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Ahorsesoul

My Feelings And Thoughts About Celiac And Doctors

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I probably shouldn't post my true feelings about doctors who are giving out bad or no advice about celiac disease. I've been in the medical field since 1972 so I have experience from both sides of the fence.

I think we all have to do our best to find a doctor who will listen to us and check out the latest info on celiac disease. Sure it is easier said than done but we need to make the effort for our health. We are all worth it.

Questions to ask before you commit to an appointment:

1. Do you treat patients with celiac disease? (most will say sure so then ask second ?)

2. How many of your patients have celiac disease? (a percentage is fine but if they only treated one or two, run)

3. What tests do you recommend for celiac testing? (then check this site to see if they are correct)

4. What's the latest training you've had for celiac disease?

If you thought you had skin cancer you probably would not make an appointment with a doctor who dealt with colon cancer. You'd go to someone who dealt with skin cancer. The same with Celiac disease. Just because you have an appointment with a GI doctor does not mean he will know much about our disease. It's up to us to check out the doctor we see.

We can not assume that we will get the best care we need. We do have to demand it. (stepping off soapbox)

Anyone have any other good question we should be asking?

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Do you have an IQ higher than 63? If not, do you at least have an oz. of common sense?

Right now, I don't think my Doc has either!

Susan

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Do you have an IQ higher than 63? If not, do you at least have an oz. of common sense?

Right now, I don't think my Doc has either!Susan

Good one Susan! And so very true.

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And

5. Do you have an open mind? and its companion

6. Can you think outside the box?

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Also...

7. Do you keep up with your field...i.e., the latest research findings in medical journals?

8. Do you believe that patients are human beings with the ability to read journal articles for themselves and UNDERSTAND them??

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Maybe this thread is really just an exercise in venting the frustration of trying to find a doctor who knows enough about celiac disease to give an accurate diagnosis, but I have to ask... How do you ask these types of questions without getting labeled as just fishing for a particular diagnosis? Enough of us have met doctors already who treat us like head cases, I don't want to add to that by leaving the impression that I only want to hear what I want to hear.

When I called for an appointment with a doctor who had been recommended to me as familiar with celiac disease they offered a sooner appointment with another doc in the office. I expressed my frustration with the last doctor telling me celiac patients are thin because they're malnourished and that it couldn't be my problem since I'm obese. I told the receptionist that if I got a negative diagnosis, that's fine, but I wanted to be sure it wasn't just because the doctor wasn't familiar enough with this disease. She assured me he was familiar and had other celiac patients, so I made the appointment. He told me at the appointment that he has a wheat allergy himself, and lo and behold, I have a diagnosis of wheat allergy :P. I *may* very well have a MILD wheat allergy (no allergy testing was offered or recommended), but I am also either gluten intolerant or have celiac disease, and unless they find a better way to test for it, I'll probably never know which.

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When I was a young mother-to-be all the books of the time advised to interview your prospective ped. before the baby was born. And that's what we did. My husband & I made an appointment and sat down with the doc. He also took preliminary info for his files about the baby's due date, my pregnancy, our wishes about circumcision, etc. Had I not liked him or his answers to my questions at that interview, I would have found another dr before we ever went to a visit.

Can we not do the same to our dr's for ourselves? I know when I interviewed our current dr after we moved here, he seemed kind of surprised by it, so I guess it's not that common. But isn't it a good way to see if we are compatible and their overall demeanor before we wait weeks to get in and then find them below par? Talking to a dr's staff person isn't the same as dealing with the dr directly. I think an upfront interview would save a lot of grief.

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But isn't it a good way to see if we are compatible and their overall demeanor before we wait weeks to get in and then find them below par? Talking to a dr's staff person isn't the same as dealing with the dr directly. I think an upfront interview would save a lot of grief.

I agree, in theory, but if the reality is that it takes 4 weeks to get to the interview appointment, and another 4-6 weeks to get the first medical appointment, it means MORE waiting around. When we're already sick enough to pursue medical treatment in the first place, a long wait may be more detrimental than just seeing a less knowledgeable (about celiac disease) doctor.

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Can we not do the same to our dr's for ourselves? I know when I interviewed our current dr after we moved here, he seemed kind of surprised by it, so I guess it's not that common. But isn't it a good way to see if we are compatible and their overall demeanor before we wait weeks to get in and then find them below par? Talking to a dr's staff person isn't the same as dealing with the dr directly. I think an upfront interview would save a lot of grief.

I did this with a doctor who was to be my PCP. She was surprised. The interview went OK but she turned out to be the worst doctor I had ever had and wanted to send me to a psychiatrist because my digestive problems were "all in my head". She couldn't diagnose her way out of a paper bag and eventually gave up her practice (which was thriving when she bought it) and went to work for Kaiser. I received that notice in the mail the very same day I came home and told my husband "I just can't tolerate that woman any longer!" So you can't always tell even if you interview them.

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There's nothing wrong with venting....we've all earned that right!

I just went to a GI dr. that supposedly "knows" Celiac. I have a check back in 2 weeks but in the interim his nurse called to inform me that the biopsy from the endoscopy was back and I don't have Celiac. I didn't know he was testing me for celiac and I've been gluten free almost 4 years! (I'm giving him the benefit of the doubt that perhaps the call was a mistake, but this could be really interesting.) The University of Chicago Celiac Disease Center offers training to Dr.s, maybe I'll suggest it to this one.

My favorite question you all have listed so far is "Do you believe me?"

So, having given this a good deal of thought, I would sidestep the questions of can the Dr. dx celiac and ask questions that would tell me if they're really ready to "treat" one: 1. If I am dx'ed with Celiac, what follow up tests will the Dr. do? (vitamin levels, serum calcium, thyroid function, etc.) 2. What Celiac skilled nutritionist/dietician will Dr. refer me to? 3. What tests and how often will Dr. check to see that my gut is healing?

Diagnosing is one thing, but treatment is another, and I have yet to find one who can do either. (I live in Kansas and feel like I'm looking for Oz most of the time :lol: )

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I agree, in theory, but if the reality is that it takes 4 weeks to get to the interview appointment, and another 4-6 weeks to get the first medical appointment, it means MORE waiting around. When we're already sick enough to pursue medical treatment in the first place, a long wait may be more detrimental than just seeing a less knowledgeable (about celiac disease) doctor.

This is without a doubt my frustration. I have been experiencing stomach issues for over 2 years. They started off mild but steadily increased. Then other "funny" symptons showed up. I have a history of autoimmune disease (graves). It's something I bring up in every appt. Last summer, my doc referred me to a GI guy, who blew me off, treated me like I was a silly little girl and gave me a laxative. Uh, thanks. Wouldn't have thought of that.

To her credit my doc was mad when she heard that but she assumed I had IBS.

My body must deal with symptons funny. For graves, a big indiacator is hyerthyroidism (the disease which usually makes you skinny). Not me. I BLEW UP. I'm talking 30 pounds in a month. It was humiliating going to the doctors and dealing with the nurses and their condensencions ("hyperthyroidism? are you sure you don't mean HYPO darlin'? You are clearly not HYPER") They were also shocked when I would ask them to please check my records for proof (I was off the charter hyper)

Now this. This is a disease which usually - at least when you search for symptons - lists underweight and weight loss. Again my body seems to be doing the opposite.

I am holding out hope that my GI doc visit will not be a waste of time. She recommended him knowing that the other blew me off and he is incredibly hard to book. I'm hoping that means he knows a thing or two. I'm reading up as much as possible to ensure (I'm used to pointing out things to doctors after them being wrong....sad)

In the last month my symptons have worsened and I'm in pain. Esp now that I am back on gluten. I am really having a rough go of it. If he treats me as if I am crazy I will lose it. I already spend most days crying.

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This is without a doubt my frustration. I have been experiencing stomach issues for over 2 years. They started off mild but steadily increased. Then other "funny" symptons showed up. I have a history of autoimmune disease (graves). It's something I bring up in every appt. Last summer, my doc referred me to a GI guy, who blew me off, treated me like I was a silly little girl and gave me a laxative. Uh, thanks. Wouldn't have thought of that.

To her credit my doc was mad when she heard that but she assumed I had IBS.

My body must deal with symptons funny. For graves, a big indiacator is hyerthyroidism (the disease which usually makes you skinny). Not me. I BLEW UP. I'm talking 30 pounds in a month. It was humiliating going to the doctors and dealing with the nurses and their condensencions ("hyperthyroidism? are you sure you don't mean HYPO darlin'? You are clearly not HYPER") They were also shocked when I would ask them to please check my records for proof (I was off the charter hyper)

Now this. This is a disease which usually - at least when you search for symptons - lists underweight and weight loss. Again my body seems to be doing the opposite.

I am holding out hope that my GI doc visit will not be a waste of time. She recommended him knowing that the other blew me off and he is incredibly hard to book. I'm hoping that means he knows a thing or two. I'm reading up as much as possible to ensure (I'm used to pointing out things to doctors after them being wrong....sad)

In the last month my symptons have worsened and I'm in pain. Esp now that I am back on gluten. I am really having a rough go of it. If he treats me as if I am crazy I will lose it. I already spend most days crying.

But it took me months to get in to see him, so I am hoping I dont get in to see him, then have a follow up appt that takes another month to get into then another month after that....can't we move this along already? I called today to see if there were cancellations and he isn't open agian until May! So does that mean if follow up is needed it will have tow wait until May?! Geesh. I hear celiac can take months to heal, I've got to get going.

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Ugh, I am going to see a natropath tomorrow because I have lost all faith with the "I have a pill for that" doctors. I am convinced that I have some other underlyling food allergies that are just now able to get some attention now that gluten isn't raising such a stink. Because natropathy isn't covered under my insurance I have to shell out the $185 for the hour long apointment and I swear if she is ignorant about this disease I will probably lose it right there in her office! BTW...I did make sure she had experience in dealing with Celiac Disease and food allergies when I made the appointment but what was the person answering the phone suppose to say - "Um, no. Actually she is quite ignorant on the subject!"

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One of us needs to get a dam medical degree!

I keep reading, "Find a Dermatologist knowledgable about Celiac and Dermatitis Herpetiformis."

I don't have enough money to do that!

I have interviewed Dr.'s too. By the time I'm done with the third question their eyebrows are raised and they say something stupid like:

"So how can I help you today."

"Where is your pain?"

Redirecting me! As if to say, they can only handle it if it is a simple symtom.

Then I usually get referred to a "Specialist".

If you have Celiac, you need to see a Gastroenerologist.

But I have DH, not stomach problems.

"Well then, I will refer you to a Dermatologist."

I don't need a dermatologist, cause there is no treatment except being gluten free. But I need follow up care for Celiac, like vitamin levels, thyroid checks and to watch for auto-immune diseases.

"Oh so you need a Rheumatologist or an Endocrinologist?"

Nobody wants to treat a Celiac. I'm still searching for a good Dr.

It's crazy.

Haven't we got a medical Dr. on here that has Celiac disease and is willing to devote their practice to us?

I'd fly out for an appointment too!

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