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Testing ?

Guest momto3

By Guest momto3
in Celiac Disease Pre-Diagnosis, Testing & Symptoms

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Guest momto3
Guest momto3
Posted

Hello,

Ok to make a long story short - I went off gluten when i was nursing my son (he seem to have problems and we are still working on him ) I felt good, almost overnight , So i stayed off gluten even after i was no longer nursing. I am not 100% gluten-free because i did not think i had celiac disease, and was not to worried about cross contamination, so if I got a little no big deal right...but when i did get gluten ...i would have pain in stomach, my head hurts , my knees ..all the things that felt good gluten-free hurt or i felt like crap. Ok Well the last couple of months i have found out that I am Anemic, and my Vit D was down to a 11 (should be 70 -80) So my Dr is sending me to a GI, to check my stomach (note just started seeing this DR) .. Well being I have never been tested for celiac disease ... and they will be going down there ..i thought well why not ask them to check for celiac disease ..but I know i have been off Gluten for about 2 yrs .. but not 100% ..so I have gone back on it for over a month now , and oh my gosh... my stomach hurts all the time, and I feel so hungry, my head hurts , i feel tired, and my kids tell me I am one cranky mom!! So i guess my question is .. will a month be enough time for good test results , or should I just say the heck with it all, and go gluten-free again? I always feel like it might not be the gluten and I can go back on gluten ... ok wishful thinking i guess.

I just feel at loss at what to do. I have done a lot of ready about celiac disease , and all ...but was hoping for some really people to talk to about this. And get some others insight i guess... Thank you for reading!

PS - In August I did go 100% gluten-free, and started to loss a lot of weight (that is a good thing for me) and then went grain free and oh felt so so good ... but then came up anemic so I am so confused .

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nora-n Rookie
nora-n
Posted

Hi, I was gluten free because I was low carb. I did have a celiac test before that, which was negative.

After five weeks back on gluten (and feeling hungry all the time) I had a negative biopsy. They did not do any blood tests. I then got back the glutan ataxia and I had gotten back the burning DH, so I went totally gluten free afterwards.

Have they done more blood tests now?

My theory is, if you start testing positive, there will be some damage seen on the biopsies, and if the blood tests are not positive yet, there is doubt they find any, since they really try to make the blood tests correlate with biopsy results....

One month is not enough if you were totally gluten free but you say you did get some gluten. Hard to say.

Usually we say at least 6 weeks, better at least 3 months back on gluten.

Sometimes doctors will diagnose by symptoms, and maybe you can just talk to the doctor and ask what he thinks, with you having lots of symptoms and being hungry all the time, and anemic and low vitamin D

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Guest momto3
Guest momto3
Posted

Hi Thanks,

I have done no blood work at all. I have an appt with a GI today, oh in about 2 hr.

So it sounds like I might have to continue to eat the stuff if I want a more accurate test results . I will talk to the DR today about what to do. I really hate feeling like crap..I have 2 kids at home, a 4 yr old, and 15 yr old that need to be driven places... and some days I just cant think ..my body, and brain does not wake up until mid afternoon, and when I was grain free, and gluten free,I felt good.

Well thank you for some in site.

Hi, I was gluten free because I was low carb. I did have a celiac test before that, which was negative.

After five weeks back on gluten (and feeling hungry all the time) I had a negative biopsy. They did not do any blood tests. I then got back the glutan ataxia and I had gotten back the burning DH, so I went totally gluten free afterwards.

Have they done more blood tests now?

My theory is, if you start testing positive, there will be some damage seen on the biopsies, and if the blood tests are not positive yet, there is doubt they find any, since they really try to make the blood tests correlate with biopsy results....

One month is not enough if you were totally gluten free but you say you did get some gluten. Hard to say.

Usually we say at least 6 weeks, better at least 3 months back on gluten.

Sometimes doctors will diagnose by symptoms, and maybe you can just talk to the doctor and ask what he thinks, with you having lots of symptoms and being hungry all the time, and anemic and low vitamin D

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