So My 1st Post Received No Replies, How About This..

[Canadian Karen]

Whatever - not all the villi was flattened, and my case was considered mild to moderate. I also had positive blood work.

I felt much better a few days after going gluten-free, and felt almost totally recovered after a year. I will have another endoscope exam in about a year and a half. But, they saw it with the 'scope, right in the clinic. They told me that their scope was better than the one used at a major hospital that I'd been to. I believe it!

This could very well be true. The point others are trying to get across is that when doctors take the biopsy, it is basically hit or miss.

Imagine this: Compare the patchy damage that is inside your intestines to a rash that is on someone's back. Now, if the doctor is blindfolded and just points the biopsy claw towards the back and takes a sample, it is basically hit or miss as to whether his is going to grab a piece of the rashy area. It is the same with the endoscopy, they grab bits and pieces here, but since the damage is in patchy areas, even if the biopsy shows negative, it would very well be because the doctor just didn't hit any damaged areas. That is why we stress that the more samples that are taken during the biopsy, the more likely it is to be accurate.....

Karen

[CarlaB]

Thanks, I'm finding that out. Obviously something that's hard to detect is going on. I have been very thin since age 14 despite a healthy appetite. If I had a diagnosis it would actually be nice. People are generally rude and usually think I have a eating disorder.(so I find out that's what they say behind my back) I'm use to it, I can gain a little now, so I know my absorption has improved over the years from just eliminating the wheat. How about clinique makeup?? I've used it for years, and I was symptom free a period of time when I first went off wheat.

I would email the company and ask. Since they are owned by Estee Lauder, they will probably do the same as Estee Lauder did, and that is email you a list of ingredients you need to watch for. Then you will need to read the products you use to see if they contain any of those ingredients.

[aprilh]

I have never been diagnosed but I have malabsorption,lots of burping, burning, diarrhea/constipation, and most lately the burning tongue. I have stayed away from wheat (mostly)for years. I had a heart attact(coma 3 days, very serious) at age 36(12 years ago)Doctors at Johns Hopkins were baffled, they figured out that I had a spasm in my artery that caused a blood clot. Sent me home and told me to stay on cardizem for rest of life. 1 year later a holistic physician ordered a whole blood mineral test that showed I had a major depletion of all minerals. Magnesium most likely caused the spasm. I stay on supplements but still have deficiencies. Another year later(still very sick) I read The Blood Type Diet. I eliminated wheat and milk and did really well for years. Then during a very stressful time (husband lost job etc)I began cheating more often, when I stopped I still felt bad,(constant burping).Then my tongue began burning, urinary problems, and a strong acid taste on tongue. I had a blood test come back negative for celiac, but I was wheat free and had begun eating alot of gluten free baking products(trying to gain weight) I obviously need some direction, do I get tested for allergies and by e-lab, maybe the burning and acid problem are related to allergies to new foods I'm consuming and not celiac disease. I live in St Petersburg/Sarasota area of Florida. Doctors I have seen don't even think of celiac disease when evaluating me. Recently I had an endoscopy and reminded the dr to test for celiac. I asked for the report but was not given one and was just told it was negative. I'm not sure if he tested wouldn't there be a biospy report? Help out there!! I don't want to have another heart attack but I can tell my mg is low due to muscle spasms, I need to get these bowels to absorb again... Thanks for any input

Magnelevures is a very good magnesium supplement that is very absorbable. I have to take it because I get low potassium too. And my eye won't stop twitching.

[Guest lynnacim]

Magnelevures is a very good magnesium supplement that is very absorbable. I have to take it because I get low potassium too. And my eye won't stop twitching.

Thanks, where do you get it?

[GravStars]

1) If you can afford it you can do the stool test with Entrolab, but its almost never covered by Insurance and runs several hundred dollars.

actually the stool test is only 100 bucks, the fuller panel which includes other tests is like 300-something. so (to the topic starter) it could be worth a hundred bucks to see if your body is or isn't having a reaction to gluten, that would indicate something one way or the other to you. i plan to use enterolabs for the stool test soon, and maybe follow up with the gene test, depending. anyway, good luck.

[Nic]

Sorry, but your not correct on that. The biopsy can very easly miss damage, and the skill of the doctor has nothing to do with it, since the damage is NOT visible durring the endoscopy. Like I said, even the most diehard of enscopy fans will tell you it can never rule out damage, or celiac disease. Its impossible with that test. All it can do is confirm a celiac disease dx. A non-postive bisopy tells you nothing at all.

I agree with Vincent. When my son was tested through endoscopy, he originally came back negative. The doc. explained that the sections biopsied may not have shown much damage. So the original lab read it as negative because the villi weren't flattened. Then the doc sent it to Columbia University where some of the experts are and they gave it a positive based on the presence of Lymphocytes (the first person at the first lab obviously missed this or did not see it as a problem). Which again brings us back to the negative endoscopy not being reliable (who is reading the test anyway?).

[rinne]

I take vitamis that are Vitamin Shoppe brand, some are gel caps but all are suppose to be gluten free. I haven't figured out the shampoo and make up yet.(I use Aveda and Clinique products) I'm just beginning total gluten free. I'm soooo happy to hear some one else had this burning tongue thing and that it will go away. I was afraid it may be the tapioca that is in a lot of guten free products. Someone suggested that is the reaction to tapioca.I don't drink milk but I cook with eggs and lots of butter. Maybe I need to cut this out as well. I have to keep weight on in some way.. Thanks

I am suspicious of gelcaps that are made from gelatin, we talked about this on the OMG thread and I quit taking my supplements in gelcaps because I had a burning pain that felt like I was being glutened after taking them. I plan on re-introducing them one by one once I am stable to see what I clearly react to but in the interim I am not taking them. I was reading an article last night about a woman who was ill as a result of radiation poisoning, she was talking about travelling to the Ukraine and the risk of illness as a result of eating and she was recommending a diet low on the food chain because the toxic effects of radiation are more concentrated in animals. When I think of the general diet that cattle have and the concentrations of toxins in them and imagine that our healthy supplements are packaged in boiled down cattle hooves it really makes me wonder.

I think someone mentioned the burning tongue in relation to a deficiency but now I can't remember, my burning tongue had gone away and I didn't pay attention, perhaps someone else remembers.

I can't eat eggs right now, nor butter, my husband has lost 10 pounds just eating gluten free with me at home and he says he can't imagine how people keep weight on with this diet. I know it is hard, I have now lost 40 pounds and yes some, maybe 25 pounds of it was fine to lose but not any more. What I have noticed though is that with the malabsorption even if I eat what would have put weight on me before it no longer does and I am realizing that the answer is to only eat foods which my body likes because other foods, gluten free or not, irritate me and the irritation prevents healing.

P.S. I love butter too.

[rinne]

From Dr. Peter H.R. Green's book, CELIAC DISEASE - A HIDDEN EPIDEMIC. "The intestinal biopsy is currently the gold standard for the diagnosis of celiac disease." This sentence is in bold in the hardcover book. Dr. Green is the director of the Celiac Disease Center at Columbia.

Bernice, thanks for the information about the book. Doctors may agree that the intestinal biopsy is the gold standard, they profit from the testing and the fact is if it takes more than one biopsy to diagnose Celiac they make twice the money, three times.....this is not to slam all doctors, I know there are many good ones. For me, I have decided that the pure gold standard is diet and my health is profitting from that.

[CarlaB]

From Dr. Peter H.R. Green's book, CELIAC DISEASE - A HIDDEN EPIDEMIC. "The intestinal biopsy is currently the gold standard for the diagnosis of celiac disease." This sentence is in bold in the hardcover book. Dr. Green is the director of the Celiac Disease Center at Columbia.

The pro-biopsy opinion is also held by Elaine Monarch, executive director/founder, Celiac Disease Foundation. There are quotes in Dr. Green's book from Elaine Monarch, as well. A year after my original diagnosis by blood test, endoscopy and biopsy, I went to the Celiac Disease Center at Columbia for more testing and followups. I highly recommend this book to people that would like further information.

If only we could all go to Colombia University for our biopsies to be done and analyzed! As for the rest of us, we simply are not guaranteed that they will do it correctly. Not to mention, some of us were already not eating gluten because we figured it out on our own through dietary response and just don't want to get really sick for months in a challenge. It may be the gold standard, and I can agree with that -- it definately is the most definitive diagnosis, and I wish I had that clarity in my own diagnosis -- but it's not practical in all cases. There is nothing that will work in all cases across the board. My doc said just yesterday that I needed to quit looking for clinical proof as my dietary response was the only clinical proof I needed.

[VydorScope]

A year after my original diagnosis by blood test, endoscopy and biopsy, I went to the Celiac Disease Center at Columbia for more testing and followups.

From Dr. Peter H.R. Green's book, CELIAC DISEASE - A HIDDEN EPIDEMIC. "The intestinal biopsy is currently the gold standard for the diagnosis of celiac disease." This sentence is in bold in the hardcover book. Dr. Green is the director of the Celiac Disease Center at Columbia. I highly recommend this book to people that would like further information.

The pro-biopsy opinion is also held by Elaine Monarch, executive director/founder, Celiac Disease Foundation. There are quotes in Dr. Green's book from Elaine Monarch, as well.

Bah, I guess I better try this one more time. I am worried about the damage you may do to the ppl that read here that do not have all the facts, only the partial pciture you continue to potray.

The reality is the biopsy does not, and can not ever rule out out celiac disease. It can not rule out damage. That is the facts, and if you ask any of the ppl you quote you will get that answer. I will state it agian for clarity, the bisopy can never ever rule out celiac disease it can only confirm it. Any GI worth his/her degree will tell you the same.

It does not take a huge leap of logic to see that since it can only CONFIRM and never rule out a celiac disease dx that it is a very much uneeded risk if your only concern is celiac disease.

Again, the bisopy is used here in America as a "gold" standard for confirming a celiac disease diagnoses, but that is not unversly true, we are a bit behind the ball in this reguard.

All you have to do is look at the very large number of ppl here to see that our itn the real world, the bisopy has failed in numerous cases to correctly dx celiac disease.

[ravenwoodglass]

Bah, I guess I better try this one more time. I am worried about the damage you may do to the ppl that read here that do not have all the facts, only the partial pciture you continue to potray.

The reality is the biopsy does not, and can not ever rule out out celiac disease. It can not rule out damage. That is the facts, and if you ask any of the ppl you quote you will get that answer. I will state it agian for clarity, the bisopy can never ever rule out celiac disease it can only confirm it. Any GI worth his/her degree will tell you the same.

It does not take a huge leap of logic to see that since it can only CONFIRM and never rule out a celiac disease dx that it is a very much uneeded risk if your only concern is celiac disease.

Again, the bisopy is used here in America as a "gold" standard for confirming a celiac disease diagnoses, but that is not unversly true, we are a bit behind the ball in this reguard.

All you have to do is look at the very large number of ppl here to see that our itn the real world, the bisopy has failed in numerous cases to correctly dx celiac disease.

I agree wholeheartedly with everything you have said. There are already a few (unfortunately only a few) that are coming to realize that the US Gold Standard should be called the 'Old Standard'. As stated we are very much behind the times with the diagnosis and testing that is done in this country for celiac. It misses far too many of us. If I had continued to have faith in the tests rather than dietary response I would be dead by now. My DD had a biopsy done that was positive then had it redone a year later after many months gluten-free and only a short challenge. Her biopsy was negative the second time and her big time Celiac specialist in a major city convinced her that her first biopsy was wrong, after all he didn't find any damage, right? Couldn't possibly have been because she had healed. My DD is gluten intolerant, period. The specialist was a fool with an excellent reputation that I look forward to sueing the next time she is hospitalized with a celiac related problem.

[rinne]

The specialist was a fool with an excellent reputation that I look forward to sueing the next time she is hospitalized with a celiac related problem.

Ravenwoodglass, I suspect that may be what is necessary to get Doctors and Insurance Companies to pay attention.

I think a real challenge to anyone with gluten intolerance is having to find the courage to trust yourself and your body rather than some supposed expert. It is wonderful if you find a good doctor but far too many are happy to prescribe drugs to suppress your symptoms and are not helpful in finding a diagnosis.

[aprilh]

Thanks, where do you get it?

You can order it online. However, you may want to research the ingredients. I just took some before bed and I am itchy! This is the first time I have noticed this.

Sorry took so long, didn't know you had responded to my post.

[tiredofdoctors]

It's pretty late and I don't know if I've read the entire thread correctly, so I'm sorry if I'm chiming in incorrectly --

lynnacim, I received an entire packet from my dietician about Freeda vitamins. They're gluten-, yeast-, blah blah blah free! I ordered the multivitamins, the CoQ10, and the sublingual B12. They were a little price-y, but not too bad. It's funny, though, and I've mentioned it before . . . they didn't have the strong "vitamin-y" smell that other vitamins I've purchased have. They have a surprisingly MILD smell.

Also, a LOT of Clinique products contain gluten. Bobbie Brown, MAC, Prescriptives, Clinique, L'oreal and Jane are all subsidiaries of Estee Lauder. (I think that's all of them, but I'm not sure . . . would have to look it up) They won't guarantee that their products are gluten-free, because they don't ask for ingredients from their suppliers.

I have a huge list of Neutrogena products that are gluten-free which was forwarded by the company. I HAVE gotten concerned, however, because they said "wheat free" at some point. Red flags went off pretty quickly.

I believe Beverly (BERNESES) said that Lumene products are gluten-free, and are only available at CVS. I tried one of their face lotions, and it felt GREAT -- light, not greasy, and no break-outs.

Bare Escentuals Bare Minerals make-ups are gluten-free, for the most part. Some members have mentioned individual lipsticks that contain gluten. Also, their face lotions contain gluten, as well as their mascaras. Don't know if the gluten molecules can permeate mucous membranes (i.e., inner eyelid, conjunctiva) so I'm not sure if that one is a big concern, unless you rub your eyes a lot . . . .

With regard to a diagnosis . . . if your body FEELS BETTER when you are gluten-free, it speaks volumes. Trust what your body is telling you. Remember, doctors only "practice" medicine . . . .