Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

How To Gain Weight When You Aren't Better
0

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....

0

Share this post


Link to post
Share on other sites


Ads by Google:

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

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

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?)

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites




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.

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

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!!!!!

0

Share this post


Link to post
Share on other sites

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!!!

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,641
    • Total Posts
      921,558
  • Topics

  • Posts

    • They are big on selling books -. They try to spam a lot forums and FB groups. why can't you eat nuts, nut flours, quinoa, hummus and beans? I think I missed that. Those are a good source of protein.  If you can't digest lactose look for a lactose free cheese - like one made from yogurt. at first,I thought life was over.  But with a few years of experience, I have found it isn't that big of a deal. It helps to have an attitude of "I am not here for the food.  I am here for the wine ( or the company . ). Also helps to not care what people think - "I don't care if you think it's odd that I brought my own lunch to the funeral luncheon. "( And it helps that my lunch looks better than theirs lol.)
    • Gracey, It am a mother and I am going to give you some  valuable advice.  You need to keep and document everything related to your health.  Every lab test result, notes from your doctor's visits, etc.  Why?  Because only you are your best health advocate (except for your mom).  Doctors come and go, but it is up to you to manage your health.   When I changed insurance and doctors, I had copies of all my medical records in hand.  My new PCP was impressed.  There was no doubt that I had celiac disease, fractures, Hashimoto's and diabetes, anemia, etc.  I had physical proof.  As an result, she was quick to refer me to a new GI  and order tests to measure my progress  (e.g bone scans).  My family health history chart helped not just me, but other family members.   So, find out if biopsies were taken during your endoscopy.  Get the pathologist's report.  See if your doctor checked for other issues besides celiac disease.   Hugs!  
    • I don't do grieving, bad enough for something that's been taken away in the past but to know my future is pretty much gone now just feels too much. The only time I've forgot about the unfolding nightmare was during my hour or so of sport so need to cling onto that at the moment or I fear going to a very dark place indeed. Yup that SCD site is terrifying, still can't make up my mind if they're giving out useful information to genuinely help people or using scare tactics to sell their books etc. 
    • I agree with all the advice you have been given.  It is excellent!   I just want to add that things will get better.  There is a huge grieving process to go through.  Do not fight it.  You have a right to grieve as your health and lifestyle will change, but you will adapt!  Exercise gently until you feel a bit better.  There is plenty of time to exercise hard later.  Taken this advice from a gal who just rode 40 miles (no biggie you say) this morning  on her bike through the Santa Ana winds (better known as the Devil's winds!).  But I am three years into my recovery.  I took it easy the first six months because I was anemic.  I teach few exercise classes, bike, swim and run and I am in my 50's.   The SCD website?  It can scare the (bleep) out of you.  There was one point that I took from the site and that was to stick to whole nourishing foods.  No rocket science -- just common sense.    
    • Thanks for the replies so far everyone, much appreciated Great, another doctor gets it wrong, how many more times can they make a mess of this diagnosis process?! Bloating had gone down a bit in these first few days of cutting the gluten so I guess expect that to come back. It's one way to have a farewell tour of the gluten foods I guess - if a little or a lot makes no difference may as well go all-in... The doctors didn't diagnose this at all, Google did. If I trusted in the health professionals I'd be blaming the symptoms all on stress and having counselling for it whilst the fire raged on inside me due to a clinical condition they'd missed. Just glad one of doctors agreed to run the test on second time of asking to keep me quiet as much as anything. Believe me I've read that newbie thread multiple times, as well as numerous others around the web. Been doing nothing but since Tuesday when the blood test results came back and each time I go into the comments sections a little bit more of me gives up inside. Seems so many don't ever heal and so many associated complications too. The reality looks bleak apart from a lucky few it seems. In the nicest possible way the vegetarian choice is non-negotiable, it's a core part of what I believe and the thought of eating any form of animal \ fish flesh would make me physically sick (sorry meat eaters) so will have to find some way around it, how I don't know yet. Perhaps lots of this... http://www.pulsin.co.uk/pea-protein-isolate.html The cooking bit is a concern as it's something none of us do well at home, adds to the feeling of being completely lost right now. I kick myself for the decision that lead to the stress as I could've avoided all this. The only thing I can cling onto there is that I was having some pains in the side before that time which I blamed on a muscle strain... maybe that was the early stages, in which case I could feel a bit better knowing it had just come on gradually. With the biopsy and gluten from what I read the villi take a long time to heal up so they'd still see that. With the blood test result as definitive as it was surely the disease is pretty much confirmed? How can it heal enough for non eating gluten to throw a biopsy result yet on the flip side take over a year to heal (that sounds like the best case scenario time-wise from what I've read). Not suggesting anyone is wrong for one second but need to understand how that works with what's going on inside to make any sense of this situation.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,644
    • Most Online
      3,093

    Newest Member
    Jross69
    Joined