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Diagnosed by Symptoms
posted by archerymom 8 months ago

Has anyone else just been diagnosed by trial diet?

After years of severe illness, and tests to exclude some aliments, my doctor concluded that my symptoms could all be related to Celiac Disease. However since I am a self pay client and the blood tests and biopsies would be very expensive, my doctor prescibed a Gluten Free trial diet to see if my symptoms resolved. I've been on the diet for 1 month now, and feel fantastic! I can't believe I feel this much energy and have so much less pain. HOWEVER, after reading all the info about how a person should have the blood tests and biopsy to confirm the diagnosis, I'm very worried. I don't want to go back to how sick I was before, and I'm afraid if I go off the diet, I will. Any feedback would be greatly appreciated.




tags:  soccermom
 
1. posted by: GFLIVING   8 months ago

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!!

 
2. posted by: Sobie   8 months ago

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.

 
3. posted by: archerymom   8 months ago

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!

 
4. posted by: soccermom   8 months ago

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!

 
5. posted by: soccermom   8 months ago

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.

 
6. posted by: jtpaquette   8 months ago

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.

 
7. posted by: archerymom   8 months ago

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.

 
8. posted by: dietlorird   7 months ago

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.

 
9. posted by: gabby530   6 months ago

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

 
10. posted by: scrappertrina   6 months ago

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. :)

 
 
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