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My Search For A New "celiac Savvy Dr"


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7 replies to this topic

#1 GladGirl

 
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Posted 04 June 2012 - 08:35 AM

So, my quest to find a primary care Dr. who "gets it" on Celiac has really been difficult to say the least for my area. I live in SW Florida, and have contacted the local Support Group for information concerning this quest. One of the co-ordinators answered my e-mail stating they really don't have one, that once they were diagnosed and told the treatment is gluten-free dieting...they are left on their own!! Yikes!

All the search engines in my quest turned up nothing in this category. Sad, but true! I ended up calling my nurseline of our insurance company and spoke with my nurse, Paula. She spent quite a bit of time with me on the phone letting me explain in short the history of my undiagnosed disease and the undeniable void in my own Primary Care Physician's knowledge of this area. She said that she and her group will do the search for me and send me a list of Dr's within a 30-40 mile radius of where I live. She did ask about the hemotologist who diagnosed me, and I told her that his comment was I was positive for Celiac and he would not need to see me again. She agreed with me on not really needing to see a gastro since the gluten free diet has allayed my pain and symptoms, but assured me that I would need a "knowledgeable" Dr to keep tabs on frequent nutrition testing and any prescribing of meds down the road, not to mention the normal bloodwork tests as well.

At this point, I feel a little relieved. Hopefully, I will find the right Dr who will listen and not "yell" at me, and not to prescribe a statin when liver enzymes are jeopardized as well as understanding the poison that gluten has become to my body.

If this concentrated effort of mine works, perhaps those of you who have a special "nurseline" within your insurance company will also be able to use that as a good source. I am still in amazement of how this works. With the percentage of us in this country who have this disease, the void in general practice and internal medicine Dr's knoweledgeable in this disease are "missing in action"!!

Wishing you all the best in our gluten-free journey!! :)
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#2 Harpgirl

 
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Posted 04 June 2012 - 10:23 AM

Thank you for the suggestion! Depending on how my appointment goes tomorrow with my GI dr, I may call my nurseline as well. Let me know if you find a good dr, because I live near SW Florida, the Tampa Bay area. I haven't seen my GI dr in a year, and never had much confidence in his knowledge of celiac because after he ran me through a battery of tests last year, he wanted to diagnose me with irritable bowel, until I remembered that my grandma has celiac. He hung everything on the blood test and since that came back negative, but I responded well to the diet, he said I was gluten intolerant and sent me on my way. I really want some better medical guidance!
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Gluten free 6/10/11
Negative blood test for celiac 7/7/11
History, genetics, and response to diet point to celiac anyway.

Syan rest wear
feasceaft funden, he s frofre gebad,
weox under wolcnum, weormyndum ah,
ot him ghwylc ara ymbsittendra
ofer hronrade hyran scolde,
gomban gyldan. t ws god cyning! -Excerpt from the prologue of Beowulf. :)

#3 notme!

 
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Posted 04 June 2012 - 11:18 AM

my (awesome) GI is leaving! moving! oh no! she really knew her stuff...

thanx for the idea - i think i DO have a nurseline on my bc/bs - i remember using it when our son was dx'd with diabetes and we got him a great endocrinologist <who harry absolutely loves so he is faithful to his check-ups. i am going to search on this forum and maybe post a thread anyway..... i am in the knoxville, tn area.
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arlene

misdiagnosed for 25 years!
just as i was getting my affairs in order to die of malnutrition...
gluten free 7/2010
blood test negative
celiac confirmed by endoscopy 9/2010

 

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#4 christianmom247

 
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Posted 04 June 2012 - 05:17 PM

I agree that it's so hard to find a doc who knows about Celiac. My GI doctor just gave me the endoscopy results that showed celiac and said I could talk to my celiac sister if I had any questions. So I went to my family doc, and he told me that some celiacs can eat wheat and others can't! That's all he had to offer me on the topic. :(

I was THRILLED to have an appointment today with a new internal medicine doctor, a young woman who actually knows about celiac! She ordered all the blood work to check my vitamin levels, scheduled a bone density test and a consultation with a nutritionist . . .

I've heard that the reason doctors don't know much about celiac is because there's no money in treating it since we don't need drugs, and the pharmaceutical companies provide so much of the training and research money.
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Diane

Blood test positive for celiac May 2012
Biopsy positive May 11, 2012
Gluten Free since May 12, 2012

Diagnosed with osteoporosis July 2014


#5 1974girl

 
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Posted 04 June 2012 - 05:43 PM

I was told the average doctor spent 15 minutes on it in medical school. This was told my a nutitrionist who had celiac. A doctor flat out told her that it was barely covered. It was rare. She has made it her mission to educate them! I have been lucky since it was my dd with celiac. It seems that pediatric GIs are more up to date on that stuff. Or maybe it is because it used to be considered a childhood problem.
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#6 GladGirl

 
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Posted 14 June 2012 - 12:46 AM

And now indeed, I got a list from the nurseline...it is short...only two (2) internal med Docs, but I called both offices. I think the one I would like to meet first is the one who seems to have an Medical Asst who was very understanding about my concerns. But her reaction to "celiac" seemed foreign to her by name...hmmmm...in any case, it is worth a try. Will have to update later. :)
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#7 GladGirl

 
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Posted 18 June 2012 - 07:24 AM

I agree that it's so hard to find a doc who knows about Celiac. My GI doctor just gave me the endoscopy results that showed celiac and said I could talk to my celiac sister if I had any questions. So I went to my family doc, and he told me that some celiacs can eat wheat and others can't! That's all he had to offer me on the topic. :(

I was THRILLED to have an appointment today with a new internal medicine doctor, a young woman who actually knows about celiac! She ordered all the blood work to check my vitamin levels, scheduled a bone density test and a consultation with a nutritionist . . .

I've heard that the reason doctors don't know much about celiac is because there's no money in treating it since we don't need drugs, and the pharmaceutical companies provide so much of the training and research money.

Hi, Christian Mom,

Well, I just got off the phone with the MA who works with my new selected Dr. She is an internal med Dr. and I will be meeting her for the first time tomorrow afternoon. Like you, I am hoping she has the "knowledge" your new young Dr. has. Praying for a good informational consultation and moving forward towards healing.

Let me know how you are doing in your progress...kind of nice to see how one another are doing in this quest.

Just FYI, I looked back at the copy of my liver biopsy performed 6 years ago, and when I allign the biopsy notes to Celiac...you would have thought someone would have received a "clue"!! Oh, well, onward and upward from here...
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#8 GladGirl

 
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Posted 20 June 2012 - 11:30 AM

Well, here we go! New Dr. recommended by my Insurance's Nurseline is Dr. Janice Nord, MD, Internal Medicine. She is part of a group called the Millenium Group in Southeast Florida. I met with her yesterday, she asked several questions, especially about the Hematologist I went to whom she also knows. I took copies of all my test results, and then her eyes really opened up when I told her the story of the other Dr. and his prescription for a statin that I did NOT take. She nodded her head when I told her that I realized I was "in trouble" going to that Dr. At this point, she has scheduled me for bloodwork on a Comprehensive Metabolic Pane, CBC, Complete Urinalysis,Lipid Profile, TSH, VIT B-12 and VITD. She has also scheduled me for a "Complete Physical" which I never had in the past 3 years seeing my other Dr. This will all take place next month in about 4 weeks.

We noticed on my other bloodwork, that my glucose is sliding upwards for some reason, even though my liver enzymes went down as well as my LDL and triglycerides, along with my weight loss of 20 lbs and my HDL went up a bit. Hmmmm...not good, need to definitely try and control my consumption of Carbs since that is probably why it went up...ugh! Thing is, my system does not digest well in the meat group wherein the protein lies...although I added some probiotics. Dr. Nord and I discussed that as well. Anyway, we will see, what needs to be attended to. I already take extra vitamins, but may need an adjustment.

Dr. Nord asked how I was doing on the gluten-free diet and I told her, it was not really that difficult for me since my hubby is diabetic, I was already used to making diet changes. So we are the SFGF household. I guess that's why I don't understand the increase in my glucose, because we watch our Carbs and sugar intake already. I have been intaking more fresh fruit and wonder if that could be it. Also, not good with eggs, so have been eating Chex cereal which is high in Carbs...oh boy, that is one big difference in my diet vs my hubby's, he does not eat cereal!! Guess I may have to look at eggs substitute or something. I can do it, just a bit difficult. I also take psyllium to combat constipation. Just once a day seems to be taking care of that area, so far.

Anyway, on my way I hope to a better controlled situation. Just really happy about my liver enzymes now almost normal!! :)
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