Not Diagnosed By Doctor; But On Diet Anyway...

[betterbelly]

Hello everyone. I'm sure I'm not the only one to post like this; but I'd love your opinion:

Since I was a teenager I have dealt with horrible stomach pains/gas/bloating sometimes dirrhea (DRIVE FAST AND GET HOME QUICK) after dinners. Countless Docs telling me I have IBS, I am fine; you have IBS...

So I thought; I'll go on the gluten free diet. AND NO MORE GAS! Amazing! for 6 weeks, then with a xmas dinner; with bread-crumbed fish; i got Diarrhea again; and now have it everday... but have continued eating lactose stuff.

OK here's the question:

Do I go back on Gluten for 3 months; then go get tested? what is involved in getting tested? Or do I just assume I have some sort of sensitivity to gluten and remain gluten free for eternity?

AND

Is it safe to NOT eat gluten?

PHew!! Sorry that was SOOO long; but I would really really love input THanks everyone!!

[Ursa Major]

You know you can't tolerate gluten. You might do well to eliminate dairy as well. Yes, it is perfectly safe not to eat gluten, as nobody needs it to be healthy! In fact, it possibly isn't really safe for anybody.

It is entirely your choice if you want to go back to eating gluten to be tested. I didn't do it, because I had no intentions of making myself sick again, just to prove something I already knew.

And your post wasn't too long, don't ever worry about that. And also, go ahead and ask away, no questions are stupid questions here. We'll be happy to answer to the best of our ability.

[tiffjake]

Welcome Better Belly! I am so glad that you are feeling better on a gluten free diet! I know that for ME, I went gluten-free before having tests done, and then had to eat gluten to have the blood tests, and it was so horrible to eat it again after not eating it for a while (as it sounds like you went through over the holidays). After my blood work I went gluten-free again and decided to not do the endoscopy, because I didn't want to eat gluten for 3 mos to have the test. It is a personal decision. I do not have "Celiac" listed in my medical records. That means that I might have to argue with docs in the future about my personal situation if I feel like it is related to Celiac, but it also means that my insurance will not be affected.

It really comes down to a personal decision. It depends on whether you want your records to show gluten intolerance or not. That is the bottom line. Either way, if you are gluten free, then you are gluten free! I hope you are feeling better from the Holiday eating soon!!!!

[betterbelly]

You know you can't tolerate gluten. You might do well to eliminate dairy as well. Yes, it is perfectly safe not to eat gluten, as nobody needs it to be healthy! In fact, it possibly isn't really safe for anybody.

It is entirely your choice if you want to go back to eating gluten to be tested. I didn't do it, because I had no intentions of making myself sick again, just to prove something I already knew.

And your post wasn't too long, don't ever worry about that. And also, go ahead and ask away, no questions are stupid questions here. We'll be happy to answer to the best of our ability.

Ursa!

Thank you for the support. My husband keeps asking " You're really not going to eat real pasta for the rest of your life?" And My reply is " If you want to feel like razor blades and or 5 tons of gas has just been pumped into your lower intestine... the answer is NO!"

I think I am sensitive... I'll cut out the lactose and see how it goes.

Thanks again for the reply!

[betterbelly]

Welcome Better Belly! I am so glad that you are feeling better on a gluten free diet! I know that for ME, I went gluten-free before having tests done, and then had to eat gluten to have the blood tests, and it was so horrible to eat it again after not eating it for a while (as it sounds like you went through over the holidays). After my blood work I went gluten-free again and decided to not do the endoscopy, because I didn't want to eat gluten for 3 mos to have the test. It is a personal decision. I do not have "Celiac" listed in my medical records. That means that I might have to argue with docs in the future about my personal situation if I feel like it is related to Celiac, but it also means that my insurance will not be affected.

It really comes down to a personal decision. It depends on whether you want your records to show gluten intolerance or not. That is the bottom line. Either way, if you are gluten free, then you are gluten free! I hope you are feeling better from the Holiday eating soon!!!!

Yah! Had 6 yogurt preztels yesterday (thinking I'd try the go back and get tested thing) of course my gut got bubbly and 'stopped up' feeling shortly thereafter... So glad I found this place and thanks for your reply!!!!!

[Nantzie]

There are so many people here without a diagnosis, but with strong improvement on the diet, that nobody really bats an eye about it here. If you feel better on the gluten-free diet, jump right in here.

Nancy

[Guest cassidy]

It is really your choice if you want to try to have the blood test, but please realize they aren't always accurate. You could also have gluten intolerance and not celiac.

Since you have found that gluten makes you feel bad, could you really eat it for 3 months? I couldn't do it. It has taken me a long time to feel this good and there is no way I would eat gluten on purpose, but if a diagnosis is important to you, then go for it.

Also, if you think about it, normal people shouldn't feel any different if they cut gluten out because it doesn't bother them. So, if you do feel different, then you have a problem with gluten. Does it really matter if you have celiac, gluten intolerance, or sensitivity as long as you have found a way to get yourself out of pain?

[Canadian Karen]

Official diagnoses mean nothing here.... Considering the lack of knowledge from the medical community about celiac disease/gluten intolerance, it's not surprising most people find their own answers..... Our belief is that the "gold standard" for diagnosis is a positive dietary response....

Also, quite often, once you have been off of gluten for awhile and have had a chance to heal, eventually you will be able to tolerate milk again..... The part of our intestines that digest the milk are right at the tip of the villi, and when the villi are gone, that's when we can't tolerate milk. But once the damage is repaired and the villi grow back, you can usually tolerate (digest) milk again....

Welcome to the board!

Karen

[rez]

The test may still show postitive. I think a lot of people think that the evidence goes away immediately, and maybe for some it does. Others have trouble getting a NORMAL blood test even after going gluten free. Don't sell yourself short. I would get the test, who knows you may get your answer for sure. My story w/ my son is a nightmare that I wish I would have done so differently. I didn't think his blood would show positive after being gluten free for a month so I fretted and argued with the doctor and then we went ahead and did it, but the lab didn't get enough blood for the tTg. A mess!! Now, a new doctor who's wonderful has been taking care of Thomas and he ran the blood test "just to see" after being gluten free for 4 months and it showed up POSITIVE. Only slightly elevated, but he's been off gluten for 4 months. I've read that Marsh I damage can take up to six months or a year to heal, and Marsh 4 can take up to two years to heal. A good GI will look for subtle signs. I would go for the testing for piece of mind. At least the blood test, it's a simple poke, and if it's negative, maybe it's because you went off gluten. There are other issues that can also resolve on a gluten-free diet. Crohn's for example improves. My case is different because it's my son and not myself. I want to be absolutely sure I'm doing the best thing I can for him. If it were myself, it would be different. I would hate for someone else to put off testing and then be kicking themselves like I am. He would have been scoped months ago and now we may have to do a gluten challenge. It's a huge deal to take gluten away. It also affects many, many social situations. Again, for me, I would know exactly how I felt, but I need to MAKE SURE for my son. Good luck w/ your decision!

[spunky]

I just went through wondering about all of this too.

For me, I went gluten free almost a year ago and it took several months to finally see improvement.

I was feeling really well there for a while, and then started doubting it WAS the gluten...feeling sort of lost with knowing what had been wrong all those years. I thought about challenging myself, and then finally came to my senses...realizing that I am feeling so GOOD now it might not be a good idea to go fiddling with it, plus I am used to eating gluten free and not really bothered so much by it.

For several months I wouldn't go out to eat at all, and then discovered I can do just fine eating anywhere where they have a big salad bar...I fill up on salads (I carry my own dressing), fruit, and baked potatoes if I can see them on the salad bar and pretty much pick out what I want...if I see crutons back behind black olives, I pass on the black olives, figuring they are likely to have crumbs...I mean, with a salad bar I can have pretty decent control over what I'm getting. So...by now I can eat out okay, am comfortable with changes in cooking, etc., so there's really not any temptation to go back to gluten.

As far as the diagnosing...I haven't consulted any doctors at all about my problems...they were ongoing for over a decade. From what I've read, the actual diagnosing of celiac seems barbaric to me...forcing people to eat something that makes them ill, then having to go through the endoscopy. I can see the value of a REAL diagnosis, for peace of mind and also for future reference if you need to prove that to somebody in a situation like being on a business trip, being hospitalized, or whatever. But they really need to come up with a nicer way to diagnose people...Enterolab sounds nicer, but I can't afford it myself. But if that became the unviersal diganostic tool for celiac or any other food intolerances or immune reactions, that would be much nicer.

Still, I've read the best diagnostic tool is your own experience. I think for me it seemed to be some temporary insanity or something, when after being sicker and sicker every day for the past 13 years, I got almost normal by 7 months into the gluten free diet, and then, at 10 months...began to doubt THAT was it. Okay...gotta be temporary insanity for me, because 3 well months after 13 sick, and getting worse all the time, years...speaks for itself!

[2boysmama]

There are so many people here without a diagnosis, but with strong improvement on the diet, that nobody really bats an eye about it here. If you feel better on the gluten-free diet, jump right in here.

Nancy

My DH and I are this way. Our older son was diagnosed as gluten sensitive through enterolabs. We discovered he carries two genes so we knew that we carried at least one gene each and decided to try the gluten-free diet and have had amazing results. I WILL NOT go back to gluten just to get an "official" diagnosis. I know that I feel a million times better off of it - that's all the proof I need.

[happygirl]

Welcome to the board! We are happy to have you here!

It is perfectly safe to not eat gluten. Don't worry

I had some issues with my testing. A doctor and I went head to head on it. He wanted to put me back on gluten (and I react violently and honestly would rather be tortured for 3 months than eat gluten!) and when it came down to it, he admitted that treatment would be the same if I was a "true" Celiac or "just" gluten intolerant. A strict gluten free diet.

Obviously, I didn't do the gluten challenge.

All that being said, I still think testing is a good starting method for those who have yet to start the diet. But for those who know they do better on a gluten-free diet..... I think positive dietary response is important!

Laura

[emcmaster]

Hi & welcome!

I have not had any tests or biopsies, but my immediate and drastic improvement on the gluten-free diet, as well as ability to suddenly digest dairy and fat (I hadn't been able to for 2 years) again 7 months after going gluten-free, is all the proof I need to know that I have celiac. That and the fact that my doctor thinks it's enough proof, too.

To reiterate what others have said: no one NEEDS gluten. IMO, if there's even a slight chance someone has celiac, they need to stay gluten-free.

Congrats to you on your success and how much better you're feeling! Isn't it wonderful?!?!

[SchnauzerMom]

I have never been diagnosed. I just know that when I eat gluten I feel bad, stomach pain, bloating, gas. When I stay away from it I feel great. That's enough evidence for me.

[CMCM]

I think there is a certain psychological benefit to having an actual, "real" diagnosis. However, if you feel lousy eating gluten and/or other things, and you feel better NOT eating it, then to a certain extent you have to decide if eating it is worth feeling bad. The sticky issue is whether or not eating gluten (in particular) is doing intestinal damage or not. People can apparently be gluten sensitive but the damage isn't necessarily being done. Or perhaps it is. That is the problem....do you want to risk that possibility? Increasingly, I feel I don't.

As for me, I can apparently be free of gluten and dairy for a number of months, then go back and have a little here and there and it doesn't bother me terribly much in general....at first. BUT.....the little bit here, little bit there adds up, and I find myself eating more and more, and eventually WHAM.....my digestive system gets wrecked again and I'm a mess. Going gluten/dairy free clears the symptoms up within a week or two, and then by a month I feel great. That's when temptation can set in to "cheat" here and there. When things get bad I swear I'll never eat the stuff again, but I seem to fall "off the wagon" a couple of times a year. I guess I'm glad I don't get horrible violent reactions to gluten the way some people do.......at least, not usually. But not having to worry about that can make one get careless after awhile. And I hate not knowing if damage is being done, although I'm not about to eat tons of gluten and undergo a biopsy. I'm just learning to be aware and smart about this whole thing. Mostly I can skip the gluten things, but the dairy is hardest for me.

[Adelle]

I'm too exhausted to read everyone's posts, so I'll just throw my 2 cents in

If having a doctor officially say "you have celiac disease" means something to you, then do it. If you don't care, don't. It's perfectly safe to eat gluten-free.

After 6 years and 10 doctors, I just didn't care if they agreed with me or not. I feel incredible when I stay gluten-free, so that's what I will stay.

Congrats on being aware of what your body is telling you!! Either way, I wish u tons of luck!

Oh ya and welcome to the board, this place is a lifesaver!!

[prinsessa]

As for me, I can apparently be free of gluten and dairy for a number of months, then go back and have a little here and there and it doesn't bother me terribly much in general....at first. BUT.....the little bit here, little bit there adds up, and I find myself eating more and more, and eventually WHAM.....my digestive system gets wrecked again and I'm a mess. Going gluten/dairy free clears the symptoms up within a week or two, and then by a month I feel great. That's when temptation can set in to "cheat" here and there. When things get bad I swear I'll never eat the stuff again, but I seem to fall "off the wagon" a couple of times a year. I guess I'm glad I don't get horrible violent reactions to gluten the way some people do.......at least, not usually. But not having to worry about that can make one get careless after awhile. And I hate not knowing if damage is being done, although I'm not about to eat tons of gluten and undergo a biopsy. I'm just learning to be aware and smart about this whole thing. Mostly I can skip the gluten things, but the dairy is hardest for me.

I do the same thing! After being glutened, I think "Gluten is evil! I will never eat it again!" Then I will go a couple of months of being gluten free. Then I will slip one way or the other (usually going out to eat.....can never be 100% sure of CC or going to eat at someone else's house....can't always trust when someone says something is gluten free). I never get violently ill, but I don't feel good if I'm not gluten free. It will sometimes take a couple of days to feel bad, so it is hard sometimes to figure out where the gluten is coming from.

[michelleglutenfree]

9 years ago I went through the same thing. Now I am gluten free all the time. My worst moment was when I could not make it home and my husband had to pull over on the highway for me!!!!!!

I understand to get tested for Celiac you must not take out gluten or it will alter the results. I was tested and found nothing. I just have an intollerance for gluten. I makes me very ill. MSG (which has gluten in it) is the worst. Every now and then I try eating gluten again, and I get ill, I have come to terms this is my life! Gluten is in so many things...most condiments have gluten in them, you have to read every label.......mixed spices have gluten and MSG in them. the doctors told me I have IbS too, untill my husband and I went on the atkins diet (cut out all bread and like items) and I got better. Check out WWW.GIG.org............they have much information on this site, I just found it, and it is helpful.

Hello everyone. I'm sure I'm not the only one to post like this; but I'd love your opinion:

Since I was a teenager I have dealt with horrible stomach pains/gas/bloating sometimes dirrhea (DRIVE FAST AND GET HOME QUICK) after dinners. Countless Docs telling me I have IBS, I am fine; you have IBS...

So I thought; I'll go on the gluten free diet. AND NO MORE GAS! Amazing! for 6 weeks, then with a xmas dinner; with bread-crumbed fish; i got Diarrhea again; and now have it everday... but have continued eating lactose stuff.

OK here's the question:

Do I go back on Gluten for 3 months; then go get tested? what is involved in getting tested? Or do I just assume I have some sort of sensitivity to gluten and remain gluten free for eternity?

AND

Is it safe to NOT eat gluten?

PHew!! Sorry that was SOOO long; but I would really really love input THanks everyone!!

[rez]

If you have Celiac, it's a serious life long condition and I highly suggest you go the proper route for diagnosis first. You can always just try the diet later. Think of how many people just think they can't tolerate dairy or are lactose intolerant. That's what I thought with my son. Since we've been doing the gluten challenge for the biopsy, he's not hardly reacting to the gluten at all. If I didn't have the positive tTG, I would have thought it was only dairy and kept feeding him gluten for who know's how long. You need to see inside. Think of all the people that don't have symptoms or have the number one symptom, anemia. They don't get sick when they eat gluten, or at least they don't know they do. After the past year of struggles we have had, my goal is to give people the tools to get an accurate diagnosis. Also, if you have children you will want to know if they need to be screened or your siblings and parents. Ask for a total IGA and a tTG. Good luck!