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New Diagnosis Of Celiac Disease, Just Out Of Hosp.

cyndeegreen

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cyndeegreen Newbie
cyndeegreen
Posted

Hello,

My name is Cindy. I just got out of the hospital on Tuesday. I was diagnosed with Celiac disease after a biopsy revealed why my body was going growing crazy.

I have lost a ton of weight and have been having problems keeping food "in". This after just two months ago I had a partial thyroidectomy due to a neoplasm and thyroiditis.

I'm wondering if there is a relationship between the two problems.

Regardless, I am grateful we've found out about the wheat allergy, and I'm ready to be wheat free.

I'd appreciate any suggestions on food recipes. There is an alarming amount of "flour" choices. I live in a very rural part of Kansas and specialty items need to be ordered on-line. Advice on steering clear of the pitfalls would be very, very welcome.

I was in the hospital for 5 days, but I am still tired and my stomach is still not very happy. It probably didn't help that for breakfast I was given cream of wheat (they though it was cream of rice!) and then the rice crispies were not gluten free....ugh... :o) Live and Learn!!!

Somedays, I wonder (as do my family and friends) if I'm EVER going to feel better.

Thanks for listening, and thank you for your help.

Cindy

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Guest dlf1021
Guest dlf1021
Posted

Cindy,

Congratulations on your diagnosis! Hopefully this will finally be a turning point for you and you will begin to feel better. I can definitely empathize with you on always seeming to feel ill- out of the 18 years of my life, I've been so ill with what the've always called "Irritable Bowel Syndrome" that I can't even remember a time in my life when I wasn't always feeling ill. After numerous doctors, an 8 day stay in the hospital, 4 endoscopies, a colonoscopy, removal of my gallbladder, and another two years of waiting, they FINALLY diagnosed gluten intolerance. After just two weeks on the diet, I already feel as though I've found the part of me that has been missing for the past 13 years.

To address your question...I've found a few sites with recipes, as well as some very good books, and a couple of online stores that may be of help to you...

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Excellent list of Gluten Free items

Open Original Shared Link

Open Original Shared Link

I hope this helps! Good luck!

cyndeegreen Newbie
cyndeegreen
Posted
  • Author

Deb,

WOW!!! Thank you so much for the links. I'm off to surf on them!

Is it common for celiacs to have to have their gallbladders removed? Mine was removed 2 years ago....

Thank you again for the well wishes and information!

Cindy

gf4life Enthusiast
gf4life
Posted

Hi Cindy,

Yes, it is common for Celiacs to have gallbladder disease and have their gallbladders removed. Soem doctors, if they find the celiac disease before they diagnose gallbladder disease, will wait a while before removing it to see if the gluten-free diet will help the gallbladder fix itself. Unfortunately for most of us, the gallbladder was removed before they found the celiac disease. Mine was removed 4 1/2 years ago, and I found out about Celiac about 2 1/2 years ago, finally diagnosed Nov. 2003 by Enterolab and a biopsy was just done last month. I wonder if I would have been able to keep my gallbladder if they had found the celiac disease earlier, since I have had symptoms for over 25 years...

Hi Deb,

Thanks for the great links. It is the most I've seen in one place for getting food ideas. I have only been gluten free (for good this time!) for 18 days. I am very knowledgable about the disease, but very new to the diet. The links are very helpful.

Mariann :)

Guest dlf1021
Guest dlf1021
Posted

Glad the links were helpful...I have no idea what I would do if it weren't for the internet. I never would have gotten diagnosed, that's for certain. I'm not sure how common it is for Celiacs to have their gallbladders removed--now that I've tested positive for gluten intolerance, I can't help but wonder if it didn't have something to do with it. I've only been gluten free for two weeks and even then only truly gluten free for a week or so--it's darn near impossible to stick to this diet unless you do specialty shopping, I tried--but I've already felt an amazing change.

I will continue to peruse and will let you know if I find anything else.

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      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
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      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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