Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Places I Can Call For More Info About Celiac?
0

6 posts in this topic

Seeing my GI Doc in one week. My biopsies were negative, my blood test was a maybe, so I don't have celiac disease in his eyes. And I can't say I'm feeling much better yet either, which will be more poof to him.

Enterolab did say I have it, but he doesn't accept that. And he doesn't think I'm allergic to casein, since my reaction is the next day! Sigh, lol.

So does anyone know the numbers of Celiac research centers, or something like that, in which they know a lot about the disease? I'd like to try calling some places, to speak to someone who really knows the disease.. so I could at least be comforted by speaking to someone who knows a lot! And hopefully they'll be able to give an edcuated guess I could have it? I don't expect a doctor to say, yeah, you got it, over the phone, lol.

Or if anyone knows of any good medical articles that could help educate my doctor more about the disease, that'd be nice too? The kind a doctor would actually accept.. he seems open minded enough to do that.

Thanks for any responses! =)

0

Share this post


Link to post
Share on other sites


Ads by Google:

I've gone over six months without dramatic symptom improvement. I don't think symptoms are good at finding out if you have the disease or not.

0

Share this post


Link to post
Share on other sites

Alexolua: Since you did Enterolab tests, call or email Dr. Fine at Enterolab. I have talked to him on the phone and exchanged several emails wth him. He WILL call or write you back. He's very personable and caring and can answer your questions. He knows what you face with doctors' not accepting E-lab results. His caring attitude reassured me after I bought the whole (expensive) E-lab package of tests. His lab tech also sent me encouraging email responses to my inquiries. :D

BURDEE

0

Share this post


Link to post
Share on other sites
I've gone over six months without dramatic symptom improvement. I don't think symptoms are good at finding out if you have the disease or not.

Tell that to my GI Doctor, celiac3270! LOL I know that, he doesn't seem to. =)

Burdee, ah.. that sounds like an interesting idea. Think I'll try that! Though it's not that I don't believe Enterolab, I just want to get this doctor to accept I have it too! Be really helpful if he did, lol.

I have seen people mentioning places that specialize in research too, so was hoping for some ways to contact those places. Might get things from them, that my doctor might be more willing to accept.

Thanks for the replies you two.

0

Share this post


Link to post
Share on other sites

Celiac Sprue Association - website www.csaceliacs.org

If you choose to go gluten-free, they put out an annual Product Listing. You can also find support groups in your area on their website.

University of Chicago Celiac Disease Program 773-702-7593

My dd had postive anitgliadin, classic symptoms, but normal biopsy. I was initially relieved but when I stopped watching her intake, symptoms returned and worsened - we went gluten-free 5 days ago and I already see improvement. My point is sometimes you just have to see what works for you with/without a doctor's orders.

On Enterolab's site, there is research mentioned - about gluten sensitivity without celiac disease. Maybe you could check there for the article name and track the article(s) down.

0

Share this post


Link to post
Share on other sites




email Dr. Fine at Enterolab

I emailed him yesterday, like mentioned, and got a response back today!! Wow. Though, he kinda told me to go on the diet, while I mentioned I had been on it for 8 weeks.. lol.. but I'll forgive that since he responsed quick. Sent another, hopefully more clearer about what I'd like.

CarolynM -> Trying that now (tracking down articles).. but not too good at it! And thanks for the website and number. And yeah, if my doctor had his way, I'd be eating gluten and be "living" with IBS, lol. Just want to educate him. =)

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
      104,655
    • Total Posts
      921,622
  • Topics

  • Posts

    • Below is copied & pasted from this thread:   My celiac doctor is Dr. Syed Jafri, in Webster, TX (just south of Houston -- basically the Clear Lake City area), saved my LIFE.  I would recommend him to the whole, entire world.  I was desperately ill, and am still struggling, and he's a wonderful, sweet man who listens and is very proactive in helping you solve whatever problems you're having.  I wish all doctors were like him.  I have to fight and struggle with too many doctors to just listen to me and what I live with, day in and day out.  He's not like that.  Good luck to you.     There are recommendations on this thread too:  
    • I never worried about cross contamination because i was originally told i was just intolerant. after going gluten free i felt so much better up until this last march. dairy and fructose have been giving me problems but both lactose and fructose test came back negative.  this is what my gi doctor emailed me today 
    • Any place you know of to find more info? Seems like I am still in so much pain/bloat, I am not even sure if I would pick the right 5 foods!
    • Don't freak out worrying about other maladies yet. You would be absolutely amazed at the things that can/will resolve on the gluten free diet. Some take longer than others -- neurological seem to take the longest for most people but really, I guarantee, there will be things you had no idea or expectation of resolving will. There were tons for me and then there were things I sort of "woke up one day" & said, "hey, that's gone and that & that & that". Other, larger things had taken my attention so I hadn't paid attention to the smaller things until...... On the other hand, not everything is related to celiac but I bet you wouldn't find a handful of celiacs who didn't say something very similar to what I said above. Yes, thyroid problems are common with celiac but I'll also tell you there are/have been people on here who were hypothyroid before dx but after being gluten-free for a while they actually went back to normal thyroid numbers. My husband is one (yes, we both are celiac - it happens). He was on synthroid for 20 years or more. Guess what? He's not on it anymore. We've had his thyroid panel done several times since about a year gluten-free & he is no longer hypothyroid. 
    • Yes please, that'd be awesome Having a fun time trying to reply on my phone due to broken screen but will be back on tomorrow after results of doctor appointment to get to the bottom of why they've given me seemingly wrong advice re: next steps. Yup I'll admit to pity, anger, frustration and outright fear, been through the mill of emotions in this first week that's for sure. One thing before I go for that; back when I was self-diagnosing I wanted a full thyroid panel (T3, T4 etc.) and also ESR & CRP checks for vasculitis and similar maladies. Now it seems from my reading they can often follow celiac so my worry level of those has gone up a notch, more blood tests ahoy it seems? Main reason for worrying about those is the nearly constant tight / tender head I have at the moment. Top and sides of scalp. Could be the stress tensing the shoulders and occipital muscles at back of head but after the celiac diagnosis being missed I'm fearful of anything else being missed. Did anyone else have this tight head feeling at the start? Feels like the skin is being pulled inwards, sometimes goes down for a few minutes here and there and gets worse when sitting I think. I see the term "brain fog" a lot but luckily don't seem to have too much of that at present, this is more a physical sensation.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

    There are no registered users currently online

  • Member Statistics

    • Total Members
      61,655
    • Most Online
      3,093

    Newest Member
    bentcreekmom
    Joined