In the UK, we do produce quite a few cakes and some candy which contains oats.    Oats do not naturally contain gluten, but as the crops are often grown alongside wheat, barley and rye, or processed in the same plants, cross-contamination can occur and they pick up gluten 'en route'.   The good news is that some food producers now grow oats away from these crops, and process them in oat dedicated plants, so you end up with a product called "pure oats" which are suitable for the majority of coeliacs (a minority react to avenin, the oat protein, in the same way they would to gluten, but I won't go into that here - just making you aware in case down the line you think it could be a problem).   So increasingly, in the UK at least, manufacturers are now printing oats in bold.   In candy production, you might find vegan chocolate which contains oat milk, hence I mention it here.  Unless such a candy bar stated that it was suitable for coeliacs,  your son would have to avoid it.   Incidentally, I think the idea of having a party after your holiday is a very wonderful, positive start to your son's gluten-free diet journey.  I was symptomatic by the time I was finally diagnosed with Coeliac Disease and was quite keen to start the diet straight away.  But just a few days after my endoscopy I was due to visit Normandy.  My consultant said to me, "Don't bother about taking up the diet until you get back".   I did try to start it in France but back then French catering establishments didn't seem to appreciate coeliac customers (something my gastroenterologist seemed to know something about!) so I was so glad he told me not to worry until I came home!
    • Kathleen JJ
      Options - 7 year old boy - Helicobacter pylori and serology

      By Kathleen JJ · Posted

      @cristiana Do you have any suggestions for the gummy bear type of candy? Because that is what is getting passed around. Someone told me "you will have to read all labels thoroughly from now on" but to be honest: I don't know what I'm looking for that should or should not be there? And is the notion "gluten free" trustable? And what about "may contain residual gluten"? Is that safe?
×
×
  • Create New...