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Lollie

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Lollie Enthusiast

Hi all!!!!!! :D I just wanted to share some good news about this past weekend! I had posted that I had concerns about going out of town this past weekend- eating out, feeling bad, ect..... ;)

Well I took everyone's advice. I packed a bunch of Lara bars, my favorite crackers, stocked up on Whole Foods cookies, and had the hotel put a refrigerator in the room. When we were settled in the room, we found the local whole foods and stocked up on yogurt, fruit, and other things that would be helpful.

This is the first time in about 10 years that I actually felt really good on a vacation. B) I did not get sick, not once! I actually ate at a seafood restaraunt, I ate at Chili's and I ordered room service berries to go with my yogurt. You see, I had not really eaten on vacation in all that time. I would always feel sick, I wouldn't have any energy, and by the end I couldn't wait to get home to where it didn't really matter that I was sick-it's always easier at home. But this time, and most importantly......I was able to really relax, and enjoy this mini-vacation! :D:D:D

I wanted to give a positive side to this crumby disease.....I would give up all the bread, restraunts, whatever, to just feel good and enjoy my life again, and now I feel like I finally have that, a LIFE!!!!!!

Thanks to all who gave me advice! And here's some hope to those just starting out- it does get better, just try to focus on the positive when ever you can! :)

Lollie


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Guest Viola

That's great Lollie! Good for you! :D Really glad you had a healthy good time.

jerseyangel Proficient

That is wonderful to hear, Lollie! I always have had the same issues with travelling as you--I just find it easier to stay home :( . Stories like yours are just what I need to hear--I am not staying at home all summer this year, I'm determined to go away--at least for a long weekend! Thanks ;)

Lollie Enthusiast
That is wonderful to hear, Lollie! I always have had the same issues with travelling as you--I just find it easier to stay home :( . Stories like yours are just what I need to hear--I am not staying at home all summer this year, I'm determined to go away--at least for a long weekend! Thanks ;)

That's wonderful! I hope you have an amazing vacation!!!!! :D If, when the time comes, you need any advice or tips- feel free to PM me! I'll be happy to help!

Lollie

jerseyangel Proficient

I will do that! Thanks :D

jenvan Collaborator

Wonderful news Lollie! I'll be heading out of town for a trip in a few days also. It does pay to plan ahead!

Patti--You deserve a good trip!! :D

tiredofdoctors Enthusiast

Congratulations Lollie! :D That's fantastic! :D:D:D Lynne


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dlp252 Apprentice

Wow, that's wonderful Lollie!!!

Guest Pixi

Aww, Laura, that's so fantastic! :)

I'm 22 and I've been wondering how I'll manage the rest of my life -- vacations, a wedding (let's hope, lol), parties, events, etc.. -- with this dis-ease. Thanks for sharing that story.. I like knowing there's happy, travelling celiacs out there! Something to aspire to ;)

jackie4 Apprentice
Hi all!!!!!! :D I just wanted to share some good news about this past weekend! I had posted that I had concerns about going out of town this past weekend- eating out, feeling bad, ect..... ;)

Well I took everyone's advice. I packed a bunch of Lara bars, my favorite crackers, stocked up on Whole Foods cookies, and had the hotel put a refrigerator in the room. When we were settled in the room, we found the local whole foods and stocked up on yogurt, fruit, and other things that would be helpful.

This is the first time in about 10 years that I actually felt really good on a vacation. B) I did not get sick, not once! I actually ate at a seafood restaraunt, I ate at Chili's and I ordered room service berries to go with my yogurt. You see, I had not really eaten on vacation in all that time. I would always feel sick, I wouldn't have any energy, and by the end I couldn't wait to get home to where it didn't really matter that I was sick-it's always easier at home. But this time, and most importantly......I was able to really relax, and enjoy this mini-vacation! :D:D:D

I wanted to give a positive side to this crumby disease.....I would give up all the bread, restraunts, whatever, to just feel good and enjoy my life again, and now I feel like I finally have that, a LIFE!!!!!!

Thanks to all who gave me advice! And here's some hope to those just starting out- it does get better, just try to focus on the positive when ever you can! :)

Lollie

That is so reassuring. We booked a vacation to the Dominican Republic before my daughter was diagnosed. She is 14 and I was nervous about what she could eat but putting a refrigerator in the room is a great idea. It is great to hear such positive feedback. It makes me feel so much better to know that it does get better!! Jackie4

Guest BERNESES

Lollie- That is so great! Now that's progress!

Patti- You take a vaction- you deserve one- it's your turn.

Guest nini

that is success! I remember my first vacation after dx, Last year for spring break we drove to Florida for a week, Usually in the past road trips always made me ill (go figure lots of gluten!) and I didn't ever want to go... would have to stop at every bathroom along the way, you know the drill... anyway, my Florida vacation was awesome too... I packed a cooler and a bag of snacks for in the car, when we got there we stocked up at Whole Foods and I ate at Outback, Bonefish Grill, Whole Foods salad bar, and my favorite Mexican Restaurant El Adobe with no problems at all! My daughter and I felt so good and so pampered the entire time we were there!

Becky6 Enthusiast

That is so great!! I am so glad you had a wonderful time!

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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!
    • MaryMJ
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    • 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
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