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

Are My Symptoms Celiac?


Mama Maria

Recommended Posts

Mama Maria Newbie

So for the last three plus years I have had bowel problems. Had a colonoscopy 3 years ago and it was clear. Got diagnosed with IBS. I am also Vit D deficient. For the last few months it seems that I go the bathroom constantly and it is always loose. I am super tired all of the time. I cannot think straight and my STM is GOD AWFUL lately. I have no patience with anything anymore and I used to be very calm and easy going. My stomach hurts all the time. I have horrible gas pains (which I was also tested for gallbladder and that was negative). When I eat I go the bathroom almost immediately after and then some. (sorry to be gross) Plus, I am in my mid thirties and I am starting to feel like I am 90 with my achy joints. Should I ask the doctor to test me for Celiac? I also had an u/s of my uterus and ovaries to make sure it wasn't that. Plus my kidneys were checked too. Could this be Celiac disease? Because I am at my wits end feeling like this =(


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



Celiac.com Sponsor (A8-M):



shadowicewolf Proficient

How were you tested for your gallbladder? Blood test? I had to have mine out despite being normal on the blood test and ultrasound. It was discovered via HIDA scan that it was only working at 5% and that one half was working against the other, thus causing pain.

The rest of the issues you seem to have may indeed be something related to gluten. First, before you do anything, get tested. Then when all tests are over try a gluten-free diet regardless of the results.

GottaSki Mentor

Welcome Mama Maria!

YES...you should have your doctor order the full celiac blood panel. All of your symptoms are consistent with Celiac Disease and your path to diagnosis is far too common.

IMPORTANT: Do not remove gluten until you have completed both blood work and possible follow up endoscopic biopsies.

Full Celiac Blood Panel:

Total Serum IgA

Tissue Transglutaminase IgA and IgG

Endomysial Antibody IgA

Deamidated Gliadin Peptide IgA and IgG

Also, low vitamins/minerals can indicate you are not absorbing nutrients properly - another indicator of Celiac Disease. You have already tested deficient for Vitamin D, so you might want to have these drawn at the same time as the Celiac panel.

Misc blood tests:

Bs, K, Iron, Ferritin, Copper and Zinc

Others have posted that their doctors add:

A, Calcium, Magnesium and Potassium

If you haven't had them in a some time I'd add CBC and CMP - Complete Blood Count and Complete Metabolic Panel.

Hang in there - order the tests and use the time you are waiting for results to learn all you can about removing ALL gluten from your diet. If the tests are all negative, it is a very good idea to remove gluten for at least three months (six is better) to monitor symptom improvement. Non-Celiac Gluten Intolerance can have symptoms very similar to Celiac Disease - the only test for NCGI is response to gluten elimination.

Good luck to you :)

Mama Maria Newbie

How were you tested for your gallbladder? Blood test? I had to have mine out despite being normal on the blood test and ultrasound. It was discovered via HIDA scan that it was only working at 5% and that one half was working against the other, thus causing pain.

The rest of the issues you seem to have may indeed be something related to gluten. First, before you do anything, get tested. Then when all tests are over try a gluten-free diet regardless of the results.

I had a HIDA SCAN. Def not gallbladder

Mama Maria Newbie

Welcome Mama Maria!

YES...you should have your doctor order the full celiac blood panel. All of your symptoms are consistent with Celiac Disease and your path to diagnosis is far too common.

IMPORTANT: Do not remove gluten until you have completed both blood work and possible follow up endoscopic biopsies.

Full Celiac Blood Panel:

Total Serum IgA

Tissue Transglutaminase IgA and IgG

Endomysial Antibody IgA

Deamidated Gliadin Peptide IgA and IgG

Also, low vitamins/minerals can indicate you are not absorbing nutrients properly - another indicator of Celiac Disease. You have already tested deficient for Vitamin D, so you might want to have these drawn at the same time as the Celiac panel.

Misc blood tests:

Bs, K, Iron, Ferritin, Copper and Zinc

Others have posted that their doctors add:

A, Calcium, Magnesium and Potassium

If you haven't had them in a some time I'd add CBC and CMP - Complete Blood Count and Complete Metabolic Panel.

Hang in there - order the tests and use the time you are waiting for results to learn all you can about removing ALL gluten from your diet. If the tests are all negative, it is a very good idea to remove gluten for at least three months (six is better) to monitor symptom improvement. Non-Celiac Gluten Intolerance can have symptoms very similar to Celiac Disease - the only test for NCGI is response to gluten elimination.

Good luck to you :)

I have only had my Vit D checked never anything else on that level. I had a CMP and CBC about a year ago. I was pretty anemic with my last pregnancy but it was resolved shortly after. Actually, my symptoms have been worse since I had my last child ( 18 months ago) And now they are a daily...hourly...problem. Feel so lousy. I am going to call my doc in the morning and get the ball rolling. Thanks for listening. =)

GottaSki Mentor

I have only had my Vit D checked never anything else on that level. I had a CMP and CBC about a year ago. I was pretty anemic with my last pregnancy but it was resolved shortly after. Actually, my symptoms have been worse since I had my last child ( 18 months ago) And now they are a daily...hourly...problem. Feel so lousy. I am going to call my doc in the morning and get the ball rolling. Thanks for listening. =)

It is common for symptoms to be triggered or worsened by pregnancy, surgery or other stresses on the body. In hindsight I had symptoms my entire life, but they did worsen each decade and got much worse after the birth of my last child. I also was tested for possible gallbladder problems following his birth along with a multitude of tests that were always negative/normal until I was finally screened for Celiac Disease at 43.

Take care - keep looking for answers :)

megsybeth Enthusiast

I'm 35 and had some similar symptoms. I think it's very challenging to get a sense of normal for fatigue and confusion after you've had a baby. But before I got my diagnosis I would tell my husband that my days felt like they started with a big punch in the face. I'd be standing there in my kitchen with a couple boys bouncing off the walls downing cup after cup of coffee and just feeling so lost. And at the end of the day I just fantasized about crawling into bed. I didn't even have very severe GI issues, just tested because my son is getting tested and celiac symptoms sounded familiar.

The awesome thing about celiac is that if you have it and are like me, that cloud lifts almost immediately when you get off gluten. People tell me how bad they feel for me not being able to have bread but I feel so much more human and alert, it's worth it. Personally my stomach pain got much worse, but I've really just started the gluten-free diet, so I tell myself I'm healing.

Good luck!


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



Celiac.com Sponsor (A8-M):



Mama Maria Newbie

My stomach was killing me this morning. Usually that is when I feel my best because I have not eaten yet. This "cloud" you talk about I definitely have. I feel like I can't focus long enough to accomplish anything. I forget everything. My husband will be talking to me and I will be lost because I can't remember the beginning of the conversation. My stomach hurts so much today I have chest pain. This happens way too often. (My heart is fine had that checked too) It is funny how you can have all these symptoms and get checked for everything under the sun and yet it is possible that everything could be caused by just one thing. I cannot wait to find out if this is in fact what it is. I am not saying I hope I have celiac disease. I just want to feel better already <3

megsybeth Enthusiast

I know how you feel. I'll admit I was pretty happy to get the diagnosis. It just explained so much. And it's the first time in a long time that I've had a clear, hopeful picture for my son. It's so early for me so I'm sure there are different feelings to come but I really don't mind the diet. I also think so many health conditions make you feel powerless but this is one disease where rolling your sleeves up and cooking new, tasty foods is literally healing for you.

Also, I do recall that I was feeling a good deal of pain as I was considering this and waiting for the blood test results. I started to let myself notice the pain. That might be part of what you're going through too.

Keep us posted!

tripfecta Newbie

My symptoms also got much worse after my pregnancy. I found out I was severely Vit D deficient after going to the drs multiple times with a slew of symptoms. I was pretty amazed how many symptoms went away within a couple weeks of going gluten-free. Hopefully you get some answers and start feeling better soon!

megsybeth Enthusiast

I forgot to ask if you have any night vision issues? I noticed that I have a really harx time reading street signs at night, also mh eyes just feel tired, kind of unfocused. I guess vit A deficiency is very common with celiac, and those are common symptoms.

shadowicewolf Proficient

Whenever i get chest pain, it is related to my GERD. It only happens when its really bad.

Mama Maria Newbie

Yes I do have night vision problems!!! That is crazy that you mention that. My night vision is bad when it rains. Everything is just one giant light. That is a symptom of Celiac disease? I have had that for years. I think since college. I am also noticing that after big meals I get tired and a little dizzy. Anybody know anything about that? Am I starting to become a hypochondriac? Or am I just noticing more and paying more attention to what is going on? Hey guys thanks for listening BTW =). Again it is nice to discuss this with people who feel/felt the same.

megsybeth Enthusiast

Mama Maria,

That is funny that you have night vision issues. I never would have thought it was a symptom of anything but it's related to the vitamin A deficiency. Like lots of things I just thought, well our bodies change as we get older. Maybe I need glasses. I ordered this book, Celiac Disease: A Hidden Epidemic (2010 version) by Peter Green, who is a prominent GI doctor at Columbia and big in the area of celiac. The book was so helpful. He went over the various vitamin deficiencies, how they are related to celiac, and when I read that it was one of many aha moments. This book is great because it's very evidence based, scientific, so there are statistics and explanations you can share with others to add some legitimacy. Other random symptoms I've read about and have: canker sores, dark circles under the eyes, sore joints, weak teeth, infertility, periods of stomach pain but really not usually much.

Good luck!

-Megan

shadowicewolf Proficient

Before i went gluten free, i could not eat breakfast (or if i did it was a late after 9am one) because my stomach would just churn and churn and made me feel like i was on a roller coaster. Nasuea to the mex. It stopped after i went gluten free (though sometimes, very rarely, my stomach does not like something sugary, such as an apple at 6ish am, but that hasnt happened in months).

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - ShariW commented on Scott Adams's article in Frequently Asked Questions About Celiac Disease
      4

      What are Celiac Disease Symptoms?

    2. - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

    3. - Scott Adams replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

    4. - Scott Adams replied to Jmartes71's topic in Coping with Celiac Disease
      1

      My only proof

    5. - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      1

      Methylprednisone treatment for inflammation?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,907
    • Most Online (within 30 mins)
      7,748

    Lori4050
    Newest Member
    Lori4050
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • klmgarland
      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
    • Scott Adams
      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many people, it can be very effective at reducing inflammation and providing rapid relief from symptoms like pain, diarrhea, and bleeding, often serving as a short-term "rescue" treatment to bring a severe flare under control. However, experiences can vary, and its effectiveness depends heavily on the specific cause of the inflammation. It's also important to be aware that while it can work well, it comes with potential side effects, especially with longer-term use, so it's typically used for the shortest duration possible under close medical supervision. It's always best to discuss the potential benefits and risks specific to your situation with your gastroenterologist.
    • Scott Adams
      Based on what you've described, it is absolutely possible you are dealing with non-celiac gluten sensitivity (NCGS).  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.   Your situation is a classic presentation: a negative celiac panel but a clear, recurring pattern of symptoms triggered by gluten. The symptoms you listed—particularly the extreme fatigue, bloating, neurological-psychiatric symptoms like depression and anxiety, and even the skin manifestations like facial flushing—are all well-documented in research on NCGS. It's important to know that you are not alone in experiencing this specific combination of physical and emotional reactions. The only way to know for sure is to commit to a strict, 100% gluten-free diet under the guidance of a doctor or dietitian for a period of several weeks to see if your symptoms significantly improve. It is also crucial to rule out other potential causes, so discussing these symptoms with a gastroenterologist is a very important next step.
×
×
  • 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.