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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 Celiac.com's FREE weekly eNewsletter   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
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PhoebeC

Lack of appetite after starting gluten-free diet

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My 10 year old daughter has been on the gluten-free diet for 6 weeks, and she's feeling worse than before the diagnosis. She has very little appetite, has frequent nausea in the evening, and has lost a pound or two that she really can't afford to lose. Our whole household is gluten free except for a few prepackaged items kept in a different room, so I think there's very little chance of cross-contact. She has been put on cyproheptadine to increase appetite and is trying valiantly to eat more, but she's just not hungry and it's very stressful for her, and all of us. She's eating peanut butter, pediasure, avocado, cheese, meat, and all the other calorie-dense foods we can think of.  No oats, not too much processed food. Can anyone give us suggestions or hope that this will turn around? 

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It will turn around, but it probably is going to take more time.  Yes, adhering to the gluten-free diet is critical,  but what doctors fail to tell you is that is can take time for antibodies to decrease.  For some it is a few weeks and for others months to years.  

It sounds like you are doing everything right.  Remember, her gut is damaged and eating anything can hurt to digest.  You might consider taking her off dairy for a few weeks until you see improvement.  Then add back in starting with products with the least amount of lactose (e.g. yogurt). Many celiacs are temporarily lactose intolerant.  It might help with the nausea.   When I accidentally get exposed to gluten, I stick with soups and stews, even cooked fruit, like applesauce because it hurts to eat!  

Are you sure the medication she is taking is gluten free?  Did you call and confirm with the manufacturer?  Did she have nausea befor she was diagnised?  The side effect of this medication is nausea.  Did the GI prescribe?  

Hang in there!  

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Thank you! I have been considering lactose, though I'm reluctant to remove more things from her diet. She has not had the classic lactose intolerance symptoms of diarrhea, gas, or bloating, though I know she could still have trouble with it.

She's been on the medication for less than a week, so it's not the cause of her symptoms. I did not call the manufacturer but it is listed as safe on glutenfreedrugs.com (under the brand name periactin). It was prescribed by a pediatric GI who specializes in celiac. The first question my daughter had for the doctor was whether the medication is gluten-free, and she told us it was. 

 

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Dairy is a major issue with celiac, due to the enzymes to break it down being produced by the villi tips being mostly destroyed or damaged first. Eliminating for a few months may be critical. I might suggest digestive enzymes, I am taking Jarrow Enzymes at 2x the dose, Jarrow Bromelain, and sometimes some extra papaya enzymes. I have issues breaking down the large amounts of foods I consume otherwise (I am trying to body build bulk). I also would look at some protein powders if I was you. Vegan protein powders are easy to digest most times an can be great. Pumpkin Seed protein is the easiest on the stomach, being a balanced PH, high in zinc, iron, magnesium, it is very good for recovery and putting on weight in addition to others. Might also consider blends, try not to get anything with too much gums in it. I like NutraKey V-Pro and MRM Veggie Elite. I also buy a whole list of others.

On her food, veggies, and meats should be cooked to almost mush, try using a crockpot and stewing them. This will make them easier to digest and break down.
Is she having any other issues? Like Bowl issues? I find I can loose hunger if I back up, and I have to take magnesium like crazy and eat a whole lot of fiber to keep it moving.

Take it you already read the newbie 101 section about getting all new cookware, and deconing the house? Bit of a extra tip I swear by to everyone, Freezer Paper/Butcher Paper. Makes a nice clean prep surface and easy clean up.

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Wow!  Good for your daughter asking if the medication was  gluten free.  

She might not be lactose intolerant at all.  It is the one intolerance that is most common among celiacs.  Just stay the course.  It just takes time.  Each individual is different as to how they heal.  Kids are supposed to heal faster.  

Will the GI recheck her antibodies at three months or six?  Follow-up Care is important. 

http://www.cureceliacdisease.org/faq/how-often-should-follow-up-testing-occur/

 Soon, she will be just fine!  

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I had hardly any appetite when I went gluten-free, for about 6 months to a year. I lost about 40 pounds. I saw food as a danger and in turn, it was nauseating to me. The less I ate the more nauseous the food made me. One day I remember food just tasted good again and then I was able to put back on some weight. These days I don't eat half of what I used to pre- gluten-free, but my body is at a healthy weight. At least the doc thinks so. But food just isn't as attractive as it used to be. I learned to eat to live. Every bite counts towards nutrition.

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Hi Phoebe-

We're paddling up stream in the same boat.  I have a 12 year old daughter who was diagnosed with celiac disease 6 weeks ago.  She struggles with a lack of appetite, abdominal pain- often worse than pre-diagnosis, and increased pain after eating.  The evenings are the worst!  I call it the celiac witching hour.  After a few bites of dinner she often starts moaning and ends up on the couch. She is TINY, 10% on the growth chart for her age, skin and bones, and has lost 3 pounds over the 4 weeks.  I know how you feel, exhausted, discouraged, and terrified that trace gluten is contaminating your girl.

Over this past week and a half I feel we are turning a corner. Here is what has helped: 

1. Our GI rechecked her TTG's, they are coming down nicely, so I know she is not getting trace gluten.  Depending on your daughter's case, your GI may do the same. It was helpful to decrease my anxiety and rule that out.

2. Our GI took her off dairy a few weeks ago, I KNOW it's an awful thought and exhausting to contend with removing more from the diet, but it's not so bad. The good news is you will know quickly, in about a week if dairy is making a difference after removing it.  The problem is lactose in milk products. When healing from celiac, compromised intestines often don't successfully communicate with our other organs to emit digestive enzymes (including lactase, the enzyme needed to digest lactose in milk based products). Also, you can simply give your girl a lactase chewable enzyme for kids with a dairy containing meal is she really loves a certain foods that you'd rather not take away right now. Fairway Milk is lactose free, it's ultra filtered, so very high in protein, low sugar, and delicious (my kids like it better than regular milk). Truly, I found dairy is relatively easy to substitute. I will say however, taking our daughter off of dairy for two weeks did not make a difference, but maybe something that will help your situation.

3. When my daughter wasn't eating a substantial meal, she would still take her multivitamins. These can be tough on the stomach lining and cause stomach upset and nausea. I started to make sure she had a good meal before taking her MVI.

4. We were given the thumbs up on probiotics. My daughter took children's culturelle daily for a few months: prior to and after diagnosis. I pulled it 2 weeks ago just thinking maybe it's too much right now for her system. Maybe something to consider.

5. My daughter improved consistently (much less abdominal pain, formed BM's, and began eating much better) after adding childrens digestive enzymes with each meal. What I mentioned in #2, the lack of digestive enzymes with celiac disease, may include other enzymes in addition to lactase. Maybe it was timing, that she was naturally turning a bit of a corner, but it also coincided with starting "Tummy Zyme" kids digestive enzymes by Animal Parade. I read about the lack of digestive enzymes in the book "Celiac Disease-a Hidden Epidemic." I then researched kids digestive enzymes and these were rated well.

6. I found by talking to my daughter she could pinpoint what didn't upset her stomach, foods that she seemed to always tolerate well. Maybe due to simple ingredients, or maybe psychological, she could always tolerate skinny pop (popcorn, salt, and sunflower oil) and Milagro corn tortilla chips w/ Goodfoods chunky guacamole.  I add extras in her school bag, in the car, and on the go for snacks. I'd let her choose these over other healthy snacks or foods I had in mind if it meant calories and her actually eating. Maybe there are foods your daughter can pinpoint helping?

I recently talked to a few celiac disease moms and they said it took up to 3 months for their child to feel better and eat well consistently. I've also heard it's not uncommon for your child to have good/better days and then bad days during the healing process. 

I hope you're daughter begins to feel better soon and is able to take in more calories!

 

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On 10/23/2017 at 6:04 PM, desirun said:

Hi Phoebe-

We're paddling up stream in the same boat.  I have a 12 year old daughter who was diagnosed with celiac disease 6 weeks ago.  She struggles with a lack of appetite, abdominal pain- often worse than pre-diagnosis, and increased pain after eating.  The evenings are the worst!  I call it the celiac witching hour.  After a few bites of dinner she often starts moaning and ends up on the couch. She is TINY, 10% on the growth chart for her age, skin and bones, and has lost 3 pounds over the 4 weeks.  I know how you feel, exhausted, discouraged, and terrified that trace gluten is contaminating your girl.

Over this past week and a half I feel we are turning a corner. Here is what has helped: 

1. Our GI rechecked her TTG's, they are coming down nicely, so I know she is not getting trace gluten.  Depending on your daughter's case, your GI may do the same. It was helpful to decrease my anxiety and rule that out.

2. Our GI took her off dairy a few weeks ago, I KNOW it's an awful thought and exhausting to contend with removing more from the diet, but it's not so bad. The good news is you will know quickly, in about a week if dairy is making a difference after removing it.  The problem is lactose in milk products. When healing from celiac, compromised intestines often don't successfully communicate with our other organs to emit digestive enzymes (including lactase, the enzyme needed to digest lactose in milk based products). Also, you can simply give your girl a lactase chewable enzyme for kids with a dairy containing meal is she really loves a certain foods that you'd rather not take away right now. Fairway Milk is lactose free, it's ultra filtered, so very high in protein, low sugar, and delicious (my kids like it better than regular milk). Truly, I found dairy is relatively easy to substitute. I will say however, taking our daughter off of dairy for two weeks did not make a difference, but maybe something that will help your situation.

3. When my daughter wasn't eating a substantial meal, she would still take her multivitamins. These can be tough on the stomach lining and cause stomach upset and nausea. I started to make sure she had a good meal before taking her MVI.

4. We were given the thumbs up on probiotics. My daughter took children's culturelle daily for a few months: prior to and after diagnosis. I pulled it 2 weeks ago just thinking maybe it's too much right now for her system. Maybe something to consider.

5. My daughter improved consistently (much less abdominal pain, formed BM's, and began eating much better) after adding childrens digestive enzymes with each meal. What I mentioned in #2, the lack of digestive enzymes with celiac disease, may include other enzymes in addition to lactase. Maybe it was timing, that she was naturally turning a bit of a corner, but it also coincided with starting "Tummy Zyme" kids digestive enzymes by Animal Parade. I read about the lack of digestive enzymes in the book "Celiac Disease-a Hidden Epidemic." I then researched kids digestive enzymes and these were rated well.

6. I found by talking to my daughter she could pinpoint what didn't upset her stomach, foods that she seemed to always tolerate well. Maybe due to simple ingredients, or maybe psychological, she could always tolerate skinny pop (popcorn, salt, and sunflower oil) and Milagro corn tortilla chips w/ Goodfoods chunky guacamole.  I add extras in her school bag, in the car, and on the go for snacks. I'd let her choose these over other healthy snacks or foods I had in mind if it meant calories and her actually eating. Maybe there are foods your daughter can pinpoint helping?

I recently talked to a few celiac disease moms and they said it took up to 3 months for their child to feel better and eat well consistently. I've also heard it's not uncommon for your child to have good/better days and then bad days during the healing process. 

I hope you're daughter begins to feel better soon and is able to take in more calories!

 

Thanks for sharing your story. It does sound very similar to my daughter, especially the "witching hour."  Please post again if you find anything that turns out to be successful! It's helpful to hear others' experiences.

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