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Confused

Breezy32600

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Breezy32600 Rookie
Breezy32600
Posted

Ok so I need some serious guidance. I will be 31 this year. Apparently I was diagnosed with Celiac Disease when I was about 3 years old. According to my father I was very ill, was in the hospital for about 2 months, and almost died because of it.

They also said that for an entire year I was only able to bananas. Yes I said bananas only.

I have always had stomach problems, I ate anything and everything. I was no where close to being on the Gluten Free Diet at all.

My parents did not control my diet either as they should have. Nor did they ever say you have Celiac Disease and this is something that will have for the rest of your life.

Well guess what I was not aware that I was still walking around with this at all.

Instead last week my stomach started to hurt so bad that I could not function. It was absolutely horibble.

My stomach was swelling up and suddenly I looked like was about 5 or 6 months pregnant.

My husband took me to the er that evening. The dr had a CT done of my abdomen. and of course nothing showed on the CT nor did anything come up with the blood work.

The dr said that she thought that maybe it was IBS. So I figured that I would deal with it like I dealt with everything else.

I spent all weekend in bed because of the pain.

I started to research IBS and came across Celiac. And well something about it just seemed to be too familiar.

I turned around and sent my father an email asking him if Celiac was what I was diagnosed with when I was very young. And his response "Yep, and it was very bad".

Well very encouraging words. So I wrote him back and said "Well dad it does not just go away......."

I stay tired, hurt all over, numbness in hands and feet, constipation, along with other things that I will not mention.

I feel like my life is suddenly turned upside down.

I have an appointment with a regular doctor on Monday. So I am anxious to see what he has to say about this. And I am wondering what kind of damage I have done to myself over the last 28 years or so.

Any help would great!

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ravenwoodglass Mentor
ravenwoodglass
Posted

I am so sorry this has happened to you. Don't be too hard on your parents, it used to be thought that celiac was a 'child's' disease and that they would outgrow it. We now know that does not happen although it can take awhile for symptoms to become severe again.

On the good side you now know what is going on and you have found a good place for info and support as you go into the gluten free life. If you want to have any celiac related testing do wait until after all testing is done before you start the diet. If you go gluten free before the tests it will result in a false negative.

Jana315 Apprentice
Jana315
Posted

Wow! Sounds like you've had quite an ordeal. It is good to know that you're now pinning it down. How was your appt? My recommendation would be to have your Dr (or another Celiac knowledgeable Dr) order the Celiac blood panel and get a biopsy - given your history, it will be good to get a base-line on the damage in your intestine now so you can monitor your improvement.

Are you gluten-free now? You've come to the right place to learn about Celiac - it is much more complicated than just "avoiding gluten" - esp. if you are symptomatic and very sensitive to it.

Breezy32600 Rookie
Breezy32600
Posted
  • Author
Wow! Sounds like you've had quite an ordeal. It is good to know that you're now pinning it down. How was your appt? My recommendation would be to have your Dr (or another Celiac knowledgeable Dr) order the Celiac blood panel and get a biopsy - given your history, it will be good to get a base-line on the damage in your intestine now so you can monitor your improvement.

Are you gluten-free now? You've come to the right place to learn about Celiac - it is much more complicated than just "avoiding gluten" - esp. if you are symptomatic and very sensitive to it.

No I have not gone to the doctor yet. My appointment is set for Monday July 27th. I am not sure if this doctor even knows what Celiac is. I know that I have quite the road in front of me though.

No I am not gluten free yet. I have not begun that. From what I have ready it says to not stop eating regular food until after the testing is done.

The really sad thing is that I got really bad about 2 years ago and started going to the doctor. Well they sent me to an OB/GYN. He felt that I needed to have a hysterectomy. I was having ALL of the SAME SYMPTOMS. Well I went through with the hysterectomy. I was not aware of the Celiac Disease then at all. Nor did anyone in my family think to say something. I had the surgery Feb. 08 luckily enough I have my 9 year old daughter. And I will have her tested also.

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