Celiac (Sprue) Disease Community
Severe Celiac Disease
About This Community:

This patient support community is for discussions relating to Celiac (Sprue) disease, anemia, behavioral changes and neurological issues, dental issues, diet and nutrition, infertility, gastrointestinal issues, gluten-free recipes, growth issues, infants and children with Celiac, pain management, and skin and dermatology issues.

Font Size:
A
A
A
Background:
Blank
Blank
Blank
Blank Blank

Severe Celiac Disease

Hi all,
I am a 16 year old girl with Celiac Disease. It is not new to me, for I have been diagnosed when I was 22 months old. For many people, they can eat a peice of wheat bread and maybe get a stomach ache, but for me, it is much much different. One crumb is all it takes. And, once that tiny but of gluten is ingested, its not pretty. I violently vomit for hours straight (my last reaction was 6 hours long!). So, I was just wondering if anyone else was severe as I was?
Thanks!
Related Discussions
6 Comments Post a Comment
Blank
1728693_tn?1332168862
My niece had the same issue. As a child she almost passed away it was so severe - once she adjusted her diet she got better and just graduated from University this past year!

From what I remember her telling me,l it seems the key is discipline, and when you're a teenager, I remember my niece having a tough time as she was the only one that had the gluten-free restriction.
Blank
Avatar_f_tn
Yes, discipline is most diffidently key!
Thanks, its re-assuring to know that others are as severe as me(:  
Blank
1794671_tn?1338798991
I have had it for a long time but I wasn't diagnosed until I was 17. I remember being young and eating ravioli and feeling so full and bloated. My mom would make me peanut butter and jelly, every day for lunch. She didn't know it wasn't her fault for giving it to me, but in all honestly they say that when you are allergic to someting it helps to implement it little by little to get your body used to it. NOT IN THIS CASE NOT WITH CELIAC DISEASE!!! however eating gluten all those years kinda did just that to me, ONLY ME, becase now when I eat something, because of lack of strong will, I get a little reaction. I know it doesn't make sense why I am sharing this with you, but since you were diagnosed at such a young age you were lucky enough to have parents that took care of you and had you tested and taken care of, therefore you are SUPER intolerant. This is a good sign!! This means that your body has not gone through very much negative exposure. WIth me, I have had a lot and it is not good for my body and I wish that I have had the ability to know earlier and been able to help my other ailmetns that i acquired from having celiac disease. Just know that having such a strong reaction is a blessing as well as a curse. You are strong and you can do it!
Blank
1340994_tn?1374197577
I guess in a way it is helpful to get quick feedback when you eat something wrong.  It is frustrating to wonder exactly when the illness began and how something got cross-contaminated.  
Blank
4998522_tn?1362106875
Hi there, I'm an 18 year old girl who has also been diagnosed with Celiac. i was diagnosed at 17 and have been very strict with my diet because I, too have severe reactions. Even after being on the diet I am still experiencing many different symptoms. I get very bloated, headaches often and fatigue. I believe that I have some sort of osteoporosis which might have came from malnutrition. Its frustrating most of the time and I'm not sure if a doctor will be able to do anything for me. When I ingest gluten I have severe and unbearable pains from my chest down to my pelvis and even throughout my back. I'm not sure what to do if this continues as I get older, it is not easy to live with!
Blank
Avatar_n_tn
I have 3 children with celiac disease, diagnosed at 14 (identical twins) and 10.  All of them had different symptoms.  One of my twins had an eating disorder at the time she was diagnosed and ended up in the hospital a month before 9th grade ended, at 67 lbs.  she spent 2 months in a hospital in our state where they fed her right and stabilized her, then 2 1/2 months in seattle childrens eating disorder program---they couldn't keep her gluten free.

Her twin sister ended up with an eating disorder her first year of college.  I think it has been a tough go for both of them being celiac and having eating disorders--they both tend to cheat on their diet. They are both married now.  My youngest with celiac just turned 18--she has always been good about her diet.

My husband and I and 8 of my 9 children all carry one of the main celiac genes, so we know that anyone of us could get celiac also at any time.

As a mother, I can tell you that I had several breakdowns when my girls were diagnosed--i wept and wished it was me instead of them.

Remember that is is more than just a matter of discipline, it is also a matter of making sure there is no cross contamination possiblilities.  When our girls were diagnosed, we emptied every cabinet and vacuumed out every crumb, we cooked all of our meals gluten free, but we did keep crackers, bread and ceral that was not gluten free for the other kids.
Blank
Post a Comment
To
Blank
Weight Tracker
Weight Tracker
Start Tracking Now
Celiac (Sprue) Disease Community Resources
RSS Expert Activity
469720_tn?1388149949
Blank
Abdominal Aortic Aneurysm-treatable... Blank
Oct 04 by Lee Kirksey, MDBlank
242532_tn?1269553979
Blank
The 3 Essentials to Ending Emotiona...
Sep 18 by Roger Gould, M.D.Blank
242532_tn?1269553979
Blank
Control Emotional Eating with this ...
Sep 04 by Roger Gould, M.D.Blank
Top Digestive Answerers
1340994_tn?1374197577
Blank
Caryopteris
Raleigh, NC
Avatar_f_tn
Blank
CalGal
CA