Re-checks, Diet Compliance; When To, Who To See?

[maddycat]

Background: I was 'diagnosed' with celiac in August of 2006. Some of the dr's I saw knew what it was, some knew a bit more, but alas, my health plan is an HMO, so I didn't expect too much! My IGG and IGA came back slightly elevated in the equivocal range (did not have a "full panel" of blood work done and did not know that I should have until too late) and my dr. told me to eat gluten free while I waited to get in to see a GI dr...2 months later. Of course, I did not know that you couldn't eat gluten free then have a biopsy so, it was too late for me. I did not have a biopsy.

When I was diagnosed, I had just had my first child 3 months earlier and was breastfeeding full time. They ran numerous tests after diagnosis including a bone density scan (which cam back as positive for Osteopenia, but now I am wondering if my pregnancy and breastfeeding had effected this test result). They also checked vitamin levels via blood work, which mostly came back normal. The rhumatologist I met with told me to come back in two years to repeat the bone density scan and a general recheck.

What timeline for dr's is recommended? Should I see a dr now, to get things checked out, to check diet compliance, etc? I am also interested in getting genetic testing done since I wasn't able to have a biopsy- I think it would give me piece of mind. Which dr. should I see, my general practitioner, the rhumatologist or the GI?

Sorry, there are so many questions- thanks for reading, and helping!

Marcia

[JennyC]

I think it's best to get your blood work redone after 6-12 months. If you want genetic testing done I would go through Enterolab, it's pretty cheap as far as lab work goes--only $150. This way only you know the results.

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[maddycat]

If you want genetic testing done I would go through Enterolab, it's pretty cheap as far as lab work goes--only $150. This way only you know the results.

Thanks for the link. Do you recommend this so that it doesn't go on my record- for future insurance problems- if I did have a proper diagnosis? If I do it through my dr, does insurance generally cover gene testing, or not?

[disneyfan]

Background: I was 'diagnosed' with celiac in August of 2006. Some of the dr's I saw knew what it was, some knew a bit more, but alas, my health plan is an HMO, so I didn't expect too much! My IGG and IGA came back slightly elevated in the equivocal range (did not have a "full panel" of blood work done and did not know that I should have until too late) and my dr. told me to eat gluten free while I waited to get in to see a GI dr...2 months later. Of course, I did not know that you couldn't eat gluten free then have a biopsy so, it was too late for me. I did not have a biopsy.

When I was diagnosed, I had just had my first child 3 months earlier and was breastfeeding full time. They ran numerous tests after diagnosis including a bone density scan (which cam back as positive for Osteopenia, but now I am wondering if my pregnancy and breastfeeding had effected this test result). They also checked vitamin levels via blood work, which mostly came back normal. The rhumatologist I met with told me to come back in two years to repeat the bone density scan and a general recheck.

What timeline for dr's is recommended? Should I see a dr now, to get things checked out, to check diet compliance, etc? I am also interested in getting genetic testing done since I wasn't able to have a biopsy- I think it would give me piece of mind. Which dr. should I see, my general practitioner, the rhumatologist or the GI?

Sorry, there are so many questions- thanks for reading, and helping!

Marcia

Hopefully I can help with a couple of things because I have osteopenia too.

It is possible that while you were pregnant, you were losing calcium because your baby takes calcium from you. If you were not absorbing enough calcium because of malabsorption issues, that would explain the diagnosis of osteopenia. I had a positive IGG and Endomysial Antibody test, and did not have a biopsy. I did go to a GI, he told me it was all in my head. I decided to go gluten free on my own, and the improvements have been great. You should repeat the bone density test in August 08. You said they tested your vitamin levels but did they test for Vitamin D? Vitamin D is very important for osteopenia/osteoporosis. I have been on a high weekly dose for about a year to impove my bone density. Since I have been gluten free, my absorption has been so much better and my tests have all been normal.

I would try to find an endocrinologist for the osteopenia issues. Then, since you have the positive IGG, and if you are responding to a gluten free diet, I would not go back to eating gluten just to have a biopsy. Most of the time, a positive diet response is the biggest sign.

Good luck!