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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.

Does Going Gluten-Free Make You Hungrier?
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After finding out that my 4 year-old son is allergic to wheat and his history of GI issues, I begun trying to feeding him gluten-free, however, now he is hungry ALL the time!

He is very particular in what he eats, he likes his routine of food: an Eggo waffle for breakfast, a PB&J sandwich for lunch, and then for dinner he is ok with whatever. I found Van's wheat and gluten-free waffles to substitute for his Eggos, Udi's bread to substitute for his bread and have been feeding him gluten-free dinner for the last few days, but he is constantly telling me he is hungry.

In between meals he has been eating snacks like apples and popcorn, but right after eating snacks or a meal, he tells me he is hungry again! It is so strange because he usually eats like a bird.

We have been trying to feed him gluten-free, however my husband has forgotten and slipped up twice. On the second day, I came home to find him feeding our son spaghettios and today he bought him a hamburger happy meal while they were out. (He says he forgot and that our son was hungry).

Even with the slip-ups though, we have definitely cut back on the gluten/wheat and the boy is always asking for food. Is this a good thing? Does it taper off?

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I'm confused. How was your son diagnosed with a wheat allergy? Is it a true allergy, or is it Celiac's, which is an autoimmune disease, or wheat intolerance? If your son has Celiac's, your husband needs to understand that 100% adherence to a gluten free diet is necessary, and that he can't "forget" because even if you can't see the damage, that doesn't mean it's not happening. If it is an allergy, I would think that such lapses would provoke an anaphylatic response.

But in regards to why someone with a wheat intolerance or Celiac's might be hungry all the time, it could simply be that your son's tummy is feeling better off wheat and therefore he has more of an appetite.

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I'm confused. How was your son diagnosed with a wheat allergy? Is it a true allergy, or is it Celiac's, which is an autoimmune disease, or wheat intolerance? If your son has Celiac's, your husband needs to understand that 100% adherence to a gluten free diet is necessary, and that he can't "forget" because even if you can't see the damage, that doesn't mean it's not happening. If it is an allergy, I would think that such lapses would provoke an anaphylatic response.

But in regards to why someone with a wheat intolerance or Celiac's might be hungry all the time, it could simply be that your son's tummy is feeling better off wheat and therefore he has more of an appetite.

My son was diagnosed as having an allergy to wheat after a blood test. We are currently awaiting the results from a Celiac screening (also blood drawn). I completely agree about the 'forgetting'. I think that since this is so new, my husband hasn't had a chance to fully digest the ramifications, yet.

Also, the Dr. hasn't technically told us to go off of gluten, yet. As I have been reading posts here I am a little confused on what to do. Knowing that my son does have an allergy, I want him off right away, but if the bloodwork comes back positive for Celiac and then we need to do a biopsy, I might be sabotaging the biopsy by starting to take away the gluten right now. Luckily, my son's allergy does not provoke an anaphylactic response. We just found out about it after I demanded an allergy test since he has had so many GI issues (constipation, vomiting daily for about a month with no fever and feeling fine all day) I thought he might have a milk intolerance since I tried taking that away and the constipation went away. Apparently, he does not have a milk allergy, but milk causes the constipation. When we get back the Celiac screening results we will figure out our next steps.

The main concern for my post, however, is to find out if this increased appetite is a normal side effect of moving to gluten-free.

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Yes. I was ravenous for a while after going gluten free. Was downright annoying. It did taper off after a little while. I think it's just the body adjusting to the fact that food no longer causes pain. Sounds like you're on the right track with removing gluten.

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It's sounding more like he is celiac with the constant hunger thing. Common reaction when celiacs go gluten-free. Just put hungry, or ravenous, or starving in the search box above & you will come up with more posts than you can count about how when one goes gluten-free they can't stop eating & are hungry all the time. I would literally vacuum with one hand while eating an apple with the other. Give him apples, grapes, pears, any fruit to snack on, raw carrots, celery sticks filled with peanut butter, nuts, raisins & make sure you carry some snacks in your purse & in the glove compartment of the car. Larabars are great! And they come in several flavors. He probably needs more protein in the am too than what he used to get. The body craves protein so try to up that especially in the morning. This will settle down but it's going to take a while. I remember thinking -- OMG! Am I going to eat 24 hrs. a day for life?blink.gif

If he is celiac then what's happening is that his body is making up for the nutrition it had not been getting & now it WANTS it. It's also part of the gluten withdrawal process & the body is resetting itself. Let him eat his fool head off; it's okay! In fact it's a good thing.

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It's sounding more like he is celiac with the constant hunger thing. Common reaction when celiacs go gluten-free. Just put hungry, or ravenous, or starving in the search box above & you will come up with more posts than you can count about how when one goes gluten-free they can't stop eating & are hungry all the time. I would literally vacuum with one hand while eating an apple with the other. Give him apples, grapes, pears, any fruit to snack on, raw carrots, celery sticks filled with peanut butter, nuts, raisins & make sure you carry some snacks in your purse & in the glove compartment of the car. Larabars are great! And they come in several flavors. He probably needs more protein in the am too than what he used to get. The body craves protein so try to up that especially in the morning. This will settle down but it's going to take a while. I remember thinking -- OMG! Am I going to eat 24 hrs. a day for life?blink.gif

If he is celiac then what's happening is that his body is making up for the nutrition it had not been getting & now it WANTS it. It's also part of the gluten withdrawal process & the body is resetting itself. Let him eat his fool head off; it's okay! In fact it's a good thing.

Thank you so much for all of the info! This forum is so helpful and supportive!

So I have another question. I have advice from others not to go gluten-free, yet (until all of his celiac testing is done), but that is so hard knowing that I am poisoning my son with wheat! Do you think it is ok to feed him gluten-free all day and just have one thing with wheat in it each day until we finish all of the testing? Or do I need to keep him on his pre gluten-free diet? Also, I noticed that yesterday after the happy meal incident he was all itchy and had a mild rash on his face and arm. Does taking wheat away and then adding it back make his reaction worse? His doctor does have him on chewable Singular tablets for allergies.

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Thank you so much for all of the info! This forum is so helpful and supportive!

So I have another question. I have advice from others not to go gluten-free, yet (until all of his celiac testing is done), but that is so hard knowing that I am poisoning my son with wheat! Do you think it is ok to feed him gluten-free all day and just have one thing with wheat in it each day until we finish all of the testing? Or do I need to keep him on his pre gluten-free diet? Also, I noticed that yesterday after the happy meal incident he was all itchy and had a mild rash on his face and arm. Does taking wheat away and then adding it back make his reaction worse? His doctor does have him on chewable Concerta tablets for allergies.

That's a mistake that SO many make --- going gluten-free before all the testing is done. NO, gluten-free during the day & then just one thing a day of gluten is NOT enough. And now that he is "gluten light" you will have to gluten him up for an endoscopy if the doc wants to do one. AND that will mean the equivalent of 3 or 4 slices of bread per day for at least 2 months depending on how long he has been gluten light.

And yup; taking gluten away & then adding it back in makes the reaction (almost always) stronger. And now he's getting rash from gluten. Not good. That's either dermatitis herpetiformis OR the predecessor. At any rate it shows where he's headed & certainly means he's either full blown celiac or just on the verge & will soon be. The problem with children is that testing --- blood work or endoscopy --- is not as reliable even as for adults. Children often turn up neg. on blood & then as far as the endo goes; they usually don't have ENOUGH damage yet (b/c they are so young) to show.

AND if he gets put on steroids THAT will invalidate the testing (blood or endo) & you will turn up with negatives.

I'm sorry to be the bearer of bad tidings but that's how it is. Now, if we were talking about an adult then I would say screw the official dx & go gluten free b/c you KNOW that's the problem. But with a child it's different. You most likely will NEED the official dx for school so he can be safe there & they will take his situation seriously --- also later for college.

Rock & a hard spot.sad.gif

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That's a mistake that SO many make --- going gluten-free before all the testing is done. NO, gluten-free during the day & then just one thing a day of gluten is NOT enough. And now that he is "gluten light" you will have to gluten him up for an endoscopy if the doc wants to do one. AND that will mean the equivalent of 3 or 4 slices of bread per day for at least 2 months depending on how long he has been gluten light.

And yup; taking gluten away & then adding it back in makes the reaction (almost always) stronger. And now he's getting rash from gluten. Not good. That's either dermatitis herpetiformis OR the predecessor. At any rate it shows where he's headed & certainly means he's either full blown celiac or just on the verge & will soon be. The problem with children is that testing --- blood work or endoscopy --- is not as reliable even as for adults. Children often turn up neg. on blood & then as far as the endo goes; they usually don't have ENOUGH damage yet (b/c they are so young) to show.

AND if he gets put on steroids THAT will invalidate the testing (blood or endo) & you will turn up with negatives.

I'm sorry to be the bearer of bad tidings but that's how it is. Now, if we were talking about an adult then I would say screw the official dx & go gluten free b/c you KNOW that's the problem. But with a child it's different. You most likely will NEED the official dx for school so he can be safe there & they will take his situation seriously --- also later for college.

Rock & a hard spot.sad.gif

Wow, thanks for the info! So we only started the gluten-free (with slip ups) 4 days ago, so I guess we will go back to normal. I am pretty sure that there has to be damage to his intestines somewhere. We have battled constipation and diarrhea since birth (mostly extreme constipation). We took away dairy a few months ago and the constipation got better. However, about two months after removing dairy, he began vomiting EVERY morning, but then was fine all day. Then he started getting paler and less active. This went on for almost a month before I demanded an allergy test (his doctor kept saying he was just catching different viruses). When we found out that he was not allergic to dairy, we put him back on and instantly the vomiting stopped, but the constipation is back.

I am concerned on how long they must be off steroids to keep from skewing the results. He was put on Prednisone earlier this year because of respiratory problems from a severe 'cold'. (Last year we were ambulanced up to a children's hospital because he got a 'croup-like' cold and quit breathing, this time the doctor didn't want to take any chances). I want to say it was February, but honestly I can't remember.

I also realized that I put the wrong medication, he is currently taking Singular for allergies, not Concerta. I don't know where that came from! LOL.

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He could be unable to digest dairy ( lactose intolerant). That isn't an allergy to milk. It is very common with Celiac and will sometimes resolve after a few months of healing.

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I'm not sure how long he needs to be off the steroids. I would think if it was Feb. that it would be okay. The doc should know the date or you could check with your pharmacy & they will be able to tell you.

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