Saw My New Pcp Today..

[Bubba's Mom]

I went to my new Primary Dr for the first time today.

She asked how I was doing..so I told her about being DXed with Celiac at the beginning of July, and it's hard to deal with. I told I was keeping a food journal and writing down what I eat and any reactions I get because after starting the gluten-free diet I didn't feel better right away. I told her that I've found that soy is giving me neurological issues.

She asked "like what"? and I told her dizziness, extreme sleepiness like I've been drugged, migraines, pain in my left ear and loss of balance. That's followed by severe joint pain.

She told me "soy couldn't do that. It has to be something else".

I told her by tracking what I ingest, EVERY time I eat soy I get those symptoms. She again repeated that soy can't do that.

I told her I was also experiencing some other symptoms and would like a Hasimoto's test. Again she asked my symptoms..and said she'd order a TSH level test, not a Hasimotos. She said the Hashi test costs more.

She said if my TSH is normal I can't have Hashimotos.

She also told me she found it odd that I just got DXed at my age(54). She said if I really have Celiac I would have been DXed much younger due to wasting/weight loss issues.

She did give me a recommendation to meet with a dietician, since I had questions about eating dairy with flattened villi and wondered if taking vitamin suppliments was doing me any good with malabsorption.

The specialist that DXed me told me I "had Celiac disease. Don't eat gluten. Look it up on the internet."and that's all she said. No refferal to a dietician, no literature, etc., so at least I got a referral.

I'm just not sure how this new Dr. is going to work out?

[pricklypear1971]

Where do you live?

[Bubba's Mom]

Toledo Ohio. There is no support group in our city, so I'm guessing there aren't many Celiacs here..or Dr.s that are good at treating the disease?

[cahill]

I went to my new Primary Dr for the first time today.

She asked how I was doing..so I told her about being DXed with Celiac at the beginning of July, and it's hard to deal with. I told I was keeping a food journal and writing down what I eat and any reactions I get because after starting the gluten-free diet I didn't feel better right away. I told her that I've found that soy is giving me neurological issues.

She asked "like what"? and I told her dizziness, extreme sleepiness like I've been drugged, migraines, pain in my left ear and loss of balance. That's followed by severe joint pain.

She told me "soy couldn't do that. It has to be something else".

I told her by tracking what I ingest, EVERY time I eat soy I get those symptoms. She again repeated that soy can't do that.

I told her I was also experiencing some other symptoms and would like a Hasimoto's test. Again she asked my symptoms..and said she'd order a TSH level test, not a Hasimotos. She said the Hashi test costs more.

She said if my TSH is normal I can't have Hashimotos.

She also told me she found it odd that I just got DXed at my age(54). She said if I really have Celiac I would have been DXed much younger due to wasting/weight loss issues.

She did give me a recommendation to meet with a dietician, since I had questions about eating dairy with flattened villi and wondered if taking vitamin suppliments was doing me any good with malabsorption.

The specialist that DXed me told me I "had Celiac disease. Don't eat gluten. Look it up on the internet."and that's all she said. No refferal to a dietician, no literature, etc., so at least I got a referral.

I'm just not sure how this new Dr. is going to work out?

my GI doc and my neurologist would disagree with her.

bottom line for me;; if my PCP will not order the test I ask for or referrer me to the specialist I ask for I would look for a new PCP.

I am 54 also and just received my "official " celiac diagnosis last May.

In addition to my NEW PCP I also see a GI doc, a Neurologist and an Endocrinologist on a regular basis . My GI I see once every 6 months, my neurologist I see once a year and my Endocrinologist I am currently seeing every 3 months.

[Takala]

You don't have to see this ongoing disaster of an excuse for a medical professional again, do you ?

There are just as many celiacs and gluten intolerants in Ohio as anywhere else, but obviously they are never going to get diagnosed because this is what is coming out of the medical profiteering industrial complex.

Do you want somebody to rebut every wrong thing she said, point by point, so you can send it to her, or just bag it and get another one ? By the time she got to the "at your age" part I don't think I would have been very nice to her, and asked if her google was broken, since I thought everybody with internet had access to NIH and Pubmed where statistics and symptoms of diseases are documented in a government database of science research articles. Gee, it's only 1% of the population with celiac, and and if one agrees with latest researchers about 5 to 7% of the population with gluten intolerance, is that a large enough proportion of the population affected to be taken seriously by her, or not ?

I don't care if people don't know, (American Exceptionalism! strikes again) but can't they at least look things up, when meeting with a patient of another doctor doing a diagnosis ?

[kwylee]

I know it's a pain to switch doctors, but totally agree with the thinking that you should find a better fit for PCP. Life is too short and there's too much to lose by relying on the advise of someone who is so ill-informed. Celiac or not, her attitude about a simple soy food intolerance is downright scary.

[Bubba's Mom]

This "Dr." is actually in the Resident's program of our nearby hospital. She's a first year resident and has to report all of her cases to the rest of the "team" and the Dr's in charge of the program. Our Insurance dictates which Dr.s we can see and labs/Hospitals we can go to. This office is conveniently located, rather than across town which is why we go there.

I have NO idea how to find a better Dr.

Oddly enough, she implied that the GI specialist I saw was incompetent. She said she was going to call her about my DX and then ask around. She said maybe she could get me a better GI.

I have never seen a dietician before. Hopefully, whoever I see will know more about food intollerances and sensitivities? She's affiliated with the Hospital too.

[eatmeat4good]

Wow! That Dr. is just right down the line ridiculous in every statement she makes.

Celiacs don't have to have wasting and weight loss. I was FAT.

TSH does Not indicate Hashimoto's!

I have Hashimoto's antibodies AND a normal TSH...so far)

Soy CAN do all that Doc!

That is just ridiculous. But I think there are millions of Dr.'s just like her.

The white coat and the diploma mean absolutely nothing when it comes to Celiac Disease.

I'm so sorry.

I hope you can find a good Dr.

[GlutenFreeManna]

I went to my new Primary Dr for the first time today.

She asked how I was doing..so I told her about being DXed with Celiac at the beginning of July, and it's hard to deal with. I told I was keeping a food journal and writing down what I eat and any reactions I get because after starting the gluten-free diet I didn't feel better right away. I told her that I've found that soy is giving me neurological issues.

She asked "like what"? and I told her dizziness, extreme sleepiness like I've been drugged, migraines, pain in my left ear and loss of balance. That's followed by severe joint pain.

She told me "soy couldn't do that. It has to be something else".

I told her by tracking what I ingest, EVERY time I eat soy I get those symptoms. She again repeated that soy can't do that.

I told her I was also experiencing some other symptoms and would like a Hasimoto's test. Again she asked my symptoms..and said she'd order a TSH level test, not a Hasimotos. She said the Hashi test costs more.

She said if my TSH is normal I can't have Hashimotos.

She also told me she found it odd that I just got DXed at my age(54). She said if I really have Celiac I would have been DXed much younger due to wasting/weight loss issues.

She did give me a recommendation to meet with a dietician, since I had questions about eating dairy with flattened villi and wondered if taking vitamin suppliments was doing me any good with malabsorption.

The specialist that DXed me told me I "had Celiac disease. Don't eat gluten. Look it up on the internet."and that's all she said. No refferal to a dietician, no literature, etc., so at least I got a referral.

I'm just not sure how this new Dr. is going to work out?

Good grief! That's terrible. FWIW, my soy reactions are almost the same as yours. I highly suspect that soy negatively affects my thyroid.

As for her comments that you should have been wasting away a long time ago, show her this article: https://www.celiac.com/articles/1077/1/39-of-Celiac-Disease-Patients-are-Overweight-at-Diagnosis8212A-Full-30-are-Obese/Page1.html

If you must keep her as your PCP perhaps you can better educate her on celiac so that when she has other celiac patients she will not repeat the same misinformation.

[Takala]

These docs love to ship people who don't know any better around on referrals.

The next gastro doc will tell you you only have IBS, after testing you when you've already been off gluten, so the test won't be accurate.

It's near criminal behavior.

[Goof]

It might not hurt to call your insurance company and explain the situation, that your PCP is disregarding a diagnosis of celiac by a GI, and you like to find someone else in network and preferably near by. There might be options that you don't know about, simply because they're not made obviously known. Ultimately, it is in the insurance company's best interest for you to have a GOOD PCP, as that will help you stay healthy, and therefore keep their costs down. Good luck!!

[Bubba's Mom]

I've gotten copies of my blood tests, pics and report from the endoscope, biopsy report, etc. If I get sent anywhere I'm going in informed. If I'm told to go back on gluten or that my DX isn't valid for some reason..I'm walking out!

I've been pretty depressed lately with the removal of soy from my diet along with the gluten. There are SO many foods I can't eat now because of it. Now this new Dr. is implying that my DX isn't right, and the reactions to soy are "all in my head, and can't be causing me problems".

The Dr. I had for the past 2 years had me pegged as a hypochondriac. It wasn't until I started dropping weight like crazy that he ordered a CT scan that showed enlarged intestinal lymph nodes. Then he said there must be something going on and maybe I should find a GI doc? I got no referral. I had to find one on my own. I was sort of looking forward to his graduating and moving on so I could get a different PCP.

At this point I'm SO frustrated I don't know what to do!

[jebby]

If you are seeing an first year resident as your PCP, then she just finished medical school 12 weeks ago. I saw one case of celiac disease when I was in medical school, and it was a woman with a "classic" presentation of celiac disease. I urge you to find a more experienced primary care physician, at least someone who has completed all her/his training and is board-certified in Internal Medicine.

This "Dr." is actually in the Resident's program of our nearby hospital. She's a first year resident and has to report all of her cases to the rest of the "team" and the Dr's in charge of the program. Our Insurance dictates which Dr.s we can see and labs/Hospitals we can go to. This office is conveniently located, rather than across town which is why we go there.

I have NO idea how to find a better Dr.

Oddly enough, she implied that the GI specialist I saw was incompetent. She said she was going to call her about my DX and then ask around. She said maybe she could get me a better GI.

I have never seen a dietician before. Hopefully, whoever I see will know more about food intollerances and sensitivities? She's affiliated with the Hospital too.

[sariesue]

Dr's are limited on what tests that they can run until they have run other tests first. Is it possible that your insurance won't cover the hashimoto's test until your thyroid levels actually are off? Many times insurance companies won't cover expensive diagnostic tests until the earlier tests have shown there is a problem. I ask this because according to the Mayo Clinic, a TSH test is part of a diagnosis of Hashimoto's along with the antibody test. However, the antibody test alone does not tell you everything because treatment depends on your actual thyroid hormone levels. Get the TSH level done and go from there, if it comes back abnormal ask again for the hashi's test or ask for a referral to an endocrinologist. They would almost definitely require a TSH if not a complete thyroid panel. Mine required a complete thyroid panel to be completed before my initial appt to go without it was seen as a waste of both my and dr's time.

I know that my dr couldn't do the thyroid scan until my thyroid levels were high even though, I had problems that could be related to thyroid problems, a family history of thyroid problems, and was taking a medication that is known to cause permanent thyroid damage. This was because my insurance company wouldn't pay for the test until the simple and cheap blood test came back abnormal and I have wicked good health insurance.

[Bubba's Mom]

I'm guessing maybe the insurance regulations are the reason the Dr. said no to the Hashi's test?

Actually, I have symptoms that seem like I'm flip-flopping between hypo and hyper thyroid. I don't know if knowing my TSH level will help diagnose or not?

None of this seems to be easy?

Does anybody know how I might find a Dr. that has treated Celiac and is familiar with the latest findings? So far, I seem to have no luck in that department.

I really appreciate your responses. Sometimes I fear that I am oversensitive as has been suggested to me in the past? This new PCP "kid" just really seemed more interested in disputing my DX rather than help me deal with it and whatever other food intollerances I have!

[GlutenFreeManna]

Does anybody know how I might find a Dr. that has treated Celiac and is familiar with the latest findings? So far, I seem to have no luck in that department.

I searched the board for Toledo and found several old posts about their support group, but nothing recent. This post: https://www.celiac.com/gluten-free/calendar/1/event-2671 From 2009 gives the name of a dr and also says they were meetign at a public library. Perhaps you can look up that dr named and also check with the library to see if they are still meeting there? It's a palce to start anyway.

[Bubba's Mom]

Thanks SO much for searching in my behalf. I found that Dr. Naddaf is a pediatric GI. He's affiliated with the Mercy hospitals here in our town. They are the rivals of the Hospitals that are in plan for my insurance. I'm sure it wouldn't be an option to see him?

It appears that at one time there was a Celiac support group here? I tried contacting several people who's names and e-mail addys I found, but nobody replied back. There was another gal here who was trying to make contact with them as well, but no luck. We both were DXed by the same GI, just a few weeks apart. At least she got her DX while hospitalized so she got an info packet. I got nothing.

[GlutenFreeManna]

Thanks SO much for searching in my behalf. I found that Dr. Naddaf is a pediatric GI. He's affiliated with the Mercy hospitals here in our town. They are the rivals of the Hospitals that are in plan for my insurance. I'm sure it wouldn't be an option to see him?

It appears that at one time there was a Celiac support group here? I tried contacting several people who's names and e-mail addys I found, but nobody replied back. There was another gal here who was trying to make contact with them as well, but no luck. We both were DXed by the same GI, just a few weeks apart. At least she got her DX while hospitalized so she got an info packet. I got nothing.

Can you go back to the GI that diagnosed you? I know referrals usually work the other way around, but perhaps he/she can reccomend a PCP that will be more helpful in testing you for hashi's? Or maybe he can test you for hashi's as part of follow-up care for celiac diagnosis? Just throwing things out there. I don't know what all your insurance covers. It might also be better if you can look for a D.O. dr instead of a M.D. Both recieve the same medical trained but D.O.s are usually more wholistic and more likely to know about things like food intolerances.

[Bubba's Mom]

I'm a bit concerned what reaction the GI will have if this new PCP calls her. If her DX and lack of info is being questioned she may not want to be helpful? Plus..I have a $35 copay if I go see her. I'm not scheduled to go back until next year.

I meet with a dietician today, so will ask her if she knows any Dr.s that have other patients and are knowlegeable, and if the new PCP asks around for a "better" GI it might be a good idea to go and ask them?

I find it scary that with this disease I'm in charge of my own care with my PCP in charge of ordering any blood work I might need to check vitamin/mineral levels, when she is uncooperative.

I did an internet search of soy intollerance symptoms and found numerous sites with lists. My symptoms that she said "couldn't be caused by soy" are all on the lists! I printed them off and thought I might give her a copy when I go back to see her in 5 weeks. I don't know if she'll be receptive to that?

She wants me to come in to go over my meds. She doesn't like some of the older ones I've been on for years with good success. That sounds like it could be a disaster too?

I was kind of excited to be getting a new Dr. because the last one's attitude was not good. I hoped for better. I'm just so totally frustrated and down I feel like curling up in ball and crying.

My hubby was assigned a DO for injections in his knees at the same office. We thought it meant Dr. of Osteopathy? What is a D.O.?

[pricklypear1971]

Generally D. O. Means doctor of osteopathy. Generally, they are supposed to be more open, friendly but sometimes they are not.

[Bubba's Mom]

Thanks! I was thinking maybe they slipped a new kind of Dr. into the mix?

[GlutenFreeManna]

Thanks! I was thinking maybe they slipped a new kind of Dr. into the mix?

DO's have been around for a long time. They have the same trainign as MD's. They may not all be great but as far as bedside manner I have liked the DO's I have seen better than the MD's I have seen. DO's seem to listen more and look at the whole picture. The biggest thing I have noticed is that instead of just saying, "okay I'm going to order these tests and we'll see if we find anything..." My DO dr asks me questions and discusses with me the best tests to order and the reason for ordering them. She makes sure I'm on the same page and understand why she wants to do those tests. She also will check with my insurance while I'm in the room and tell me if my insurance doesn't cover something. So it's not her refusing to do the tests-- it's my call if I want to do a test my insurance doesn't cover--Dr's can do any test regardless of your insurance coverage. They just won't USUALLY do soemthing your insurance doesn't cover because A. They don't want you upset at the cost without insurance and B. They want to make sure they get paid. Just don't forget that the dr works for you!

[sb2178]

I'd take in some info from really classic medical sources: Mayo Clinic (search as a provider, rather than as a patient), Dr. Green's book on Celiac (try your local library), University of Chicago Celiac Center, etc. Flag the sections that mention relationships with other autoimmune diseases, make a list of your symptoms and concerns, and point out the common nutrient deficiencies that should be tested for. If she can make a case for it, she can probably insist that it is medically required. You do need to give her the ammunition, though, as she's a beginner doc.