New to Celiac, Southern Ohio area

[Jeff Martin]

We just found out a little over a week ago that our 11 year old daughter is + for Celiac. We are still waiting on the dietician to call and start the learning process with us. I was looking for some stores in Columbus Ohio that would have a good selection of GF foods.
We live about an hour south of Columbus and will be at Children’s Hospital for an Endo visit and would like to do some shopping for GF foods while we are there.
Thanks for ANY help .
Jeff

[bkfkmc]

Well, I can't be of much help. I am not from your area, but we are new to this also. I thought I would share some info that I have gathered over the last couple of weeks. I have bought several things from Amazon. It is quite a bit cheaper if you are willing to buy in bulk. We like Gluten Free Pantry, Glutino, and Pamela's Products.

Also, we have found some bread that we have had shipped from Florida. They have a web site samisbakery.com and the breads are Millet and Flax. They have bread, hot dog and hamburger buns, and lavash (a pita like bread that we also use for individual pizza crust.)

We also found some Thai Kitchen noodles at Walgreens that are great quick meals. There are also mainstream products at the grocery store that I am slowly learning. I must tell you that we have not met with the dietician yet either since she is on maternity leave. I have received guidance from a friend who has been such a blessing. I wish you well as you try to figure this out. I'm right there with you!

[Jeff Martin]

Thanks for the reply. I never even thought about Amazon, we bought 2 GF cook books from there. In my small town we only have 1 health food store and I didn't think they had too much to pick from. We are also finding a few things at main stream stores and our Kroger's is just now setting up a section that has GF, organic and other special foods. I hope after we meet with the dietician we will have a better idea what to look for.
Thanks
Jeff

[WestinsMom]

I have to second the recommendation for Sami's Bakery! We love their bread! Our health food store does carry it, thank goodness. Our health food store has recently widened it GF selections! They also mark all the shelf tags with a yellow dot if it is GF. We are not in a big town either. Make sure your health food store knows you are interested in more GF products. They could probably also order for you.

Do you have a Meijer? They have a GF section here, in both stores I frequently shop, usually by the low carb.

[CDoyle1013]

My daughter (diagnosed age 8, now 12) also tests positive for celiac but an endoscopy of her intestines shows that celiac has not been activated yet so no changes in diet. You might wish further testing. Was your daughter showing other systems, like cramping and pain after eating products with gluten? Whole Foods has lots of gluten free products (expensive but alot of choice)

[Jeff Martin]

Michelle, No we do not have a Meijer. I told you this was a small town , LOL, !!!!! We could drive an hour away and find one.

CDoyle,
My daughter's blood screening test was + this past June. She had the scope done 9-11-07 and it was +. Doctor said it didn't look like she has had this for every long, some damage but not much. As for symptoms she had none. They said that one of two things could explain that. 1) she could be at the beginning stages of celiac or 2) she could have "silent celiac" where you have no symptoms.
We have had trouble with her BG going all over the place. At times we have had trouble getting her BG up when she tested low. They said Celica could be the cause.

Thanks
Jeff

[WestinsMom]

Growning up in a really small town, we traveled 40 minutes to do our shopping, so I understand. :) "Small Town" can mean lots of different things.

Westin never had any symptoms before diagnosis either. But after being GF for a while, he will get diareah (sp?) if he eats a lot of gluten, ie a slice of pizza. (He use to like to cheat once in a while, those symptoms put an end to the desire!) I guess his body got use to not having gluten.

With the internet, good GF is possible. It will be costly, but there is generally an alternative for everything. Are you dealing with any other food allergies? That is when it gets really tricky!

[Jeff Martin]

Michelle,
As of today we are not dealing with any other food allergies but who knows that could change at any time !!!!! LOL !!!!!

Jeff

[GlutenFree]

Hello, There is a very good celiac conference november 3rd at the Columbus Children's Hospital. Here is the contact info: 614-722-4949 or e-mail communityeducation@chi.osu.edu.


I have many good GF diet links on my website http://www.buffaloceliacs.org/ Hopefully the tips help.

Regarding the person whose child serum tested positive but the biopsies were negative. Get aqualified second opinion on the biopsies. The average mis-diagnoses due to incorrect procedure or lack of experience by the pathologist is around 35% according to Dr. Peter Green from Columbia University. Odds are the child does have CD. I have seen this many times.

Mike

[WestinsMom]

Regarding the person whose child serum tested positive but the biopsies were negative. Get aqualified second opinion on the biopsies. The average mis-diagnoses due to incorrect procedure or lack of experience by the pathologist is around 35% according to Dr. Peter Green from Columbia University. Odds are the child does have CD. I have seen this many times.

Mike


I would have to agree. I have heard stories about drs that just didn't know where to biopsy! Crazy as it sounds... why they would even attempt baffles me!

[CDoyle1013]

Our biopsy came as part of the ROSE study conducted through the Barbara Davis Juvenile Diabetes Center in Denver and Children's Hospital...once was enough! My daughter's bloodwork and genetic makeup shows a positive correlation for celiac but she tested negative in the biopsy and has no indigestion or pain after eating gluten products.

[GlutenFree]

Hopefully you will be more open minded and pursue a second opinion. You dont have to have her Biopsied again unless the original biopsy was done incorrectly. You can simply request the tissue samples be reviewed at the celiac center @ Columbia University. Here is the contact info:

Celiac Disease Center at Columbia University
Harkness Pavilion
180 Fort Washington Avenue
Suite 934
New York, NY 10032
Tel (212) 342-4529
Fax (212) 342-0447
Email: celiac@columbia.edu
www.celiacdiseasecenter.org

I wouldnt be comforted by the fact she has zero symptoms. Over 50% of newly diagnosed people with CD are Asymptomatic at time of diagnosis. Years of untreated cd can cause bone, liver, thyroid, dental disease, reproduction and many other issues. The diet isnt that difficult and is much simpler to deal with than a lifetime of illness. A late diagnosis has left me with 5 autoimmune diseases. As for the endoscopy the medicine they give is very good and the only side effect is a sore throat the next day.

Good Luck

[CDoyle1013]

I will take your info to the Barb Davis Center with us next month and ask for a review. Thanks for the info...

[aklap]

Hi Jeff,

One of the best things you can do is join a support group. Here's a list of support group websites. This list is only for those groups that have web sites, there maybe other support groups that do not have web sites.

These support groups would be able to point your in all the right directions when it comes to GF things in their area.

Cincinnati Celiac Support Group - http://www.cinciceliac.com/
The Gluten Free Gang (Columbus) - http://www.glutenfreegang.org/
Central Ohio Celiac Resource (Columbus) - http://www.columbusceliac.org/index.htm
Northeast Ohio Celiac Support Group - http://www.geocities.com/clevelandceliac/

To find support groups, look here:

USA
http://www.enabling.org/ia/celiac/groups/groupsus.html
http://www.celiac.com/st_prod.html?p_prodid=310&p_catid=35&sid=91hH9H1EwA1ECGc-50105403992.ae
Celiac Sprue Assoc. Chapters: http://www.csaceliacs.org/chapters.php
Gluten Intolerant Group Branches: http://www.gluten.net/branches.html

We are still waiting on the dietician to call and start the learning process with us.

Is the RD familiar with the GF diet [some are not, so that's why I ask]? You might spend some time looking at some articles written for dietitian's by dietitian's (http://www.celiacforums.com/viewtopic.php?t=3959).

[aklap]

I would have to agree. I have heard stories about drs that just didn't know where to biopsy!
They also don't take enough samples. Damage can be patchy. Many times only 3 - 4 - 5 samples are taken [I think only 3 were taken in my case :mad:], thus missing potential damage. In reality they should be taking 15 or more! (http://www.clanthompson.com/exp_doctor.php?status=show_qa&coded_question_id=52&coded_category=Tests%20and%20Their%20Results&coded_category_id=4)