Do I Have Celiac Disease?
Posted 23 March 2004 - 04:02 AM
I am new to this board, and i hope I have found hope and experience in this forum. I really need support by others with celiac disease. Let Me tell you about me...I am 33 female my digstive history has been as such....
Malrotation of the colon...surgery to remove 9 inches of colon, IBS, GERD, and Hiatus Hernia. I have spent most of my llife on Prilosec or Nexium. I have bee anorexic for no apparent reason in my past and then came out of it. I am always distended after I eate...an I go through periods of symptoms that are unexplainable for years....a friend suggested I share these symptoms with other celiac disease patients to see if anyone experiences the symptoms that I have ongoing and periodically....Help i dunno how to pursue this agressively or anything. I have scheduled an appoinment with my Gastroenterologists for the 31st
My Symptoms (some present all the time others not);
constant diarhea mucus like and fatty- somedays worse than others
bloating and distention-always after I eat and a few hours later
irritated easily-I am usually so kind
loosing weight with out effort
blister or bumps on skin- year and a half ago it was severe and itchy on my upper arms I have scars today where I would scratch them they itched so much...now I get them only popping up here and there like on my forearms, head, back, and get sores on the corners of my mouth.
I have burning tongue and mouth periodically with no warning
I am TIRED all the time, and weak to want to do much
When I eat macaroni lately I really get so sick...the worst!
there is so much more...but can anyone help? Does this seem like I should demand some sort of test and if so what?
Posted 23 March 2004 - 05:13 AM
Posted 23 March 2004 - 11:36 AM
I had a lot of the same symptoms you mentioned before my diagnosis. Since you have not seen a GI doc yet at your first visit you should request him to run a "Celiac Panel". I think there are like 5 tests (not sure) but I do know about the: Tissue Transglutaminase IgA
Antigliadin Antibody Panel Gliadin AB IGG
Gliadin AB IgA
Also I suggest you write down all the symptoms you experience and try to keep a food diary to show him what foods seem to give you a problem.
I hope you feel better soon!
Posted 23 March 2004 - 02:21 PM
I can not wait til my appoinment
Posted 23 March 2004 - 02:36 PM
Yes, I agree that you have many of the traditional symptoms of Celiac. I had many of those same symptoms prior to my diagnosis. The key word in that sentence was "had"!
Please do not "demand" anything of your doctor! That may put him/her on the defensive and actually be counterproductive to your health. Instead, explain your symptoms and ask if a Celiac Panel blood test is warranted.
If the doctor says any one of your symptoms are not indicative of Celiac, or if you are missing a symptom that is indicative of Celiac, please mention that recent studies indicate there are no absolute symptoms of Celiac Disease. In fact, some recently diagnosed patients show no symptoms at all! The disease was found while looking for something else!
The University of Chicago recently had a free Celiac screening. If I remember correctly, they had several asymptomatic subjects test positive on the Celiac panel! You may want to research this before seeing your doctor, so you actually have some legitimate ammunition.
In all cases, try to be cooperative with your doctor. The fact that you have many of the symptoms does not automatically mean you have the disease. Your doctor is still the authority. Work with him/her to find the root cause. If, after reasonable time and effort, you feel your doctor is not cooperating, by all means, find a new doctor!
Posted 24 March 2004 - 07:09 AM
Posted 07 April 2004 - 07:20 AM
Where I disagree is in asking the doctor if they think a test for celiac disease is warranted. The symptoms you describe DO warrant a blood test. Some doctors will decide within a few seconds (literally) of walking in the room, what is going on with you. Some doctors will dismiss a patient's very valid concerns. If you bring them, in writing, a list of your symptoms and concerns, and research from medical journals (found here possibly) and request bloodwork be done, I think any reasonable doctor would order the tests.
My understanding of the test is that it is CRITICAL to get all 5 screening tests done, in order to get accurate results. If you bring info from one of the labs that does all 5 tests, you will probably get much better response from your doctor. Prometheus labs is one of the labs that does a comprehensive screening panel. It is also VERY important that you remain on a diet that contains gluten before your testing is done, in order to get accurate results.
Posted 07 April 2004 - 03:01 PM
Posted 13 April 2004 - 10:07 AM
I'm 22 and for the last two years have been suffering with digestion problems (like heartburn constipation diahrea etc) and more recently for the last 6 months i've been getting really sick with diahrea, feeling week, constipation, never finishing a bowel mouvement etc Each time I have diahrea I get a skin rash that starts on my hands and ends up everywhere..My skin becomes really red and itchy...it sometimes feels like it's on fire. Now I don't know what's wrong with me. I've been trying to figure out what could be wrong...Gluten, diary, eggs I seems like I can no longer digest anything and I don't know what to do. I'm afraid to go very far from home in case I get sick, I'm afriad I'll be at school by myself and get an "attack" and not be able to get home in time. I stoped eating gluten and it doesn't seem to be helping. I thought I might try eating gluten again to see if I felt worse or not....I just don't know what to do anymore...
Posted 13 April 2004 - 11:02 AM
The Lord bless you and keep you; the Lord make His face shine upon you and be gracious to you." Numbers 6:24-25
Posted 13 April 2004 - 07:56 PM
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