I'm a rookie

[Jen]

Hi everyone,

I was diagnosed with celiac disease about 2 weeks ago and was given little direction on what to eat and not to eat. I have done some research myself and have talked to a few people with CD, but am having trouble finding safe foods to eat. I am currently living on bananas, gluten-free pasta, and water. I am afraid to branch out. Should I see a nutritionist? What are some foods you enjoy eating that you find safe? Any help would be appreciated.

Thanks,
Jen

[aklap]

Hi Jen,

Welcome to the GF Club House!

I have found patient education AFTER diagnosis (IF/WHEN they get diagnosed) is slim to none!! Hopefully we'll change that for you. Thank God for sites like this! They were my saving grace.

Should you see a nutrionalist? Sure, I think that would be a good idea. Just make sure they are familiar with the GF diet. Some are not so familiar with it. You might ask them how many celiac patients they have helped.

I think you are taking the correct approach tho...cut out everything and go from there. You could add some more whole foods (foods not processed) like fresh veggies, fresh fruits, plain (no marinades. stay away from meats with broth for now!) meats, poultry & seafood. The less processed the better. As you get a baseline of feeling good...you can slow branch out and add things.

I just posted this for another poster. I think it would work great for you! Please forgive my copying & pasting it here

Take care and good luck in your GF Journey! I think we can help you thru it. Don't worry, it does get easier. Just take it one day at a time.

I have a couple posts (that I just bumped up to the top) that might help you in figuring out what ingreds. are OK and not OK. Finding the ever elusive, sneaky hidden gluten can be tricky. You have to check meds, shampoos, envelope glues, EVERYTHING! Instead of the Crocodile Hunter...we need the Gluten Hunter...Crikey!! hehehehe

Be sure to check out the Cross Contamination Thread.

We also have the ever popular GF Food Lists. Please remember to always double check those items on the GF Food lists just to be safe!

#1
Celiac.com Safe & Forbidden food lists. These will help you navigate the murky waters of GF eating. I took these lists to the store with me for 3 months. After that you know whats OK. These lists allow you to read labels and determine of it is GF. Be prepared to spend LOTS of time in the store. Of course you'll want to verify with the manufacture.

http://www.celiac.com/st_main.html?p_catid=12

#2
The Delphi Food Lists. Please remember to click "No Thanks" on the 1st ad screen.

#3
Chicago Mainstream GF Food List: http://homepage.mac.com/sholland/celiac/GFfoodlist.pdf You'll need Adobe Acrobat installed on your computer, which you probably already have.
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

[Jen]

Hi Aklap,

Thank you very much for the posting. I really appreciate all the resources! That's exactly what I was looking for. Some days I feel great, and other days I feel horrible. It can be a bit frustrating.

I have endured stomach pain and nausea for so long. I just hope I can finally figure out which foods to eat and which ones I can't. It seems like trial and error. Have you ever eaten something that was advertised as gluten-free and thought maybe it wasn't? Also, how do you deal with your symptoms?

Jen

[Guest]

Hi Jen
It most certainly IS trial & error. This forum is certainly my saving grace as I'm sure it's been to a lot of people. Like Al said, if you stick with totally unprocessed food in the beginning, you can't go wrong. It's certainly not an overnight thing, so as far as the pain & discomfort, just do what you've been doing. I've learned 2 very important words that goes with my new eating habits...plan & patience. Good luck, we're here to help.
Ann

[aklap]

[Judy]

Jen, before you make an appointment with a nutritionist be sure they have some experience with gluten intolerance. I spoke to one at our local hospital and neither she nor her partner had an clue about it. They knew what it was, but had never dealt with it. We found a nutritionist at the Joslin Diabetes Clinic in Boston (Celiac and Diabetes go hand in hand and my husband has both) that was supposed to be experienced in Celiac, but she didn't have a clue that iodine would exacerbate the Dermatitis Herpetaformis problem. DH as its known, is one of the problems associated with the illness (not all celiacs have it). We left there feeling rather let down as she was supposed to be an expert. Just be sure to ask them if they have the experience you need.
_________________
Judy

[Jen]

Thanks Al and Judy for your advice. I will be talking with my GI doctor this week and will definitely ask to be referred to a nutritionist who is familiar with celiac disease. At the moment, I feel like I am flying blind.

Judy, did you end up finding a different nutritionist in the Boston area? I live in Massachusetts and would be willing to drive to see a nutritionist who specializes in CD.

Thanks,
Jen

[Judy]

We never looked for another nutritionist, Jen. My husband was so disgusted with the nutritionists we'd talk with that he just decided to plod along without one. What part of the state do you live in? My husband was seeing a dr. Kelly in Boston (HUGE expert in Celiac and I would highly recommend him) and he sent us to the Joslin Clinic to see her. I think she is probably great for new celiacs, but she didn't seem to know much about the DH (which not everyone has) problem. Dr. Kelly also gave my husband information on seminars and group meetings in and around Boston, but he's never attended any of them. He's the kind of guy that is all gung-ho when he's sick, but as soon as he's feeling better - he forgets all about the illness. Not just celiac, but EVERYTHING! I sometimes wonder why he even goes to the dr. It makes me crazy, but that's for another topic and post.
_________________
Judy

[Jen]

Hi Judy,

I live on Cape Cod. I have a great GI doctor here who has diagnosed different patients with celiac disease, but I want to make sure I find a good nutritionist too. I'll ask my GI doctor whether she knows someone who specializes in the area.
Also, since I am still new to CD, I don't know much about DH. I have an acne-like rash on my back which I never had before the diagnosis. I also get it on my neck and sometimes on my chest. Could that be DH? I usually don't break out, so it is unusual for me. Does it just go away after not eating gluten for a while?

Feeling a little better this morning Jen

[Judy]

I just came home from Sagamore and the beach! It was great fun and very hot!! I also have a good friend that lives in Centerville and my son-in-law is from Osterville! Cape Cod's a great place. Certainly you are within driving distance to Boston, so if there's nobody on the Cape ask about Boston. There is a group of doctors in Boston that are dedicated to Celiac and if you don't get any help from your doctor regarding a dietition, let me know and I'll get some phone numbers for you.

DH is how my husband found out he has celiac (more than 25 years ago). It manifests itself in little water filled blister type things, at least in his case. They appear on the thinnest skin - under the eyelids, up near the cheek bones, knees, elbows and bottom and they are extremely itchy. Once he had a strange horrid rash on his chest and back and all we could think of was the ice tea he was drinking. We never did figure it out, though, but it went away after he stopped the ice tea and he never had it again. Good luck and keep the faith - its an on-going struggle. Ask me - after 25 years my husband and I are still learning.
_________________
Judy

[Jen]

Hi Judy,

What a small world! I grew up in Barnstable and don't live far from Osterville. I'm actually on my way over to Dowse's Beach right now (in Osterville). It's a great beach.
Thanks for your advice on the nutritionist. I'll keep you posted on who my GI doctor suggests and let you know if there is one she knows of up in Boston.
Should I mention the possibility of DH to my GI doctor? Perhaps I should have a dermatologist take a look at my rash.
Jen

[northman235]

I'm jealous of you two being at the Cape! I'm in Western Mass. and haven't had a chance to get out there yet this year. Does anyone know of any Celiac support groups in the Western Mass. area? I don't go back to my Dr. until the 13th of September, was hoping to find a local support group before then. By the way, Healthy Villi is a good website if you haven't seen it yet http://www.healthyvilli.com/

Steve
_________________
GF since 7-18-05

[northman235]

By the way Jen, watch out for hidden Gluten and cross-contamination at home too. I was Gltened by my Gas Grill - we loved our marinades and BBQ sauce before I was diagnosed and 2 days after DX without thinking I grilled a steak without cleaning and burning off the grill - took me 2 days to figure out how I was Glutened!

Steve
_________________
GF since 7-18-05

[Jen]

Hi Steve,

Funny you mentioned the possibility of cross-contamination...I just left a website about that. Thanks for the advice. Being new to celiac disease, I had no idea about cross contamination. Looks like I'll be buying new utensils, cooking pots, and cleaning the grill.
I looked on a website and found some celiac support groups in your area. I am not super familiar with western mass, but there is one in Pittsfield and one in Worcester. Here are the two contacts:

Pittsfield: Claire Smith: Clair13ls@aol.com
Worcester: (Central Mass Celiac Support Group)
Linda Kiuru: larklinda@juno.com
Jen