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Doctor Help, Plus:anyone From Eastern Pa?

kmps

By kmps
in Doctors

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kmps Newbie
kmps
Posted

I am new here.

My experience: I went to GI and had "too many symptoms to point to one specific dx" so he tested for Celiac (as well as other things) and I got EGD, etc. Test came back with light abnormalities which "may be beginning stage of Celiac" so he tells me, "you don't eat a lot of gluten already, right? So just don't eat any more and you will be be fine."

I was so dissapointed and let down. I THEN checked on line and found info stating that you should not be tested for biopsy if not eating gluten so I searched and found a Dr. about an hour away that has an interest in celiac, took the 1st available aptment for May 1st, and started to eat gluten again.

I feel very ill, sad, and I am having trouble focussing and spelling, retrieving information and things like that. I think my hair is starting to come out again and I feel so fat. I really don't wat to wait until May 1st! But, I know I should. My biggest fear is that I will go to this Dr. and he will tell me that I don't have Celiac! I think then I will need to be committed to the mental hospital!!!!!!

My other issue now, is that I think my kids might have it and I called a couple of pediatricians in my area that treat/dx celiac disease and they tell me that I need to go to a regular Dr. first to get basic info! Well, for some reason, I don't see why this is important! And especially since I didn't go that route for myself. What's the deal.

My daughter is 12 and she deffinitely has some food issues. SHe has been dx with all kids of learning disabilities. Her hair used to pull right out of her head (until I put her on isotonic supppliments) and she has always struck me as having some kind of vitimin difficiency. My question here , I guess, is #1 does anyone know a great GI for kids in eastern PA? I live in the Lehigh Valley area. #2 is -do I wait until I am dx or do I take my kid NOW?

ANy other suggestions are appreciated.

Thanks!

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Stephanie DH Newbie
Stephanie DH
Posted
I am new here.

My experience: I went to GI and had "too many symptoms to point to one specific dx" so he tested for Celiac (as well as other things) and I got EGD, etc. Test came back with light abnormalities which "may be beginning stage of Celiac" so he tells me, "you don't eat a lot of gluten already, right? So just don't eat any more and you will be be fine."

I was so dissapointed and let down. I THEN checked on line and found info stating that you should not be tested for biopsy if not eating gluten so I searched and found a Dr. about an hour away that has an interest in celiac, took the 1st available aptment for May 1st, and started to eat gluten again.

I feel very ill, sad, and I am having trouble focussing and spelling, retrieving information and things like that. I think my hair is starting to come out again and I feel so fat. I really don't wat to wait until May 1st! But, I know I should. My biggest fear is that I will go to this Dr. and he will tell me that I don't have Celiac! I think then I will need to be committed to the mental hospital!!!!!!

My other issue now, is that I think my kids might have it and I called a couple of pediatricians in my area that treat/dx celiac disease and they tell me that I need to go to a regular Dr. first to get basic info! Well, for some reason, I don't see why this is important! And especially since I didn't go that route for myself. What's the deal.

My daughter is 12 and she deffinitely has some food issues. SHe has been dx with all kids of learning disabilities. Her hair used to pull right out of her head (until I put her on isotonic supppliments) and she has always struck me as having some kind of vitimin difficiency. My question here , I guess, is #1 does anyone know a great GI for kids in eastern PA? I live in the Lehigh Valley area. #2 is -do I wait until I am dx or do I take my kid NOW?

ANy other suggestions are appreciated.

Thanks!

I live in Northern Bucks, right near the Lehigh line. Sorry I too am looking for a good Dr. I wouldn't wait to take her.

Do you mind sharing who your new Dr. is? Remember you could test negative for celiac and still have issues with it.

I have had issues for almost twenty years. All of my repeated tests have come back negative.

Even at my worst 9 years ago when I came down with chronic fatigue syndrome. My brain is probably the thing that bothers me the most. I feel totally disconnected all of the time. I am trying to go gluten free again, even though my doctors have repeatedly told me I do not have Celiac Disease. I am only a week in and am having a hard time. I can relate to your symptoms. I am feeling so bloated right now. I thought it would start going away once off the gluten, it actually feels worse now. It is all so confusing and overwhelming, especially when you have been dealing with symptoms for so long. I hope May comes quickly for you.

kmps Newbie
kmps
Posted
  • Author
I live in Northern Bucks, right near the Lehigh line. Sorry I too am looking for a good Dr. I wouldn't wait to take her.

Do you mind sharing who your new Dr. is? Remember you could test negative for celiac and still have issues with it.

I have had issues for almost twenty years. All of my repeated tests have come back negative.

Even at my worst 9 years ago when I came down with chronic fatigue syndrome. My brain is probably the thing that bothers me the most. I feel totally disconnected all of the time. I am trying to go gluten free again, even though my doctors have repeatedly told me I do not have Celiac Disease. I am only a week in and am having a hard time. I can relate to your symptoms. I am feeling so bloated right now. I thought it would start going away once off the gluten, it actually feels worse now. It is all so confusing and overwhelming, especially when you have been dealing with symptoms for so long. I hope May comes quickly for you.

The new Dr I have an apointment with is Dr. Jaffe who has an office at U of Pen and another in Radnor, PA. I don't live that far from NYC and I would love to go to the Celiac center there at Columbia, but if I have to make several trips it would just be a strain on me and my family in many ways. I found that Dr. Jaffe had very good reviews.

They don't take kids though, so.... at least I think that's what they said.

When I was 90% gluten free on my own I still had symptoms as I do now except now that I eat whatever I feel very much worse. Bleh. I had my blood checked and I have very low Vit. D, B12 and I had no benificial flora in my intestines. Plus too much Ecoli and a nice big bacterial yeast infection. My GP gave me lots of suppliments, but i find it so hard to take everything all the time. I get so sick of all that water and pill taking.

Maybe you have another issue on top of the gluten thing. ?? If you don't feel well off of gluten. Are you sure you avoid all gluten?

  • 5 months later...
one more mile Contributor
one more mile
Posted

I live in Oley/fleetwood, pa Near Reading but due to my health insurance have to go mostly to Leigh valley.

If you find a good doc let me Know I am looking for one also.

Are there any support groups that meet locally in our area?

Trust your guts when it comes to your kids. My kid was always very obese. We Tired elimination diets and found that she gets pains after eating milk and meat. She is doing so much better now but it took years to figure it out. The organic route helped but was not the whole story. Doctors just kept saying she needed to eat less. Well duh. But the kid always felt hungry. Giving her milk only increased her cravings to eat. Doctors told her that chest pains were growing pains. They were not, they were a milk allergy. Now when she is a clean vegan she is fine. But I can tell by just looking at her when she is not. But at 20 I can not rule what she eats.

My point is that as a parent you know when something is wrong, some times you have to just try everything you can think of before you hit the nail on the head. I was frustrated for years. But glad we finely figured it out. Good luck. I hope you have gotten some place with it.

some pills are not Gluten free I have been told. I have my drug store check for me now.

One more mile

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