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Suezboss

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Suezboss Apprentice

Hi everyone.

I just had an upper endoscopy on Thursday. My Dr. was doing one to rule out everytying, because my former Dr. (who DIDN'T do ANY tests over the past year, and just kept giving me different meds, for IBS, GERD, Anti-Spazmals etc.. so I left her, and went to a new Dr. who scheduled the tests)... well, right when they woke me from the anastesia (sp?) he said, "well, we found someting that I wasn't expecting to find... your upper intestines are swollen, and it looks like Celiac Disease... Call me in a week for the results of the bi-opsy, and if we need to do blood tests, we'll go from there"

OK- now i'm freaking out, and I have been hysterical for days about it. I have been trying to cut back on Gluten, but from the research i've ben doing over the past few days, it seems that if he DOES have to do more tests (bloodwork) then I HAVE to have Gluten in my system for the results to be accurate.. is that correct? (I have been having stomach pains, and I just want them to go away at this point!)

Also, I am not handeling it very well... I am getting married in 18! days!!! and I feel so bad for my future husband, b/c of cousre this will effect him as well...

I guess I just need some support from people who know what i'm going trough and any advise/suggestions/support you can offer me on my NEW lifestyle change... I am hoping to have Concerete results by this week

Thanks for listning to me vent!

-Sue


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Jnkmnky Collaborator

You can get a blood test asap so that you can begin eating gluten free asap. Go today and insist that since they've suggested to you that this IS celiac, you need the blood drawn NOW, so that you may initiate a gluten free diet!!

KaitiUSA Enthusiast

If you just had a endoscopy come back positive for celiac then there is no need for blood tests. Getting an endoscopy is still the gold standard for diagnosis even though there are some blood tests that are very accurate.

Anyways, it may be overwhelming at first but it gets easier and I am sure it will not be a huge problem in the relationship if you 2 love each other.

It will all be ok :D It's good that they caught this now.

And yes you have to be on gluten during all testing to have accurate results

Suezboss Apprentice
If you just had a endoscopy come back positive for celiac then there is no need for blood tests. Getting an endoscopy is still the gold standard for diagnosis even though there are some blood tests that are very accurate.

Anyways, it may be overwhelming at first but it gets easier and I am sure it will not be a huge problem in the relationship if you 2 love each other.

It will all be ok :D It's good that they caught this now.

And yes you have to be on gluten during all testing to have accurate results

<{POST_SNAPBACK}>

Thanks.

I just think with everyting that is going on, i'm a bit overwhelmed at the moment. and the waiting until thursday is killing me.

Can I eat my wedding cake? What kind of flour is cake made out of?

I know i'm being stupid, but I don't know much about all this yet... :(

KaitiUSA Enthusiast

no you can't have the wedding cake. It's wheat flour. Most flour used in these mainstream products are wheat. You can find out alot of what you can and can't have on this site and ask your fiance to help and support you. I'm sure it will be ok.

https://www.celiac.com/st_main.html?p_catid=12

Here is a list of safe and forbidden ingredients. Gluten can be hidden under natural flavors, modified food starch, and ingredients like that.

There are some companies that are safe unless they say wheat,rye,barley,oats right on the label..they will not hide anything..that list of companies is on this site but if you can't find it let me know and I can email it to you or post it.

let me know if you need any help

Also, for your wedding cake, there are some places that will make a gluten free cake for you.

julie5914 Contributor

If you have celiac, no, you can't eat regular wedding cake. :( But, since you stil have 18 days, I doubt they have made your cake yet. Call them and ask them about it - you can replace the flour with gluten free flour. Pamela's makes all kinds of baking flours for cakes and things. I'm sure if you provide the flour and tell them where to substitute it won't be a problem or extra cost. Bake a little one at home to test how well it stays together, etc. Good idea if you or your fiance can taste the difference is to do bottom layer gluten-free (that is the layer you cut) middle layer gluten, and top layer gluten-free (since you save it). Or, you can do top layer gluten-free, all other layers gluten free, so the cutting of the cake for show, but have 2 slices gluten-free ready to feed each other (they both will have to be gluten-free because of contamination and avoiding confusion).

It is hard, and there is a little bit of greiving to deal with when your diet changes for life. You will have to be gluten-free on your honeymoon as well. Get some of those celiac restaurant cards and start getting used to having to ask waiters and people what is in the food. Read all over this site and everywhere on the internet. The more you know, the easier it is to follow. You will start feeling SO much better. It is a small price to pay to be gluten free for your wedding and honeymoon than to eat gluten and feel icky!

celiachap Apprentice
Good idea if you or your fiance can taste the difference is to do bottom layer gluten-free (that is the layer you cut) middle layer gluten, and top layer gluten-free (since you save it). Or, you can do top layer gluten-free, all other layers gluten free, so the cutting of the cake for show, but have 2 slices gluten-free ready to feed each other (they both will have to be gluten-free because of contamination and avoiding confusion).

It

<{POST_SNAPBACK}>

Maybe I'm not getting this right, but this seems to be a suggestion to make a cake with BOTH gluten and non-gluten ingrediants in different layers. I don't think that having ANY glutened cake underneath, or on top of, gluten-free cake is such a good idea. Again, maybe I misunderstood.


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julie5914 Contributor

Well, with my wedding cake there were little stands separating the teirs, so the cakes didn't touch, and you could tell by size which layer was which.

I meant to say to the top gluten-free and the rest with gluten with gluten-free pieces set aside that you can feed each other, btw. I accidentally said make the top gluten-free and then the rest gluten-free. Ideally you would have the whole thing gluten-free, but it depends on how the baker feels about that. Sometimes gluten-free stuff can be a little bit crumbly, and the last thing you want is your wedding cake collapsing. The above poster is right though, if you do one or two layers gluten-free and rest with gluten, you would have to be careful about contamination and make sure the baker knows to make the gluten-free stuff first.

Suezboss Apprentice
You will have to be gluten-free on your honeymoon as well. Get some of those celiac restaurant cards and start getting used to having to ask waiters and people what is in the food.

<{POST_SNAPBACK}>

Thanks.

What are Celiac restaurant cards?

celiac3270 Collaborator

A restaurant card is a card or piece of paper that you give to a waiter (for the chef) to explain your dietary restrictions and how your food must be repaired...

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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
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    • Jack Common
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