Please Help, Scared And Unsure

[Mandy Armfield Jennings]

Hello everyone. My name is Mandy and I am a 25 yr old happily married stay at home mom with a 17 month old. I am getting ready to go through testing for Celiac Disease. I wanted to get on here and tell you (celiac "survivors") my symptoms and story and see if you have any input or suggestions.

I have always had "bowl problems" but nothing significant in high school or college. A year into my marriage, my husband and i hit a very rough patch. He was a youth pastor at a church in our small town, and he was fired due to him finding out some inmoral things going on behind the scenes. We were mocked and chastised and lied about in this silly small town...and i began going through depression. Because of the deep depression I lost my job which was our sole income. Things got really hard..and I was very hurt and lonely. I began to gain weight very quickly but nothing had changed in my diet. I started having diarrhea 9 out of 10 times going to the restroom. Would have to go to the bathroom almost immediatley during most meals and sometimes in the middle of a meal. My mom would always say that I had IBS. In two years time I had gained 100 pounds (with not much of a diet change) and I am so lethargic and tired. For five years I have suffered from the severe diarrhea and abdominal pains. in 2008 I got pregnant. During my pregnancy i began to develop pimple like itchy blisters on my arms...only around my elbows and the top of my arms. They have left terrible scarring and 17 months after my son being born, I still have them terribly on my arms. I also in these 5 years have developed a good size "hump" on the back on my neck which drs are saying is early signs of osteoperosis and arthritus.

So there is my story. Im sorry its so long and drawn out but i need someone to listen and understand...i feel so lonely and afraid! My dr said she does not know much about celiac disease and she ordered me to try Gluten-Free diet and have a colonoscopy. but im reading around the internet that i need an endoscopy instead? PLEASE HELP!

Mandy

[psawyer]

Hi, Mandy, and welcome to the board.

The symptoms you describe are all consistent with celiac disease, but could have other origins.

You are correct that a colonoscopy can neither diagnose nor rule out celiac disease. However, in cases such as this, a colonoscopy is wise to ensure that there is not some other condition causing, or contributing to, your symptoms.

An endoscopy can be done at the same time as a colonoscopy. The prep requirements for the endoscopy are a subset of those for the colonoscopy. A positive biopsy showing damage to the villi is a conclusive diagnosis of celiac disease. But, if you are already on a gluten-free diet, the chances of a false negative increase significantly.

If what you have is, in fact, celiac disease, you have found a wonderful support resource right here.

[Wolicki]

Mandy

If your doctor is doing the Celiac panel blood test, you need to keep eating gluten, or you could get a false result. Same for the biopsy. Usually, you have your blood test, if it's positive, then the biopssy. If you have positive blood work, many believe that is enough for a diagnosis, and you can start the diet, strictly.

It is possible that you have gluten intolerance, which has the same symptoms, but will not show up on a blood test.

Keep reading here, you will learn lots and get a ton of support.

Janie

[mushroom]

  On 3/14/2010 at 5:04 PM, Wolicki said:

It is possible that you have gluten intolerance, which has the same symptoms, but will show up on a blood test.

Janie

I think Janie meant to say, "will NOT show up on a blood test."

[Wolicki]

  On 3/14/2010 at 7:43 PM, mushroom said:

I think Janie meant to say, "will NOT show up on a blood test."

THanks for catching that Neroli!

[reeetz]

Hi Mandy...

I just thought that I would put my input in on your situation. I agree with what everyone is saying. You do need to be eating gluten to have the blood test not screwed up. I also think a Colonoscopy is a good idea, but ask to see if you can get an edoscopy at the same time. The first doctor I went to said that he would "check" for Celiac disease during the colonoscopy. Umm...yeah...come to find out that is not possible.

I went to a new doctor who knew a lot more about Celiac. When asking about the colonoscopy and if it can detect Celiac...they said no. Not at all. They also did the blood test but it was after I was on the diet for 6 weeks and feeling so much better.

Just some advice, be assertive with your doctor. Let them know what you know and what you want done. It is your health.

[nutralady2001]

I would also have your thyroid gland checked and have these tests run

TSH

FREE T3

FREE T4

TgAb and TPO antibodies for Hashimoto's Disease, another autoimmune disease that kills the thyroid gland. I have both Hashimoto's Disease and Coeliac Disease as do a number of others here I believe.

iron including ferritin

Vitamin D

Vitamin B12

[Mandy Armfield Jennings]

Thank you all for your responses. I am going to call my dr today and request and endoscopy at the same time and also a blood test. I will let you all know the results when they come in. Thanks so much for your help.

[Brien]

It sounds like you may have both a hypothyroid issue and Celiacs - check it out with your Doctor.