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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.

How To Gain Weight When You Aren't Better
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14 posts in this topic

My son has been gluten-free for 3 weeks now; his condition isn't improving at all and I'm despairing of figuring out how to get some food in him. Everything still goes right through him for the most part (he's 10 -- 53 inches tall and now weighs only 52 pounds--I can span his thigh with my hand--down 10 since this started in late October). We've no medical help--the peds GI scoped him and his OFFICE called to tell us "yep, he's celiac, we'll do follow-up bloodwork in June". Our pediatrician is trying, but you know--there's no medical miracle. They want us to be dairy free and obviously gluten free; sugar seems to be a problem as does anything spicy. Advice? Timeline? (a support group woman said it is realistic to hope for improvement after 5 weeks) His "best bets" are gluten-free english muffins, purple grape juice watered down, peeled apples, McDonald's french fries, and gluten-free cereal. If he eats too much, the gas and bloat (even on Zantac) is awful, he's nauseus and sometimes throws up. Sorry to be so long winded....

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How about more high-caloric-density foods? Like nuts (and nut butters on the english muffins or apples), avocados, and coconut.

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ryebaby0,

How about some small amounts of protein, like turkey, to see how he tolerates it? Perdue's brand is gluten-free, as is Shady Brook Farms (I don't know if that is available where you live). SOME cold cuts are gluten-free, but many are not. Here is a very nice list of gluten-free foods, most of which can be found in a regular grocery store. The only unfortunate thing is that they consider oats to be gluten-free, which may or may not be true; the jury is still out on that one. So, use this list (and others you may find) as a starting point, but do verify the information with the manufacturer--and don't forget to ask about cross-contamination during production!

I hate to say this, but I am leery of gluten-free cereals. I believe most of them, if not all, are made in facilities that also process gluten-containing grains, and my older son has had an unmistakable reaction to one variety that was clearly labeled gluten-free on the box. While your son is healing, it would probably be a good idea to skip the cereal (and possibly the gluten-free English muffins as well, depending on where/how they are manufactured) altogether, even though it is probably a comfort food. McDonald's fries make me nervous, too, even though they are supposed to be gluten-free--and they are not very nutrient-dense, even though they contain a lot of fat. Your son needs nutrient-dense foods to heal, ESPECIALLY protein. Any kind of meat he likes, or eggs, prepared simply, and maybe some vegetables for their vitamins. Fruit is good, too, but it may be contributing to your son's gas if his intestines are still too damaged to digest it. I know my older boy's bowel movements used to smell sweet-and-sour after he ate too much fruit! It is also best to avoid all dairy products (even lactose-free ones) until your son is well on his way back to normal. Then you can try them out again and see what happens.

A gluten-free multivitamin is definitely a good idea, and you might want to do some research on digestive enzyme supplements, which might help him get more use out of the food he eats. Here is a place to start looking, if you're interested.

Oh, and lastly, here's an idea for a meal your son may enjoy: top Tinkyada or Rizopia pasta shells (they cook up very nicely, and most importantly, they are made in gluten-free factories) with an Asian-style peanut butter or almond butter sauce made with gluten-free tamari sauce (San-J is a good brand, but be sure to read the labels and select the gluten-free version!), a pinch of turbinado (raw) sugar, and a slosh or two of lemon juice. You could also add a shredded carrot and a handful of frozen peas to the cooking water a few minutes before the pasta is done. I love this meal--in fact, it fills the niche in my diet formerly occupied by macaroni and cheese! If you would like, I can post a specific recipe for the sauce--just ask!

Now, who's long-winded? :D Good luck to you and your son! I hope you see some solid improvement soon!

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Thanks. The gluten-free cereal and muffins are both made in gluten-free factories -- we are really cautious right now,but I'm always afraid he's still sick because I gave him something "wrong". He won't eat avocado or coconut, but I get the picture of nutrient dense. I'll admit that the fries (which I rarely let any of my kids eat) were to combat depression! He does like peanuts though, and steak (again, red meat is not something we usually have a lot of, but you know -- more of our "before dx" life out the window!)

Our ped. gave us lacto-bacillus tabs but they only seemed to make him more gurgly, heartburn-y and uncomfortable. And the doctors weren't even sure they would help. I've also heard that acidopholus milk might help, or yogurt (but that's dairy-- and it isn't just the lactose that's a problem, it's the casein, too, right?)

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It could just take time for him to get better...don't give up yet!...Now 10 year old boys tend to be picky eaters by nature (trust me had a 10 year old brother 5 years ago). So..Have you thought about making some home made chicken and rice soup? Now I don't know if your son is a big veggie baby but one of mine is...You could cook up some fresh veggies..

Gluten Free vitamins are a must here at my house..4 year old isn't big on veggies...Homemade chicken nuggets using Brown Rice Flour for Breading (and you can bake them too)..I have to use Brown Rice as my youngest son is highly allergic to White Rice..

That's another thought...Keep a food diary- everything that goes in..maybe something isn't aggreeing with him..

Well thats all I can think of right now...If I come up with anything else I'll be sure to come back here and post it for you...Hope this helps some.. :D

Steph

Mom of 2

1 w/Celiac, Reflux, Gastroparesis

1 w/Severe Reflux, Gastroparesis, and a EGD w/Biopsy scheduled for the 19th.

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I just made some almond cookies that he might like, and they're pretty nutrient dense.

1 cup gluten-free flour (I used 1/2 cup amaranth & 1/2 cup sorgum, but you might try soy for more protein/fat)

1 cup almon meal (or any other nut meal - you could probably use flour, but I like the slightly coarser texture of the meal - Trader Joe's has the nut meal)

1/4 cup sugar

1 tsp baking powder

1 tsp cinnamon

1/2 tsp pumpkin pie spice (if you don't have any, just make it a total of 1 1/2 tsp cinnamon)

1/8 tsp salt

1 tbsp water

1/4 cup vegetable oil (I used hazelnut oil - quite a good taste, I think, but you could probably get away with olive if he doesn't tolerate canola)

1/3 cup honey

Preheat the oven to 375F. Combine and mix wet ingredients. Combine and mix dry ingredients. Mix the wet ingredients with the dry ingredients. The "dough" will look VERY wet and heavy. Spoon out onto a Pam'ed cookie sheet - leave plenty of room between them - it doesn't look like they'll rise and spread, but they really do. Bake for 8-12 minutes. (Keep an eye on them, the edges start burning quickly, though if you want a bit of crunch, let them get a touch brown on the edges.) Take them out and let them cool - on the cookie shee (really!) for around 10 minutes. Then transfer to a cooling rack. And eat! Mmmm... tasty.

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I had the same problem with my children and they are just now, after 4 months of being gluten-free, starting to gain weight and my 3 year old is visably growing taller before my eyes. It's so awesome to see. One thing that both of my children love is smoothies. This is the super high calorie one I make:

Fill blender until just over blades with Almond Milk. Pacific brand is gluten free.

Add:

1-2 bananas

2 tablespoons of cashew butter or almond butter

1 teaspoon of carob powder

Dash of gluten-free/alcohol free vanilla

My 3 year old does not like Almond Milk, but you can't detect it's flavor with all of the othe yummy stuff. It tastes just like a chocolate shake!

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I just reolied to your other posting... again I reccomend the breaking the vicious cycle book and website... these are about the original celiac diet a specific diet that is meant for kids just like your son! please see thesites.. www.breakingtheviciouscycle.info and pecanbread.com in the mean time... give that boy these muffins there was a guy sounded just like your boy on another board and he ate these, had no trouble with them and gained some weight!!!

Ingredients

6 eggs

1/3 cup honey

1-1/2 cups walnuts

1 teaspoon baking soda

1/4 teaspoon salt

1 teaspoon vanilla (I like more)

1 to 1-1/2 bananas

Instructions

1. Put egg, honey, and walnuts in processor and blen 4 to 5 minutes.

2. Add remaining ingredients except salt and process until smooth.

3. Add salt and process a few seconds.

4. Scoop batter into paper-lined muffin tins.

5. Bake 350 for 30-35 minutes.

It makes 12 per batch.. I have also made this with 1 small zuchinni and a half banana they are good and sooooo easy to make!!

They are made with honey which is a monosachride a single molucule sugar.. this means there is no need for the intestine to break it down any further, also make sure the bananas are VERY ripeas bananas ripen the sugarsin them break down naturally so again they are easy to digest

to drink give him pressed apple cider or welches 100% grape juice halved with water.

The idea is not to guve the system anything that is beyond it's ability to handle

see thesites, enjoy the muffins and get that boy well!!!!!

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heheh you already have those muffins don't ya!!! that was you at the other site! is he still having trouble?? I would go for the specific carbohydrate diet for him..

the acidopholis will help some. It may make him gurgly and unpleasant for a few days.. just make sure you are not giving the bad bacteria food in there!! then they will die off and that good bacteria will prevail andhelp him heal!

wel LOL needed to get that recipe in here anyway!!!

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Well, at least I feel well-informed! Yes, that's me at the other forum, too -- I guess I wanted to cast a wide net. We tried the banana muffins, and he did like them, but what isn't included in that post of mine is later that night he threw up. Buckets. I thought it was the honey, but maybe not. Sooo, that would leave eggs. I'll have to check the food diary.

Another mom-of-celiacs has suggested it is the nutrition supplement the docs prescribed! While it is gluten and lactose free, it is high protein and that might be the bad thing? Today was a good day; he ate "a lot" which for him means 1/2 english muffin, 2 gluten-free chicken nuggets, 1 T of peas, 2 C of Modulen, a bunch of water, 1/2 banana (very ripe, as you all suggest) and he was asleep at 2:30-4. Probably tonight he'll have some applesauce, and that's it. I sooo want to get more in him, but I know that's counterproductive! We're investigating the specific carb diet since it seems to work for lots of people in our situation. If he loses any more weight he'll have to be hospitalized.

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Defnitely look into the sc diet.. there is a begining diet online at the breaking the vicious cycle site.. I really plan to do this and hope to actually see some behavioural changes in my oldest son on it too.. I fear he has this and it is manifesting itself mostly in behavioural problems with him.

although he is skinny as a stick.. and falling down the charts.

One kid at a time ...

I have to get through this endoscopy tommorow first.

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I ordered the SCD book this morning. I'm a little leery of stuff my doctor pooh-poohs but it makes sense and I thought I'd read more about it. Now a friend with celiac children is saying "get him off the supplement" because it's giving him 27g of protein a day (not all at once--it's 9g a serving) and protein is too hard to digest. His docs want to up his prednisone dose to 20mg and see if that helps.

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after 4 kids I have found that the more common sense an idea, a diet or a treatment method has, the less likely a doctor is going to beapt to use it,, it's like they gone the opposite direction from common sense,

Whatever happened to this:

Patient: Hey doc, it hurts when I do this!

Doc: Don't do it!

I don't know! do you?

Your right.. thescdiet makes sense and even if you use if for a short term it won't hurt him but it just might help him.. and really what does the doctor have to do with it.. they don't have to cook the food etc...,,.just like when they put a little one on a glutten challenge they don't have to change thediapers!

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I'm sorry this isn't exactly the response you are looking for, but I have a 4.5 yo daughter who is 23lbs and I can't get her to gain any weight either. I wanted to make a comment about the McDonalds french fries. I'm not sure where you are from, but around here they do not use a seperate fryer for the french fries. Everything that is fried goes into the same one so there IS gluten cross contamination present.

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