Where Do I Take My Daughter? We're In Al....

[TCA]

My son was just diagnosed this week (after 2 years of testing) with Celiac. We were sooo relieved to finally find it since we had suspected it for some time.

Ou daughter is 9 mos. old and was born with a congenital heart defect and had her first surgery at 9 days old. She's due for her second surgery this April. She had HORRIBLE GI issues after they insisted we put her on formula to fortify the breast milk I was pumping and giving her via feeding tube for extra calories. She did not react well at all. At first she was listless, then started loosing weight, then started projectile vomiting 20+ times a day. She had a Nissen procedure to correct the vomiting, against my judgement, but 5 doctors said she could die without it. It was horrible. She developed a hiatul hernia from all the vomiting, which they included in the surgery. It came undone within a month because she was still wretching. I finally stopped listening to the doctors, took her off of all supplements, and went on a gluten-free diet. The improvement was AMAZING. The vomiting stopped, she started gaining weight, and she's happy again. I just hate I didn't do it sooner. The hernia is still giving her so much touble, though. She gags so easily and it takes so long for her stomach to slip back into place because it is a sliding hiatul hernia and part of her stomach actually slips out of her diaphram. We need to get something done for this before the next heart surgery, but we don't know where to go. We've heard good things about Cincinnati and Maryland, but I wanted to ask all of you. We live in North Alabama, but are willing to go anywhere that they can help her. She needs a miracle and a great pediatric GI with vast knowledge of Celiac. Please pray for her and let us know if you know of any good Docs anywhere. we also need to go to a hospital where they can handle her heart issues should anything come up (heaven forbid).

Thanks so much!

[Rachel--24]

Hi,

I can't recommend a doctor for you but just wanted to say I'm sorry for all you've gone through with your daughter. I will keep her in my prayers.

[Pattie]

There are pedicatric specialists that can help you. The Washington DC/Baltimore area has several university affliated hospitals with physicians managing celiac programs. One in particular that I would recommend is:

Alessio Fasano, M.D.

Professor of Pediatrics, Medicine, and Physiology

Director, Mucosal Biology Research Center

University of Maryland School of Medicine

Health Science Facility II Room S345

20 Penn St.

Baltimore, MD 21201

Tel. 410-706-5501

Fax 410-706-5508

e-mail address: afasano@mbrc.umaryland.edu

I was very impressed that this physician got right on the phone with my daughter-in-law to answer her questions. Talking to him and his staff would be a good starting point for you.

Also explore other hospital affliated programs in the DC area: Johns Hopkins Medical Center, Georgetown Medical Center, and especially The National Childrens Medical Center.

It is very important also that the doctors are also autoimmune disease specialists.

You'll have to read and learn and become fluent about Celiac, autoimmune diseases, types of testing, nutrition, absorbtion, vitamin suppliments, etc. This will be a lifelong mission for you to ensure that your children get the proper medical care, treatments, and especially nutrition. Quality of life for your children is so important.

My heart goes out to you. Just know that there are people who can help, and lots of us who will provide support to you.

If you care to communicate further, my email address is: Mist7981@aol.com

[TCA]

There are pedicatric specialists that can help you. The Washington DC/Baltimore area has several university affliated hospitals with physicians managing celiac programs. One in particular that I would recommend is:

Alessio Fasano, M.D.

Professor of Pediatrics, Medicine, and Physiology

Director, Mucosal Biology Research Center

University of Maryland School of Medicine

Health Science Facility II Room S345

20 Penn St.

Baltimore, MD 21201

Tel. 410-706-5501

Fax 410-706-5508

e-mail address: afasano@mbrc.umaryland.edu

I was very impressed that this physician got right on the phone with my daughter-in-law to answer her questions. Talking to him and his staff would be a good starting point for you.

Also explore other hospital affliated programs in the DC area: Johns Hopkins Medical Center, Georgetown Medical Center, and especially The National Childrens Medical Center.

It is very important also that the doctors are also autoimmune disease specialists.

You'll have to read and learn and become fluent about Celiac, autoimmune diseases, types of testing, nutrition, absorbtion, vitamin suppliments, etc. This will be a lifelong mission for you to ensure that your children get the proper medical care, treatments, and especially nutrition. Quality of life for your children is so important.

My heart goes out to you. Just know that there are people who can help, and lots of us who will provide support to you.

If you care to communicate further, my email address is: Mist7981@aol.com

Thanks so much! both of you are so sweet for your encouraging words and information. I actually called Dr. Fasano's office a few weeks ago. He was supposed to get back to me, but never did. I guess I need to keep trying. We have so many Autoimmune diseases in both sides of our family. My husband is a Type 1 diabetic, as is his brother. His grandparents both have had colon cancer and "sour stomachs" as they call it. His grandad has horrible osteoporosis and his grandmother has diverticulitis. He had the projectile vomiting as a baby and failure to thrive, but his blood test for celiac disease was negative. I still wonder, though. On my side of hte family we have thyroid disease, fibromyalgia, kidney disease, heart diease, diverticulitis, ulcers, etc. I guess our kids didn't have a chance. We never knew until a few months ago how all of these things could be related to Celiac. I hope Dr. Fasano can look at all of this and come up with something to help Megan. She's so precious and it breaks my heart to see her in so much pain. If he can't, maybe he will know someone who will.

Does you daughter live in that area?

Thanks,

TCA

[Pattie]

Thanks so much! both of you are so sweet for your encouraging words and information. I actually called Dr. Fasano's office a few weeks ago. He was supposed to get back to me, but never did. I guess I need to keep trying. We have so many Autoimmune diseases in both sides of our family. My husband is a Type 1 diabetic, as is his brother. His grandparents both have had colon cancer and "sour stomachs" as they call it. His grandad has horrible osteoporosis and his grandmother has diverticulitis. He had the projectile vomiting as a baby and failure to thrive, but his blood test for celiac disease was negative. I still wonder, though. On my side of hte family we have thyroid disease, fibromyalgia, kidney disease, heart diease, diverticulitis, ulcers, etc. I guess our kids didn't have a chance. We never knew until a few months ago how all of these things could be related to Celiac. I hope Dr. Fasano can look at all of this and come up with something to help Megan. She's so precious and it breaks my heart to see her in so much pain. If he can't, maybe he will know someone who will.

Does you daughter live in that area?

Thanks,

TCA

[Pattie]

I live in South Florida now, but I am from Washington, DC. My whole family still lives in the DC area. I am a great resource for anything in the DC area.

Please do call the other medical centers too.

My daughter-in-law is a medical professional working on a research program at the Univ. of MD Medical Center. She can get easily get in touch with Dr. Fasano. Please send me via email your contact information so that I may forward it to the proper sources. Hopefully, I can help to expedite a communication between you and Dr. Fasano.

My email address: Mist7981@aol.com

Regards,

Pattie

[TCA]

I live in South Florida now, but I am from Washington, DC. My whole family still lives in the DC area. I am a great resource for anything in the DC area.

Please do call the other medical centers too.

My daughter-in-law is a medical professional working on a research program at the Univ. of MD Medical Center. She can get easily get in touch with Dr. Fasano. Please send me via email your contact information so that I may forward it to the proper sources. Hopefully, I can help to expedite a communication between you and Dr. Fasano.

My email address: Mist7981@aol.com

Regards,

Pattie

I actually called Dr. Fasano's office this morning again. We're goindgto the ped GI here today to discuss these options. Dr. Fasano's office said he'd rather discuss things with our GI than me. I'm fine with that as long as we're making progress. I'll let you know what happens.

Thanks!!!

[lovegrov]

Cynthia Rudert in the Atlanta area is a top celiac doctor but don't remember if she sees kids.

richard

[floridanative]

I do think Dr. Rudert sees some kids in Atlanta but the problem with her is she see patients 10% of the time and travels the other 90%. And she does not accept insurance. Keeps her admin. cost down and of course if she's traveling around trying to educate docs about Celiac, she probably doesn't care if she gets tons of new patients since she probably couldn't see everyone who would flock to her if she took insurance. Just my two cents.