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Must Be A Celiac Thing!

gfgypsyqueen

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gfgypsyqueen Enthusiast
gfgypsyqueen
Posted

I am really the only one who gets the "must be a celiac thing" write off from the doctors?? I would actually love to hear that I am the only one that this happens to, but sadly I doubt that is true.

I know regular family doctors don't know a whole lot about Celiacs. I understand that. I know my gastro even said I would know more about this disease in a month than he does. I didn't like that answer, but I understand it. He just needs to see the signs and diagnose the disease, I need to live with it.

My problem is why is it now when I go to a doctor because I am sick (non-celiac related), the drs first reaction is always "... hmm...must have something to do with celiacs..." Not everything is related to and exists due to Celiacs!!!! Years ago all my "classic Celiac signs" were written off as appendix, female problems, weak stomach, IBS, it's in your head, more female problems, reflux, ulcers, let's open you up and look around, let's remove a few organs and see what happens, and the list goes on and on. NOw it is like I have gone full circle. Now I can't get a doctor to look past the fact the I have food allergies and Celiacs, and that I am generally healthy exept for the reason I am here to see the doctor today. The knee jerk reaction from the doctor is that once a Celiac, everything else that happens is directly related to celiacs - "don't you have a gastro you could see??" My knee jerk reaction is I feel like kneeing these doctors. . . . just to see if they can think past it....

Too all of you good doctors, I appologize in advance, I am just really upset with my traditional healthcare providers!!!

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mamabear Explorer
mamabear
Posted

I am really the only one who gets the "must be a celiac thing" write off from the doctors?? I would actually love to hear that I am the only one that this happens to, but sadly I doubt that is true.

I know regular family doctors don't know a whole lot about Celiacs. I understand that. I know my gastro even said I would know more about this disease in a month than he does. I didn't like that answer, but I understand it. He just needs to see the signs and diagnose the disease, I need to live with it.

My problem is why is it now when I go to a doctor because I am sick (non-celiac related), the drs first reaction is always "... hmm...must have something to do with celiacs..." Not everything is related to and exists due to Celiacs!!!! Years ago all my "classic Celiac signs" were written off as appendix, female problems, weak stomach, IBS, it's in your head, more female problems, reflux, ulcers, let's open you up and look around, let's remove a few organs and see what happens, and the list goes on and on. NOw it is like I have gone full circle. Now I can't get a doctor to look past the fact the I have food allergies and Celiacs, and that I am generally healthy exept for the reason I am here to see the doctor today. The knee jerk reaction from the doctor is that once a Celiac, everything else that happens is directly related to celiacs - "don't you have a gastro you could see??" My knee jerk reaction is I feel like kneeing these doctors. . . . just to see if they can think past it....

Too all of you good doctors, I appologize in advance, I am just really upset with my traditional healthcare providers!!!

[/quote

Well......I guess I'm more impressed that he is making a celiac connection past the gut issues! Sorry, but you may have to teach them. Medical education is awful about celiac disease, and if you don't search it out....the knowledge given in training is terribly inadequate. I think it would be just fine if you kept a straight face and said "no, I don't think my strep throat has to do with celiac!" :huh:

Jestgar Rising Star
Jestgar
Posted
I think it would be just fine if you kept a straight face and said "no, I don't think my strep throat has to do with celiac!" :huh:

:lol: :lol:

You can also tell them that it may be related to Celiac, but that doesn't mean it can ignore it and not treat it.

Jo.R Contributor
Jo.R
Posted

I know what you mean. When i first had symptoms I didn't want to go to the Dr. I'm overweight and of course that would be why I have gastro probs. I was lucky, but my mom wasn't. She had some complaints that no one took seriously until she quit smoking, then they found out she had MS, and neurorapathy. My first rule of thumb is to fight for your health. If you don't no one else will. Good luck.

Karen B. Explorer
Karen B.
Posted

My struggle has been getting my primary doc to consider my Celiac when diagnosing my symptoms. For instance, I have had a single, boil like eruption occur on my left side twice now, in the very same place, occurring about once every 2 years. She didn't think it could be Celiac related because it wasn't DH. She tested it and said it was "herpetic in nature, like shingles but nothing related to Celiac". Then I found out that a co-worker who is Celiac and her daughter have both had similar eruptions. So, it's not Celiac related but 3 Celiacs have had something similar that no non-Celiacs have exhibited. (at least none I know well enough to ask). Hmmm. And my primary doc is an Internal Medicine Specialist! At least she checks to see if she's prescribing gluten-free drugs now, which is an improvement.

I had to tell my Mom's doc that I would pay for her Celiac test if it came back negative because he insisted she couldn't have Celiac. She was overweight and her only real symptom was muscle cramps. Guess what... Medicare paid for the test and her muscle cramps have gone away since she started a gluten-free diet.

My sister has had 4 neck surgeries and her doc couldn't explain why the bone didn't heal properly. She has a wheat allergy but can't eat enough to register on a Celiac test, but she can get by with the occasional "cheat". Just to humor me, she went on a gluten-free diet during her recovery this last time and the bone healed properly but her doc has never heard of gluten affecting the way bone heals... that's an intestinal issue.

I think we need Celiacologists.

nikki-uk Enthusiast
nikki-uk
Posted
I think we need Celiacologists.

:lol::lol: Yes!!!!

BTW - My coeliac son gets boils - flare ups seem to co-incide with being glutened.

loco-ladi Contributor
loco-ladi
Posted

Ok, this prolly is no way related, but on the off chance...

About 6 years ago I had surgery, and one certain spot on the incission (sp) never healed right, it would go away, then reappear, go away, reappear, dr after dr told me "its s stitch working its way out...

Wonder if now that I am gluten-free it will disappear or not, never have seen that elusive "stitch"

some things just make you go HHhhmmmmmmmm

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    • Julie 911
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      By Julie 911 · Posted

      No she didn't because if I want to ask I have to pay 700$ for 1 hour appointment so I couldn't even ask. I read that fillers like cornstash can alter the result and tylenol contains it so that's why I tried to find someone who can answer. 
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