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Best Advice For A Newly Diagnosed

Kaycee

By Kaycee
in Coping with Celiac Disease

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Kaycee Collaborator
Kaycee
Posted

I am so frustrated about coeliac and the lack of information that is available to us from the medical system. My doctor just told me avoid gluten! When I went back after a couple of months I was told to give myself a chance to heal. I am a bit reluctant to go back and throw good money away after bad. In the shops and the libraries there does not seem to be many books and information available. It would seem that the only way to get information is through the net, which is okay if you can get on the net and know your way around it. What about other people who do not surf the net and totally rely on the medical profession?

My most valuable piece of information to anybody else, especially older people (I could be wrong here.) is to avoid dairy products, until we are healed. I know not everybody is lactose intolerant, but it seems that the chances are that we are to start with.

My frustration is in finding out that this is probably is my problem as well. To start with it seemed that going gluten free was the answer, and all my symptoms were disappearing, even the ones I did not know would’ve been related to gluten, and that was for about a month, and then the symptoms crept back in and I thought for such a long time that I must be getting glutened. But it was without the brain fog, just upset stomach and diarrhoea.

I figured it out to be diary products, and am knocking those back. If I had known to avoid these products would I be further down the track today. I probably would be, and with less stress all around. My husband must surely thing I am off my head the way I go on at times.

So what would be you excellent piece of advice to a newly diagnosed coeliac?

Another one would be a recommendation to this forum, you have been oh so helpful.

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ravenwoodglass Mentor
ravenwoodglass
Posted

The best advice I got as a newbie was to make sure all my non-food stuff was gluten free also. It was in almost every shampoo, makeup, lotion, pet food (didn't think to use seperate can-opener for 3 yrs!!!), pastes, paints, etc.

sillyyak Enthusiast
sillyyak
Posted

The best advice that someone gave me was that "It gets better".

tiffjake Enthusiast
tiffjake
Posted
there is a ton of misinformation on the web, including on this site. i would recommend you get the book by dr. peter green, who runs the celiac center at columbia university in new york. you can buy it on the internet at amazon .com.

Ditto, there are good-hearted people who have bad information (and I am not perfect either! LOL). Buy books, lots of books! Wheat Free/Worry Free by Danna Korn, Gluten Free for a Healthy Lifestyle (can't remember the author)......I have ordered a bunch on amazon and then lended them out the friends.

Also, look for a local support group! There are great groups that provide info, food samples, advice on local eating, etc.

You have to become your own doc in many ways, and from the docs I have seen, that is fine with me!

evie Rookie
evie
Posted
Ditto, there are good-hearted people who have bad information (and I am not perfect either! LOL). Buy books, lots of books! Wheat Free/Worry Free by Danna Korn, Gluten Free for a Healthy Lifestyle (can't remember the author)......I have ordered a bunch on amazon and then lended them out the friends.

Also, look for a local support group! There are great groups that provide info, food samples, advice on local eating, etc.

You have to become your own doc in many ways, and from the docs I have seen, that is fine with me!

Very good info above!! I 2nd the book by Dana Korn, I am now reading it. Just got itTthursday and near 1/2 thru. Lots of good info, have heard some of it right here but it is all in one book before me. It also has some good references. When you get ready to strike to bake for yourseld Betty Hagman's baking book is a good source of recipes, but do not go overboard/ too much subdtitute bars, cake or?? It can be higher in calorie and cause weight gain past what pleases you. Just wish you lots of patience, can't learn it all in a few weeks.

;) evie "Been there, done that".

GFBetsy Rookie
GFBetsy
Posted

My best advise would be: Make a list of all the things you CAN eat. It helps to look at a gluten-free diet from this positive perspective.

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