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

Asymptomatic Gut


kdskaggs

Recommended Posts

kdskaggs Newbie

Hi all,

I wrote last week about my newly diagnosed 12-year old Celiac daughter. I spoke today with my Naturopath about her being positive and whether I should be tested. Interestingly, he told me that the Interstitial Cystitis I have had for 20 plus years and the pancreatitis attack I had 18 months ago could be caused by Celiac disease, even though I don't have gut symptoms. He told me to go ahead and have the test so we would know for sure. The thought that Celiac could be the cause of these things is amazing to me. I have been eating the gluten-free diet, along with my daughter and the rest of our family. Do I need to start eating gluten again for the blood test? I emailed my primary care doctor today to get the test ordered. My ND also explained that her low positive blood counts could be explained by the fact that she never did eat a lot of gluten, just enough to register a positive Celiac.

Has anyone here tested positive for celiac disease, had no gut symptoms but other diseases that could have been caused by celiac disease?

Kenda


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



Celiac.com Sponsor (A8-M):



celiac3270 Collaborator

Not me--

But I can say that the majority of celiacs are asymptomatic, which is precisely why most celiacs aren't diagnosed, and since they don't think anything's wrong with them or their doctors don't check for celiac, most of the people here on the board are symptomatic celiacs.

It's definitely possible and very likely that you can have celiac even w/o symptoms-- after all, there is 1 out of every 130 people that have celiac.

KaitiUSA Enthusiast

I had no symptoms as well. Until my immunity went down with mono thats when I started having problems. They told me I have had celiac for years though and I never thought anything was wrong growing up. celiac3270 is right....celiac is very underdiagnosed. You could still have celiac and have no symptoms.

kdskaggs Newbie

Thank you "Bush", Kati and celiac3270! I'm anxious to get tested. I've had Interstitial Cystitis for over 20 years. Since I started eating healthier in the past 5 years, it has improved tremendously. I'm wondering now if it's because I stopped eating the typical America diet and less gluten.

My immune system is very weak and I have trouble gaining weight. I have weighed 95 pounds most of my adult life, I'm 5'4". I finally have been able to gain up to 100 pounds, eating 6 times per day. I weight train 3 times per week, do yoga twice weekly but don't build muscle. I am also anemeic, even when I take iron supplements. Celiac definitely makes sense.

I have been eating gluten-free for close to a week now because I have started cooking this way for my celiac daughter. How much gluten do I need to eat before having the celiac blood test. I sure don't want to mess up the test by being gluten-free.

Thanks again for the kind help.

Kenda

flboysmom Rookie

My husband does not have the classic "gut" symptoms. His symptoms are fatigue related. His thyroid levels also fluctuate, ranging from extremely low to normal when he cycles on and off with the chronic fatigue symptoms. Since going gluten-free he is feeling much better and his energy level has soared. He has also had lifelong rashes on his thighs and arms that have gone undiagnosed. We suspect that they are DH.

celiac3270 Collaborator
My immune system is very weak and I have trouble gaining weight. I have weighed 95 pounds most of my adult life, I'm 5'4". I finally have been able to gain up to 100 pounds, eating 6 times per day. I weight train 3 times per week, do yoga twice weekly but don't build muscle. I am also anemeic, even when I take iron supplements. Celiac definitely makes sense.

I have been eating gluten-free for close to a week now because I have started cooking this way for my celiac daughter. How much gluten do I need to eat before having the celiac blood test. I sure don't want to mess up the test by being gluten-free.

Those are a few good examples--a lot of people, also, don't have excessive flatulence and loose stools, but instead are shorter than others, are very low or very high in weight, are constantly fatigued, and have other related disorders. Your difficulty in gaining weight is a classic celiac symptom that I also have. Anemia is very common in celiacs (since nutrients aren't being absorbed while you're on gluten and your villi are destroyed).

I think you should try to stay on gluten as much as you can, particularly if it doesn't cause you great pain (symptoms). If you're cooking gluten-free at home for your daughter, it might be easier to eat lots of gluten while you're out of the house (a muffin, doughnut, or bagel in the morning, a sandwich at lunch, etc.) but make sure you get in enough. The idea is for the doctor to see the damage. One week isn't bad at all, but you're better off staying on gluten so you won't influence the results at all (for example, an inconclusive biopsy).

kdskaggs Newbie

This is amazing, I also have chronic fatigue and thyroid problems as well. I am really excited to get the celiac disease test. I plan on eating gluten-free, along with my daughter, anyway but I'd love to know if this could be part of the reason I am the way I am.

How about messed up female hormones, are they a symptom? I might as well pin everything on celiac disease> :)

Kenda

Those are a few good examples--a lot of people, also, don't have excessive flatulence and loose stools, but instead are shorter than others, are very low or very high in weight, are constantly fatigued, and have other related disorders. Your difficulty in gaining weight is a classic celiac symptom that I also have. Anemia is very common in celiacs (since nutrients aren't being absorbed while you're on gluten and your villi are destroyed).


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



Celiac.com Sponsor (A8-M):



flboysmom Rookie

I'm just quickly adding that my husband's blood panel was positive, however the biopsy was negative. After much research and both of our sons having symptoms we decided to go gluten-free and see if it helped. It has greatly changed the mood in our home.

celiac3270 Collaborator
How about messed up female hormones, are they a symptom? I might as well pin everything on celiac disease> :)

I just ran a search:

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

There's a lot on hormones--this was a bit on female hormones.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,207
    • Most Online (within 30 mins)
      7,748

    WAB19
    Newest Member
    WAB19
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
    • Xravith
      I'm very confused... My blood test came out negative, I checked all antibodies. I suppose my Total IgA levels are normal (132 mg/dl), so the test should be reliable. Still, I'm not relieved as I can't tolerate even a single biscuit. I need to talk to my doctor about whether a duodenal biopsy is necessary. But it is really possible to have intestinal damage despite having a seronegative results? I have really strong symptoms, and I don't want to keep skipping university lectures or being bedridden at home.
    • Scott Adams
      They may want to also eliminate other possible causes for your symptoms/issues and are doing additional tests.  Here is info about blood tests for celiac disease--if positive an endoscopy where biopsies of your intestinal villi are taken to confirm is the typical follow up.    
    • Scott Adams
      In the Europe the new protocol for making a celiac disease diagnosis in children is if their tTg-IgA (tissue transglutaminase IgA) levels are 10 times or above the positive level for celiac disease--and you are above that level. According to the latest research, if the blood test results are at certain high levels that range between 5-10 times the reference range for a positive celiac disease diagnosis, it may not be necessary to confirm the results using an endoscopy/biopsy: Blood Test Alone Can Diagnose Celiac Disease in Most Children and Adults TGA-IgA at or Above Five Times Normal Limit in Kids Indicates Celiac Disease in Nearly All Cases No More Biopsies to Diagnose Celiac Disease in Children! May I ask why you've had so many past tTg-IgA tests done, and many of them seem to have been done 3 times during short time intervals?    
×
×
  • 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.