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Follow Ups Needed/screening?

livingglutenfree

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livingglutenfree Rookie
livingglutenfree
Posted

I was diagnosed (confirmed with biopsy) with Celiac at 14 months with the very classis symptoms. (although I am told even with all of the symptoms it took months and many trips to docotors and stays in hosipital.) I was placed on a challenge diet when I was 4 (I think). During the challenge my mom reported that I had very little outward symptoms but the biopsy confirmed damage was still being done in the intestine.

As a child/teenager I don't remember being able to identify if I ate something with gluten. There were of course cases where after the fact I knew I had been glutened (change of ingredients - labeling is much better than it was) However, I couldn't always identify when it happend based on symptoms.

My family doctors have never given me much direction on when, if and what I should be doing to follow up with my celiac. I did have a biopsy and bone density test done about 5 years ago. Against my doctors wishes I went and saw a gastro at the Mayo clinic. Everything checked out just fine. This was important for me to do before I chose to get pregnant - wanted to make sure my body was completely healthy.

What worries me is that I can't rely on outward symptoms to show me that I have accidently got gluten in my system. I follow a gluten-free diet as closely as I can, but as I have recently started reading posts on here I am finding out that there are many products whose ingredient lists appear gluten-free but people are getting sick from cross contamination during production.

So....should I be getting the anitbody test done every so often? Any other tests that I should be aware of?

Thanks

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cat3883 Explorer
cat3883
Posted

I was diagnosed in October 2008. My GI told me I will be tested every 6 months. For how long I dont know. I am sure it depends on my bloodwork.

Green Eyes Rookie
Green Eyes
Posted

I haven't figured out if not having outward symptoms is a blessing or a curse. I guess it is all in how you look at it.

I do not have a reaction with small amounts of gluten. I do get mild symptoms with larger amounts. I had to find a new GI doctor who would actually run the blood test ever so often. The first GI doctor just told me all I had to do was follow a gluten-free diet and I was fine. Of course she doesn't have a clue what that entails.

My new GI doctor was totally confused to why the first doctor would not work with me. He is concerned enough that he sent me for blood test (no results just yet) and a bone density test. I'm sure part of that was due to my age and not knowing how long I have had celiac.

I would suggest finding a doctor to run test as needed.

Best wishes on your family to be!!!

Jennifer

sbj Rookie
sbj
Posted
I was diagnosed in October 2008. My GI told me I will be tested every 6 months. For how long I dont know. I am sure it depends on my bloodwork.

My gastro also advised that we would re-do the bloodwork every 6 months. I'm also unsure about how long this will go on. My intern also suggested a follow-up bone density scan at 2 or 3 years to check on progress of osteopenia. Since I am asymptomatic I think it is really important to get the bloodwork done. This will tell you if you need to be more vigilant. I'd say that a clean biopsy is a good sign!

WW340 Rookie
WW340
Posted

I follow up with my GI every 6 mos. for bloodwork. He does not repeat the celiac tests, but he checks all my vitamin levels, liver enzymes, CBC, and thyroid. I also have bone density test every 2 years.

newlyfoundglutener Newbie
newlyfoundglutener
Posted

<_<

I am debating about the biopsy. Don't you have to be off the diet for a little while for the doctor to see the results? I really don't want to have any worse symptoms than I already do when I am "glutened" in some way.

Tracy

ravenwoodglass Mentor
ravenwoodglass
Posted
<_<

I am debating about the biopsy. Don't you have to be off the diet for a little while for the doctor to see the results? I really don't want to have any worse symptoms than I already do when I am "glutened" in some way.

Tracy

If you do choose to biopsy for diagnosis you need to go back on a full gluten diet for about 3 months. Even then there is always the risk of a false negative. If you are having a biopsy just to check if you are healing then a challenge is not needed.

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      By lizzie42 · Posted

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