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My Search For A New "celiac Savvy Dr"

GladGirl

By GladGirl
in Doctors

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GladGirl Rookie
GladGirl
Posted

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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Harpgirl Explorer
Harpgirl
Posted

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!

notme Experienced
notme
Posted

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.

christianmom247 Explorer
christianmom247
Posted

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.

1974girl Enthusiast
1974girl
Posted

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.

  • 2 weeks later...
GladGirl Rookie
GladGirl
Posted
  • Author

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. :)

GladGirl Rookie
GladGirl
Posted
  • Author

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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GladGirl Rookie
GladGirl
Posted
  • Author

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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    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

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    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
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    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Scott Adams · Posted

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By trents · Posted

      Contact them.
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