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

Celiac Or Not?


mike2184

Recommended Posts

mike2184 Rookie

Let me preface this by saying that I know for 100% certain that I have a gluten intolerance. I will also never knowingly eat gluten again. I was just wondering from my symptoms and recovery time if anyone can give me their best guess as to whether I am celiac. My great aunt is celiac, but she is the only one in my family who has been diagnosed.

I am a 31 year-old male who has always been in pretty good shape. In January 2006, I began having tingling sensations in my hands and feet. So, I began the process of doctor/neuro visits. My bloodwork was normal (b12 was around 400, I think), MRI normal, neuro diagnosed me with a mild sensory neuropathy - basically told me it was no big deal. Tingling was getting worse in late May - my hand would tingle so bad that it would wake me up every hour. I was also catching a cold about once a month since January, when in the past I would maybe have 1 cold a year.

At this point, I started doing research on what could be causing neuropathy. When I came across celiac/gluten intolerance as one of the possibilities, everything started to make sense. For about the past 3 years, I would have the big D about once every few months. This had increased to about once every month since January. I was able to reconcile all of the episodes that I could remember to a heavy gluten intake occurring on the same day.

So, I went gluten free on June 16. The next day my hands stopped tingling and haven't started again. My feet still get a little sore at the end of a workday but they are much better than they were and getting better. I haven't had any D except for once when I probably was glutened from eating out. I have purposely tried to consume reasonable amounts of dairy and soy to see if I have any intolerance to them. So far, nothing. No colds since end of May, and I feel great.

So, diagnose away. Thanks in advance - this forum has been a great help to me over the past month.


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



Celiac.com Sponsor (A8-M):



AndreaB Contributor

Welcome Mike. :D

I don't whether you are celiac or "just" gluten intolerant. Both are gluten free for life. Sounds like you are on the right path.

Aerin328 Apprentice

Mike,

I can't say whether or not you are Celiac, but I can at least tell you I've experienced similar symptoms. A few years ago I had a heat stroke in Cheng Du China and spent 4 days in a Chinese hospital. After the experience I felt like I had respiratory problems and my hands (and sometimes feet) would tingle and sometimes even go numb. After several months it went away. Now separately, 3.5 months ago, I've been striken with a gastro-intestinal plague which has recently been diagnosed as Celiac's disease. (Until last month I had never even heard of it!) During this latest illness I have also experienced the tingling/numb hands. I feel they are a symptom of something I've had with me for a very long time which only comes out during illness or physical stress - I currently postulate (as I am now diagnosed) that something must be Celiac. There is research out there that confirms Celiac disease can cause central nervous system distress and damage... so Celiac is definitely a possibility in your case I would say. That's great you've got the sensations to cease, you sound like you're on the path to health. Keep it up!

Christian

rinne Apprentice
Let me preface this by saying that I know for 100% certain that I have a gluten intolerance. I will also never knowingly eat gluten again. I was just wondering from my symptoms and recovery time if anyone can give me their best guess as to whether I am celiac. My great aunt is celiac, but she is the only one in my family who has been diagnosed.

Hi and welcome. :) This is a wonderful forum with lots of great resources, the people being the greatest resource.

It sounds to me like you have an answer in the combination of a genetic connection and a positive dietary response. Congratulations on figuring it out so quickly, I hope your health continues to improve.

aprilh Apprentice

I do not know the difference between being celiac or gluten intolerant. Therefore I cannot answer that, however, sounds like you are definately on the right path!

Can anyone clarify the difference?

nettiebeads Apprentice
I do not know the difference between being celiac or gluten intolerant. Therefore I cannot answer that, however, sounds like you are definately on the right path!

Can anyone clarify the difference?

Where's Tarnalberry when you need her? Does there really have to be a difference? The diet is the same, and some have surmised that the amount of damage is the deciding factor. I don't think I had much damage when I was dx'd by diet challenge alone after 6 weeks of D. But that's the only test I had and I so won't ingest gluten knowingly for any other test. gluten-free is the only answer to either dx.

Annette

eKatherine Apprentice
Where's Tarnalberry when you need her? Does there really have to be a difference? The diet is the same, and some have surmised that the amount of damage is the deciding factor. I don't think I had much damage when I was dx'd by diet challenge alone after 6 weeks of D. But that's the only test I had and I so won't ingest gluten knowingly for any other test. gluten-free is the only answer to either dx.

Annette

I think celiac is when you've reached the point where you're quite sick before you begin treatment, though for many doctors, it is also necessary to get a positive endoscopy.


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



Celiac.com Sponsor (A8-M):



Rikki Tikki Explorer

It seems to me they would be one and the same. With both of them you must remain gluten free the rest of your life. Could the difference be a genetic link? I am not sure, but welcome to the board

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,929
    • Most Online (within 30 mins)
      7,748

    quinnmac
    Newest Member
    quinnmac
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.5k

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)

    • There are no registered users currently online

  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      The first set of results show two positive results for celiac disease, so at the very least it looks like you could have it, or at the least 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.      
    • Scott Adams
      Elevated tissue transglutaminase IgA (tTG-IgA) levels are highly specific for celiac disease, and they are a key biomarker used in its diagnosis. However, there are some rare instances where elevated tTG-IgA levels have been reported in conditions other than celiac disease. While these cases are not common, they have been documented in the literature. Below are some examples and references to studies or reviews that discuss these scenarios:  1. Non-Celiac Gluten Sensitivity (NCGS)    - NCGS typically does not cause elevated tTG-IgA levels, as it is not an autoimmune condition. However, some individuals with NCGS may have mild elevations in tTG-IgA due to intestinal inflammation or other factors, though this is not well-documented in large studies.    - Reference: Catassi, C., et al. (2013). *Non-Celiac Gluten Sensitivity: The New Frontier of Gluten-Related Disorders*. Nutrients, 5(10), 3839–3853. [DOI:10.3390/nu5103839](https://doi.org/10.3390/nu5103839)  2. Autoimmune Diseases    - Elevated tTG-IgA levels have been reported in other autoimmune conditions, such as type 1 diabetes, autoimmune hepatitis, and systemic lupus erythematosus (SLE). This is thought to be due to cross-reactivity or polyautoimmunity.    - Reference: Sblattero, D., et al. (2000). *The Role of Anti-Tissue Transglutaminase in the Diagnosis and Management of Celiac Disease*. Autoimmunity Reviews, 1(3), 129–135. [DOI:10.1016/S1568-9972(01)00022-3](https://doi.org/10.1016/S1568-9972(01)00022-3)  3. Chronic Liver Disease    - Conditions like chronic hepatitis or cirrhosis can sometimes lead to elevated tTG-IgA levels, possibly due to increased intestinal permeability or immune dysregulation.    - Reference: Vecchi, M., et al. (2003). *High Prevalence of Celiac Disease in Patients with Chronic Liver Disease: A Role for Gluten-Free Diet?* Gastroenterology, 125(5), 1522–1523. [DOI:10.1016/j.gastro.2003.08.031](https://doi.org/10.1016/j.gastro.2003.08.031)  4. Inflammatory Bowel Disease (IBD)    - Some patients with Crohn’s disease or ulcerative colitis may have elevated tTG-IgA levels due to intestinal inflammation and damage, though this is not common.    - Reference: Walker-Smith, J. A., et al. (1990). *Celiac Disease and Inflammatory Bowel Disease*. Journal of Pediatric Gastroenterology and Nutrition, 10(3), 389–391. [DOI:10.1097/00005176-199004000-00020](https://doi.org/10.1097/00005176-199004000-00020)  5. Infections and Parasites    - While infections (e.g., giardiasis) are more commonly associated with false-positive tTG-IgA results, chronic infections or parasitic infestations can sometimes lead to elevated levels due to mucosal damage.    - Reference: Rostami, K., et al. (1999). *The Role of Infections in Celiac Disease*. European Journal of Gastroenterology & Hepatology, 11(11), 1255–1258. [DOI:10.1097/00042737-199911000-00010](https://doi.org/10.1097/00042737-199911000-00010)  6. Cardiac Conditions    - Rarely, heart failure or severe cardiovascular disease has been associated with elevated tTG-IgA levels, possibly due to gut ischemia and increased intestinal permeability.    - Reference: Ludvigsson, J. F., et al. (2007). *Celiac Disease and Risk of Cardiovascular Disease: A Population-Based Cohort Study*. American Heart Journal, 153(6), 972–976. [DOI:10.1016/j.ahj.2007.03.019](https://doi.org/10.1016/j.ahj.2007.03.019)  Key Points: - Elevated tTG-IgA levels are highly specific for celiac disease, and in most cases, a positive result strongly suggests celiac disease. - Other conditions causing elevated tTG-IgA are rare and often accompanied by additional clinical findings. - If celiac disease is suspected, further testing (e.g., endoscopy with biopsy) is typically required for confirmation. If you’re looking for more specific studies, I recommend searching PubMed or other medical databases using terms like "elevated tTG-IgA non-celiac" or "tTG-IgA in non-celiac conditions." Let me know if you’d like help with that!
    • MaryMJ
      I called zero water and they state their filters do not contain gluten or gluten containing ingredients. 
    • trents
      I agree. Doesn't look like you have celiac disease. Your elevated DGP-IGG must be due to something else. And it was within normal at that after your gluten challenge so it is erratic and doesn't seem to be tied to gluten consumption.
    • Jack Common
      Hello! I want to share my situation. I had symptoms like some food intolerance, diarrhea, bloating, belching one year ago. I thought I could have celiac disease so I did the blood tests. The results were ambiguous for me so I saw the doctor and he said I needed to do tests to check whether I had any parasites as well. It turned out I had giardiasis. After treating it my symptoms didn't disappear immediately. And I decided to start a gluten free diet despite my doctor said I didn't have it. After some time symptoms disappeared but that time it wasn't unclear whether I'd had them because of eliminating gluten or that parasite. The symptoms for both are very similar. Giardiasis also damages the small intestine. The only way to check this was to start eating bread again as I thought. Now about my results.   These are my first test results (almost a year ago) when I had symptoms: The Tissue Transglutaminase IgA antibody - 0.5 U/ml (for the lab I did the tests 0.0 - 3.0 is normal) The Tissue Transglutaminase IgG antibody - 6.6 U/ml (for the lab I did the tests 0.0 - 3.0 is normal) Immunoglobulin A - 1.91 g/l (for the lab I did the tests 0.7 to 4 g/l is normal) IgA Endomysial antibody (EMA) - < 1:10 titer (for the lab I did the tests < 1:10 titer is normal) IgG Endomysial antibody (EMA) - < 1:10 titer (for the lab I did the tests < 1:10 titer is normal) Deamidated gliadin peptide IgA - 0.3 U/ml (for the lab I did the tests 0.0 - 6.0 is normal) Deamidated gliadin peptide IgG - 46.1 U/ml (for the lab I did the tests 0.0 - 6.0 is normal)   Then I didn't eat gluten for six months. Symptoms disappeared. And I started a gluten challenge. Before the challenge I did some tests. My results: The Tissue Transglutaminase IgG antibody - 0.5 U/ml (for the lab I did the tests < 20 U/ml is normal)) Deamidated gliadin peptide IgG - 28 U/ml (for the lab I did the tests < 20 U/ml is normal)   During the challenge I ate 6 slices of wheat bread. After the challenge my results are: The Tissue Transglutaminase IgA antibody - 2.0 U/ml (for the lab I did the tests < 20 U/ml is normal) The Tissue Transglutaminase IgG antibody - 2.0 U/ml (for the lab I did the tests < 20 U/ml is normal) Immunoglobulin A - 1.31 g/l (for the lab I did the tests 0.7 to 4 g/l is normal) Deamidated gliadin peptide IgA - 2.0 U/ml (for the lab I did the tests < 20 U/ml is normal) Deamidated gliadin peptide IgG - 2.13 U/ml (for the lab I did the tests < 20 U/ml is normal)   To be sure I continued consuming gluten. I ate a lot each day. Two months after I did the tests again. My results I got today are: The Tissue Transglutaminase IgA antibody - 0.7 U/ml (for the lab I did the tests < 20 U/ml is normal) Immunoglobulin A - 1.62 g/l (for the lab I did the tests 0.7 to 4 g/l is normal) Deamidated gliadin peptide IgG - 25.6 U/ml (for the lab I did the tests < 20 U/ml is normal)   Nowadays I didn't have any symptoms except tiredness but I think it's just work. I think it was this parasite because two years ago, for example, and before I didn't have these symptoms and I always ate gluten food. But I'm still not sure especially because the Deamidated gliadin peptide IgG results are sometimes high. What do you think? @Scott Adams
×
×
  • Create New...