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How Old? Celiac For How Long?

swittenauer

How old are you?  

63 members have voted

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Creative-Soul Newbie
Creative-Soul
Posted

I'm 34yrs and was self-diagnosed / went Gluten-Free October 2005.

Diagnosed by my doctor July 2006 (when I finally could partially afford to see him ;) ) who accepted my dietary results and horrible reactions to an abbreviated gluten challenge - self-inflicted -which he promptly told me to stop!

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Soccer Girl Newbie
Soccer Girl
Posted

i am 13 and have been gluten free for 4 years. its the hardest thing i have EVER done but its better that getting sick all the time.i have had symptoms all my life. :)

Generic Apprentice
Generic
Posted

I'm 32 and have been gluten free for 19 years. I was sick my whole life and was litterally dyeing when I was diagnosed. First trip to the E.R. was when I was 9.

-Laurie

Eliza13 Contributor
Eliza13
Posted

I'm 31 and was diagnosed at age 30. You'd think that my doctor would have clued in long ago with my health history. I had tonsils removed at age 2 and was a chronic sick child. Always had a cold, always throwing up, had teeth seeled as a kid b/c of enamel loss. The most disturbing symptom that I get as a result of eating gluten is complete cessation of menses. I have never had monthly cycles and was averaging maybe one period per year. Docs diagnosed me "PCOS" b/c they could not find anything wrong with me. Well....guess what? After a few weeks gluten free I got my period. 5 weeks after that I got a second one.....another 5 weeks and another cycle.....you get the picture. It's very scary to me that something that I was eating could make me stop menstruating...It must have been ravaging my body. I know it was for other reasons too....diarrhea, extreme fatigue, hair loss, knee pain....the list goes on and on.

This question of age is very important. I often wonder how much irreversable damage was done to my body that could have been prevented with an earlier diagnosis. It really is astonishing that wheat/gluten makes me stop getting my period and I wonder what else it was doing to my body that I don't know about. Oh....eating gluten also raises my prolactin and white blood cell count.

Guest Villanfam
Guest Villanfam
Posted

I am 29. I have had symptoms all my life, and after my dad bought me the book "Living Gluten-Free for Dummies" I realized for I had a DISEASE.

I was gluten-lite since high school, although I didn't even know what gluten was. I just knew I couldn't eat breads/pasta/pizza w/out throwing up. I had several other symptoms, rashes, and many of which are neurological but I did not relate them to eating gluten.

I diagnosed myself in Sept 2006 because I do not have insurance. I had 2 of my 3 kids tested for it and they both came back positive. I don't think I've cried so much in my life, mostly out of guilt for not knowing they had the same thing I did, and I gave it to them! They had no obvious GI symptoms except they were all very small for their age, my son was constipated, but since I was too I didn't think to much about it. Also he ate cheese like there was no tomorrow! My son had 2 peanut butter and honey sandwiches for lunch at school everyday! No vomiting, no diarrhea. If I even took one bite I would have been hugging the toilet LOL!

So here we are gluten-free since Sept 14th. And for the 1st time in my life I now know what really being "normal" feels like! It had been at least a year since I ate pasta, and when I tried the gluten free kind, I was so scared to even take the 1st bite because it looks exactly like wheat pasta! I did and then ate the whole thing and then just waited to get sick, and then nothing happened! I ate pasta w/out puking YIPPEE!!! I can eat things that I haven't been able to for so long bread/pasta/cookies/cakes/donuts, gluten free of course, but it was very liberating for myself.

For my kiddos though, it's been tough because I worry about them at school. I have been bringing lunch to School everyday and had the Principal designate a specific spot (the end of the table) for us to sit, so I don't have to worry about the other kids crumbs getting on my kids hands and food. It's really exhausting, but they are definitely worth it!!

Courtney

Anonymousgurl Contributor
Anonymousgurl
Posted
I have not been diagnosed, but I've been gluten free since May and I'm planning on doing a gluten challenge :blink:

I'm 18. I was going to do the poll, but there is no slot for 18 year olds....should I say I'm under 18 or that I'm 19? :huh:

age 16

14 years gluten-free (15 in feb.)

Age 19. Diagnosed in Jan of 2004

i am 13 and have been gluten free for 4 years. its the hardest thing i have EVER done but its better that getting sick all the time.i have had symptoms all my life. :)

I was going to ask the same question because I hadn't found anyone in my age range yet :) I'm 17 and I haven't been officially diagnosed, but I have a definite sensitivity (to practically all foods really...LoL..) and have been gluten free for just a month.

I'd love to chat with all of you that I quoted up there ^^^^ about your experiences and what your situations are...it's hard to be a teen/young adult and have to deal with this kind of stuff :(

Tippy Apprentice
Tippy
Posted

I'm 23 and got diagnosed on December 27th, 2006 ^-^;;; although ive probably had it longer, my symptoms started in May of 2003

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  • 2 weeks later...
larry mac Enthusiast
larry mac
Posted

55 here. Have had GI problems for couple years. Finally dx 3 weeks ago after all blood, urine, stool tests, then endoscopic duodenal biopsies confirmation.

Definately doing better, but have had a couple small lapses. Am trying to be very, very careful, but keep finding stuff not supposed to be eating. Had a really good salad (almost never even eat salads) yesterday, with outstanding Blue Cheese dressing from Central Market. THEN, afterwards, I find out not to eat that.

Am finding this forum extremely helpful, and greatly appreciate everyone on here. Thank you, thank you. lm

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    • Scott Adams
      How many grams is there in one slice of wheat bread?

      By Scott Adams · Posted

      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
      Confused with test results

      By Scott Adams · Posted

      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
      Water filters and gluten

      By MaryMJ · Posted

      I called zero water and they state their filters do not contain gluten or gluten containing ingredients. 
    • trents
      What should I do with these test results?

      By trents · Posted

      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
      How many grams is there in one slice of wheat bread?

      By Jack Common · Posted

      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
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