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New Diagnosis Of Celiac Disease, Just Out Of Hosp.

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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.



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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 @

I hope this helps! Good luck!


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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!



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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 understand. Poor thing, made doubly rough because 13 is a really hard age even in the best of times. OK, at 13 she should show the damage in the biopsies. I didn't know if she was 2 or 3 yrs. old & in those cases sometimes they just plain haven't lived long enough to be damaged where the biopsies pick it up - it can be so patchy then.  Gosh, I'm really feeling for her & you both and I so want to say take her off gluten the moment the endoscopy is over but I'm afraid to say that b/c I've seen some pretty weird things go on that you would never expect. Docs can be so uninformed! Please let us know how things turn out & send your daughter some hugs from me and tell her I believe her. Please let her know that most of us had been told by doctors they think it's all in our heads, didn't believe us, blew us off so we know exactly how she feels. Remind her her pedi believes her & he's been more helpful than the GI has.  Press the GI for 6-8 biopsies but a bare minimum of 6.  {{{{{{{{{{{{{{{{{{{{{{HUGS}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}
    • I have seen articles linking celiac to Barretts and esophagitis.  I've actually been subtly hinting to my boyfriend to get tested for celiac as well because he has some strange Autoimmune arthritis as well as Barrett's  and some white spots on brain MRI Not MS). One of the articles I read on Celiac and Barrett's actually suggested that most of the patient did not have actual acid reflux symptoms. Not sure if you ever did antibody testing for celiac, but sounds like you certainly want to avoid gluten. 
    • Ahh good point! She is 13 and has been miserable for over two years. It started with chronic hives. We have been to a dermatologist, and a allergist and they brushed it off to her seasonal allergies and now she has joint pain,bloating,constipation,fatigue,headaches just all around miserable. I just want answers quick. she is getting depressed and says she hates her life cause she doesn't think anyone believes her. It's heart breaking . I hope we get answer soon. Thanks for the advice I will keep her on gluten. She is just miserable and I figured the sooner she is off gluten the sooner she will feel better. 
    • Welllllllll, in this particular case it would be best to keep her on gluten until the results come back. The reason I say this is b/c this GI seems whacky. There's a chance you may need to go to a different GI & have the endoscopy redone. I was going to say get a new GI but since the endoscopy is on Monday then I would go forth with it rather than waiting the time it would take to get a new GI & schedule an endoscopy. This GI seems set that it's not celiac & when they get that in their brain it's usually pretty darn hard for them to admit they were wrong. My concern is that she won't take enough biopsies from the right places b/c she's either dumb about how many & where or letting her personal (already formed) opinion influence what she will do. The problem is that you can't be there in the OR with them standing on the GI's shoulders making her do the right thing. Not knowing your daughters age, the other concern is that there may not be "enough" damage just yet, it may be patchy, etc..... that with the mindset this doc has, she will poo poo the dx.  Let me say that it would be a travesty & wholly awful IF you had to put your daughter through another endoscopy but we know how very important it is for her to have an official, dyed in the wool dx. So I'm just trying to think down the line & prevent problems before they come up. I mean, this doc may not even take any biopsies. That sounds insane I realize, but really, it happens more often than you would think. I can't tell you the number of times we've had people come on here after having an endoscopy for celiac where the doc didn't take any biopsies b/c the doc is so stupid as to think they can see the damage & doesn't realize there MUST be biopsies! If you take her off gluten & heaven forbid, you have to end up putting her back on it to get further testing then chances are she's going to get much, much sicker when she's put back on gluten. That most often happens with us and I'm talking about radically sick. See, I'm basing all my thinking on the fact that despite ALL the positive celiac blood work, this dimwit doc doesn't think it's celiac & instead it's all related to the constipation. That is just so far out there, it's NUTS! She's flying in the face of hard evidence! Every test you listed was positive. I can't even begin to understand how this GI comes to her insane conclusion. THAT'S why I am so concerned. 
    • Thanks for your reply. That's what my husband and I thought too. She has a ton of symptoms that's fit celiac. Also I was going to start her gluten free diet after her biopsy on Monday cause the dr said the results take two weeks. Is there a reason I should keep her eating gluten until we get the results? Thanks for your help.
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