Celiac panic--please advise

[Harriet Vane]

Hi folks,

 

I have read the recent celiac threads with interest. I have further questions.

 

My sister was diagnosed a couple months ago with celiac. Prior to diagnosis she had her gallbladder removed. She was better for a short time, then progressively sicker and sicker until she was diagnosed with celiac. I don't know exactly what they did to arrive at that conclusion, but my understanding is that she had the full work-up and the diagnosis is "official." She has been off gluten for a couple months and is feeling remarkably better.

 

She is recommending that I get screened for celiac. I am wondering if I should do so or if I should just try going off gluten for 6 weeks and see how I do.

 

Both my ds and I are chronically anemic as well as vitamin D deficient. We have done many rounds of hematology testing on ds and have no idea why he is anemic (or me for that matter). I worry about the anemia a fair amount.

 

I have had difficulty losing weight despite a really healthy diet. Is that possibly celiac-related???

 

I have also had perimenopause-like changes in my cycle. I am 37. Could this be celiac-related?

 

I occasionally have light acid reflux but really not bad.

 

My ds had some blood tests for celiac. Here is what the doctor wrote:

 

--Testing for celiac disease negative

--Negative endomystal antibody

--+ transglutammane (sp???)

--normal immunoglobulin A

 

Should I have the blood tests for celiac?

 

Should I skip the blood tests and just go gluten-free for a while? One poster in the other thread mentioned how hard it is to get insurance after diagnosis. We do have excellent insurance--dh is an actuarial risk manager, and we have a PPO.

 

Should I get the blood tests and have both ds and I go gluten-free for a while?

 

Thank you for your help. I truly appreciate any advise you can offer.

[Jenny in Atl]

I guess it depends on if you are the kind of person who has to have a diagnosis or if you can experiment with things that might help you feel better. The chronic anemia would concern me though, even with a negative screening for Celiac (for ds). Have they ruled out other ideas with the two of you?

 

Many see living w/o gluten as a punishment (too hard to do unless they have to). If you don't need to know for sure, give it a try. It won't hurt you to eat gluten free for a while. I know a number of folks who do so for no other reason then it makes them feel better.

 

:grouphug:

[Harriet Vane]

I guess it depends on if you are the kind of person who has to have a diagnosis or if you can experiment with things that might help you feel better. The chronic anemia would concern me though, even with a negative screening for Celiac (for ds). Have they ruled out other ideas with the two of you?

 

Many see living w/o gluten as a punishment (too hard to do unless they have to). If you don't need to know for sure, give it a try. It won't hurt you to eat gluten free for a while. I know a number of folks who do so for no other reason then it makes them feel better.

 

:grouphug:

 

I am fine with going gluten-free for a while. I am questioning whether to get the blood screening first or not. I also question how effective being gluten-free will be if I do not presently feel sick. Some sources I have read suggest that you can be celiac without feeling sick???

[Jenny in Atl]

I am fine with going gluten-free for a while. I am questioning whether to get the blood screening first or not. I also question how effective being gluten-free will be if I do not presently feel sick. Some sources I have read suggest that you can be celiac without feeling sick???

 

My oldest had some symptoms, but they were very mild (came and went). If it was not for the diagnosis of my youngest, we would most likely never have found out. I know one gal who eats GF (does not have Celiac). She reports having more energy, lost of some weight, and feels less bloated. I would say do the blood test, but find out for sure about the insurance question. I would guard that if at all possible. We have awful insurance and it is a very scary way to live.

[bettyandbob]

I would get the blood screening before going GF. If you go GF you won't know for sure and may be more tempted to "cheat". Nutritional deficiencies are definitely an affect of celiac. Iron deficiency anemia was one problem my dd had before dx. After dx, nutritional testing showed serious deficiencies across the board for her.

[Caroline]

My dd4 was diagnosed with celiac last summer. We have since changed jobs and insurance, and there were no issues. DH works for a French company, and we essentially have free, excellent healthcare here in the states. But no one said anything about the celiac or high risk of juvenile diabetes. However, it is group insurance, not private, and I know that is different.

 

My daughter had no noticable symptoms, but now that she is gluten free I can see a difference. She is a nicer person. She is in a medical study about diabetes, and they tested for celiac.

[Tess in the Burbs]

I just got told I may have it last week. I went GF immediately. Already I feel better and I told my Dr I could care less about a test for it. I wasn't going to continue to feel like I did waiting for the appt. (Dr office hasn't called me yet to schedule and it's been a week!)

 

We purged the house and went for it. It's been interesting this week but ds and I aren't in the bathroom all day. It's enough proof for me.

 

I do want to do some delayed food sensitivity testing this summer to make sure we are eliminating everything we need to. Ds also has milk allergies.

 

I can't say if you should or not get the testing. If you feel the need for it, do it. But if you could try GF for a few months and see results would you ever want the test or consider yourself celiac on your own???

[LizzyBee]

We are in the midst of testing with my dd15. Her blood test was negative, so we are going forward with the colonoscopy and biopsy so that we can know for sure. The reason we want a definite answer is because I know she won't go and stay completely GF unless we know she has celiac. If she does have celiac disease but continues to eat some gluten, she will continue to damage her intestines and increase her risk of cancer.

[athena1277]

Hi folks,

 

I have read the recent celiac threads with interest. I have further questions.

 

My sister was diagnosed a couple months ago with celiac. Prior to diagnosis she had her gallbladder removed. She was better for a short time, then progressively sicker and sicker until she was diagnosed with celiac. I don't know exactly what they did to arrive at that conclusion, but my understanding is that she had the full work-up and the diagnosis is "official." She has been off gluten for a couple months and is feeling remarkably better.

 

She is recommending that I get screened for celiac. I am wondering if I should do so or if I should just try going off gluten for 6 weeks and see how I do.

 

Both my ds and I are chronically anemic as well as vitamin D deficient. We have done many rounds of hematology testing on ds and have no idea why he is anemic (or me for that matter). I worry about the anemia a fair amount.

 

I have had difficulty losing weight despite a really healthy diet. Is that possibly celiac-related???

 

I have also had perimenopause-like changes in my cycle. I am 37. Could this be celiac-related?

 

I occasionally have light acid reflux but really not bad.

 

My ds had some blood tests for celiac. Here is what the doctor wrote:

 

--Testing for celiac disease negative

--Negative endomystal antibody

--+ transglutammane (sp???)

--normal immunoglobulin A

 

Should I have the blood tests for celiac?

 

Should I skip the blood tests and just go gluten-free for a while? One poster in the other thread mentioned how hard it is to get insurance after diagnosis. We do have excellent insurance--dh is an actuarial risk manager, and we have a PPO.

 

Should I get the blood tests and have both ds and I go gluten-free for a while?

 

Thank you for your help. I truly appreciate any advise you can offer.

 

 

Please, please get tested before you try the diet. It's much better to suffer a bit now and get a firm diagnosis. If you start the diet now and want to know for sure later, you will have to go several months on a gluten diet to get correct test results.

[yarrow]

I didn't know that you had to be tested while still eating gluten. Then when I found out that my tests were negative because I had already been gluten-free for so long, I didn't think it was a big deal - gluten-free is gluten-free.

 

My doc pointed out that the only reason we may want to go back and try to retest (after re-introducing gluten) is to find out how much I need to avoid it. I don't eat gluten AT ALL but I handle it regularly. I put my hand into the flour bag baking for my family, I handle bread making them sandwiches, etc. If I'm truly celiac then I'm not being careful enough about cross-contamination. If I'm not celiac, then it's not an issue as long as I'm gf I feel better. But if I am celiac, then I'm damaging my body by my carelessness. Does that make sense?

[SilverMoon]

IMO to test or not boils down to how important is it to you that the words be written in your medical chart. I have two celiac kids, one officially dxed and one not. The undxed one is only three and a half years old, but at this point not having celiac in her chart hasn't affected anything. I can't think of one instance that my older ds's dx has been used to his advantage or disadvantage either. *shrug* Other than confirming the decision to keep him gluten free of course.

 

FWIW, we won't be getting the little one tested through the traditional channels. She was born into a gluten free house and had very obvious reactions when she ate gluten herself. There was no way I was putting her on gluten regularly just for a test that could only tell us she can't have gluten. We do plan to get the www.enterolab.com testing done on her, eventually.