<<Disclaimer: Verify this information before applying it to your situation.>>
Below are replies I received.
I am open to more stories & suggestions - about nutritionists and/or the
process.
Thanks to all & especially the writers of long replies.
- Chris
I had written:
> I'm looking for a specialist who can help design an "elimination diet",
> starting with just lamb + rice, to identify foods causing allergy or
> intolerance.
> Not just celiac but other allergies as well.
Replies:
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Just a note of caution, re elimination diets as usually practiced. Most use
lamb & rice as the basis from which to work, but even these foods can be
potentially problematic, based on my experience with my 13 yr old son. He
can only tolerate brown rice & only occasionally, and although I thought
lamb should be OK, he has found the last couple of times he's had it, that
it seems to be bothering him. I've not heard of anyone else having a
problem with lamb, but others have told me they also have a problem with
rice - though most often it's with the more processed types & whole grain
brown rice is less of an issue. Just something for you to keep in mind, in
the event you still feel lousy even on the rice & lamb! Cheers, and good
luck! Aggi-Rose
P.S. from recent discussions we had on this list, it would seem the most
common foods that are problematic are corn, soy, peanuts [legumes in
general], casein/dairy [not just lactose], tomatoes, potatoes
[nightshade family], & others that have escaped my mind at the moment!
If you search the list archives of July/August for "intolerances" you'll
find the summary,etc.
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Susan Carroll from Marino center [in Cambridge]
(http://marinocenter.org/staff_cambridge.htm) knows a
lot about gf diet/allergies. She designed an elimination diet for me.
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I can't recommend a specialist to help you but I know of a company who
has nutritional products
for this very purpose. It is an extensive website and they have done a
lot of research--Canadian
company on food sensitivities. You wouldn't need anybody to help you
here I think.
Their products are wonderful and I use them all the time. The ones I use
contain no allergens.
Click Here:
http://www.nutramed.com/
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Melinda Dennis at BIDMC is great!
[ Melinda Dennis is active in The Healty Villi support group, and may
have been a founder.
She gets rave recommendations in other quarters. She practices at -
I think - Beth Israel /
Deaconess [Hospital? Medical Center?] Medical Nutrition Therapy in
Boston. ]
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we just went to a nutritionist at mass general named dana brennan she
was very nice and very helpful for us.
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A friend highly recommended Lisa van Dusen at UMass-Worcester [Memorial?]
Medical Center.
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[ From Australia, an eye-opening reply : ]
I don't know if my situation is similar to yours or not, but I thought
you might like to know that you are not alone because I felt very alone
and abnormal this time last year! Last year, at the age of 41, I
discovered that I was gluten intollerant and anaphalactic. Funnily
enough, I had had two previous allergic reactions one as a toddler and
one in my mid twenties that required adrenalin injections, but they were
never called "analphalactic shock" within my hearing, so the diagnosis
of "anaphalaxis" was more devasting than the gluten intollerance.
I react to a huge variety of things. My doctors describe my gluten intollerance (CD & DH) and type A Hypersensitivity as ONE condition, not three - "an oversensitive system".
I have been gluten free for 15 months. As well as poor chemical tollerance and stable food allergies (shellfish, treenuts, corn and mango), I have "mobile" food allergies.
Last time I saw an allergist (November 2003) I was supposedly allergic to beef 3+, chicken 3+, dairy 2+, egg 2+, potato 3+, tomato 2+ and wheat 4+ (coincidence?), based on allergy skin tests, and had had recent severe reactions (anaphalactic shock, urticaria and gastrointestinal symptoms) to prove it.
I already knew I was allergic to shellfish (anaphalaxis), treenuts (urticaria and oedema), corn (urticaria and oedema), and mango (oedema) which show up on allergy blood tests. Funnily enough, my blood tests (administered by my GP) showed no wheat, dairy or egg allergies.
My gastroenterologist and dermatologist told me not to panic about the diagnoses because my system is so sensitive that whatever I eat a lot of (ie more than 3-4 serves a week), I react to. I then cut that food out of my diet for a couple of weeks and can handle it in moderation again (except gluten, shellfish, treenuts, corn and mango).
The trick for me is to try to avoid most chemicals (including vitamin tablets, flavourings, colorings and other food additives), ensure that my diet is as varied as possible (to avoid the build up/overdose of any food that could lead to a temporary allergy), and drink heaps of water to assist my digestive system to flush out toxins.
This works well for me. In spite of the November skin tests, I am now able to have milk in my tea several times a day every day, use eggs in my gluten free baking (bread and cakes) and eat beef, chicken, potatoes and tomatoes and cheese regularly without adverse reaction. I have an "early warning" if I've had too much of anything, which I experience as discomfort (fullness/burning) in the throat and oesophegus while I'm eating that food (not anaphalaxis, more of a severe intergestion). I simply avoid the offending item for a week or so, and I'm fine again.
I hope this happens with you too once your system settles down, because during the food elimination process, it is so important to feel there is light at the end of the tunnel!
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*Support summarization of posts, reply to the SENDER not the Celiac List*
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