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Newly Diagnosed, Have Questions

Vickie Bedford

By Vickie Bedford
in Doctors

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Vickie Bedford Rookie
Vickie Bedford
Posted

I was just recently diagnosed and I am a little in shock. From what I have read on the web, you need to change

everything from food to makeup to medicine. Does anyone know if there are doctors that specialize just in Celiac Disease and if there are any in the Austin area? I need more answers than my GI doctor gave me.

VBedford

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ShayFL Enthusiast
ShayFL
Posted

You will likely find MORE and BETTER information in this forum than with a doctor. But you can look for one. Hopefully someone will chime in in your area.

Not everyone has to worry about make up. Basically if it can get into your mouth, you should make sure it is gluten-free. For instance, I only paint my toenails and never my fingernails, so I dont worry about polish. I dont eat with my feet. :)

ohsotired Enthusiast
ohsotired
Posted
I was just recently diagnosed and I am a little in shock. From what I have read on the web, you need to change

everything from food to makeup to medicine. Does anyone know if there are doctors that specialize just in Celiac Disease and if there are any in the Austin area? I need more answers than my GI doctor gave me.

VBedford

I'm not sure I can help you with doctors, but I wanted to say hello from Dallas.

I have family in Austin, so perhaps I can ask around for you.

I'm not dx'd yet, but both my sister and I are undergoing testing.

I know it all seems very overwhelming (and I haven't even started yet) but try to take it one step at a time.

I agree with Shay that you will likely find better info here than a doctor could give you, but you may end up being one of the lucky ones that finds an awesome dr that knows all about this!

Please feel free to PM me if I can be of any help!

Egenglert Rookie
Egenglert
Posted

Hi! I was just tested by my General Practitioner, but my mom was diagnosed by Dr. Craig Lubin (I think that's the correct spelling, couldn't hear very well on the phone) though he is another gastroenterologist and she says he was very helpful in answering her questions. I don't think it should be too hard to find a Celiac Specialist in the Austin area though, so if you don't want to see another GI, you could always try the phone book... I'm sorry I couldn't find a specialist for you though.

Vickie Bedford Rookie
Vickie Bedford
Posted
  • Author
Hi! I was just tested by my General Practitioner, but my mom was diagnosed by Dr. Craig Lubin (I think that's the correct spelling, couldn't hear very well on the phone) though he is another gastroenterologist and she says he was very helpful in answering her questions. I don't think it should be too hard to find a Celiac Specialist in the Austin area though, so if you don't want to see another GI, you could always try the phone book... I'm sorry I couldn't find a specialist for you though.
happygirl Collaborator
happygirl
Posted

Welcome to the diagnosis of Celiac, and to this online forum.

If you have specific questions, I'm sure others will happily pitch in to help answer them. :)

Some good, reliable resources (besides this forum) include:

www.celiacdiseasecenter.columbia.edu

www.celiacdisease.net

www.celiac.org

www.celiaccentral.org

You may want to see if there is a support group in your area. They may have recommendations for good doctors. Here is a list of the 3 main national Celiac groups that may have a branch in your area:

Gluten Intolerance Group: Open Original Shared Link

Celiac Disease Foundation: Open Original Shared Link

CSA: Open Original Shared Link

ohsotired Enthusiast
ohsotired
Posted

To extend a bit further on the local support group.........

Looks like there's a Open Original Shared Link in Austin.

Or you could check out Open Original Shared Link to learn more about the group.

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CeliBelli Newbie
CeliBelli
Posted
I was just recently diagnosed and I am a little in shock. From what I have read on the web, you need to change

everything from food to makeup to medicine. Does anyone know if there are doctors that specialize just in Celiac Disease and if there are any in the Austin area? I need more answers than my GI doctor gave me.

VBedford

Vickie,

I was just diagnosed in December, and understand how you feel. Unfortunately, like most Celiacs, I've found the medical community is woefully short of doctors who understand Celiac Disease, much less specialize in it. The best resource I've found on how to adjust life and cope is a book by a woman Celiac named Jax Peters Lowell entitled The Celiac Bible. With great humor Ms. Lowell goes into great deal on how to adapt all aspects of life and how to cope with grace. It was one of the first books I bought, and has been indispensable.

CeliBelli

  • 3 weeks later...
mslee Apprentice
mslee
Posted

Hi

I live in Austin and am newly diagnosed, my Gastro Dr is Dr Stassen. I have only seen him twice

(well 3 times counting the colonoscopy but i was thankfully out for that one -_- )

but he has been very good. He seems compassionate and kind (not always easy to find in a Dr) and works with a large group of Gastroenterologists I figure many minds available are better than only one when it comes to getting to the root of a tricky problem.

also he is very experienced and from Ireland, Im finding many with celiac are of Irish heritage

here is a link ....

Open Original Shared Link

good luck!

lsmall05 Newbie
lsmall05
Posted

For me, the key was finding out what I can tolerate. YES, eating gluten is bad for me, and does damage to my system. As I venture on my Gluten free life I find it gets easier and easier. I desire that cake a little bit less and worry about it all less. I fill my house with Gluten free and know that I can always go there!

I lived in a littled box eating grilled meat and baked potatoes for a few months, but then got some rice pasta, etc. Now, if i can find the ingredients I can make just about anything.

Learn to cook if you don't already. You'll impress people with your new healthfulness and abilities while knowing EXACTLY what you are putting in your body.

Going out has got to be the hardest part for me. Some days its just not worth the annoyed waiters, and the unknows that cause anxiety. learn where and what you can eat and go from there. Grilled chicken and a baked potato are by far the best way to go if you are feeling anxiety and are in a group. it will save you everytime!

  • 4 weeks later...
mslee Apprentice
mslee
Posted

Hi again....I so far do like my dr (see post above) but....

as I've been doing research I ran across several folks from austin who like Dr Lubin

Open Original Shared Link

sounds like he helped provide 300 free celiac screening tests for the celiac awareness run tomorrow in austin

Open Original Shared Link

i just found out about this

hope it helps!

  • 4 weeks later...
mslee Apprentice
mslee
Posted
Hi

I live in Austin and am newly diagnosed, my Gastro Dr is Dr Stassen. I have only seen him twice

(well 3 times counting the colonoscopy but i was thankfully out for that one -_- )

but he has been very good. He seems compassionate and kind (not always easy to find in a Dr) and works with a large group of Gastroenterologists I figure many minds available are better than only one when it comes to getting to the root of a tricky problem.

also he is very experienced and from Ireland, Im finding many with celiac are of Irish heritage

here is a link ....

Open Original Shared Link

good luck!

I like Dr Stassen as a person and he seems to be a good doc.

But I now know he does not specialize in Celiac so Lubin may be a better choice. Stassen is capible of Dx Celiac, if you do seem him...just not his specialty.

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