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

[Guest lynnacim]

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

[VydorScope]

Bisopy is a poor way to test for Celiac, so I would not put any faith in those results.

There are a few testing options for you at this stage...

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.

2) You can make an appt with a GI and request the full blood panel for celiac disease. If you have NOT been eating a decent amount of gluten (Wheat, Barly, Rye, Malt, Oats and thier dervities) then this will give a false negative.

3) You can go truely 100% peferctly gluten-free. No cheating. See if your symptons improve. Give it at least a month or 2. Then "challange" by eating gluten and see if you get sick. If you do you have celiac disease, and the only treatment is gluten-free for life.

[VydorScope]

The endoscopy and biopsy are condsidered the "gold standard" for Celiac testing by the experts. Of course, nothing is perfect.

In America, yes SOME experts agree with that statement. Not everywhere, and not everyone. It is an outdated test that even in America is slowly (VERY) being regonized as such. Even a GI doc will tell you it can never rule out celiac disease it can only confirm a celiac disease diagonoses. If it is not postive, its results is meaningless. It is actually never "negative', it is merely "non-postive" which is a very big difference.

[rinne]

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.

Are you sure that you have cut all gluten out of your diet, soaps, shampoos, etc. and did you get new wooden spoons, new chopping board, teflon pans....? Do you eat foods with MSG in them? Are you taking supplements in gelcaps?

Your symptoms sound like me last winter. I have known for years that wheat was not good for me and in the past whenever I started to feel too bad, I didn't eat it generally, I would cut it out altogether. This past time it didn't work and I got really sick. I don't have a diagnosis but I have a sister with Celiac and after the Gastro suggested Celiac and I found this board I went completely gluten free. I saw an improvement but realized that I would have to cut out dairy too and once I did that I started to heal. It has only been since May that I have been gluten free and June dairy free other than accidental glutenings and it is a slow process but I no longer have the burning tongue or burping.

[Nantzie]

I basically did option #3. I had the blood tests - negative. Biopsy - negative. I had already noted on days that I stayed away from gluten, I didn't have any digestive issues, insomnia, anxiety, etc. (read my sig line for more...), so had planned on going gluten-free even after the biopsy.

Went gluten-free in late December, and haven't looked back since. Here's a post that I did talking about my decision to go gluten-free even before I had the biopsy. Open Original Shared Link

My regular doctor now says that she has SO many patients who have come in with all the symptoms of celiac, have negative tests, but go gluten-free anyway. She says that for the patients that respond favorably to the gluten-free diet, the response for every one of those patients have been immediate and life-changing. She now is telling her patients who come up negative on testing to go gluten free and see how they feel. She even joked that she was about ready to start a club for non-diagnostic, positive dietary response non-celiacs.

Since you have felt better on gluten-free diets in the past, you're probably in that category. There are a lot of us here who are biopsy negative and feeling 100x better gluten-free. So there's a lot of good company here.

Nancy

[VydorScope]

Hoepfull some moderator will move this to "Pre-Diagnosis, Testing & Symptoms"

[Guest lynnacim]

Are you sure that you have cut all gluten out of your diet, soaps, shampoos, etc. and did you get new wooden spoons, new chopping board, teflon pans....? Do you eat foods with MSG in them? Are you taking supplements in gelcaps?

Your symptoms sound like me last winter. I have known for years that wheat was not good for me and in the past whenever I started to feel too bad, I didn't eat it generally, I would cut it out altogether. This past time it didn't work and I got really sick. I don't have a diagnosis but I have a sister with Celiac and after the Gastro suggested Celiac and I found this board I went completely gluten free. I saw an improvement but realized that I would have to cut out dairy too and once I did that I started to heal. It has only been since May that I have been gluten free and June dairy free other than accidental glutenings and it is a slow process but I no longer have the burning tongue or burping.

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

[Guest Robbin]

I agree that the tests are not reliable. The biopsy may have been taken in an area that was not damaged, and your blood tests can be unreliable if you have deficiency of the antibodies, so listen to your own body and do not rely on tests. I highly recommend Enterolab if you can, although many people on here are dx by dietary response alone.

I was in a really bad situation with potassium depletion - it was making my heartbeat very irregular. My dr. told me at the time that I had the potassium levels of a person starving to death, although I was overweight . I think a lot of people do not realize just how important the health of your intestines are to the other vital organs in your body. I think it is vital that you go gluten free completely and don't look back. Life is more than eating gluten containing foods. You deserve to be free of this pain. Take care and keep us posted on your progress.

[penguin]

Most, if not all, Aveda products have gluten

[VydorScope]

Nantzie,

Biopsy was negative. Which I'm really grateful for because if I accidentally get glutened, it's just going to ruin the rest of my day, and not destroy my intestines.

Sorry to break it to you, but thats not true. Bisopies miss damage all the time. If you have celiac disease, you will get damage from gluten. How much is just a function of time and exposure...

[Guest lynnacim]

I agree that the tests are not reliable. The biopsy may have been taken in an area that was not damaged, and your blood tests can be unreliable if you have deficiency of the antibodies, so listen to your own body and do not rely on tests. I highly recommend Enterolab if you can, although many people on here are dx by dietary response alone.

I was in a really bad situation with potassium depletion - it was making my heartbeat very irregular. My dr. told me at the time that I had the potassium levels of a person starving to death, although I was overweight . I think a lot of people do not realize just how important the health of your intestines are to the other vital organs in your body. I think it is vital that you go gluten free completely and don't look back. Life is more than eating gluten containing foods. You deserve to be free of this pain. Take care and keep us posted on your progress.

Thanks for the support, Because I don't "officially' have the disease, I tend to think I can cheat with wheat, etc. I'm planning to get tested with Enterolab. Gosh, my fear is it will be negative and I'm without any answers. But i'm going to proceed. It has been ten years of rarely eating wheat so I hope the test is accurate. I know i'm getting gluten in other ways, but I eat an awful lot of gluten free products. Oh, by the way I also have a irregular heartbeat, magnesium helps and any caffeine makes it worse.

[Ursa Major]

I agree with the others. Forget about testing (other than maybe Enterolab Open Original Shared Link), and just go 100% gluten-free.

Mind you, you may want to go to your GP and ask him/her to test you for deficiencies. Vitamin D, K and B12, as well as Ferretin (iron), potassium, magnesium and calcium come to mind. That way you will KNOW where you need to supplement. I was low in Vitamin D, which is essential for the absorption of calcium and magnesium. So, all the supplementation of those two is useless, if you are low in Vitamin D.

Also, you might want to have your bone density checked, to make sure you don't have osteoporosis yet, especially because you've been magnesium deficient.

My heart was going crazy for years, and when I was tested last year (before figuring out the celiac disease) was found to be low in potassium. I was unable to tolerate any supplements at that time, and just ate lots of watermelon (I can't tolerate bananas, plus watermelon contains more potassium than bananas anyway) all summer. And despite having chronic diarrhea from May to September, my potassium levels were normal by October, when they were checked again.

[VydorScope]

If the biopsy and/or endoscope missed the damage, I would think that it is the fault of the doctor and/or technician performing the test. When I had mine, they did it in a number of areas of the small intestine. Even "mild" damage should show up, if they know what to look for. I really doubt that a fully competent gastroenterologist would make a misdiagnosis. The key word is "competent".

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.

[Ursa Major]

Funny - after my first endoscope (for Celiac), when I woke up, they told me that they saw the "flattening" of the villi. This was later confirmed when the biopsy results came back. I know that they used very state-of-the-art equipment to perform these tests.

Yes, you're right, if the damage is severe, and the villi are totally flattened, they can see it. But if the damage isn't as severe, they can't by just looking.

[penguin]

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.

OK

First - What goes for you and your doctor does not necessarily go for everybody. Not all doctors use the same equipment, and not all damage is visible through endoscope. If you have early damage, it affects the microvilli first, which cannot be seen on a camera, which is why there are biopsies taken.

Secondly - The small intestine is 22ft long, the endoscope only goes in 5 ft. While it is true that most damage occurs in the duodenum, it is not the case for all. Damage also is not uniform, and can be patchy. So if you have mild, patchy damage mostly in the lower part of the small intestine, your biopsies will likely be negative. Most doctors would tell you the same thing, mine did.

[CarlaB]

Bernice, for someone who has not been eating wheat for some time and has been avoiding gluten, the scope won't necessarily find damage. You are right that it is considered the gold standard, but what about those of us who discovered wheat made us sick and stopped eating it? There are other ways to test that don't require us to give up three months of our lives being really sick, then another several months trying to recover so that the doc can be comfortable with his diagnosis.

Not to mention, there are some like me who present all the celiac symptoms that are non-celiac gluten intolerant with two HLA DQ1 genes. The two genes make me ultra sensitive, give me all the symptoms, etc., but I do not technically have celiac disease. A place like Enterolab will pick that up while the conventional "gold standard" will only pick up celiac disease in an individual who has been eating gluten.

lynnacim I was three years off obvious wheat, except for the occassional "treat" (since I thought I had a mild wheat allergy not gluten-intolerace). I also was gluten-free for six months, then did a six-week gluten challenge for the conventional testing, then gluten-free for another two months. My Enterolab numbers were still very high. Until you're avoiding gluten very intentionally, you won't realize how insidious it is ... it's in EVERYTHING!!!

Chelsea is right, it's in your Aveda products.

[Lymetoo]

Hoepfull some moderator will move this to "Pre-Diagnosis, Testing & Symptoms"

I find this board very confusing to figure out where to post things. I'm sure it's just my Lyme brain or celiac fog. What I can't figure out is why ALL the boards are lumped together when you click on "view new posts"....am I right ? or even more confused than I thought??

[CarlaB]

OK

First - What goes for you and your doctor does not necessarily go for everybody. Not all doctors use the same equipment, and not all damage is visible through endoscope. If you have early damage, it affects the microvilli first, which cannot be seen on a camera, which is why there are biopsies taken.

Secondly - The small intestine is 22ft long, the endoscope only goes in 5 ft. While it is true that most damage occurs in the duodenum, it is not the case for all. Damage also is not uniform, and can be patchy. So if you have mild, patchy damage mostly in the lower part of the small intestine, your biopsies will likely be negative. Most doctors would tell you the same thing, mine did.

My ob/gyn, a well-seasoned, no-nonsense doc, which is why I like him, just did some blood work to see how I'm doing. I told him the saga of the past year, the negative tests, the positive with Enterolab, and his answer was that my dietary response has given me the clinical evidence I need. I do not need any further tests.

[jerseyangel]

Hoepfull some moderator will move this to "Pre-Diagnosis, Testing & Symptoms"

That is where it is, I believe I put it here myself. Although, maybe not, so many and I lose track Sometimes it just takes a little while for my brain to warm up in the morning!

Lymetoo--Just post where you think your thread will fit best. When a mod reads it, they will move it if need be. The new post page is just that, all the newest posts. If you go to the home page, you can check posts by the individual forum.

[VydorScope]

Bernice,

I am gald for you that the endscope was corret, and I ma gald your feeling better. I wont bother to aruge with you about the scope, the simple facts of teh case are clear enough, and bisopy is not a good test. Many many ppl here are living proof of that, and thankfully they do not share your blind faith in that test so that they to can feel better and heal.

[Ursa Major]

I find this board very confusing to figure out where to post things. I'm sure it's just my Lyme brain or celiac fog. What I can't figure out is why ALL the boards are lumped together when you click on "view new posts"....am I right ? or even more confused than I thought??

Well, it's okay if you post in the wrong topic, as moderators will fix it if necessary. Just give it some thought beforehand as to where to put your post.

For people coming here regularly, it's so much easier to just go to 'new posts' to see what has been happening in their absence. It shows which particular forum the post is in, so you can ignore the ones you aren't interested in. Plus, brand-new, as yet unpinned thread show up, which is very helpful in many ways. That way the new posts can get some answers before a moderator gets to reviewing them (and even though there are quite a few of us, there are times when none of us are on, of course). It also makes my job much easier as well, as I don't have to go to each board separately to find the new posts at the very end. Just checking new posts is much less tedious.

[Lymetoo]

Thanks, Ursula and Patti. Now I understand a little better. Now the challenge is to remember!!

[VydorScope]

That is where it is, I believe I put it here myself. Although, maybe not, so many and I lose track Sometimes it just takes a little while for my brain to warm up in the morning!

Lymetoo--Just post where you think your thread will fit best. When a mod reads it, they will move it if need be. The new post page is just that, all the newest posts. If you go to the home page, you can check posts by the individual forum.

Yes, and thank you for moving it after I posted asking you to. Your a very useful moderator

[jerseyangel]

Yes, and thank you for moving it after I posted asking you to. Your a very useful moderator

M-m-m, considering I didn't *see* your post regarding the thread until 1:35PM, I must have actually thought of it all by myself. It's good to be useful

[Guest lynnacim]

Bernice, for someone who has not been eating wheat for some time and has been avoiding gluten, the scope won't necessarily find damage. You are right that it is considered the gold standard, but what about those of us who discovered wheat made us sick and stopped eating it? There are other ways to test that don't require us to give up three months of our lives being really sick, then another several months trying to recover so that the doc can be comfortable with his diagnosis.

Not to mention, there are some like me who present all the celiac symptoms that are non-celiac gluten intolerant with two HLA DQ1 genes. The two genes make me ultra sensitive, give me all the symptoms, etc., but I do not technically have celiac disease. A place like Enterolab will pick that up while the conventional "gold standard" will only pick up celiac disease in an individual who has been eating gluten.

lynnacim I was three years off obvious wheat, except for the occassional "treat" (since I thought I had a mild wheat allergy not gluten-intolerace). I also was gluten-free for six months, then did a six-week gluten challenge for the conventional testing, then gluten-free for another two months. My Enterolab numbers were still very high. Until you're avoiding gluten very intentionally, you won't realize how insidious it is ... it's in EVERYTHING!!!

Chelsea is right, it's in your Aveda products.

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.