• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

My Search For A New "celiac Savvy Dr"
0

8 posts in this topic

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!! :)

0

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


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!

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites
Ads by Google:


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. :)

0

Share this post


Link to post
Share on other sites

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...

0

Share this post


Link to post
Share on other sites




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!! :)

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      107,313
    • Total Posts
      935,425
  • Member Statistics

    • Total Members
      64,971
    • Most Online
      3,093

    Newest Member
    johnojohno
    Joined
  • Popular Now

  • Topics

  • Posts

    • Think about this.  I have only had my daughter tested for celiac disease.  She tested negative.  She will need to be retested sometime in the future or when symptoms develop.  But genetic testing?  This might impact her insurability in terms of health and life.  I do not have the answers, but I would research this before having everyone tested.  Some 40% of the population carries the genes to develop celiac disease.  Only a very few actually develop it.  Insurance companies will deny you for all kinds of lame reasons.  Just be careful. 
    • I think for adults who are disabled or have really low incomes, they should be allowed to keep their Rx.  But anyone else who is an adult and has a job, they should pay their own way.  There are so many options available in the UK now and their gluten-free options are really good.  You have better bread than we do in the States and the cost in many instances is lower than it is here.
    • Ennis....pertaining to food deductions, you can deduct the price difference between those items that you would have to buy a gluten free version of because there are no other options......like all the mixes and things mentioned.  Chips, not so much, as many chips are already gluten free so it would not apply.  Those would be your safest bet as you probably will be audited for doing this.  That's how the IRS works. If there are big changes regarding deductions, that will raise a red flag and your chances of being audited go up.  You sound like you keep good records so don't sweat it if you will gain a benefit in income from doing so.  You do realize that you have to have a minimum of 10% of your adjusted gross income to even begin to deduct anything?
    • Hey guys The topic title is actually misleading a little, I had an endoscopy in december, was told it was a little inflamed and they were pretty sure it wasnt celiacs, just a minor gluten intolerance.  Long story short, its now July, had to cancel appointments due to moving to london. tried ringing for results for a long time. Nothing. Last week, find out I am celiac with some eroded Villi.....from December Anyway. I have been gluten free for 2 weeks. I have had problems with kidneys aching, stomach pains, bladder pains, all sorts. before hand, I cut the gluten down, but was not entirely gluten free. I was told that it was early stages.    Gluten Free I am not finding so hard, but I am waking up EVERY morning with stomach pains still. Or bladder, or whatever. Ill go back to the docs soon. Ive been having a lot of fruit and I am wondering if the fibre is not letting my stomach settle. Also that dairy products might be causing the issue. I was basically trying to absorb some nutrients to get rid of my hurrendous exhaustion, I cant be malabsorbing as I still have Villi.    Any advice, anything would be great
    • Thanks for the info.  I will ask the GI about my twin sister and nephews to see if they need to be tested regularly too.  I'm hoping our insurance will pay for gene testing also to help rule any of us out if possible.
  • Upcoming Events