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New Diagnosis Of Celiac Disease, Just Out Of Hosp.
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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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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...

Savory Plate- Recipes

Gluten Free Pantry- Online Shopping

Gluten Solutions- More Online Shopping

Excellent list of Gluten Free items

Live Journal Community dedicated to sharing recipes and information about Celiac

Gluten Free Recipe Book Found @ Borders.com

I hope this helps! Good luck!

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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

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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 :)

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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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    • I eat them with no issues and know several other Celiacs that eat them with no issue.
    • I am sorry that you are sick! i think you need to really adhere to a gluten free diet that consists of ONLY whole foods (no processed gluten-free foods) and do not go out to eat, until you start to see improvement.  Each tiny gluten exposure can set you back.  It sounds like you really became even more ill after the gluten challenge.   I was just anemic when diagnosed.  I waited seven weeks for my endoscopy due to work issues, so i took the time to consume lots of gluten.  Like a loaf of sourdough per day not to mention all the cakes, cookies that I loved.  (Okay, I just ate a few out of each package......)  by the end of seven weeks, I knew I had celiac disease.  I had a bloated stomach visible under my left rib cage, pinching when I bent over, indigestion, etc.  Not to mention some weird Fibro pain my my shoulders, tingly legs, etc.   Most resolved, but it took about two years. If you  ask for thyroid panel, be sure it includes testing for thyroid antibodies.   
    • My daughter, who is almost 21 and has celiac disease, was diagnosed with Epilepsy a year ago. Hindsight being 20/20, we realized she had been having seizure since she was a teenager but the random passing out and feelings of being 'out of it' were attributed to dehydration or poor nutrition and sleep habits during numerous trips to the emergency room. In our reading about Epilepsy, I have found some mention of celiac and gluten issue connections and even where a strict adherence to a gluten-free diet provided a lot of improve the with frequency and severity of seizures.  I would be interested to know if anyone else shares this experience.
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