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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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    • AlwaysLearning
      Gluten related ??

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      Get tested for vitamin deficiencies.  Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
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      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
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      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
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