Why Get Tested?

[Bostonkate]

Hi all,

I've been lurking for a couple of weeks now, ever since my doc said the word celiac. I was diagnosed with MS about two and a half yrs ago and Hashimotos about a year ago. Only couple of yrs in I am already on the "last resort" MS medications so I spent some time last summer searching out non-drugs alternatives. One thing I found was restricted diets. So I cut out everything. I was basically eating broccoli for a month. I was able to add back a bunch of stuff without issue - dairy, fruits, nightshades, meat, even oats but not gluten or corn. So I just totally avoided those things.

Fast forward six months, I went to see my GP and mentioned the food intolerances. He says he wants to test me for celiac, but in order to do that I have to eat gluten for the next few weeks. I dance home imagining all the cake, pizza, bagels and beer I will be eating over the month and actually map it out so I don't miss anything - after all, regardless of what the test says I'm done with gluten for life.

I am two weeks in and dreading every bite. I am experiencing lots of problems consistent with celiac/gluten intolerance and at this point, I'm wondering, is it worth getting the test at all? I emailed the doc and he said he'd move up the test a week, but I'm not entirely sure I'll make it, I am miserable.

Is there any benefit to getting a diagnosis one way or the other?

I am really glad you all are here. You seem like an awesome group of people and I look forward to your feedback!

Thanks,

Kate

[Jestgar]

Is there any benefit to getting a diagnosis one way or the other?

It is entirely up to you. Your diet is your business.

[costellosfriend]

Is there any benefit to getting a diagnosis one way or the other?

I am really glad you all are here. You seem like an awesome group of people and I look forward to your feedback!

Thanks,

Kate

If I were in your place, I wouldn't bother.

I've been eating a low-carb diet for several years. I had some problems I had lived with for years clear up on low-carb. There were several things that might have been the culprit in my previous health issues. One of those is gluten. I never cared enough to have it tested, because, well, who cares? I'm happy with my diet, and it's no one's business but my own.

Meantime I've learned that gluten is a possible source of my son's schizophrenic symptoms. A gluten free diet seems to be helping him. But I want to know for sure for two reasons: 1. he's hospitalized periodically and I'd like to be sure the hospitals provide him a gluten free diet if he has a gluten sensitivity and 2. the diet is expensive and he's living on disability, he can't afford to eat this way if it isn't necessary.

So I'm having myself tested. Why not him? Since he's on Medicare, I fear his doctor will refuse to run expensive tests when his only symptoms are psychiatric. If I turn out to have it, though, that may justify testing him.

So here I am on day 5 of eating gluten. So far I feel fine.

[mushroom]

Well, if you eat a lot of processed, gluten free foods, the diet is certainly expensive. But if you eat meat, veggies, fruits, nuts, rice and pasta (gluten free), it doesn't cost any more - only a little more for the pasta (and bread if you care to buy it, but you can bake your own - it is usually better ).

[eatmeat4good]

Welcome to the forum! It sounds like you just conducted your own testing. And the result is you are gluten intolerant. If you are that miserable already, I cannot imagine how you will get to the final test date unless it is that important to you.

You have already done a lot of homework and testing of your intolerances. You know what your body needs and you don't really need a Dr. to tell you to stop eating gluten. My body can't handle it either and it wasn't a Dr. who told me. There are a lot of us here who have self-diagnosed for that very reason.

It is up to you, but it sounds like you will do much better without gluten whether or not you test.

[costellosfriend]

Well, if you eat a lot of processed, gluten free foods, the diet is certainly expensive. But if you eat meat, veggies, fruits, nuts, rice and pasta (gluten free), it doesn't cost any more - only a little more for the pasta (and bread if you care to buy it, but you can bake your own - it is usually better ).

Yes, and I hope to move him in that direction, but right now he's still fairly psychotic. Currently he's largely refusing meat and eggs. And when I spent 10 bucks on some nuts he threw them away. Don't ask me why. I'm sure it made sense to him. He was adamant they be thrown away. When I rescued the container and said I'd eat it myself, he threw them away again, this time emptying the package into the trash so that I couldn't retrieve it. He said he was saving me from having to eat them. Like I said he's psychotic. Probably thought they were poisoned. That's the resaon I don't cook for him a lot - he believes his food is contaminated.

Luckily his thoughts are clearing up a bit. He just started using an antipsychotic again about a month and a half ago. We're going to take a gluten free cooking class together next week.

[costellosfriend]

It is up to you, but it sounds like you will do much better without gluten whether or not you test.

That's a good point. If the test comes back negative, you'll probably go back to the diet anyway.

Sometimes it's best not to have a diagnosis, like when you're looking for insurance.

[ravenwoodglass]

Even after all the misery of the challenge you could still have a false negative on testing. I am sure you will go back to the diet, strictly after the challenge is over. Your results from the challenge are definately positive. Be aware that it may take some time to recover from your gluten challenge but hopefully you will be feeling much better soon.

[RiceGuy]

I agree with what others have stated. But I'm biased against doctors since they never helped me at all.

Anyway, welcome to the board! So glad you've discovered one relatively simple way to improve your quality of life!

[Kate79]

I've struggled with that question. I've had the blood tests, but I haven't had the 'gold standard' biopsy - and I've made up my mind that I won't do it. It doesn't seem worth it - especially since tests can still come out negative - even the biopsy. You can also have many of the same symptoms as celiacs, but yet be 'just' gluten intolerant. There was a recent article from the University of Maryland celiac center on this. Anyway, I decided it would be too depressing to do a challenge and then have it come out negative, when I already know that gluten is the problem and it won't change anything in the end.

I haven't done it myself, but I know some people on the forums have gotten stool sample testing, which shows gluten antibodies for a much longer period than blood testing. So you could look into that if you want more of a definitive answer. I don't recall the name of the lab that does it, but I've seen several references to it on the forum so you could do a search for it.

Good luck!

[Bostonkate]

Thanks all for your feedback. I emailed the doc and told him I didn't want to get tested so he moved up the test again to Thursday. I can stand another day, and will get the test just to satisfy his curiosity. But can't wait to get this poison out of my system! I have decided that I won't do any follow up testing though, regardless of the result.

One thing I'm curious about though is the "strictness" of the diet of a celiac vs someone who is gluten intolerant. So if I am celiac do I have to make sure that everything is completely gluten-free even if small amounts don't make me sick? Same question if I am not celiac but gluten intolerant? Bread makes me sick, but but gravy doesn't.... Does gluten intolerance cause permanent damage the way celiac does?

You people rock! I love reading these forums and learning everybody's stories and experiences.

[CrunchyChristianMama]

There's a couple reasons I would want an accurate test.

First off, it will let you know how careful you need to be. Do you have to be hyper-vigilent about cross-contamination, etc.

Second, because Celiac is genetic, if you have children you will need to have the tested periodically for it. If you find out you don't have Celiac, then there's no need unless you see symptoms.

[Jestgar]

One thing I'm curious about though is the "strictness" of the diet of a celiac vs someone who is gluten intolerant. So if I am celiac do I have to make sure that everything is completely gluten-free even if small amounts don't make me sick? Same question if I am not celiac but gluten intolerant? Bread makes me sick, but but gravy doesn't.... Does gluten intolerance cause permanent damage the way celiac does?

Since there is no medically defined test for gluten intolerance, there is no answer to this question. Medicine (mainly) recognizes intestinal damage from gluten, because they can test for it. Many many people on this forum will tell you of the myriad changes that occurred when they stopped eating gluten. Were they being damaged? Since there are no tests, and the disease isn't recognized by most MDs, there is no answer to your questions.

My personal experience is that neuro damage to a long time to accumulate, and a long time to go away. I will never eat gluten, even if I have no reaction, just to avoid the long term neuro effects.

[jemms]

There's a couple reasons I would want an accurate test.

First off, it will let you know how careful you need to be. Do you have to be hyper-vigilent about cross-contamination, etc.

Second, because Celiac is genetic, if you have children you will need to have the tested periodically for it. If you find out you don't have Celiac, then there's no need unless you see symptoms.

This was my dilemma too..to test or not to test. I have decided to go ahead with it because my children could have Celiac's. It is important to me that I can give them as much accurate medical knowledge about their family as I can. Good Luck to you!!

[mushroom]

I personally don't think that celiac or gluten intolerance is a factor in deciding your diet. Because we don't know what gluten intolerance does, gluten intolerants should be just as careful as celiacs IMHO. There is just not enough known except that it is evil for a lot of people.

[ecf]

I think it is good that you are being tested after all. It may not seem important now since you just want to get the gluten the heck out of your system, but it will probably give you peace of mind in the long term to have a proper diagnosis of Celiac, or if the tests are negative, know that you are more likely gluten intolerant.

And like CrunchyChristianMama said, it's important to confirm or rule out Celiac for genetic reasons.

In terms of strictness, if you do test positive for Celiac you should not eat any gluten, even if you do not seem to react to small amounts. If you keep eating some gluten, it will continue to damage your intestines. People with untreated Celiac have higher rates of cancer, infertility, etc.

Like Jestgar said, if you are likely gluten intolerant instead it's more of a grey area. The medical community doesn't yet understand how gluten affects gluten intolerant people. But the major study published in BMC Medicine recently (Open Original Shared Link) showed that gluten definitely does affect gluten intolerant people in some way. Strictness of diet for the gluten intolerant is a personal choice, but given how sick many of us gluten intolerant people on the board were before the gluten-free diet, a lot of us avoid it entirely.

Hang in there!

[T.H.]

Damage to the gut can be done with no obvious symptoms appearing in an individual, so how bad we feel is actually not a good indicator of what damage is being done, unfortunately. Be much nicer if our bodies would give us a bit of a break and be more like computers, yes? Eat this, and react like that, and it's easily solved.

But, as people have said, the docs don't know how strict your should be. They really have no clue, if it's a negative test. And for you, personally? They REALLY don't know, because the neurological damage vs. how much gluten you eat has barely been studied.

From the few studies I've read, neurological damage/effects from gluten can occur even without gastrointestinal symptoms. As I recall, one study even found evidence of neurological symptoms persisting with eating gluten levels that weren't enough to cause villous atrophy.

I have been curious enough about this, though, to start asking questions of my own among the centers in the US who study Celiac Disease more. The last researcher I spoke to said pretty much what I've been discovering on my own: all studies on how much gluten is 'safe' for Celiacs to consume have only looked at gut damage. He didn't know of any studies that had looked at what amount of gluten was safe when it came to neurological damage. I'm waiting to hear back from another researcher who specializes in neurological research in Celiac Disease, so maybe something will turn up, but so far - it seems like we've got this thing too early for the doctors to know enough to help as completely. Kind of on our own, ya know?

Anecdotally, though, for myself and my daughter, we have neuro symptoms on lower-than-normal gluten levels. We have to eat more whole foods, and avoid the gluten pre-processed foods to avoid even more gluten levels than normal (gluten free still means minute traces of gluten. For most, this is fine. For us? Still too much sometimes.) I have met other folks with neuro issues who seem to have symptoms on lower levels of gluten as well. I don't know if that's simply coincidence, however, or if this is more common among those of us with neuro stuff, but there's a 'super sensitive' section of this forum for help with that, if you end up finding out that this applies to you, too, after all is said and done. :-)

[Bostonkate]

Really great info everybody! Test is tomorrow morning, I'll let you know how it all turns out. I "studied" for the test tonight with my favorite beer, macaroni and cheese and Oreo cookie ice cream. Tomorrow it's back to meat and veggies and I couldn't be happier.

[MsCurious]

I personally don't think that celiac or gluten intolerance is a factor in deciding your diet. Because we don't know what gluten intolerance does, gluten intolerants should be just as careful as celiacs IMHO. There is just not enough known except that it is evil for a lot of people.

I agree, Mushroom... if you have bad reaction to gluten, its toxic to you, whether the medical community has a "name" for it, and a test for the damage or not. If it does nasty things to you, chances are its not doing pretty things to your insides. Celiac positive people are fortunate in that they DO have an idea what happens to them when they eat gluten, but who knows about the intolerant/sensitive people without a medical name?

I would say, if it makes you sick, stay away from it 100%! Doctors will tell you if you're celiac positive, being 99% gluten free is NOT ENOUGH. I believe that is true for anyone who reacts badly to gluten. That's just my two cents.