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Newly Diagnosed-- Head Still Spinning!


queenofhearts

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queenofhearts Explorer

Hello folks,

I'm very glad to have found this forum! I was diagnosed this week with Celiac. I'll be fifty years old next week & have had nagging symptoms for many years-- diarrhea, anemia, fatigue, migraines, heavy periods, joint pain-- but never connected the dots until this winter I had a check-up that showed elevated liver enzymes. After a retest that showed no improvement, my doctor ordered a cat scan & when nothing explanatory showed up on that referred me to a specialist. The specialist took one look at my list of symptoms & suspected Celiac immediately. Biopsy confirmed it, so here I go into Gluten-Free World! At first I was horrified at the thought of no wheat because I absolutely love to bake, but after checking out 8 gluten-free cookbooks & trying a dozen recipes or so, I think I'll survive after all! The prospect of actually feeling well again is almost hard to believe, but I'll be very happy if it works!

My most immediate issue is eating out-- next week I'll be celebrating both birthday & wedding anniversary, & frankly I'd rather have someone else do the cooking! Any tips on how to stay safe at a restaurant?

Many thanks for being here!

Leah


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mouse Enthusiast

Welcome to the forum, but sorry that you have been diagnosed with Celiac. This is all doable. I eat out about 3 times a month and I have multiple food allergies to boot. There are several National chains with gluten-free menu's, but if you want something special, then pick your restarurant and call a few days before and talk to the manager. If he sounds like DUH, then pick another and call them. I have even eaten at Famous Sam's locally for lunch and the manager there knew all about Celiac and gluten. He was not going to be in the day we came and he left a detailed list with the mgr. that was going to be on. They cleaned a section of grill for me and even used a clean spatula. I never got sick. You have to stress the cross contamination issue. Enjoy your birthday and Anniversary.

Smunkeemom Enthusiast

If you have a restruant in mind, go a few days before hand and just look at the menu, think about what you might be able to eat there, then talk to the manager. I like to go right after lunch rush (about 2-3p) when they are slow, and sit down and talk to the manager. I tell them when I will be coming, and what I would like to eat, it gives them time to find out if they can make it gluten free for me. It's important to stress to them that even a crumb can make you sick. Usually they will go out of their way to accomodate you, there is one local restruant that even has special pans and utensils that are only for their celiac customers. I wouldn't expect that everywhere, but they will most places clean off a section of the grill and stuff like that, but only if you ask, and it's more likely to happen if you ask well in advance (a day or two) so they can brief the chef on duty.

Lisa Mentor

Leah:

Hello and Welcome here. I ha ve been doing this since last August. I can assure you this this is the best place to come with all your questions. I totally, would have been at a loss here without this site.

I am one year older than you, so we have similar issues in common, although, I am way passed the lady issues.

It truely is overwhelming in the beginning, but this too will pass. I would suggest that you read here on the posts as much as you can and keep a notebook by your computer. Write down products that you see are safe and questions that you may need to ask.

"Nini" , her post name, has a beginner list that would be wonderful for you to start with. She is one of our champions for the "newbees".

It truely does get better, and you will feel better as long as you stay gluten free. Please remember to check your shampoo, bath soap, toothpaste. lipstick....anything that can get into your mouth.

This is a very soft space to come. And, always, there are no stupid questions here, so ask away.

If you need beginner products, just list them, and we will name them as safe of not.

It will settle down, but the learning process begins now...Ask and we'll help. Lisa

queenofhearts Explorer

Thank you all so much for great suggestions & moral support! I feel less lost already. What a wonderful group!

I never would have thought to go into the restaurant a day or two ahead of time, but that is a great idea-- that way when it comes to the actual meal I won't be so stressed out, nor will the chef, I hope.

Lipstick & toothpaste & soap, oh my! So much to keep track of! Does anyone happen to know if CoverGirl Outlast lipstick is safe? Colgate toothpaste? Neutrogena shampoo? Dove soap?

I'm so grateful that you all are here-- it's all so new & strange, but with such wise & generous guides I feel much less anxious & confused.

Many thanks,

Leah

Lisa Mentor

Leah:

You're on a good start already. I didn't mean to get you freaked out.

Here's a start: Gluten Free

Dove Shampoo, Pantene, Vidal Sassoon and others Neutrog. Shampoo.

Dove Soap, Ivory, Carress, Dial

All Crest toothpaste, Arm & Hammer, Colgate (Ithingk)

Neutrog. most make-up and lip sticks and glosses, soaps

If you have a product of Neutrog. check the website on the package and write them, and they will send the the long list of their gluten free products.

Cover Girl lipstick are very tricky, as for me....some yes, some not. That's a pain. Alot of people use Basic Essentials, that are not available for me here.

Search here for Cosmetics, you will find more than I can give you now.

It will alll work out, and in a months time, you'll be an expert.

Hang in there, Lisa

queenofhearts Explorer

Oh, Lisa, don't worry about freaking me out! It's just that there's so much new information to absorb. This is very helpful; ignorance in this case is definitely NOT bliss. I want to know ALL the sneaky stuff from the get-go! I'd be much more freaked out if after months of living without real sourdough bread & all the other baddie-goodies, I found out I was still getting sick from my %#@ing lipstick!

Thanks so much,

Leah

Leah:

You're on a good start already. I didn't mean to get you freaked out.

Here's a start: Gluten Free

Dove Shampoo, Pantene, Vidal Sassoon and others Neutrog. Shampoo.

Dove Soap, Ivory, Carress, Dial

All Crest toothpaste, Arm & Hammer, Colgate (Ithingk)

Neutrog. most make-up and lip sticks and glosses, soaps

If you have a product of Neutrog. check the website on the package and write them, and they will send the the long list of their gluten free products.

Cover Girl lipstick are very tricky, as for me....some yes, some not. That's a pain. Alot of people use Basic Essentials, that are not available for me here.

Search here for Cosmetics, you will find more than I can give you now.

It will alll work out, and in a months time, you'll be an expert.

Hang in there, Lisa


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Smunkeemom Enthusiast
Thank you all so much for great suggestions & moral support! I feel less lost already. What a wonderful group!

I never would have thought to go into the restaurant a day or two ahead of time, but that is a great idea-- that way when it comes to the actual meal I won't be so stressed out, nor will the chef, I hope.

Lipstick & toothpaste & soap, oh my! So much to keep track of! Does anyone happen to know if CoverGirl Outlast lipstick is safe? Colgate toothpaste? Neutrogena shampoo? Dove soap?

I'm so grateful that you all are here-- it's all so new & strange, but with such wise & generous guides I feel much less anxious & confused.

Many thanks,

Leah

Open Original Shared Linkis a list of ingredients to look for in your shampoo, ect. You can print it out and look at everything you have. I threw out all my lipstick and started over, thinking it was probably cross contaminated (put it on after eating cereal in the morning) and also because I lost the packaging with the ingredients on it.

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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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