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
      131,561
    • Most Online (within 30 mins)
      7,748

    lamps
    Newest Member
    lamps
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)

    • There are no registered users currently online

  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • petitojou
      Thank you so much for sharing your experience and I found myself giggling with happiness as I read how your body reached such spring! And I hope that your current journey is also successful!! Definitely starting the food diary! So many amazing advices. And it’s very scary. It really hits all our soft spots as well as our confidence system. Most doctors I went thought I was underage despite being in my late 20s. Right now I look like am I twelve, but is also this body that’s taking so much, so I might as well love it too! Going to make the necessary changes and stay in this path. Thank you again! 🫶
    • petitojou
      Thank you so much for the information and kind message! Reading this transformed how I’ve been viewing my efforts and progress. Guess there’s still a lot to celebrate and also heal 😌  Yes, I’ve been taking it! Just recently started taking a multivitamin supplement and separated vitamin D! I also took chewable Iron polymaltose for ferritin deficiency 2 months ago but was unable to absorb any of it.  Thank you again! Hearing such gentle words from the community makes my body and heart more patient and excited for the future. 
    • ckeyser88
      I am looking for a roomie in Chicago, Denver or Nashville! 
    • Scott Adams
      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
×
×
  • 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.