Doctor Doesn't Think I Have It...

[Chelle15]

Ugh! It was not that I wanted to have a disease, but I wanted to have the ability to control my symptoms instead of it being IBS.

I went to see the GI doctor, he was a very nice man and listened intently to me. He went over the blood tests that my primary doctor did. He said they did a panel of 4, I think. He said, yes two did come back positive, but they are the least two significant positives on the panel. The other two more significant came back negative.

He is going to do the endoscope and colonoscopy. But he believes it is IBS, which I was diagnosed with before.

I felt like crying, I just want an answer to all of my problems and IBS is not a good enough answer for me. Based on what a lot of you have said in my prior posts, I may try a gluten free diet even if the endoscope comes back negative.

Any opinions would be appreciated. Thank you

[Guest nini]

personal opinion is to stop messing with Dr.s and just try the diet. If it works then viola! you have your answer. As much as the Dr.s like to rely on quantifiable tests, the truth is that the most valid diagnostic tool is how do you respond to the diet. Not, do you have sufficient damage YET to show up on tests... The blood tests and biopsy's are archaic and are only looking for the digestive symptom damage, not looking at any of the neurological symptoms or anything else for that matter. Based on my research even ONE positive in the panel is enough to suspect Celiac and then that can be CONFIRMED with positive dietary response. I was dx'ed with IBS 12 YEARS before I was dx'ed with Celiac. Had I been properly dx'ed back then how different would my life had been? First came the IBS dx, then came the Fibromyalgia dx, then the Infertility and Miscarriage issues, Depression/Anxiety disorder and on and on...

If YOU need a quantifiable test result, then Enterolab has a much better track record than any of the more conventional testing methods.

[plantime]

Even one positive result is still a positive result. Why do you need a doctor to do more tests? Try the gluten-free diet for 6 weeks, then evaluate how you feel.

[ravenwoodglass]

I am going to strongly agree with the other posters. Get on the diet and see what happens. Relying on the doctors I relied on delayed my diagnosis by many painfull years and resulted in complications both neurological and physical that would never have happened if they had told me to try the diet instead of relying on their imperfect tests. The diet has given me my life, health and sanity back. Trust yourself and how you feel on the diet. IMHO doctors are very reluctant to diagnose us because then we would know how long we had been misdiagnosed for. Do the diet and see how you feel that is the truest test.

[Chelle15]

Again, thank you for all of your support and time. Your posts have been very helpful. I guess I just want a dx because I feel like everyone will think it is some weird thing I am doing and that it is all in my head. I know I should not care about that, but I just so sick of everyone telling me it's IBS or nothing is wrong. I do believe I will try the gluten free diet. I want to feel better, so much! My family has history and crohns and stuff so I will go forward with the other tests, just in case there is anything else in there.

[rinne]

I agree with everyone above, try the diet as a diagnostic tool. See for yourself how you feel.

I am proceeding with tests to rule out other problems but I went gluten free the day I learned about Celiac and that my sister has it too. That was in early May and I am still not okay but I am doing better. I have also had to cut out dairy and nightshades and coffee and sugar....and what I have realized is that to get to the point where I lost 40 pounds, over 5 months, means that I am ill and that it will take time to recover.

My sister was diagnosed with IBS prior to the Celiac diagnosis, she was told that her primary problem was the IBS and that she had a wheat allergy and should avoid it. Not one word about gluten from the Doctor, she continued for five years to eat gluten and has gotten sicker and sicker. Do I trust Doctors? No.

[bklynceliac]

I'm surprised he was so discouraging even with some positive bloods. I had negative blood work and negative biopsies, but have responded extremely well to the diet. I have been told with certainty that I don't have the disease, and received a somewhat perfunctory "maybe it's ibs". I just saw a new doctor yesterday and he said "forgot the other doctors, do what's make you feel better". I was very happy to hear that. He told me I was crazy if I started eating gluten again if i knew it was making me sick. And he's a real doctor, not some hippy dippy herbalist or something. It's seems so obvious, but I really appreciated having a doctor say it.

[wacky~jackie]

  Chelle15 said:

Again, thank you for all of your support and time. Your posts have been very helpful. I guess I just want a dx because I feel like everyone will think it is some weird thing I am doing and that it is all in my head. I know I should not care about that, but I just so sick of everyone telling me it's IBS or nothing is wrong. I do believe I will try the gluten free diet. I want to feel better, so much! My family has history and crohns and stuff so I will go forward with the other tests, just in case there is anything else in there.

I can relate to your wanting a definite dx. I know we shouldn't worry about what others think but I know my family (not my husband & kids - but my in-laws and such) will think I'm just on another crazy diet like Atkins. I think I'll just tell them that I have been diagnosed. How will they know the difference.

[Nancym]

IBS isn't a diagnosis. It's a catch-all for "we don't know".

I suggest, you just go on the gluten-free diet and see how it works. That's how I came by my diagnosis, and I had IBS for years and years. If you want something official looking, get tested by Enterolab.com. It's the only decent test out there (IMHO).

[Deb O (UK)]

  nini said:

personal opinion is to stop messing with Dr.s and just try the diet. If it works then viola! you have your answer. As much as the Dr.s like to rely on quantifiable tests, the truth is that the most valid diagnostic tool is how do you respond to the diet. Not, do you have sufficient damage YET to show up on tests... The blood tests and biopsy's are archaic and are only looking for the digestive symptom damage, not looking at any of the neurological symptoms or anything else for that matter. Based on my research even ONE positive in the panel is enough to suspect Celiac and then that can be CONFIRMED with positive dietary response. I was dx'ed with IBS 12 YEARS before I was dx'ed with Celiac. Had I been properly dx'ed back then how different would my life had been? First came the IBS dx, then came the Fibromyalgia dx, then the Infertility and Miscarriage issues, Depression/Anxiety disorder and on and on...

If YOU need a quantifiable test result, then Enterolab has a much better track record than any of the more conventional testing methods.

I agree!! I have recently tested positive on 1 antibody and like so many others I've spent time wondering what that means and if I ought to have a biopsy etc. I was dx with IBS about 12 years ago and it was about 20 years ago that my stomach started bloating. I've now got a new doctor who, when I described my symptoms, said straight away that he'd check my blood for celiac (and many other things). On getting the result he referred me to a dietician. I saw him again yesterday to talk with him about a biopsy. He was brilliant - he discussed it WITH me and said it was an option, but like Nini he asked what is the point? He encouraged me to get started on the diet and said that feeling better on a gluten-free diet would be my diagnosis. What with the support I've recieved from this board, and a sensible doctor, I feel I'm on my way to recovery, without yet going gluten-free

I'm getting things in place and hope to start gluten-free in a couple of weeks and I can't wait

[Chelle15]

Thank you so much for your responses. It really helps. I guess I just always feel like a hypocondriac(sp?), and I feel like everyone else thinks that too. That is the reason for a dx, for my own peace of mind. I LOVE this board.

Thank you , thank you...

[jcc]

  Chelle15 said:

Ugh! It was not that I wanted to have a disease, but I wanted to have the ability to control my symptoms instead of it being IBS.

I went to see the GI doctor, he was a very nice man and listened intently to me. He went over the blood tests that my primary doctor did. He said they did a panel of 4, I think. He said, yes two did come back positive, but they are the least two significant positives on the panel. The other two more significant came back negative.

He is going to do the endoscope and colonoscopy. But he believes it is IBS, which I was diagnosed with before.

I felt like crying, I just want an answer to all of my problems and IBS is not a good enough answer for me. Based on what a lot of you have said in my prior posts, I may try a gluten free diet even if the endoscope comes back negative.

Any opinions would be appreciated. Thank you

Check out the pages on Diagnostic Testing (including Delay of Diagnosis) and Fibromyalgia (there is more "IBS" in there). I agree with others who say that a dietary trial is a wise move. My daughter had only an isolated antigliadin IgG of 30, the weakest of the markers. She had chronic diarrhea for two years and neurological symptoms...and some rashes...everything resolved gluten free.

Open Original Shared Link

Be sure to request copies of your blood results and your biopsy report!

jcc