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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.

Help Please - No Gluten, No Lactose, And No Sucrose
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I really need help. I'm overwhelmed and don't know where to start. We have been gluten free for almost a week since my almost 4 yr old was diagnosed by endoscopy last week. I just got a call from the ped GI's nurse that told me we need to stop lactose and sucrose. I'm ok with lactose. I know they have many options out there for lactose free dairy products. I'm overwhelmed though when I put it all together. For the past week, I have been giving him coco pebbles, yopait yogurt, sting cheese, lots of fresh fruit, pb and j sandwiches, and other grilled meats. I have been using one meal a day (typically dinner) to experiment with new gluten free breads, attempting gluten free bisquick breaded chicken, and other gluten free recipes.

When I asked the nurse questions such as "can he have fresh fruit? Artificial sweeteners? How long do we need to do this?" She had to get off the phone and ask someone else all of my questions and was not very educated on the matter. I was told no fruit (which I figured) and we could have artificial sweeteners just not splenda. My son's 4 yr old birthday party is in 2 weeks - I'm guessing no cake. Also, I have recently got him to swallow his Prevacid capsule in a spoonful of applesauce - ideas on this now. We have the pill form because evidently the chewable tablet is not covered by insurance.

I'm overwhelmed and don't know where to start.

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sa1937    324

While I don't recall your previous posts, why does he need to be sugar-free?

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Takala    413

I don't understand this. Why would any 4 year old need to have no fruit ? Call the doctor's office back.

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T.H.    404

I would double check again exactly what your child shouldn't eat and why, and get a good Dietician to help figure it out. Is it something like this: http://en.wikipedia.org/wiki/Sucrose_intolerance ?

You'll want to make sure that a celiac knowledgeable doctor diagnoses something like that, because from what it sounds like something like celiac disease can cause a temporary form of this (yeah, according to wikipedia, so I don't know how reliable that source is. :D )

Some fruits have sucrose as the main sugar, some have fructose as the main sugar, so not all are big sources of sucrose. And when it comes to veggies, many of those are technically fruit as well, so where would they fall? And sugarcane is obviously an issue, too, yes? Lots of other foods have added sucrose, too (boullion can, for example), so if it's actually the issue, you'll definitely need some help tracking it down.

For food, though - you'll have to make everything from scratch, first off. There is almost nothing out there processed that is gluten free and sugar cane free (I'm allergic to sugar cane, so I was really looking in the beginning!).

If your little one can have agave syrup (that's about 2% sucrose, a little glucose, and mostly fructose), one desert treat is the So Delicious coconut based frozen 'ice cream.' It's dairy free, gluten free, and they use agave syrup rather than sugar cane. I am not sure of the other ingredients, however, so you'll need to check those.

Things that worked for us in this situation (dairy, gluten, and sugar cane free): hummus and raw veggies to dip into it, roasted chickpeas for crunchy snacks, roasted veggies, ground meat with little homemade sauces, veggies, or grains inside. Grape leaves or lettuce leaves wrapped around fish, soy sauce, and cucumber or other veggies. Chicken works well too. little rice sushi rolls are great, and meatballs as finger foods with tomato, soy sauce, mayo, horseradish, mustard, or veggie sauces. Yacon syrup is one your little one might be able to have, as it has inulin as the sweetener. Expensive, though, so you probably won't be able to use much.

Making things from whole grains should work well, for breads, although you'll have to see if you can add any sweetener at all. If not, crackers might be best. Or get some corn masa (treated corn flour) to make corn tortillas and use salt, water, and corn masa for the simplest, dry pan fried. They taste great, are filling, and are great with fried pieces of meat or potatoes. Tear off a piece of tortilla and put some of the filling on them and eat like that.

A mexican lasagna is made like that. Home-made (and cooked) corn tortillas alternating with a chicken/chile/tomatoes mixture. The chicken mixture should be juicy, so soaks into the corn tortillas. Turns out nice, IMO. Can also use tofu for another layer, if you can use that. Get silken tofu, mash it with a fork, mix it with herbs/salt/seasonings, and put it in the lasagna like you would cheese. With enough seasonings, and the strong flavors of the other ingredients, it just adds the nice consistency of almost-cheese and tastes fine. :-)

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Your questions have given me the reassurance I need to call back. I didn't realize how confused I was on the issue too. So, when we went for our initial consultation with ped GI, he stated that he wanted to do the endoscopy based on the celiac panel. He stated that he also wanted to do a test to see if my son could process lactose and sucrose. He stated that it would depend on the severity of the damage to the cilia. He stated that the receptors that process lactose live on the end of the cilia as well as the receptors that process sucrose. After doing some research today, it seems like the jury is still out on if sucrose processing is an issue that could be affected due to celiac. Some say the two are linked, while others say there is no proof.

So I guess I need to ask can he have glucose or fructose too. I guess I really need to question some more. I was told he could have artificial sweeteners, but I'm not excited about giving him those.

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Oh, and I should clarify. The ped gi stated the sucrose and lactose intolerance is only temporary. For now, he wants us to wait 2 months before adding those food back in to his diet.

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Sesara    1

Are you sure that it's sucrose and not fructose? I know that lactose and fructose intolerance are both linked to celiac and usually brought on temporarily by damage to the intestines. Once the intestines heal, the ability to process these things is usually regained. My DS has his scope in another week and a half, but those two intolerances are something I've noticed for some time.

Most fruits have more fructose than sucrose, and it appears that a balance of the two tends to cause fewer issues. So bananas are actually one of the few fruits that generally don't cause an issue. A couple of other fruits that are more balanced are blueberries and very ripe grapes.

This is all just from reading that I have done trying to help DS. And I would imagine that you have to base it on what they can tolerate as well. DS does ok with small amounts of lactose in fermented dairy, while fresh milk will trigger 3 days of diarrhea, and too much cheese will always lead to couple of light colored stools. Too many strawberries or mango and his poop just goes right through him, with huge chunks of undigested fruit in it, but he can eat a limited amount without a major change from his usual stools (which are generally loose and sandy, but we aren't gluten-free yet).

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Kelleybean    8

Another option for sweetener might be Stevia. There are a couple of blogs with gluten free, dairy free, and sugar free recipes. I know of the Spunky Coconut and Elana's Pantry, but I'm sure there are others.

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Unfortunately, he wants us to stay away from fructose and sucrose. I called my ped gi today and demanded I speak to someone that could help me. I received a call from the head of nursing who was VERY HELPFUL. He told me that since my son's gut was very sick they wanted to take out everything that would trigger a reaction (and also because he tested to positive to the lactose and sucrose test - still not sure what the test is called). He told me to first take out lactose and then call him back in a week to see how my son was doing. If I was seeing steady improvement, then we could think about just doing lactose free for another week. He said that when I start sucrose, I need remove as much as possible but it's not like gluten (a little sugar won't hurt him) He told me to focus on removing table sugar and limit fresh fruit to only once every few days. I'm relieved my son can have small amounts of sugar.

I just want to do everything perfect. I feel like I'm slowly getting this gluten free diet, but too much too soon is scary. I'm also feeling pretty confident about lactose free since my son drank a full glass of lactose free milk and didn't notice. Thanks for the support. This group has been so helpful through this scary transition. I can't wait for my son to start gaining weight and playing like his friends. :D

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