Conflicting test results - may be Celiac - need dining help!

[Nina1]

So here's my story...I recently had an EGD (test where they put the little camera down your throat) because of heartburn issues, and a biopsy revealed damage consistent with Celiac. So, my doctor ordered a blood test, which came back negative for Celiac. My doctor then ordered a genetic test that showed I am a carrier of the Celiac gene. My doctor's diagnosis...most likely Celiac, but can't confirm for sure. He referred me to a dietician who specializes in Celiac disease as he wants me to begin following a gluten free diet. I've never had any of the classic symptoms, such as stomach pain, so all of this has come as a complete shock to me. Not to mention, as a girl who loves pasta, bread, cereal, etc., I am heartbroken over this.

So, I have several questions...first, for those of you who have been diagnosed as Celiac, did you have any conflicting test results? Is this common? Do I need a second opinion? My doctor said I should have our son tested (he's four), but I can't stand to subject him to an unnecessary blood test unless I can be sure I am Celiac (I am going to check with our pediatrician on Monday to see what he thinks). And second, I have to make our ADRs next week. I love to eat, especially at WDW, and I have no idea what to do next. Any help or advice would be greatly appreciated. Right now, I am completely overwhelmed and feeling helpless, and need to regain some kind of control. Thank you for your help.

 

[PennyLou]

oe of my best friends is Celiac, the first time she was tested it came back negitive but she went back becasue her simptons just matched it so well and the second time th tests came back positvie and since shes stoped eating weat she has gone from 74lbs to 105 and is no longer sick all the time and stuff it was the best thing for her. But anyway she have to get tested 2xs is the point of my story lol.


The other thing there are a ton of threads about making reservaions but here is the info on the disney site it gives and emal and stuff for help with reservation making http://disneyworld.disney.go.com/guest-services/special-dietary-requests/

 

[Minniemama350]

Maybe you should call the restaurant you want to eat at most and tell them you have to eat gluten-free foods and see if they can accomodate you. I would think they can. Gluten free food is becoming pretty common. We even have gluten free communion at my church! Good luck. Keep us posted.

 

[No Wheat Pete]

Nina1,
It is always a shock to hear you can't eat wheat any more (not to mention rye, barley and oats!). Our little girl was diagnosed with Celiac Disease just before she turned four. Like you she didn't have any of the 'classic' symptoms. 3 1/2 years later she is growing and thriving on a GF diet and doesn't miss the old wheat-y things at all. We had the rest of the family tested and out blood tests all came back negative. In the meantime we realized that we were all gluten sensitive and our whole family has been gluten free for three years. I don't have much faith in the accuracy of the blood tests. But I do believe that if you feel better on a GF diet than that is your answer (no cheating of course). There are a few good books about why gluten makes us sick that I found helpful - in particular Dangerous Grains by Braly and Hoggan. Many people do not realize that celiac disease is only one of 200 symptoms of gluten intolerance.

The good news is that Disney is FANTASTIC with gluten free dining. When you make your ADRs just mention (or check the box if online) that there is a gluten intolerance in your party. At each TS restaurant, a chef will come to your table to take your order or walk you through the buffet. Call or Email Special Diets (I always forget the address - but you can find it under FAQs) and request Gluten information. They will send you information about which QS restaurants in each park can accommodate you as well as which snacks are GF.

We are heading back to WDW next month and I am so looking forward to a week off from cooking and planning all our meals!

-Karen

 

[pamjb]

We traveled to WDW in June 2009 with my Best Friend, who has celiac disease. She was thrilled with the things that she could eat. The chef at Prime Time even had Gluten Free rolls for her to eat. We also ate at Cape May Buffet (dinner), The Wave (dinner). The chef at Cape May came out and showed her what she could and could not have from the buffet. They even made her a special dessert (can't remember what it was though).
I noted it on our ADR's when I booked them and the CM verified it when we arrived at the restaurant.
Another friend is traveling this May, and she has received a packet of info from Disney regarding her gluten-free diet.

 

[Traveliz]

My husband has had celiac's for almost thirty years now. Disney is one of the easiest places for us to go and for him to have some great food choices. You can pretty much make your ADRs for any restaurant and the chef will come out and talk to you.

There are many threads about this and a wonderful resource at Disney to get info in advance - do a search and enjoy reading.

Celiac's isn't fun but you know there are SOOOO MANY more choices now than there were thirty years ago - we used to have to order all his food by mail order! The local health food stores would have a few things and then we just did basic food...now we can pretty much recreate anything.

Oh and my husband has told me time and again in studies he has read that test results often come back conflicting and it takes a few times to get consistent results.

Liz

 

[wdhinn89]

So here's my story...I recently had an EGD (test where they put the little camera down your throat) because of heartburn issues, and a biopsy revealed damage consistent with Celiac. So, my doctor ordered a blood test, which came back negative for Celiac. My doctor then ordered a genetic test that showed I am a carrier of the Celiac gene. My doctor's diagnosis...most likely Celiac, but can't confirm for sure. He referred me to a dietician who specializes in Celiac disease as he wants me to begin following a gluten free diet. I've never had any of the classic symptoms, such as stomach pain, so all of this has come as a complete shock to me. Not to mention, as a girl who loves pasta, bread, cereal, etc., I am heartbroken over this.

You need to find a new doctor who specializes in Celiac Disease.

The only way to confirm Celiac is to have an endoscopy biopsy. Many samples are taken from your intestines and the doctor must know the correct way to take these samples (obviously your doctor would not know how to do this) and then pathologists are able to see if there is any villi damage based on these samples. If there is villi damage, then you have a confirmed Celiac diagnosis. This is he only way to see if you definitely have Celiac or not.

DO NOT go on a gluten free diet until you have had your endoscopy because it will skew the results.

If you are confirmed to have Celiacs, following the gluten free diet will heal your intestines but you will always have to stay on the diet. The diet is not easy but doable. There are gluten free breads and pastas that you could find but it is not a diet you would want to go on if you do not have a confirmed diagnosis.

Good Luck!!!

 

[minniejack]

if you haven't discovered the forums on celiac.com, they are a great for questions and support

 

[minniejack]

here are some previous threads about disney
http://www.disboards.com/showthread.php?t=2380636
http://www.disboards.com/showthread.php?t=2306960