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Doctors?
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7 posts in this topic

I don't quite understand why someone should go to the doctor for diagnosis. Every time I went to them I got nothing but shrugs and " irritable bowel syndrome" like everyone else here..When I threw all my symptoms at them, they just called it "normal" and a part of getting old..Besides, I passed my physicals, didn't I?

By knowing that my niece was diagnosed with it...that another niece has had 7 spontaneous abortions, along with gut problems in siblings, myself, etc..I couldn't fathom going back to them with anything to do with my gullet..

The symptoms are fading fast..Isn't that enough? The test involves taking some into my body and I will not tolerate my bowel obstructing again like it has daily for the last 56 years..I feel better than ever and will not tolerate eating that poison again.

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Yea...those types of doctors aren't the ones you want to go to. I go to a doctor because he can monitor the medical aspect of this much, much better than I can and because my doctor is EXTREMELY knowledgeable about celiac disease... (part of the Celiac Disease Center at Columbia University).

But go with your gut! :lol: (no pun initially intended, but then I thought it was funny)

If you feel good without gluten, then that's reason enough to stay gluten-free.

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I don't have an official diagnosis and doctors were of absolutely no help to me. I am healthier at 37 than I was at 17 and that is all that matters.

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If you accept the diagnosis your body is giving you, you don't need a doctor's. I am glad you are feeling so much better!

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I'm not officially diagnosed, either. I did tell my doctor I was feeling better after going gluten-free for two weeks and asked if I could have tests and he said that actually, seeing a change on a diet is as good a diagnosis as any other - keep it up for 6 months and reevaluate. At that time I did the EnteroLab test and found some answers to how I have been feeling so that is good enough for me. I haven't gone back in to see my doctor since I went gluten-free but have been thinking of going in to discuss this with him. I have been trying to decide if it's worth paying for the appointment to get his stamp of approval or not, and I'm just not sure that's the case. I'll probably go in eventually.

Stephanie

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Hi -

I also was disappointed in the way two of my doctors were so quick to label it IBS and then just say 'deal with it'. As my health got worse I investigated the web and self diagnosed myself and did find a GI that knew of the disease and did a biopsy to confirm.

I've decided to try to educate people I know about celiac disease. (I've labeled myself the Ambassador of celiac disease) :P I sent an email to my primary doctor informing him of the diagnosis and my disappointment that it wasn't found earlier. I also told him that celiac disease is more common than originally thought of and I hope that as he sees patients in the future that he will remember celiac disease as a possible diagnosis.

He responded positively - said that he is open to his patients 'teaching' him. I know many doctors may not be open to our feedback - but I feel that if all of us with celiac disease make the effort to educate the health care professionals, our families and friends, than over time people will become more aware of this disease.

Mary

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Mine is a mixed tale. I got DH while I was in my 20s and although my doctor tried and tried to get me to go gluten-free, he also never told me about the celiac link. None of my doctors did. All I knew was that dapsone took care of the DH. I wish I had known more earlier.

However, when I DID suddenly get very ill from celiac, my GI did quickly find the reason and he told me to go gluten-free for the rest of my life. None of this stuff about going gluten-free for a while and then trying to eat gluten again. In addition, doctors for ALL of my first-degree relatives readily agreed to test them. My father, who had no obvious symptoms other than DH, was positive on everything.

richard

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    • Hi Lisa, I completely understand why you didn't do a biopsy on your daughter.  I went through the appendix thing myself...not fun!  I was diagnosed with just bloodwork and no biopsy, but did have the full panel.  I would go back to your PCP and ask for a full panel to include TTG, EMA and DGP tests.  Since she was already willing to test you, I'm sure she would be willing to order these.  Good luck!
    • What a gross title–it bothers me and I wrote it! It wasn't my idea originally. The research paper the data came from was entitled, "Experimental hookworm infection and gluten microchallenge promote tolerance in celiac disease" published recently in the Journal of Allergy and Clinical Immunology. View the full article
    • katesyl.........this is an older topic so the OP most likely won't answer.  I can, however, offer a piece of advice for you. Just going gluten free will probably not drive your inflammation markers down into normal.  It does depend on how high they were to begin with but with all autoimmune diseases, there will be inflammation going on forever.  Get used to wonky blood work because most of us will have that issue. I have 4 autoimmune diseases in total and, although I have driven certain inflammatory markers way down, my recent sed rate number was elevated.  The normal is supposed to be 30 and under in a woman my age but mine is 50.  With 4 AI diseases, I doubt it will ever be normal and I don't let it bother me. I am not willing to take major meds at all and use more natural anti-inflammatory supplements.  You can do whatever you feel comfortable with in regards to treatment but don't expect normal numbers with Celiac Disease. Inflammation will improve but normal?  Most people never get there completely.
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    • I would like to know if you have found out the source of your inflammation yet. I'm gluten free three years but my inflammation test was high.
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