Hello, I'm new to this site, but wanted to respond; as it seems I'm in close to the same boat. I actually have insurance and have been tested for everything but celiac disease! Yeah, not fun! But I do have to say that about a year ago an endocrinologist (my last straw before going somewhere like Mayo)suggested that I try a gluten-free diet. I was just so excited that he wanted me to do something natural and no drugs; that I went for it. NOW, OMGoodness! I feel great! And when I cheat or don't pay close attention to what I eat, I pay! My dr. decided that it wasn't necessary for me to get diagnosed, because it be very hard to get insurance if I am. I think that really stinks (because of letting insurance control my life!), but I haven't pushed the issue. As not just for me, but for my family, I wonder if I shouldn't be tested? So I understand! I have to say though, I have NEVER had so much energy, skin so clear, no chronic pain and inflammation, and not gut/intestinal problems as I do now!!

I have been dealing with the same thing. My doctor gave me the blood test which came back positive for glutin sensitivity and wheat allergy but she said I didn't need the biopsy. Not knowing too much about it and wanting to avoid an invasive test, I agreed. Then I went home and read all of the articles, books, and websites that stated a person NEEDS to have the biopsy in order to have a proper Celiac diagnosis! And to have the biopsy you have to not be on a gluten-free diet. (which I had already started per doctors orders). I called to ask my doctor about it and found out she would be out of the office for the next several days. I too am feeling better even though it has only been a week. I was afraid of not taking it seriously enough to stick to the diet without an "official" diagnosis. Then I read something on a website that made me believe that the Celiac diagnosis only means that your gluten intolerance has already caused disease in the small intestine. Staying on the diet will prevent this. That changed my mind about needing the biopsy. I'm not sure if I have correct information. If not I hope someone who knows will correct me. I hope this helps.

Thank you for your candid responses! I now feel much better about not having a "formal" tested diagnosis. I appreciate the information about insurance difficulties as well. I agree about the Energy levels and I love not having Brain Fog!

I had the blood test and my doctor told me he thought I was one of several cases he's treated that he terms a "false negative" ie you still have a sensitivity to gluten but don't have enough of the antibody in your system at the time of the bloodtest to react to the antigen. I also feel so much better after only 2 weeks I almost don't know how to act. Stick with it!

PS to my earlier response. I want to make it clear also that I too have suffered through many tests: upper GI, lower GI, colonoscopy, etc, only to find all normal results. My symptoms led the doc to suspect Celiac but the blood test for it also came back normal. However, when gluten was eliminated from my diet, I felt like a new person, both physically and, maybe even more importantly, mentally. I guess my point is that I feel it's not so much the formal diagnosis that you have or how it was arrived upon, but what makes you feel your healthiest that is most important. If eating gluten free keeps you healthy it would be a huge mistake in my opinion to give that up just because you haven't been formally diagnosed.

I wouldn't bother with all of the other tests, like the biopsy and blood tests. If you're feeling better on the gluten free diet, stick with it. You may or may not have Celiac Disease. I, for instance, do better on a gluten free diet, not because I have Celiac Disease, but because I am allergic to wheat, oats, and barley. My allergies to these foods don't manifest in stereotypical symptoms like not being able to breathe, but are more GI related symptoms like Celiac Disease. Anyway, my point is, whether or not you have Celiac, if you're feeling better on that diet, stick with it and don't worry about trying to pay for all of those expensive tests to confirm that diagnosis.

jt... I have wondered about the allergy component as very often when I was cooking or baking (with wheat flours)my hands would get very itchy. Also, when I tried a sample of Origins products on my face, within a short time my skin felt thick, tight, and had the texture of sandpaper. It was very painful. When the cosmetic salesperson checked the label, it does contains wheat protein.

you should definitely get diagnosed. If cutting gluten out of your diet makes you feel great, then do it regardless of the test... but you could have other serious allergies or intolerances that should be medically addressed. Blood tests and a biopsy are needed to diagnoses you as a Celiac. The biggest reason some people are misdiagnosed is due to their avoidance of gluten. Gluten must be present in the system to test positive.

Hi soccermom! There is truly no point to getting the tests done...the results speak for themselves...the tests will only confirm that which you already know to be true which is, "YOU HAVE A GLUTEN ISSUE!!!" I am a nutritionist with celiac disease & type 1 diabetes and I have a duaghter aged 12 with the same two things...they did lab draws on her (which came back positive)and said that we needed to do the endoscope to confirm that...she was scared to death about that so I held off and went ahead and got the blood test myself ..that came back positive as did 3 other 2nd degree family members who were checked...so I asked the gastro what the real purpose of having that endoscope test was... to which she repled, "Well, it proves to the patient that they really have this disease..because some of them will go gluten free, feel better, get labs done a year later and see a negative for the antibodies (which by the way is what you WANT to see..because that means you have successfully removed all forms of gluten from your diet!) BUT then they think they are cured and will start back on gluten." Now based on my profession and what we also face with diabetes, we DO GET IT about the diet thing...we don't need a tube shoved down our throats to tell us we have to live gluten free forever..that's the same as thinking that as a diabetic, if you eat the right way and see a good sugar on your meter, then you can quit following your diet because you aren't diabetic anymore.... I recently read that the endoscope is not the "Gold standard of diagnosis" like it used to be either...that you truly may not need to have it to determine you have a gluten problem afterall...they are doing more with genetic testing actually but that costs dollars and even those with insurance are not guaranteed coverage for it but this is an evolving science and I think there WILL someday be a cheap way to determine this for sure... No matter what you do to find out you have a gluten issue, be it a blood draw, the endoscope, genetic testing or nothing at all other than see the symptoms exhibiting in yourself...the solution and course of treatment is the same...going gluten free! You did so, got a POSITVE change in health status..so that's all you need to do my friend! Forget the tests! They would only be necessary if there was a prescribed drug needed here (which there is not!) because the MD would need that test result to be able to provide the prescription OR if there were some problem that the doctor needed to probe further which would necessitate further testing to rule out or look into... Do NOT go off the diet! This is cause and effect! Stay gluten free and keep feeling healthy & well! Gabrielle

I have wondered the same thing. I was having digestive problems and my doctor suggested a gluten-free diet. It has helped tremendously and he said there was no point in doing further testing because the treatment would be the same. While I can see that is true, I wondered if getting a definitive diagnosis would be necessary in order for me to be certain that I stick to a very strict GF diet--including not using skin care products that contain gluten, etc. Currently I don't seem to have any issues with these, but could they be affecting my body without exhibiting any symptoms? I wonder whether my doctor really understands what going GF means anyway. I have thought that what I need to do is suggest that HE try a GF diet for a while. :)

I was told by my GI doc that it would be harder to get life insurance or at least it would cost more with the diagnosis of Celiac. And as for health insurance, I suspect that some policies could refuse to cover related costs due to it being a pre-existing condition. Now, if someone has gotten the diagnosis, that may really help them to stick to the diet, or help the doctor to pay better attention to future medical complaints. As for me, I never got the formal diagnosis. My doctor was having a difficult time diagnosing my symptoms, and I was becoming allergic to antibiotics and other products, as well as having frequent infections and getting sick all the time, having vertigo, low platelets, and autoimmune thyroid problems. He treated one thing at a time without seeing the bigger picture that perhaps these things were related. I began having chronic abdominal pain, weight loss, and recurrence of IBS symptoms, but still my doctor began to think I was a hypochondriac, and just a tired new mom. When I sought help from a naturopathic doc and a gluten free diet helped a lot, my regular doc went 6 months before doing bloodwork for celiac, and then that came back negative. After over 9 months gluten free a GI doc did a biopsy. It showed only stage one damage, but stage 4 is needed for the celiac diagnosis. So was I a recovering celiac at that point, or not celiac at all? I don't care. I feel so much better, and all my platelets are now higher than ever, and I don't get sick as much as before. And if I have accidentally eaten gluten without knowing it, I get really sick. The point is, a diagnosis can sometimes be hard to come by, and we have to decide when enough is enough, weigh our options, and move on toward being as healthy as possible. For me there is no going back because I get sick when I eat gluten, but I think my primary care still sees me as a healthy hypochondriac that is treating myself with a placebo. I think the diagnosis would bring about a more respectful relationship with him, or perhaps I should seek out a new doctor. But I have to let go of needing the doctor's approval for what I do in regards to my own health.

hi! I'm new to this sight, but I always wanted to chat with fellow gluten-free-ers. I was off gluten for six months (and feeling better) when I decided I wanted to go get tested. The dr. told me that even if everything comes back negetive, if I'm feeling better- I should stay off. I got the results-negetive to everything. I decided, so there, I cant to this anymore, and I know I dont have celiac, so I'm going to eat gluten. This was towards the end of the year and I was going to camp. We were going to tell the camp, but then I decided, I'm fine-so why should I bother them! I ate gluten for around two 1/2 weeks, and then it started affecting me. Problem, I was leaving to camp in 3 days. Bigger Problem: I live in New Jersey, and I was flying to some camp in a remote place in Indiana-the closest store was an hour away!! So I took rice cakes and corn chips to camp,and when I got there I told the director, and everything was (basicly) fine. But I learned my lesson- even if it doesn't show up in the bloodtest- if u r feeling better, don't make urself crazy, and eat gluten, cuz u might get the reaction when u dont want it!!!!

The tests can be very expensive, so without insurance, an arbitrary decision to have tests/bioposy/etc. is a significant decision. There are at least ten other diseases that can mimic celiac disease, but if it's something else, then a gluten-free diet alone will not resolve the symptoms for any length of time. If you are vigilant in sticking to a gluten-free lifestyle and symptoms return, then you have no option but to have the full battery of tests. As long as you're feeling well and under your doctor's care, then I would wait. It's a personal decision.

I just joined but wanted to chime in--I know it's several months since the last response. But here goes: For more then 1/2 my life I had complained of digestive problems, and suffered from agonizing stomach issues. I am now 40 and 4 years ago I had a son and I saw him suffering from the same stomach ailments that I have suffered from and vowed I would not allow him to live his life as I have--In digestive misery. So I sought answers. My primary physicians kept saying it was IBS or Spastic Colon well that did not settle with me. I started researching and came across Celiac Disease-which I had never heard of until then. So my first thought was lets ask the DR, well they pretty much laughed in my face. So I dumped that dr and sought another one. This dr at least listened. Sent me off for some testing, test came back negative. Frustrated I went to an immunologist where she did some scratch testing for Wheat, Barley, Oats and Rye. I swelled up like a balloon, the hives the scratched left behind were huge. She then suggested I get the $700.00 blood test for Celiac. Yes $700.00 for a blood test. It came back positive for the celiac marker, however negative for the other part that said I have celiac. So then off to a gastrologist. They refused to do anymore testing because 1) I have the marker 2) I have such a strong reaction to the skin test. So I have never had the biopsy. I started eliminating Gluten from my diet and VIOLA all symptoms had ceased. So, my thought to you is to live a Gluten free life for a while and see what happens. You don't need to spend a ton of money for a DR to tell you to avoid Gluten. Come to find out My father is the Carrier for the gene, so now I have it and my son has it. Who knows who else in my family has it, Thus far I have been the only one to suffer so badly with it. My siblings could have it, and never feel the effects of it. I try to live a GF diet but I have found it extremely difficult when you were raised on Wheat, rye, barley and oats. Good Luck I wish you well.

There is no reason to confirm the diagnosis. Eat right = feel good. Eat gluten = feel bad. End of story.

I dont have any advice but Im in the same situation. I just tried the diet because I met someone with the same symptoms that has been on the diet for years. Since one month I have felt great and I can tell when I eat something I was unaware of like Dannon yogurt. and I get those same stabbing pains in my gut. My celiac was triggered after I had some hernia surgery in december and it started begin of may gradual at first and then full force. Trish

I feel really good reading this as I haven't had an official diagnosis. I've only been *trying* to go Gluten Free for two weeks now and it has been amazing. I am still cheating especially on weekends, because I get overwhelmed when there is nothing around to eat and people order pizza and stuff. But I am going to get better, I've got to start keeping more things on hand and actually start baking! I just wanted to say seeing this discussion made me happy, since I have no insurance right now. I've had GI issues my whole life and every day I stay Gluten Free I feel better.

I enjoyed everyones'responses. I was diagnosed 5 years ago Sept. 16. One of the responses was you couldn't get life insurance or it's cost more. That is correct. I went out and got a different life insurance about a year after my diagnosis as my other policy went out the roof with my increased age. I was quoted one price by the sales rep with the qualifing statement that it could change after the physical, which it did. It increased about $100/year. I took it as it was less expensive than the one I had at the time. They never came out and stated that CD was the reason for the increase, so I inquired of my FNP and she said that was why the increase in premium.

Hi all. Am new to this site and to the gluten free lifestyle. Wanted to say thank you for all of the posts I've read - it helps me remember that there's a light at the end of the tunnel, and that I can not only adapt my lifestyle but thrive! I have no formal diagnosis, but I can trace the changes in my body over the last ten years - and all can be traced back to gluten: bumps on my arms and legs, lactose intolerance, cystic acne, exhaustion, depression, Raynaud's syndrome. All in that order, obviously my body reacting more and more severely to gluten. I've always eaten a very healthy diet and excercised regularly. Now I see that some of the foods I thought were helping me were actually harming me! No wonder my symptoms were getting progressively worse instead of better! I've made the commitment to help my body heal, and I already feel more energized and positive, the condition of the circulation in my hands and feet has improved within a few days, and my skin has started to heal! So thank you for helping enourage me on the journey towards a healthier body and mind!

I've read that the tests sometimes are inconclusive. I don't have insruance, so I just put myself on a non gluten diet and am getting better daily. I've been diagnosed with COPD/asthma, I've been on 5 meds that didn't help all that much. Since going gluten free 1 1/2 months ago I will never go back. Don't need an expensive test to tell me its working. The hard part is figuring out all the different names for things that are made from gluten. And since having a reaction from an unwashed grocery store apple I will only be eating farmers market organic fruit and veggies.

We're doing the elimination diet with my 2 year old right now. It is looking more & more like gluten or dairy (or maybe both - not sure yet) are the ones causing trouble but I don't think we'll go through the full process of testing him for Celiac. Instead we'll just go forward as free of whatever items nec & teach him to do so. I can see having labs done when he is older if he goes off track (I can hope he'll be strong enough to stand tough to peer pressure but I know missing pizza parties & such will be tough) to show whether or not he has an allergy or Celiac. If he does, that should cement that point that he must stay away from those things. Good luck to you all!

i have had ultra sounds done... blood work done.... i figured out on my own that i am lactosse intolerant.... but i still have stomach pains...sometimes so bad i cant breath...then i talked to another doctor and a few friends and they mentioned gluton.... i was like huh? so what kind of diet can i eat that would help me... cause i dont eat at all right now... maybe once a day.. cause everything bothers me...so where can i get a dt that i can afford as well.... and what fodsdo i stay away from.... fast food no way!!!! ow!!!!!