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smead78

By smead78
in Coping with Celiac Disease

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smead78 Newbie
smead78
Posted

Hi. I was just diagnosed with celiac disease this past thurs. My doctor told me I had celiac, told me to see a nutritionist, and walked out the door. Everything I have learned, which isn't much, has been on my own. I feel overwhelmed, confused, and stressed out. So much info seems to contradict itself. I need help to sort everything out. Please help me.

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sa1937 Community Regular
sa1937
Posted

Welcome! You've come to the right place to get your questions answered. A lot of us have been given very little guidance by our doctors so what you experienced is pretty normal. You might want to read, read and read the posts on this forum as a lot of people have been or are in the same boat.

There are a few books that I can think of off hand that are very helpful:

Celiac Disease: A Hidden Epidemic by Dr. Peter Green

Living Gluten-Free for Dummies by Danna Korn

The First Year: Celiac Disease and Living Gluten-Free: An Essential Guide for the Newly Diagnosed by Jules Shepard (I wish I had bought this book)

Hope this helps a bit (I'm still on my first cup of coffee) :)

Mummyto3 Contributor
Mummyto3
Posted

Welcome to the site. I'm new too. My 9yr old daughter was diagnosed 2 weekds ago through a blood test. She's due a biopsy but I'm struggling to get a hold of her dr at the other hospital. We've already had a dieticians appointment come through for us next week (which I'm told could also be biopsy day!). I was tested for celiac disease last Friday as well as hubby. Bowel probs run through my family, grandmother, uncle, aunt, cousin. Three out of them died due to problems. I don't know if any were diagnosed with celiac disease but some seem very much like it.

I've read tonnes on the subject of celiac disease so feel pretty clued up. Heartless of your dr to give you news then walk out! So sorry he/she did that to you. I know this is all pretty scary. It's taken me these 2 weeks to get my head round my daughters diagnosis. Pretty sure mine will be positive too :o(

WinterSong Community Regular
WinterSong
Posted

Welcome to the board and to the road to feeling better!

A lot of doctors are like that actually. I have a great doctor, but I still learned everything on my own (I read probably 7 or 8 books). By the time I went in for my biopsy, he said that I didn't need to see a nutritionist because I already knew everything. :lol:

Just take a breath and start at square one. Read a book or two, and any questions you may have, I'm sure a lot of people on this forum are more than willing to help. There's also a great topic called "You're Top Two Pieces of Advice" on here that you should read.

Remember it will get easier and less overwhelming. And you're not alone because this entire online community will be rooting for you. :D

smead78 Newbie
smead78
Posted
  • Author

Thank you everyone for your help and words of encouragement. Waiting for my first visit with the nutrionist

angel9165 Newbie
angel9165
Posted

Hi. I was just diagnosed with celiac disease this past thurs. My doctor told me I had celiac, told me to see a nutritionist, and walked out the door. Everything I have learned, which isn't much, has been on my own. I feel overwhelmed, confused, and stressed out. So much info seems to contradict itself. I need help to sort everything out. Please help me.

That's pretty much how it went for me as well. It's been almost a year and I definitely feel better about it now. I have actually taught my GP a few things (and I certainly don't expect her to be a celiac expert, heck...my GI doc isn't) and we seem to be getting it all figured out. I told her how I had researched the affects on your thyroid so we tested me again (sooner than needed) and found we get to lower my dosage. Will see her next month for another test to see if we can lower it some more...with any luck, it's one medicine I can stop taking. She's been great but nothing has kept me more informed than this site and researching the net.

Good luck, Smead! :)

notme Experienced
notme
Posted

Hi. I was just diagnosed with celiac disease this past thurs. My doctor told me I had celiac, told me to see a nutritionist, and walked out the door. Everything I have learned, which isn't much, has been on my own. I feel overwhelmed, confused, and stressed out. So much info seems to contradict itself. I need help to sort everything out. Please help me.

hi and welcome :) you are in the right place. go ahead and list specific questions and the people on here can help you! been there and done that (learned everything on my own with the help of these awesome folks) one nurse at my gi's office actually told me to go online ("just google it") i think she was clueless. the best advice has come from here :) also, it's a great place to vent if you need to!

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notme Experienced
notme
Posted

oh, and: ps - by the time i could get an appointment to see a dietician/nutritionist, i didn't need to because i had already gotten coping and nutrition tips and skills from this forum. ka-ching! that's 50 bucks in my pocket! <co-pay $ ;)

cahill Collaborator
cahill
Posted

Hi , Welcome :)

Read and ask questions,, we were all newbies once :P

Korwyn Explorer
Korwyn
Posted

There are a few books that I can think of off hand that are very helpful:Celiac Disease: A Hidden Epidemic by Dr. Peter GreenLiving Gluten-Free for Dummies by Danna KornThe First Year: Celiac Disease and Living Gluten-Free: An Essential Guide for the Newly Diagnosed by Jules Shepard (I wish I had bought this book)Hope this helps a bit (I'm still on my first cup of coffee)

Yay for Sylvia's suggestions! :) Living Gluten Free for Dummies saved my sanity. A friend whose husband has celiac disease loaned it to me. I highly recommend all three of those.

My recommended order for reading these would be:

  • Living gluten-free for Dummies
  • The First Year: Celiac Disease
  • celiac disease: A Hidden Epidemic
Harpgirl Explorer
Harpgirl
Posted

I second (or third?) the Dummies book! I'm reading it right now and it's really helping me to understand how to deal with this (when I'm not at my computer), and not panic about it. I'm looking forward to reading the others too. :)

I also understand that Dangerous Grains is suppose to be good too.

mamabear272 Explorer
mamabear272
Posted

As if you need any more testimony about the Dummies book, I HIGHLY recommend it too! I'm still working on it but I've learned sooo much from it. I kept reading the same information online but it didn't make sense to me as far as what gluten does to us that makes us sick. When I read Dummies, it all clicked!

I was actually in the hospital with diverticulitis when I got the call that I had tested + for celiac (I had just seen the GI doc before the diverticulitis flare up) so I haven't seen the GI doc yet for a follow up. I see her next week for a follow up and hope she'll have some info for me. I'm not too worried about it though because I've read so much on it and being here is so very helpful.

I saw my family doc yesterday and he kind of smoothed over the celiac but like I said it doesn't worry me too much because really I probably know more than he does about it. My suggestion is just keep coming here and read anything you can get your hands on about it! We'll all be fine!

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    • trents
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