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New To Celiac And Not Confirmed With A Diagnosis

erica33

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erica33 Rookie
erica33
Posted

Hi! I'm new to the site. I've been having problems for years and had a celiac blood test back in August. The drs. never said anything to me about my results and just kept telling me I had IBS. The pains and bloating of my stomach finally got to me, so I stopped in a health food store to try some cleansing products when I got talking to the owner, she recommended trying the gluten free diet and that IBS wasn't all that was going on, not with my stomach getting so big where I looked several months pregnant within minutes of eating sometimes.

After talking with her, I called the dr. to have them send me my results. I'm not quite sure how to take it, it says that the results do not exclude a diagnosis of celiac disease. Then also states that the IgA serological markers for celiac disease not detected. HLA allelic variants associated with celiac detected.

I've only been gluten free for 5 days, but I've already noticed a difference. No swelling, no pain, no faituge.

I was just curious if there is something else I should do test wise to confirm or if I should just continue with the diet and figure it out myself?

Thanks!!!

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Nantzie Collaborator
Nantzie
Posted

There are SO many people here, myself included, who have either negative tests or inconclusive tests. Not having a definite diagnosis isn't an issue here. Testing for celiac just isn't very good.

You're more than welcome to just kick off your shoes, make yourself comfy and join right in.

Nancy

larry mac Enthusiast
larry mac
Posted

Welcome e33,

Read all you can. Check out the links on the main page, there's a lot of good articles and info. Also, the other newbes posts, many times they are very similar to your case.

best regards, lm

rsm Newbie
rsm
Posted

My story is like yours, 25 years sick, 2 weeks gluten free and I feel good. I didn't know how bad I felt.

KJ11DU Newbie
KJ11DU
Posted

i'm new to this too and your symptoms sound so familiar. i've been having abdominal swelling and distention for over three years now after eating anything. i've also been told i had IBS. i recently have been to another GI doctor and he's running test to see if i have celiac. but regardless of what my test say i'm going on a gluten free diet after my endoscopy in april. i'm really hoping it works because i've just been miserable.

girlfromclare Apprentice
girlfromclare
Posted

As many people on this site would tell you, it is often difficult to diagnose celiac disease and lots and lots of people will have had completely negative blood tests. There are often false negative blood tests but if your results mentioned not being able to eliminate celiac disease that suggests to me that celiac is an issue and should be looked into. A biopsy would certainly tell you more but if you have already started going gluten free and thus started healing, there would be little point in a biopsy as it wouldnt be able to find anything. you need to be eating gluten for quite some time for it to show damage in the biopsy. But with the end results being the same i.e. a gluten free diet, and seeing as you feel immediately better without gluten, then I would continue if I were you. There are lots of celiac people on this board who have self diagnosed.

Good luck anyway

Liz (ireland)

erica33 Rookie
erica33
Posted
  • Author

Thank all of you soo much for your replies! :D It really makes me feel better knowing there are alot of people out there like me!! I will definately read up on alot of stuff. The first week has been a little difficult, but I'm sure it'll get better and just knowing that I feel better already makes me want to continue.

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