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Need Doctor In Southeastern Ct For Self And Son


hikermom4

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hikermom4 Newbie

Hi all,

I am seeking a doctor who will assess us for food intolerances/celiac. My PCP diagnosed me with acid reflux and is content with that. Son has been to GI specialists at a children's hospital; treated with Pdeiasure to gain weight from age 2-4 then discharged, saying they didn't know what was wrong. I had asked for allergy testing and they looked at me as if I'm a hypochondriac. Son is pale, distended belly, often has diarhhea, history of projectile vomiting several times per day (this part now resolved) just made it to the normal growth level on chart. I have an appt with GI specialist in 2 weeks and am hoping he will assess me but I've been gluten free for 3 weeks and don't want to go back to it! I have had GI problems all my life, and was always told I had a "nervous stomach." My sister was treated for IBS for years until she began bleeding and vomiting at work; now she is diagnosed with severe gluten intolerance (in another state, or I'd go to her doc)! There is an extensive family history, which the allergist who saw my son this week showed no interest in. Frustrating!!!

Anyway, does anyone know of doctors in this area who treat celiac and are willing to assess food intolerances?

Thanks!


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Cara in Boston Enthusiast

Can you come to Boston? We had a wonderful experience at Children's Hospital with my 6 year old son. His doctor (Dr. Weir) works p/t with patients and is a Celiac researcher the other time. He did not have typical symptoms and she figured it out. They follow up with a support group and nutrition classes too. When it looked like he might test negative, she was open to other, less accepted diagnosis (non celiac gluten intolerance, etc.)

The doctor we started with (MGH) was all about the numbers . . . "only some blood work was positive, so he doesn't have it" and that was very frustrating. He didn't even want to hear what I had to say ("you've read too many magazine articles . . ."

He ended up testing positive. Had we stayed with the first doctor, we would have never known.

Check out their web page - they have a celiac department at Children's.

Right around the corner is Beth Isreal - they have an adult Celiac department . . .

Cara

frieze Community Regular

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don't know this place personally, but would be closer than boston....even boston wouldnt be a bad trip on 395/90

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    • trents
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      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
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      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
    • trents
      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
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