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First Steps

jenvan

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jenvan Collaborator
jenvan
Posted

Here's a question for all you veterans-- I was recently diagnosed with Celiac. Have you found that you are pretty much on your own or do you suggest finding a GI doc or a nutritionist to work with long term? My impression of my GI doc is that he doesn't have too much to offer me. Besides the obvious change in diet, do you go back to have your blood tested periodically, to check on your progress of healing? Any other suggestions for a new lifestyle plan?

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Guest jhmom
Guest jhmom
Posted

Unfortunately I do not think most GI docs are aware of what foods, meds, etc are gluten-free and whats not. I think you can handle it on your own especially with sites like this and all the resources we have available to us.

Hang in there! :D

KaitiUSA Enthusiast
KaitiUSA
Posted

I don't trust many doctors and GI doctors even ones that know about celiac can't really tell you all the stuff that contains gluten. This is something you pretty much have to learn. A celiac nutritionist may be able to help out with what you can eat but you could learn so much more on your own. You will learn what the good brands of foods and products to use are. Sites like this one really help and you can learn alot. If you need help with anything just ask we are always here to try to help :D

jknnej Collaborator
jknnej
Posted

This website is the best place to go! Since I realized I had this, I come here when I have questions. It's free and honestly,most people here know more than the doctors when it comes to eating gluten-free...for sure! And, you don't even have to leave your house:)

Carriefaith Enthusiast
Carriefaith
Posted

I found that I learned almost everything on my own or from the people on this site.

I went out and bought gluten-free cookbooks and used the google search engine like crazy.

Then I found this web site and I find out most of my info from here.

pixiegirl Enthusiast
pixiegirl
Posted

Its my opinion that very few in the medical profession have much to offer for us Celiac people, even if you get diagnosed by them they are clueless about where gluten is found.

I have learned more on the internet then my doctor knows, that's for sure.... I love the various lists like this one, people are so helpful and there are a bunch of good websites too.

Susan

darlindeb25 Collaborator
darlindeb25
Posted
;) i agree with everyone---this is our lifestyle and up to us to figure it out--there are many out there that can answer questions and i will always answer any question i am capable of answering and if its bigger then me, then i call my sister who is a celiac and dietician--she usually can answer the hard questions for me :D --i find that sometimes i become to trusting of products and other times that i just get lazy and i usually pay for that mistake--my man just told me that i cant afford to get comfy or lazy and he's right B) it's just sometimes i want to be normal :( and we arent--we look normal, we behave normally, well most of us do--some of us are just plain crazy and thats a good thing--if we cant laugh at our mistakes, then we are in trouble-----it's like i say--the glass is half full, that's the way we all should look at life :lol: finding out we are celiac is much better then being sick all the time--it's not easy, but we can all do it--pat yourselves on the shoulders for the good job you do on a daily basis :D ---deb
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jenvan Collaborator
jenvan
Posted
  • Author

Thanks for the encouragement ladies! It is my impression that you are on your own with this diagnosis. But who better to be the experts than us I guess! ;) I look forward to talking with you more in the future...

mommida Enthusiast
mommida
Posted

I suggest a palm pilot. Keep a list of gluten free medications with you at all times. (this may be so important to me because of my kids) I've pulled out the palm pilot at the urgent care for prescriptions for kid's ear infections at 2:00 a.m. The doctor asked me where to find the list.

I also have the forbidden ingredients list on the palm pilot. I really don't look at it anymore.

If an emergency happened and someone else had to make gluten free food/medication choices for you or your child, do you have the information on hand for them?

Laura

jenvan Collaborator
jenvan
Posted
  • Author

Laura -

Do you like the Palm software from the Clan Thompson site? I had downloaded the demo to check it out...

ianm Apprentice
ianm
Posted

All of the doctors I went to were clueless about celiac disease. They knew a lot about writing prescriptions though. The good thing about this disease is it forces you to pay attention to what you are shoveling into your mouth. You will be much healthier as a result.

Ianm

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    • nanny marley
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      Great advise there I agree with the aniexty part, and the aura migraine has I suffer both, I've also read some great books that have helped I'm going too look the one you mentioned up too thankyou for that, I find a camomile tea just a small one and a gentle wind down before bed has helped me too, I suffer from restless leg syndrome and nerve pain hence I don't always sleep well at the best of times , racing mind catches up I have decorated my whole house in one night in my mind before 🤣 diet changes mindset really help , although I have to say it never just disappears, I find once I came to terms with who I am I managed a lot better  , a misconception is for many to change , that means to heal but that's not always the case , understanding and finding your coping mechanisms are vital tools , it's more productive to find that because there is no failure then no pressure to become something else , it's ok to be sad it's ok to not sleep , it's ok to worry , just try to see it has a journey not a task 🤗
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