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Places I Can Call For More Info About Celiac?

Alexolua

By Alexolua
in Doctors

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Alexolua Explorer
Alexolua
Posted

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! =)

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celiac3270 Collaborator
celiac3270
Posted

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.

burdee Enthusiast
burdee
Posted

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

Alexolua Explorer
Alexolua
Posted
  • Author
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.

CarolynM Newbie
CarolynM
Posted

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.

Alexolua Explorer
Alexolua
Posted
  • Author
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. =)

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      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
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      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
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