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Frustrated!


Ems1984

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Ems1984 Rookie

I decided to go gluten-free after my mum was told she was gluten-intolerant. we both have IBS related synptoms. the worst for me is the gas and bloating, sometimes its soo bad i cant stand up.

anyway, i've been gluten-free for 2 weeks today (have prob stuffed up two or three times tho). i felt pretty good for the first week and a half, but the last two days have been horrible. ive had shocking gas, diarrhea and bloating but am fairly confident i havent had any gluten.

i really just want an answer, im happy to give up anything in order for these symptoms to go away! ive also eliminated lactose from my diet to see if that is also a problem. i know that other foods can cause gas (such as beans and brocolli) but the severity of my symptoms suggests it was more than just a few gas-causing foods...

so how long should it take to see improvements if it is gluten that is causing these symptoms?

should i assume by now that im not gluten-intolerant if the symptoms came on without me eating anything bad??

definately appreciate any help or answers!!

Em :)


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psawyer Proficient

I saw some improvement within a week, but my symptoms were severe, and the damage to my villi substantial. Things continued to improve over time, and I would say that things were close to "normal" after about three months.

Recovery time varies based on a number of factors, including the degree of damage, the age of the patient, and the length of time the untreated condition existed.

Consider giving up dairy, at least in the early stages. The symptoms you describe could be from lactose intolerance. Temporary lactose intolerance is common in recovering celiacs. You don't notice it when the gluten reaction is also there, but when the gluten is removed, the lactose issue moves into first place. The enzyme needed to digest lactose (milk sugar), lactase, is produced in the tips of the villi. Until the villi heal, there will be a lactase deficiency and thus a lactose intolerance.

Be patient. It takes time.

Lisa Mentor

Welcome Em,

Mastering the gluten free diet can be very complicating in the beginning. Perhaps you can keep a food diary. Have you checked your meds, lotions, vitamines, shampoo. Scratched pots and pans can transfer gluten, a shared toaster can do the same.

Have you considered testing? If so, you must continue to eat gluten for the optimun in accuracy.

Please do not accept IBS as a diagnosis. Continue to seek a cause. It could be something as simple as a slow moving digestive system. I recall having gas pains so strong that I would black out, many many years before Celiac became an issue.

Good luck.

Leper Messiah Apprentice

I'm sort of experiencing the same, at times I thought it can't be gluten as I was getting the same symptoms but I guess it takes time for your body to both adjust and heal.

Re. Momma Goose - I never even considered non-food items and small scale cross contamination, can a gluten intolerance be that sensitive? Was that your experience?

one more mile Contributor

When you gave up the Gluten what did you add to your diet?

I found that I had added a ton of soy and that gave me runs and gas really bad. Perhaps what you added to replace the gluten is reacting bad.

ang1e0251 Contributor

I don't really distinguish the sensitivity of celiac disease and gluten intolerance as being different. I've read too many personal accounts here where people with both have severe reactions. And both groups seem to have certain folks who are ultra sensitive.

Dairy is a good point. Those are some of the symptoms I experience with dairy. The other possiblity is cross contamination or a new food sensitivity. Try cutting the dairy as recommended and also look for sneaky gluten.

nora-n Rookie

What did you add instead of gluten?

As you heal , you might find you react to eve tiny amounts of gluten contamination. Some gluten is quite hidden. Some is tricky, for example malt flavouring has a lot of gluten, and being in a kitchen where someone else has baked ordinary bread is way too much for many, me included.

In the beginning I also reacted to mustard and sweet bell peppers, but I tolerate them again like before all that now.

nora


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Ems1984 Rookie

thanks for all your responses! i feel so encouraged being able to talk with people who have some understanding of how this all works!

i have been recording what i have been eating and also how my body has been reacting. i do think my increase in soy could be the cause of some of my latest symptoms...

but yes, will keep at it for a few more weeks!

prayin4achange Newbie
In the beginning I also reacted to mustard and sweet bell peppers, but I tolerate them again like before all that now.

nora

Hey Nora. I have two questions. Firstly, I love mustand and bell peppers and eat them a lot. Do you know why you'd have a reaction to them?? Also, I was diagnoised with hypothyroid last year and also had borderline number. You said that the thyroxine first started to work well on a low-carb and gluten-free diet. I also realize I feel much better digestively on low-carb but I also feel very light headed and tired. Can you please give me an idea of how you did this diet? Any ideas will be SOOO appreciated. Thank u!!

jenn

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    • 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!
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    • trents
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    • 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
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