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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Traveling Gluten-Free
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Hello,

I am new to this whole gluten-free thing. My doctor and I think that my 15 month old son has Celiac but we haven't had any tests done yet (I am actually taking him to get the blood test done today). Anyway we are leaving to California tomorrow from Utah and I am so stressed trying to think of snacks for the car and to know if there are any fast food or other restaurants that he can even safely eat at. So do any of you guys have any favorite snacks you take on road trips that a 15 month old would like and/or is there anywhere you actually trust to eat? Also, I think I am going to buy him some gluten-free bread, do you have a favorite type or brand?

Thanks in advance!

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I wouldn't go gluten free until you see if your son will need a biopsy. You have to be on gluten for it to be correct. So go on your trip as normal until you hear back about blood work and biopsies.

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Since you're having the blood tests done before you go to California, you're right to want to feed him gluten-free food. As far as snacks go, he would be able to eat dried fruits and gluten-free cereals (specially marked boxes of Chex cereals, Cocoa Pebbles and Fruity Pebbles, and specially marked boxes of Rice Krispies...and I can't remember if Cheerios has a gluten-free version). Be careful about the Pebbles cereals, because I think the marshmallow variety is NOT gluten free. You might also explore the gluten-free cereal aisle, because there are some good brands, like Enviro Kids. I'm sure you'll come up with some ideas once you peruse the gluten-free options.

As for as fast food restaurants, the only one where I feel safe is Carl's Jr. You can find them throughout California, but if you buy fries, you'll have to ask if they use a dedicated fryer (most do). You could buy a chicken or beef patty without the bun or special sauce and cut it up. The ketchup they use is gluten free. Don't go to Taco Bell, because the beef they use has wheat in it.

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I agree. DO NOT CHANGE his diet until all testing is complete. The MD might want to do a biopsy - if blood is positive or negative - and you have to be eating gluten to get the most accurate results.

Keep his diet "normal" until you have done all testing - and then try the diet (even if he tests negative) as that can sometimes be considered an additional "test."

While you are waiting, try some gluten free products so that when the time comes, you are ready to make the switch.

We like Udi's bread (and hot dog buns, hamburger buns, etc.) All the stuff from Udi's is pretty good.

Scharr's crackers are good and come in individually wrapped packets . . .great to pack with peanut butter, hummus, or those little pouches of tuna. (Check out GoPicnic lunches. I "copy" them and create ones my son likes for when we travel.)

Pretzels travel well. Glutino Pretzels are good. Snyders makes a good gluten-free one too.

We don't eat out while traveling - no one wants to be sick on vacation. I pack meals-to-go for the trip and we always stay somewhere with a kitchen. Some hotels have breakfast included. I will bring our own cereal but there are usually choices we can all enjoy (yogurt, hard boiled eggs, fresh fruit, etc.) We stick to things that are individually wrapped and less likely to be contaminated.

Cara

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I am not aware of too many gastros who would be willing to perform an endoscopy on a 15-month-old, and, similarly, there aren't many parents who would want their little one to go through an endo at such a tender age. Since you are having the blood tests done BEFORE your trip, I stand by my advice to feed your son gluten-free food from here on out. Many doctors will provide a diagnosis of celiac if the blood tests are positive and the symptoms resolve on a gluten-free diet. Endoscopies aren't worth anything, in my opinion, and my opinion is supported by leading celiac expert Dr. Alessio Fasano, who has stated in numerous articles and at numerous lectures that endoscopic biopsies are so poorly executed, there is a high rate of false negatives; therefore, if the blood test is positive and the symptoms resolve on a gluten-free diet, a diagnosis of celiac can be made. I personally have no faith in gastro surgeons or pathologists to perform an endoscopic biopsy properly. People on the forum are of one mind or another regarding endoscopic biopsies, and I fall clearly in the "don't bother" camp.

If the blood tests are negative, then it is up to you if you wish to have your son follow a gluten-free diet. He may still, in fact, have celiac or may be gluten sensitive.

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I am not aware of too many gastros who would be willing to perform an endoscopy on a 15-month-old, and, similarly, there aren't many parents who would want their little one to go through an endo at such a tender age.

I don't know what your experience is with Celiac in children but most if not all Dr's will insist on an endoscopy for children unless there is a family link as well as the genetics. I do know Dr. Fassano has changed the "golden standard" BUT that research hasn't gotten out to all the Dr's yet. IF the Dr. isn't in the know about these changes, they will not dx on the 5 criteria. So going gluten-free without the Dr. saying so could lead to them not making a dx and that would not be good.

Has your Dr told you to go off gluten? If they have not told you to go off it I would not. I would not change your childs diet at all till you see a board certified pediatric GI Dr.

Good luck on your trip!

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StephanieL,

At celiac conferences, the gastro speakers commonly state that they will perform endoscopies once a child has turned two. Oftentimes, they will not even order blood tests until the age of two, since they consider them unreliable until then.

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I haven't heard that at the ones I have been to nor from any of our Dr's. Interesting.

I still think the best plan of action would be to continue on gluten till you at least talk to the Dr's office. They can advise you one way or the other.

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Hello,

I am new to this whole gluten-free thing. My doctor and I think that my 15 month old son has Celiac but we haven't had any tests done yet (I am actually taking him to get the blood test done today). Anyway we are leaving to California tomorrow from Utah and I am so stressed trying to think of snacks for the car and to know if there are any fast food or other restaurants that he can even safely eat at. So do any of you guys have any favorite snacks you take on road trips that a 15 month old would like and/or is there anywhere you actually trust to eat? Also, I think I am going to buy him some gluten-free bread, do you have a favorite type or brand?

Thanks in advance!

I like the Kind Bars but I don't know if your child can have nuts or not. They have quite a few different ones to choose from. Three Bakers has the best bread and rolls that I have tried yet. They have a website to look at. Have you tried looking at Pinterest? There are people who have gluten-free recipes. I post alot on them.

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Thanks for all of the advice! I realized after I posted this that I didn't make myself clear about what is going on. My son was extremely colicky as a baby, so much so that I tried EVERYTHING under the sun to help him, and the only thing that helped was the chiropractor... crazy I know... but it was the most incredible thing I have ever seen. EVERY TIME after an adjustment he was a completely different baby. Anyway his colic seemed to be doing a ton better around 7 months, although he still had times where he was fussy. Then when he was about 8.5 months old he started crying all day again, so I would take him to the chiropractor and it helped but not as much as it used to. He also broke out with horrible eczema all over his body. So for about a month I had a very fussy little guy. Well when he was about 9.5 months old I realized that he started getting fussy again, and got the rash right around the time that I started to introduce solid foods to him and I wondered if he was allergic or intolerant to certain things. So I took egg, milk, and wheat out of his diet and he was a completely different baby! It was crazy! So I took him to an allergist and he didn't have any allergies but the allergist said he probably has an intolerance to one of those things. We have since then narrowed it down to dairy and/or wheat. I had him off both until just a few weeks ago when I put him back on gluten so that I could get blood tests done to check for celiac. For the first two weeks there were no signs that anything was wrong so I thought that maybe he grew out of it, but then about 5 days ago he started getting super fussy, and I thought it was teething or an ear infection, then a yesterday he started having HORRIBLE diarrhea and terrible gas, so I took him into the doctors and she suggested that he could have a stomach virus or it could be a reaction to the gluten. My motherly instincts say that it is a reaction to the gluten. So since he has been back on gluten for a few weeks I wanted to get the blood tests done, before I leave because I want to put him back on a gluten-free diet asap because I don't want him to be sick on our trip since it will be 2 weeks. Then when I get back and depending on the results I will have to decide if I want to have further tests done. Thanks for your concern and support! It is great to hear all the opinions about celiac since I am new to all of this and don't know much about anything. Also I just want to clarify that my doctor said that the blood tests are not very accurate until age 2 but that if I really feel like he might have celiac it might be worth testing him, because if they do come back positive then I can take action right away to make sure that our home and lifestyle support his gluten-free diet and if they come back negative I can keep him on a gluten-free diet if I would like until he is older and can get tested again.

Anyway, thanks for the tips on snacks and restaurants, if anyone else has any other snacks their little one loves let me know!

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I too wouldn't go gluten-free until you get the testing back and speak to a pedi GI about it. My son was taken off gluten thanks to an allergist whom didn't know what he was doing (and I was not educated on Celiac at the time) and totally screwed things up. He had to go back ON gluten for his scope, which he had in Sept before he turned 2 in late Novemeber. There was damage but not enough to confirm on bx Celiac. Of course not because he was gluten-free for 6wks then on gluten for 2wks prior to the scope. He was one SICK child those 2wks as well, I would NEVER do that to him again. We moved and changed GIs and have a dx of Celiac based on clinical symptoms and his very first endoscope. So, do not change his diet until you speak to a pedi GI about his blood work.

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You are driving, so bring food for lunch, etc so you don't have to go to fast food. Lunch meat, cheese & yogurts ( unless he's still off dairy?), fruits, cucumbers, things he won't choke on. Or you can do grapes, but bring a sharp knife and cut them up small. Chex cereals, hot dogs, PB on crackers or small pieces of apple or just his fingers. Kids that young don't usually care if you dont heat the hot dog. Just cut small for the choking hazard.

He's so young, he doesn't have to get into the habit of junk food and fast food.

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Not sure if you will be close, but there is a completely gluten free store in Layton, Utah. She has a list of area places they have eaten.

http://www.ieatglutenfree.com/

Eleanor's in Sandy is a bakery with a lunch.

http://www.eleanorsbakeshop.com/

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At 15 mo, it shouldn't be too hard to travel gluten-free. We just got back from our first road trip with our newly diagnosed 8-yr-old. For eating out, we either stopped at a grocery store and picked up food or ate at Wendy's (baked potatoes, chili, salad). We checked cities we were going through ahead of time to find restaurants with gluten-free options and there were quite a few to pick from, so eating out was ok.

Snacks that are gluten-free and car-friendly: Glutino pretzels, cheese, fruit snacks, dried fruit/fruit leathers, fruit, carrots, nut crackers, tortilla chips, Chex cereals, etc. We kept a loaf of gluten-free bread plus peanut butter and jelly on hand for lunches, too. After sampling a number of different kinds of bread available en route, we all liked Udi's the best. We kept the whole family gluten-free for the trip, so we didn't have to worry about cross-contamination in the jelly jar and so forth.

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