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Electra

Member Since 28 Nov 2006
Offline Last Active Feb 08 2008 07:59 AM
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Posts I've Made

In Topic: New To The Forum

10 January 2008 - 12:03 PM

Hi...I'm a 35 year old male, recently diagnosed with celiac's....well, they think. I should start from the beginning. October 2006 I went on a family vacation to Disney World for 10 days. On the second day, I started having horrible stomach pains. I tried to suck it up because we were at one of the parks and I didn't want to ruin everyones time but I couldn't and pretty much ended up on a bathroom floor rolled up in a ball it hurt so bad. My brother took me to the Emergency Room. After spending hours there, the doctor came in and told me I have diverticulitis. They would admit me for IV antibiotics. So, I spent 5 days in the hospital. When they let me out, I was feeling better. Still a little tender in the stomach, but not too bad. November 2006 I started having the pains again. Not as bad as Florida but close. I went to the ER at the hospital I work at. They admitted me for Diverticulitis for 7 days. They sent me home taking cipro and flagyl and dilauded for pain. I got into a gastroenterologist who did a cholonoscopy and a sigmoidoscopy. She told me there was nothing wrong with me. Yet, I was still on the antibiotics and pain meds. I found another gastroenterologist. He had me quit taking the antibiotics (I was on them for months). He did another colonoscopy and sigmoidoscopy. In the mean time, my stomach would be alright for a couple weeks then start hurting again. This doctor told me he thinks I may have Chron's. Put me on some medicine for it. October of 07 I was visiting family around Pittsburgh and started with the stomach pains again. I went to the ER there and they said it was diverticulitis. Gave me more antibiotics and pain meds. I refused to take the pain meds because I was scared of getting addicted....When I went off the dilauded after taking it for months, I went thru withdrawals that were horrible. So I went back to the doctor who did a small bowel endoscopy. They called a couple weeks ago and said they THINK I have Celiac Disease....I am so sick of them not knowing what it is....there is something going on and I just want to get it better. My stomach hasn't been too bad since maybe right before Xmas. Then this past week it started bothering me again....most of the time it just feels like there is a lot of pressure in it....then other times I get sharp pains. I thought I'd start the glutoen free diet this week...well, I wasn't prepared. I went to the grocery store and pretty much just walked up and down the isles for what seemed like forever....not knowing what i could get or what I am able to eat. I am just frustrated and sorry for rambling on but I honestly don't think I have Celiac's but I just don't know where to turn for help anymore. I don't know....Thank you for listening and any advice you can give me would be great.

If they think you have Celiac they should be trying to get you in for a biopsy very soon. If that is the case you may not want to stop eating gluten because you may heal up before the biopsy.

I had pain constantly before I was diagnosed with Celiac and I also was diagnosed with diverticulitis, and the pains I used to have are completely gone and I haven't had any of the diverticulitis symptoms since I've gone gluten free. I personally think I only had diveriticulitis symptoms because celiac was irritating my entire system and everything was getting weak.

I was also rushed to the ER once after purposely infecting myself with gluten because I had a nurve test coming up and I wanted to initiate symptoms, and those pains were so much different. I was doubled over in pain!! They couldn't find a diagnosis or cause, but the dr. said he thought it was ulsers which I don't buy because I've never had a problem with them before and I just know it was from the crackers I ate. The ER dr. also said if I did have celiac one cracker could initiate pains like that, so I'm now sure that's what it was.

Good Luck and I hope you get some answers soon!!

In Topic: Just Lost It

10 January 2008 - 10:59 AM

Oh I'm so very sorry. I don't even know what to say. Nothing can make up for what has just happened to you.

Blood tests will generally not show a positive if you were just eating gluten lightly.

Were you previously diagnosed with Celiac?

In Topic: Hoping Her Son Grows Out Of It

10 January 2008 - 09:29 AM

I wonder if some people are confusing Celiac with wheat allergies.

Allergies can be outgrown- but my age 4.5 the chances of that happening are much slimmer than they are in infants and toddlers.

Actually my allergist tells me that it is very rare for allergies to be outgrown. You are right when you say that they can, but most of the time they get more severe and not disappear.

My GI doctor told me a slew of things that the infomational packet he himself handed me conflicted. I have recently aquired a new GI doctor which I hope is better then the last. These are some of the things my GI and my children's PED GI have told me....

*Having two autoimmune difficiency diseases is RARE

*If you had not come in with a positive blood test I would have diagnosed you with IBS and sent you on your way

*Biopsies in children under 3 are very accurate

*If you have severely low B-12 levels (Pernicious Anemia) all you do is have one B-12 shot once a month

*You have to be underweight (due to malabsorbtion) to have Celiac (this one gets me the most because I and my mother were overweight and still had malabsorbtion, but for some reason if you don't look anorexic they don't even consider malabsorbtion)

*You have to have severe diareah to have celiac (this one was also untrue for us, I NEVER had problems with diarea, just soft stools)

*You have to be losing weight due to malabsorbtion to have Celiac (I gained weight dispite being sick all the time)

Something definitely needs to be done to dispell these myths and I really think GI doctors need to start being responsible for learning the appropriate facts about Celiac Disease. They should not be giving out false information like this to unsuspecting parents and families.

In Topic: Celiacs False-positives For Other Things

10 January 2008 - 08:57 AM

Hi,
Have been newly diagnosed with celiac disease. I also had a false-positive result for Hepatitis C. Was
wondering if this is common with celiac diseas.
Saoirse

False positives are pretty much unheard of, but I'm sure it's happened before. I'm also sure that it's more then extremely rare, and that it's only happened with ignorant(meaning uninformed or uneducated) doctors.

In Topic: I Think Im Cured !

10 January 2008 - 08:48 AM

I know it's dangerous to have this kind of thinking, but if jimbo006 is set on thinking he is cured then I think the only advice we can give is to have jimbo006 be closely monitored by a doctor. If you are determined to eat gluten again the "safest" way to do that is under a doctors supervision. You will need routine blood tests and probably biopsies every few months for at least a couple of years. Nothing may show up, but in order to make sure you are trying your best to stay healthy you owe it to yourself to at least keep testing in an attempt to see if your body is reacting. Sure this method isn't as safe as being gluten free, but it's sure better then just giving up a gluten free lifestyle and saying "I think I might be cured".

Good Luck to you and I really hope you are right in your belief that you were misdiagnosed