Jump to content
  • Sign Up
  • Join Our Community!

    Do you have questions about celiac disease or the gluten-free diet?

Rate this topic

Recommended Posts

I am having RAST testing tomorrow. Having had IBS for 10 years and 3 days after going gluten-free I was fine, I am wondering something.

If my RAST test does NOT show allergy to wheat, does that confirm Celiac? Thanks, Karen

Share this post


Link to post
Share on other sites
I am having RAST testing tomorrow. Having had IBS for 10 years and 3 days after going gluten-free I was fine, I am wondering something.

If my RAST test does NOT show allergy to wheat, does that confirm Celiac? Thanks, Karen

Hi Karen--No, if the RAST dosen't show an allergy to wheat, that does not tell you anything regarding Celiac. Since Celiac Disease is an autoimmune disease and not an allergy, the only tests that will confirm it are the Celiac blood panel and/or the biopsy of the small intestine. It is possible to have Celiac *and* a wheat allergy--I was allergy-tested for foods recently and was negative to wheat--but have diagnosed Celiac.

Share this post


Link to post
Share on other sites

Allergy testing does not pick up celiac. Celiac has its own panel that is done. I have a wheat allergy in addition to celiac so if you had a true allergy to wheat in addition then that would show up.

Share this post


Link to post
Share on other sites

Thanks, but I already know I have at least a wheat intolerance. What I want to know is if the Allergy test is negative (and I don't have a wheat allergy) does that make the likelihood of celiac greater?

Share this post


Link to post
Share on other sites
Thanks, but I already know I have at least a wheat intolerance. What I want to know is if the Allergy test is negative (and I don't have a wheat allergy) does that make the likelihood of celiac greater?

No, they aren't mutually exclusive. Celiac disease and wheat allergy aren't related. Celiac is an autoimmune disease like diabetes and a wheat allergy is well, an allergy. For example, a diabetic is intolerant to sugar and the body reacts to it, but the diabetic is not allergic to sugar. It's a poor analogy, but that's basically how it is with celiacs.

There are some people on here with both a wheat allergy and celiac, but most aren't allergic. There are plenty of people out there with a wheat allergy that aren't celiac, as well.

Share this post


Link to post
Share on other sites

Maybe I am not communicating well.

If I am gluten intolerant (I am definitely) and it isn't allergy.....is it celiac?

Share this post


Link to post
Share on other sites
Maybe I am not communicating well.

If I am gluten intolerant (I am definitely) and it isn't allergy.....is it celiac?

I'm not communicating well either :)

You can be gluten intolerant without being celiac.

A wheat allergy doesn't usually cause the same symptoms as an intolerance. If your RAST test comes back negative (and they aren't *that* accurate anyway) all it means is that you aren't allergic to wheat and that you are either gluten intolerant or celiac.

To medically rule in celiac, you have to have celiac blood tests done and/or have the biopsy.

Basically, regardless of the outcome of the allergy test, you could be celiac.

Share this post


Link to post
Share on other sites
Maybe I am not communicating well.

If I am gluten intolerant (I am definitely) and it isn't allergy.....is it celiac?

I think I understand.

Wheat bothers you, if you test neg. for an allergy then you want to know if that means (or means it's more likely) that the reason it bothers you is that your are intolerant or have celiac.

I however don't know the answer. I can say if wheat bothers you, then you probably shouldn't eat it LOL but you already know that.

It is possible for wheat to bother you and not to be gluten intolerant (I have a friend who can't eat wheat but does fine on barley) I think the only real way to see if you have celiac is to take the blood test, and go from there. Sorry if I am not much help.

Share this post


Link to post
Share on other sites

If wheat is causing you a problem and you are not allergic to wheat and you feel better not eating wheat, then you most likely are intolerant to it. The absence of an allergy does not fit the requirements for diagnosis of celiac. However, if you get sick when you eat it and you are not allergic to it, then it's pretty clear you are intolerant of it.

Same with gluten.

If you want a diagnosis, you have to do the testing before going gluten-free. If you are comfortable enough just knowing it makes you ill, then just stop eating it! You will find all types around here, those who are confirmed by biopsy to those who were responsive to diet and never had the test. You just need to figure out whether you personally need the diagnosis.

Personally, I have an autoimmune response to gluten. I had an inconclusive biopsy. Therefore, I am not technically celiac. In my opinion, if I had waited longer and continued to eat gluten, I believe I would have eventually had damage they could find. I consider finding damage to the villi to be a pretty progressed stage considering how sick I was without it (or maybe they just didn't find it) and considering how sick some here were when it was eventually discovered. Many people develop a lot of other problems by the time the doctor diagnosis celiac.

Share this post


Link to post
Share on other sites

You can be allergic to wheat as well as gluten intolerant. You can be gluten intolerant and not allergic to wheat, or allergic to wheat and not gluten intolerant. I am allergic to wheat and oats as well as gluten intolerant. If I eat wheat I get hives, asthma, throat swelling, and then later stomach aches and bowel problems.

Share this post


Link to post
Share on other sites

Oh boy, I guess that answers my question but not my problem.

I had IBS that got progressively worse over 10 years until I went gluten free, to the point where I became dehydrated and needed IV's. Three days after being gluten-free I had no IBS and have been fine since then. Unfortunately, I saw a Celiac specialist months after going gluten-free so it was too late to test for it. He agreed with me that I would have to remain gluten-free forever and that it didn't make sense to go back on gluten in order to be tested.

So I guess I will never really know. Thanks for your information!! Karen

Share this post


Link to post
Share on other sites
Oh boy, I guess that answers my question but not my problem.

I had IBS that got progressively worse over 10 years until I went gluten free, to the point where I became dehydrated and needed IV's. Three days after being gluten-free I had no IBS and have been fine since then. Unfortunately, I saw a Celiac specialist months after going gluten-free so it was too late to test for it. He agreed with me that I would have to remain gluten-free forever and that it didn't make sense to go back on gluten in order to be tested.

So I guess I will never really know. Thanks for your information!! Karen

a lot of people say that dietary response is the only way to go. My 3 year old has an official diagnosis (blood work and biopsy) my 4 year old (will be 5 in July) had inconclusive blood tests and pos. dietary response, and I had a pos. blood test and am just starting on the diet.

There are all kinds of celiacs, I don't have any problem saying that my 5 year old "has it" because looking at her blood tests, I don't see how they were "inconclusive" and since she got sick and then got better gluten free, I think it's safe to say she has a problem with gluten.

I think if you feel better that's great, and that's all anyone really needs to know.

but, that's just my own opinion.

Share this post


Link to post
Share on other sites

Saw my PCP yesterday and asked for Rast testing. He wanted to know why. I told him I probably have celiac and he said, "yes but you haven't been diagnosed". (I have been seen by a Celiac specialist in Boston who told me I probably did and shouldn't go back on gluten for a challenge). I told him to just write down gluten intolerance if he wasn't comfortable with celiac dx and that many people who are gluten intolerant have problems with other foods. After shrugging his shoulders like he doubted it, he did order it, but then wrote "patient requested" so I will probably end up paying instead of insurance. Why is it necessary to fight healthcare providers as well as one's disease? (rhetorical question). Karen

Share this post


Link to post
Share on other sites

errrrrrr :angry:

That makes me so mad. Doctors should realize that you know more about your body than they do. And if he is not a specialist you probably are more educated on your disease then he is. My sister is an RN and they taught her at school that the patient usually knows more abour their disease and their bodys than you do, so listen to them! I hate it when they act like know-it-alls. I went years with know-it-all doctors who would not test me for anything and insisted that my asthma, hives and eczema were not allergy related. Finally a smart doctor tested me and it turns out I am very allergic. Avoidance and immunotherapy have made my quality of life a lot better because of him. All these others docs would rather have me suffer an suffer and keep coming back to them, shelling out my money to treat the symptoms but not the cause. Don't let it phase you. If it comes back positive shove it in his face.

Share this post


Link to post
Share on other sites

That is what I couldn't understand. I am suffering with CFS and gluten intolerance, am disabled and home-bound. What happened to Drs. being diagnosticians and finding out what is wrong?

Share this post


Link to post
Share on other sites

Honestly, I haven't had positive intolerance tests, but I have had a positive allergy skin test. I consider this a minor thing, but it's generally what I tell people I have because they can understand it without a ton of explanation. I'm sure most of my problem is intolerance. I'm not about to eat wheat again with a confirmed allergy in order to test positive for an intolerance. I just decided not to get nitpicky. Either way I can't really eat wheat. My general doctor hasn't been very helpful, but my other specialists (allergist, dermatologist, psychiatrist) all acknowledge that the diet experiment should be enough evidence because it is a legitimate diagnostic tool.

Share this post


Link to post
Share on other sites
a lot of people say that dietary response is the only way to go. My 3 year old has an official diagnosis (blood work and biopsy) my 4 year old (will be 5 in July) had inconclusive blood tests and pos. dietary response, and I had a pos. blood test and am just starting on the diet.

There are all kinds of celiacs, I don't have any problem saying that my 5 year old "has it" because looking at her blood tests, I don't see how they were "inconclusive" and since she got sick and then got better gluten free, I think it's safe to say she has a problem with gluten.

I think if you feel better that's great, and that's all anyone really needs to know.

but, that's just my own opinion.

I justed wanted to say that I am one of those people with Non-celiac Gluten intolerance. The antibody test was negative and the biopsy taken 1 month after I went gluten free was negative (except for lymphocyte agregates). I was positive for both DQ2 and DQ8 and when I don't eat it I am fine and when I eat it I am sick. If you feel better then just keep doing it. My gastroenterologist said I could eat it for a month and try again, but why get sick again. Do you need the diagnosis for any special purpose or just to feel sure? If it won't change your insurance, disability, or help you in any way then don't make yourself sick just to get the doctor on board with the fact that you can't tolerate gluten. My doctors were not really on board but the genetic testing and the elimination diet experience got them to list it as Non-Celiac Gluten intolerance. It isn't easy to stick to the diet, but it sure feels great to stick to the diet. Hope you continue to have good health with the diet. J.P.

Share this post


Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.


×
×
  • Create New...