HELP! What Celiac Clinic Should I Go To & How?

[Sara789]

PLEASE HELP. I'm not getting the care I need locally and am planning a trip to a celiac center.

     1.) What celiac center did you go to (Mayo Clinic, Univ of Chicago Medicine Celiac Disease Center, Beth Israel Deaconess Celiac Center, etc)?

     2.) Why did you pick that celiac center over the others?

     3.) Are there any doctors you recommend? Any doctors to stay away from?

     4.) Did you think it was worth the time, money, and testing?

     5.) If out of town, how did you organize your trip?

     6.) Was the staff helpful in organizing your trip?

     7.) How much did you spend for the whole trip?

     8.) What did you wish you knew before you made your trip?

     9.) Any other advice?

THANK YOU!

[cyclinglady]

3 hours ago, Sara789 said:

PLEASE HELP. I'm not getting the care I need locally and am planning a trip to a celiac center.

     1.) What celiac center did you go to (Mayo Clinic, Univ of Chicago Medicine Celiac Disease Center, Beth Israel Deaconess Celiac Center, etc)?

     2.) Why did you pick that celiac center over the others?

     3.) Are there any doctors you recommend? Any doctors to stay away from?

     4.) Did you think it was worth the time, money, and testing?

     5.) If out of town, how did you organize your trip?

     6.) Was the staff helpful in organizing your trip?

     7.) How much did you spend for the whole trip?

     8.) What did you wish you knew before you made your trip?

     9.) Any other advice?

THANK YOU!

What are your goals and expectations in planning this trip?  What do you think the celiac experts are going to tell you?  

 You have celiac disease (biopsy confirmed with partial villi blunting).  I am assuming that you had elevated celiac antibodies.  You were diagnosed about three to four months ago and have glutened yourself a few times since going gluten free (totally common and normal!)

What isn't your current GI doing that is making you unhappy? 

I just want to remind you that it takes a lot of TIME to heal.  Time to learn the diet and not to gluten yourself.  Time to wrap your head around your diagnosis (grieve, etc.)  What most doctors fail to tell you is that it takes a year or longer to heal.  Really.  I kid you not.  Ask anyone around here who walks the celiac walk.  Sure, some researchers think that villi can grow back in just a few short weeks.  But they do not take into consideration the gluten free diet's steep learning curve.  You have glutened yourself and chances are you are going to get nailed again.  It happens to even the seasoned members.  

Let's pretend  you have another issue.  Your doctors are first going to want to rule out that celiac disease as the cause of your current issues.  They can do this by testing your antibodies to insure they are in a downward pattern (could take a year or longer for them to get back into the normal lab range).  This test is often done three months after a diagnosis, but some doctors wait until the six month mark?  Why?  Perhaps they are aware that their patients tend to gluten themselves in the early months.  It might discourage patients to give up theGF  diet if they do not see radical improvement.  

My GI follows celiac follow-up guidelines.   My PCP is clueless, but she runs the tests that I need when I see her.  Is it the very best support?  No, but I do not expect my doctors to hold my hand.  They have other patients who are much sicker than I ever was.  

Please do not take offense.  I am just trying to figure out why you would want to go to a celiac center when you have already been formally diagnosed.  

[ironictruth]

I am going to Mass General in Boston to rule out celiac. I picked it because one of the docs is a lead researcher and it is a 5.5 hour drive. Plus they did a virtual visit with me which was great. 

Admittedly, my first actual visit was short and it felt like a long haul for a quick 20 minutes. I spent about $250 on hotel, gas, food and tolls. I stayed right outside of Boston and booked the MGH rate. I am looking at other options if I go again.  I was gluten free at the time so there was not a lot to do at the appointment. My insurance also would not pick up $125 of the visit for some reason. 

I cannot give you an overall about time, money etc. as I am still waiting to hear if we are doing another endoscopy. I am hoping they rule it in or out as it has been unofficially diagnosed by two local docs and it is starting to get very frustrating for me as others say it is not celiac and I still feel badly. I do really like the nurse who calls me. She is very receptive. 

I can keep you posted!

I also looked at Columbia as I live in NY but they did not accept my insurance and Boston is actually just as easy of a drive for me. 

[Sara789]

@ironictruth - Thank you for the information! I think this can help a lot of us who are interested in finding medical professionals knowledgeable about celiac disease and the myriad of complications that can be associated with it. Good luck with your visits. I hope you find the answers you need to feel better.

I tried to find a place that already had this information, but didn't find one. If anyone knows of a thread that has this information, please share.

[TexasJen]

I have entertained the idea of going to a celiac center as well.  While I am very grateful to my GI for suspecting Celiac and making a very timely diagnosis, the treatment part of his therapy is severely lacking.  He basically called me on the phone, told me it was celiac, and referred me to the internet. See me in 1 year!

I feel a little lost about some of the details of the gluten free lifestyle.  However, I am actually not sure that anyone has the answers. But my theory is that it never hurts to ask more questions!

That being said, my mom lives in Los Angeles. I don't go see her often for a variety of reasons (mostly she is where I live all the time) but I am thinking I might try to go to the UCLA celiac center this summer. I've already checked and they accept my insurance. I can stay with my mom so the expense of the trip is not that much.  I haven't gotten down to the nitty-gritty of planning the trip so I'll let you know how it works out.....

[GFinDC]

I went to University of Maryland to see Dr. A. Fassano, because it was close to my home.  So not much more cost than a few hours off work and driving there.

Doctors can't do much for celiac patients.  The best treatment for celiac disease is the gluten-free diet.  And that is the patients own responsibility.  Beyond that, there is vitamin deficiency testing, or treatment for associated conditions like DH or gluten ataxia.

Here's a list of some celiac centers.

Open Original Shared Link

I don't know where you live but I'd check with any local celiac groups before deciding to go on a long trip.  It may be there is as good celiac doctor in your area but you don't know about them.

[ironictruth]

Excellent point GFinDC about contacting local groups! 

You might be able to try searching for a provider here as well: 

Open Original Shared Link

 

[Sara789]

@TexasJen - I'm so glad you got a diagnosis, but I'm sorry your GI hasn't helped you more than "see you in 1 year." My GI was terrible, despite being listed as a "Celiac GI Specialist" on the Celiac Foundation website. She just stared at me when I asked questions and told me erroneously incorrect information about celiac (incorrect according to the 5 books and countless peer-reviewed medical journal articles I had binge read before my appointment).

Good luck with UCLA. I'd love to get your impression on their celiac center and your experience there.

I'm all about more information!  

[Sara789]

Medical Celiac Centers:

UCLA Digestive Diseases Celiac Disease Program (Los Angeles, CA): Open Original Shared Link

Mayo Clinic (Phoenix/Scottsdale, AZ; Jacksonville, FL; Rochester, MN): Open Original Shared Link

Beth Israel Deaconess Celiac Center (Boston, MA): Open Original Shared Link

University of Cicago Celiac Disease Center (Chicago, IL): Open Original Shared Link

University of Michigan (Ann Arbor, MI): Open Original Shared Link

BeyondCeliac.org List of Celiac Centers, Labs, & Alternative Resources: Open Original Shared Link

[cyclinglady]

6 minutes ago, Sara789 said:

@TexasJen - I'm so glad you got a diagnosis, but I'm sorry your GI hasn't helped you more than "see you in 1 year." My GI was terrible, despite being listed as a "Celiac GI Specialist" on the Celiac Foundation website. She just stared at me when I asked questions and told me erroneously incorrect information about celiac (incorrect according to the 5 books and countless peer-reviewed medical journal articles I had binge read before my appointment).

Good luck with UCLA. I'd love to get your impression on their celiac center and your experience there.

I'm all about more information!  

I still do not understand.  Are you questioning your diagnosis or are you unhappy with the aftercare/management of your celiac disease?  

[cyclinglady]

8 minutes ago, Sara789 said:

Medical Celiac Centers:

UCLA Digestive Diseases Celiac Disease Program (Los Angeles, CA): Open Original Shared Link

Mayo Clinic (Phoenix/Scottsdale, AZ; Jacksonville, FL; Rochester, MN): Open Original Shared Link

Beth Israel Deaconess Celiac Center (Boston, MA): Open Original Shared Link

University of Cicago Celiac Disease Center (Chicago, IL): Open Original Shared Link

University of Michigan (Ann Arbor, MI): Open Original Shared Link

BeyondCeliac.org List of Celiac Centers, Labs, & Alternative Resources: Open Original Shared Link

I live in So Calif.  Nice to see a center at UCLA.  This group or at least website was not around when I was diagnosed four years ago.  The closest celiac center was in San Diego and was affiliated with the Warren celiac research center.  

[pixiegirl]

I was diagnosed so long ago that I didn't have any of the options that are available today. I curious about if you are trying to be diagnosed as Celiac, if you are just unsure what being on a celiac diet involves or are you gluten free and not feeling better?

My doctor at the time of my diagnosis told me he was sure I didn't have it because it was so rare (remember this was a while ago) and he furthermore went on to tell me that if I did have it I'll be sick a lot because no one can fully stick to the diet. 

I got a new doctor, got diagnosed and have never, knowingly, had gluten since. I did all the research myself and figured it out without any help other than the internet and groups like this one. Just stop eating gluten!

Sadly doctors are not always filled with information. I know around here we have a local celiac group, very helpful, and a few dietitians that specialize in Celiac diets. I attended some of the local Celiac meetings and used this group extensively. 

I hate that people say "it's so hard to stick to a Celiac diet."  Maybe they didn't feel quite as bad as I did, it wasn't hard for me. Of course, I miss some things that I can't really get gluten free (sourdough bread is not the same) but I don't find it difficult to be gluten free I feel so awful, for so long when I get glutened.

This is a great group that will be willing and able to help you on your journey!

[Gemini]

On 4/4/2017 at 6:08 AM, pixiegirl said:

I hate that people say "it's so hard to stick to a Celiac diet."  Maybe they didn't feel quite as bad as I did, it wasn't hard for me. Of course, I miss some things that I can't really get gluten free (sourdough bread is not the same) but I don't find it difficult to be gluten free I feel so awful, for so long when I get glutened.

This is a great group that will be willing and able to help you on your journey!

I have to agree with your statement, pixiegirl!  It was never hard for me to do this but I love to cook and alter recipes and I get so damn sick when I get cc'd that all gluten food does not even appeal to me.  Maybe it's where we live...I am in Mass. also! 

[pixiegirl]

Ha! Maybe it is MA! I don't mean to make light of the issue, I know for someone just diagnosed it all can seem daunting but it took me 11 years to get diagnosed and by that time I was really sick. I thought, at times, that I was dying so when someone told me, "hey you can feel all better by not eating gluten." Well, that just seemed simple to me at that point. 

[Scuff]

On 4/4/2017 at 6:08 AM, pixiegirl said:

 

I hate that people say "it's so hard to stick to a Celiac diet."  Maybe they didn't feel quite as bad as I did, it wasn't hard for me. Of course, I miss some things that I can't really get gluten free (sourdough bread is not the same) but I don't find it difficult to be gluten free I feel so awful, for so long when I get glutened.

This is a great group that will be willing and able to help you on your journey!

I'm still getting diagnosed, but stuck to a whole food elimination diet for 2 months before going back on gluten for testing. Sure, it got boring, but I can't wait to cut it all out again. Someone (without known celiac, but with AI issues) said to me recently, "I feel best when I eat only meat and veggies, but I don't want to inconvenience anyone."  I don't care who's inconvenienced. I will never go back to feeling like I did as long as it's in my control. And to answer the OP, nice to see my dr on Sara's celiac list. I just got a dr recommendation from a friend, so it wasn't intentional.