40 replies to this topic

[celiac3270]

It's completely about personal opinion. I think many would rather suffer for a few weeks and know for sure. Also, if you test negative for celiac and still have problems with gluten, you might be prompted to have other tests done that would result in problems with wheat, rye, and barley.

I think that because it's so life-altering and since you've already started eating gluten, I'd just finish it out so you know for sure, but I'm not qualified to make that decision for you. It should be based entirely on how you feel. I, personally, just wouldn't want to doubt the diagnosis throughout my life.

[Rikki Tikki]

I can only say from my own experience, but I think I would eat what the doctor said and go ahead and have the test. That way you will know for sure if you have it or not.
I remember about ten years before I was actually diagnosed with celiac disease a doctor had run a blood test and said well, the blood work shows a rare disease called celiac, but I'm sure you don't have it. He didn't check further and if he had maybe I wouldn't of suffered all those years. Maybe it wouldn't of damaged my body so much.
Just my thoughts, I would eat, and have "a big juicy cheeseburger with a bun for me," and then have the test. It's only a couple of weeks and then you will know. Try to hang in there, it will get better!

[KaitiUSA]

I would get the test done to see if you have it for sure. If you have it you then know you absolutely can't have certain things. If you don't have it then you may still want to stay away from it if they make you feel bad.. but if you have something then it doesn't matter as much as it would with Celiac. The big thing is you don't want something literally tearing your intestine to pieces. Just try to control the nausea and tummy aches as much as possible. Hang in there and good luck:)

[whimsygirl]

You mean you have had three tests and only ONE came back positive?! Okay, someone give me some thoughts here on this because I just got my first test result back today for the antibodies and it said they were nondetectible. I'm really frustrated about that because since I have been going gluten-free I have been starting to feel better. I realize this is only one test but I have a real problem thinking I sound like a hypocondriac. (like I won't go to the Dr. til I'm REALLY sick) And I'm not getting much support with this being the idea of what is wrong with me. My family thinks it's very odd to just SUDDENLY have such an extreme food allergy. Even though I've told them that it happens all the time. I keep having to remind them what I can't eat and they seem to just look at me like I'm really taking this a bit far.... you know to not have a Dr. said yes this is what it is.

[KaitiUSA]

Whimsygirl-Celiac is not an allergy it's an intolerance. If you have it , it has been with you for a while but you may have not realized it. Stressful events or things such as mono etc. can trigger the Celiac . When I was growing up and could eat anything. When I had mono, a few months later I was diagnosed with Celiac. My blood tests came back mixed. I had positives and negatives but they were able to tell it was in fact Celiac. Blood tests can come back negative when you really do in fact have Celiac. So growing up you could have had no symptoms but still could have had the effects of Celiac damaging you if you have it. If you know you feel better on the gluten-free diet stay that way. Do what makes your body feel better. Listen to your body.
I had to switch doctors 3 times until I found a really good doctor who then was able to pinpoint Celiac. Celiac is very underdiagnosed.
If everything you do(biopsies and blood tests) turns out negative you might want to consider allergy testing. You could have an allergy instead of Celiac.
Maybe if you tell your family what the consequences(increased chances of lupus, lymphoma, etc) of not following the gluten-free diet for a Celiac can be they would understand a bit more.
I had 2 blood tests done but my GI doctor also had me get a Prometheus lab test done(the 3rd test). Supposedly they are the only lab that tests for certain Celiac things. The only problem about this was about half was covered by insurance and we had to pay like 600 dollars. It tested for many things associate with celiac. Surprisingly some of the things they tested for turned out negative but the new thing they also test for along with other positive things was able to give me a diagnosis.

Good luck with everything and if I can help you in any way let me know

[judy05]

I had one positive (IGA) and genes were negative for celiac.
My Dr wanted me to go back on gluten, to prove a point,
and I tried but I get too sick. Same thing with dairy. My
intestines weren't damaged and biopsy was NEG but the
neurological symptoms were worse than the GI and I am
not going through that again, not for him, not for anyone.

[cdford]

The only one who can make that decision for you is you. All the rest of us can do is encourage you and share our thoughts.

It sounds as though you are doubting yourself enough to want to be absolutely certain. If you think you will second guess yourself for the next few months or years, go for the challenge. Some of the rest of us react so badly that we just cannot imagine choosing to do that. But you know what? That is our lives, not yours. You think it through and make the very best decision for your life, not ours.

Hopefully you will get a good answer soon and can put all of this worry behind you one way or the other.

[luvs2eat]

My doc said the same thing as yours did, cdford... he told me unequivocally that my blood work showed celiac disease and that I should immediately go gluten-free, which I did. He said that if I didn't see improvement, then, and only then, would he do an endoscopy. I was a gluten-free fanatic... and it still took a year for my system to get happy again.

[jknnej]

Kaiti,
Tell me more about this Prometheus test. Do you have to be eating gluten to test positive? I really don't think I can do this endoscopy. I just can't bear the thought of going back to gluten. Really, only people who've had continuous stomach aches for years like some of us can possibly understand how traumatic it is to eat stuff that makes you sick for 3 whole weeks. And don't even get me started on the recovery time! And all for what? The biospy could still come back negative....oh I just don't think I can do it.
I have been feeling SO much better since I went gluten-free. I have fibromyalgia-like symptoms occurring still, but you know what? They PALE in comparison to the stomach aches I used to have. I can deal with fibro...I don't think I can deal with eating gluten!
I hate to be such a baby but I just can't see how I'm supposted to eat it for 3 whole weeks......

[KaitiUSA]

jknnej-yes I think you have to be on gluten in order for the test to come back positive. My GI doctor is the one who ordered this test. If you go to Prometheuslabs.com and go to products and services...then go to diagnistic tools...the click Celiac disease serology. It will tell you what all it tests for. The lab is located in CA. I was told to keep eating gluten the week I was taking it. They have a # as well it is 888-423-5227.

Along with the celiac disease serology I had other Celiac determining tests done.
My GI doctor said it is a very good lab and are very knowledgable in celiac disease. My GI doctor is also very knowledgable in celiac disease which is a shock because I had 3 previous doctors that knew nothing about it. He told me that this lab is the only one that will test for certain things in celiac disease.

I know what it feels like to be on gluten:( I'm sorry you are going through this more. If I can be of any help let me know. good luck

[mela14]

i wouldn't be able to eat the gluten either. Things are just still so hard without it...imagine eating it again! I deal with firbro pain everyday along with a bunch of other things. Not eating gluten means on less ailment to deal with.

[catfish]

You mean you have had three tests and only ONE came back positive?! Okay, someone give me some thoughts here on this because I just got my first test result back today for the antibodies and it said they were nondetectible. I'm really frustrated about that because since I have been going gluten-free I have been starting to feel better.

Whimsygirl, this might be your problem; you said that you have been going gluten-free and the test has come back negative. If you are not ingesting gluten, the test will always come back negative. The antibodies will only be present if you are have been ingesting gluten. In order to have a valid test, you need to be consuming gluten regularly prior to getting your test.

Even then, it is common to be gluten intolerant and not have the tests all come back positive.

[whimsygirl]

Thank you for your thoughts on this, I've been so frustrated and confused. Since the test results came back negative my husband immediately thought this could NOT be what is wrong with me, even though I told him the Dr. and online said it could come back with a false negative. He keeps trying to push me to try gluten foods. I got soo upset about the fact that he isn't being supportive AND the fact that I worry that what if it isn't celiac disease and I still won't know what is making me feel so sick and I will look like some self diagnosing hypochondriac, that I ate some gluten foods. It had only been about a week or so that I've been very careful not to eat gluten even though I've been eliminating foods that made me feel REALLY sick for quite sometime. I didn't get as sick as I thought I would. I got nauseous on and off then went to bed, no diarrhea yet. Same the next day even though eating very little with gluten, guts were twisting all day on and off but nothing major. I'm still battling nausea on and off 2 days since ate gluten. ( 3 wheaties cookies and about 1/3 cup pasta) Could I have this mild of symptoms and still have celiac disease? Or would it have been worse? The diarrhea still hasn't come back. I know some of you say the worst symptoms come days later for you, could the worst consequences be still to come ? Sorry for details but frustrated.

[SharonF]

I think I may be doing a gluten challenge soon myself. Although I didn't have the horrible stomach aches for years that some of you describe, I did get diarrhea and just felt very tired.

I do want to make sure the diagnosis is accurate, though, like the OP said.

A question--do they do a colonoscopy/endoscopy, then have you do the gluten challenge, and then do the scopes again? Or is it just blood tests?

[catfish]

My symptoms are cumulative, that is to say;
If I eat one serving containing gluten, I won't feel very well for about a week. If I keep eating it, I will feel worse and worse, and for a longer time. I won't react immediately nor violently to it, it's more like a long-term poisoning effect.

The way that most Dr.s like to diagnose celiac is to do a biopsy with gluten, and then one without- and sometimes they will have you do a gluten challenge again and do another biopsy just to make sure. This way they can compare the results both with and without to see the difference. In my opinion that is some pretty intrusive testing, but hey, whatever it takes I guess. I was intrigued by my blood tests, but it was my personal results that have kept me off gluten. I personally don't need a biopsy (or two or three) to tell me that I feel a LOT better being gluten free.