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NewGFMom

Childrens Hospital Boston

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Hi there,

My son just tested positive for celiac disease, and I think we want to go to the celiac program at Children's Hospital in Boston.

Does anybody have any experience with this program? Do you have any specific doctor recommendations? My son is not even 4, so I really don't want to do the biopsy. I just want to do the diet and see how it goes, and it's very important to me to find a Pediatric GI that is sympathetic to that.

Thanks in advance,

Margaret

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We live an hour north of Boston, but I didn't know there even was a Celiac program at Children's. I would definately be interested in finding out more about it(mainly just for some support in our area). Our daughter has never had the biopsy done, just bloodwork. She has had an amazing response to the gluten free diet. It will be 2 years in november for us. I have basically gone at this disease alone, without doctors, just help from the great people on this board and our Celiac family members. Abby is a very healthy, happy little girl. We have chosen not to put her through the trauma of the biopsy (at least for now). I would love to find a pediatrician in our area that understands and supports celiacs. I am constantly trying to explain it to my pedi. I know more about it than he does, so I never ask his advice. It would be nice to have the reassurance. Anyway sorry to ramble on!

Best of luck,

Cali

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Hi

We live an hour north of Boston, but I didn't know there even was a Celiac program at Children's. I would definately be interested in finding out more about it(mainly just for some support in our area). Our daughter has never had the biopsy done, just bloodwork. She has had an amazing response to the gluten free diet. It will be 2 years in november for us. I have basically gone at this disease alone, without doctors, just help from the great people on this board and our Celiac family members. Abby is a very healthy, happy little girl. We have chosen not to put her through the trauma of the biopsy (at least for now). I would love to find a pediatrician in our area that understands and supports celiacs. I am constantly trying to explain it to my pedi. I know more about it than he does, so I never ask his advice. It would be nice to have the reassurance. Anyway sorry to ramble on!

Best of luck,

Cali

I'm sorry I don't have any advice to give on this but wanted to say that the odds of finding a doctor in a hospital program that will agree to treat, or even recognize celiac disease without a biopsy is probably pretty low. Check it out by all means but they will pressure you for a biopsy....it's what they do and why so many people go years with undiagnosed celiac disease.

I was diagnosed through blood work and opted out of the biopsy because my blood work was so high and I failed 5 out of 6 tests plus I was so sick I could not bring myself to eat gluten one more meal! My response to the gluten-free diet was life altering so I KNOW I have celiac disease, just like you two ladies figured it out for your kids. I can well imagine how hard it must be to go through this in today's society when you do things differently than mainstream medicine dictates. Let us know how this turns out, if you pursue it. I would be interested to know what reaction you get from the doctors there. How frustrating it is when you know more than the doctor!

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The first doc we saw didn't want to work with us. So, we're going to another in a couple of weeks. I know he has treated celiac w/o biopsy for another family in my town. I had a long talk with his assistant. I'm willing to biopsy in a couple of years when he's a willing partner in all this. But a 4 year old? I don't think so.

not really sure what the GI can do besides diagnose. But after 3 months into a gluten-free diet, I can see a lot of improvements. If my son gets any gluten at all, he's in a lot of pain and has the Big D for a couple of days, and is generally a foul tempered monster.

NOT going through that to satisfy an 'official' diagnosis.

Gold standard my butt! There are false negatives with the biopsy, just not false positives.

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We go to Children's - they were the ones to diagnose my daughter. I like her GI and I like the program and I love Children's Hospital (my daughter sees several specialists there, not just GI) but I highly doubt you'll find one of the GIs who won't want you to do a biopsy.

What I really wanted to tell you is that Children's has a great support group. I've found the people to be enormously helpful and nice and my daughter loves going to the meetings. The next one is 9/30. They're held at the Children's satellite in Waltham (I believe it's the old Waltham Weston Hospital). They publish a newsletter about four times a year and have three or four meetings a year. Like I said, I've found them to be invaluable.

I think you can probably reach them through the GI department at the hospital.

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Hi there,

My son just tested positive for celiac disease, and I think we want to go to the celiac program at Children's Hospital in Boston.

Does anybody have any experience with this program? Do you have any specific doctor recommendations? My son is not even 4, so I really don't want to do the biopsy. I just want to do the diet and see how it goes, and it's very important to me to find a Pediatric GI that is sympathetic to that.

Thanks in advance,

Margaret

Hi Margaret My son was just diagnosed with Celiac two weeks ago he had positive blood results for 2 years but the biopsy's were all nagative till this last one this last was positive. My son is 9 so this has been a huge change for him and very hard for me as well.

The first thing my doctor told me is until his biopsy come back positive we could absolutely not take him off gluten.

I makes the test more accurate .

I do have to say I was extremly scared for him having to have all these tests but they were in fact very important and he did absolutely awesome for all of them.

The hospital I chose was also wonderful and I would recomend them to anyone. Newton/Wellsley

Have the test done he won't feel a thing at all the earlier he is diagnosed the quicker the diet starts.

My son is having a harder time now that he has tasted all the good stuff and right now I am pulling my hair out trying to find a good chocolate chip cookie for him.

I just got A letter from Milford Hospital in Milford MA.

They have a support group meeting the 4th Thursday of every month If you want that info I would be happy to send it along.

I am very new to this too the support group might help me I am sick of baking and throwing things away not to mention how much my groceries went up in the past two weeks I need lots of help.

TTYL Jen

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Hi Margaret My son was just diagnosed with Celiac two weeks ago he had positive blood results for 2 years but the biopsy's were all nagative till this last one this last was positive. My son is 9 so this has been a huge change for him and very hard for me as well.

The first thing my doctor told me is until his biopsy come back positive we could absolutely not take him off gluten.

I makes the test more accurate .

I do have to say I was extremly scared for him having to have all these tests but they were in fact very important and he did absolutely awesome for all of them.

The hospital I chose was also wonderful and I would recomend them to anyone. Newton/Wellsley

Have the test done he won't feel a thing at all the earlier he is diagnosed the quicker the diet starts.

My son is having a harder time now that he has tasted all the good stuff and right now I am pulling my hair out trying to find a good chocolate chip cookie for him.

I just got A letter from Milford Hospital in Milford MA.

They have a support group meeting the 4th Thursday of every month If you want that info I would be happy to send it along.

I am very new to this too the support group might help me I am sick of baking and throwing things away not to mention how much my groceries went up in the past two weeks I need lots of help.

TTYL Jen

It's stories such as this one that makes me crazy! This is not meant as a slight towards you, Jen, because I'm sure you were not familiar with celiac disease enough to know that this doctor did a grave injustice to your son by keeping him on gluten for 2 years with positive test results. This is why I have as little to do with doctors as possible concerning my celiac disease and it's worked beautifully for me.

A positive blood test is a diagnosis of celiac disease. By telling you to keep your son on gluten until he shows intestinal damage should be grounds for malpractice. By doing so, this puts people in a higher risk group for many undesirable diseases associated with celiac disease! If I had not been so perceptive and figured out my 20 years of health problems myself, and then asked for testing, I probably would have been dead by now. I will never understand the mindset that waits for damage to be done and seen, instead of going by symptoms and blood work, when positive! I also have 2 other autoimmune diseases, that could end up being serious, because of doctors and their insistence on stringing people along. The other downside to what they have done is make it even harder to put your son on a gluten-free diet. He has gone 2 more years eating gluten and I can understand why it would be hard for a 9 year old to deal with this.

When my blood work came back in the stratosphere range, I was told to make an appointment with a GI. At the time, I was so sick I could not work. Down to 99 pounds and losing 1 pound per day...no kidding. Their response? They could see me in 3 weeks! EXCUSE ME!!!!!! I hung up the phone and went gluten-free immediately and have never felt better in my life. There is no mistaking celiac disease when blood work is positive and I am so thankful I didn't wait for these goons to do an endo.

Celiacs need to jerk long and hard for doctors to get on the ball and change the way they diagnose. I could see if someone had strong symptoms and negative blood work.....an endo might be necessary. But not when someone has positive blood work for 2 years and is told to keep eating poison! Yikes!

I hope your son comes to terms with this and once you learn more, you'll find that the diet isn't all that hard....just expensive. As for the chocolate chip cookie problem, a good package one is the Bob's Red Mill CC cookie. I use 2 eggs in the mix instead of the one they advise and they are crisp on the outside and chewy on the inside.....very good for a mix. Hang in there because life will return to normal for you and your son. If you need any more substitutions for things your son misses, I'm sure everyone here could help with that.

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