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Alexander's Mom

Help With Newly Adopted Baby?

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Hello,

I'm new to this board and a new mom to a 19 month boy adopted from Russia who probably has Celiac disease plus dairy intolerance. The orphanage didn't give us any info, but he has had diarrhea from (literally) the moment we picked him up and he just underwent an intestinal biopsy for Celiac. The official results aren't in yet, but the Dr. said he saw damage he thought was due to Celiac.

Here's my question: my son is extremely low weight (bottom 3%) and losing rather than gaining weight. At this point it is not a matter of what he cannot tolerate, rather what can he tolerate???? The past 3-4 days I've only given him rice milk, bananas, whole oats, plain Perky-o Cereal, ham, turkey, peas, carrots, plain rice puffs, plain rice cakes, and natural apple sauce (apples and water). He was getting better but is worse again. He had some normal stools when we thought we had parasites and put him on the above diet (no sugar, no flour, no dairy). I can only think of two things that were different this week: the original Perky-O's and Enriched rice milk (with vitamins) instead of Original Classic rice milk.

Do any of your children with Celiac have problems with any of the above? Is it more likely the milk or the Perky-O's that are making him sick again??

Thanks in advance for any help you might offer!!!

Liz

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Hi Liz, welcome. :)

I am not a mom with a celiac child so I don't know how helpful I can be but one of the things on your list, oatmeal, jumped out at me because it is generally considered a food subject to cross contamination, i.e. wheat and oatmeal are rotated as crops in the same field. I would also say that you may be best to stay away from any processed products such as the rice milk until you get the situation under control.

I hope you see some improvement soon. :)


A family with Celiac disease, two brothers and two sisters.

Lyme Disease, Diagnosis October 19, 2006

May 2006 - December 2008 Gluten and Dairy Free

December 2008, while seeing improvement on the gluten free diet, I did not recover and so in December of 2008 began the SCD and now have hope for recovery.

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We have an eleven year old boy we adopted from Russia at 20 months. It is a challenge in many ways .... I have six children and it was the most difficult not when we had a baby, but for the first six months after we got him. It's a wonderful thing and worth it, but it is very challenging.

If he does have celiac, it is going to take time for him to heal. Happygirl is right about cutting out the oats. You might also check the ingredients of the Rice Milk to be sure it's gluten-free.

My Russian boy does not have celiac, but if you just want to "talk" in general about Russian adoption, feel free to PM me.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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I can only think of two things that were different this week: the original Perky-O's and Enriched rice milk (with vitamins) instead of Original Classic rice milk.

Do any of your children with Celiac have problems with any of the above? Is it more likely the milk or the Perky-O's that are making him sick again??

Thanks in advance for any help you might offer!!!

Liz

Hi Liz,

I agree with the problems with oats. Also, if the rice milk is Rice Dream brand some people have problems with it due to the fact that it is processed using barley. Most of us do not use that brand. I had a problem with it even though it does say gluten free there is a small amount of barley in it. I use Shoprite brand rice milk and know that there soy milk is also gluten free. My favorite milk is Almond Breeze made from almonds. Maybe you could try a different brand of rice/soy/almond milk?


Joni

Dx'd with Celiac Disease 8/01/07

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Is the rice cereal also a specialty that has no gluten? Regular rice crispies have malt in them, which comes from barley. Some ppl also react to some rice cakes, especially the quaker brand. Check the fillers in the meat. Cross contamination from others eating gluten in the house can also be a factor. Toddlers that age can pick up stray food really fast!

Also, check your lotions, tooth paste, soap, and everything else in your house.

Good luck! You have come to the right place to get answers!


ptkds

Mom of 4 beautiful girls (the 2 youngest are only 10 months apart!)
Diagnosed with Celiac disease on November 8, 2006; gluten-free as of 12-1-06.

DD#2 13 years old; diagnosed on November 28, 2006. gluten-free as of 12-7-06.
DD#3 9 years old; diagnosed through blood work in October 2006. Gluten-free as of mid-November and doing GREAT!!
DD#4 8 years old; had a scope done on 6-22-07 (at 14 months old) and the dr saw stomach ulcers, but all test results were negative. GI dr told us to put her on the gluten free diet anyway. She is gluten free as of 6-22-07.

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My child dropped from 75% to 3-5% before we finally started getting the right results about Celiacs too. It is very frustrating to watch them be hungry and still not gain weight. My daughter is gluten-free/CF along with other food allergies.

Personally what worked for us was to stick to a very limited diet for the baby until you have a better handle on gluten-free/CF. Apple sauce and bananas will help with the diarrhea. My kids love English Bay dairy free milk product. It is potato based. Good stuff :) To help pack on some pounds, I looked for the higher calorie foods. She likes Kinnikkinnik chocolate covered donuts for breakfast. gluten-free Pantry Coffee Cake with Enjoy life chocolate chips are a good treat too. Gillians French rolls are used for hamburger buns. Chicken and hamburger are her favorite meats. Any veggie is a good thing to her.

Like the others, I would skip the oats. Also, skip the ham. I find it hard to find a ham she can tolerate. Mine mostlikely has an allergy to milk and eggs and who knows what else...

Start a food diary. Track foods and drinks, stools, and possible signs of a reaction. You might find the trigger item that way.

Good luck, and congrats on the new addition!

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Thanks so much those who have replied so far to my request for help. I am so glad to find this board--I have to admit I was in tears this morning. I'm at wit's end with the diarrhea soaking through clothes and sheets and I know my new little son is suffering because during the few "good" digestion days we've had he was a different kid, happy and smiling. I see him wasting away and his little bottom is so red from contact allergies right now. Plus he has insecurities about food from his orphanage days and all this malabsorption makes him hungry, it just breaks my heart! :(

Guess I will look at replacing the oats and rice milk (yes it was Rice Dream). Instead of oats, is there any plain hot grain you recommend??? I also feel I need to give him some kind of milk because he won't drink water--so is the best route another brand of Rice milk, or trying soy, almond, or the potato milk one of you suggested (if I can find it in our small town??)

I had thought about meat fillers, that could be it. The rice cereal was just that-puffed rice, not Rice Crispies or anything and rice cakes were also unflavored, the only ingredient was brown rice.

Thanks for the info on EE. Are there other disorders like that related to Celiac?

I am tending to think we have a multiple allergy problem, since Alex doesn't seem to tolerate sugar at all. A couple of weeks ago I tried some of the sweetened Celiac foods and he got sicker. The Dr. said his esophogus and stomach looked ok when he did the biopsy (only damage was intestinal) but the web site on EE said that can happen. I know he had parasites, scabies and ringworm in the orphanage so maybe that increased his chances for EE or something else. We did the parasite treatment but he remains sick.

Have to admit right now I feel like I can't feed him anything--can a baby survive on peas, carrots, apple sauce and bananas??? Those are the only things I think are ok so far and since he's a typical one-year-old the veggies often end up on the floor.

Again, I truly appreciate everyone's help and the comfort of knowing there are others out there who have experienced similar situations and found manageable diets for their kids. It gives my family so much hope. :)

Liz

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My son really likes Westsoy rice milk. When we can't get that we use Shoprite brand and he is fine with it. The Westsoy just seems to be a little thicker and more white which makes it really look more like milk.

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There have been some studies showing higher estrogen levels in teenagers that were fed soy milk as babies.

Sorry to be "negative", I know it is difficult to find foods that children tolerate, but my feeling is I would seriously investigate the possible consequences of soy milk for babies if I was feeding one.

I was a vegetarian through my twenties and I ate lots of soy, I have a great recipe for easy tofu :) but having looked at it more closely since I have been ill, I no longer eat it.


A family with Celiac disease, two brothers and two sisters.

Lyme Disease, Diagnosis October 19, 2006

May 2006 - December 2008 Gluten and Dairy Free

December 2008, while seeing improvement on the gluten free diet, I did not recover and so in December of 2008 began the SCD and now have hope for recovery.

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My daughter was very thin at that age and her weight had dropped off the growth chart. Your lucky to have figured out so soon what the trouble is. She was able to tolerate veggies like beets and broccoli, she loved beets. Can your son eat meat? My daughter is four and she loves the Imagine brand Potato leek soup which is vegan and gluten free. I bet if you mixed it with some veggies you could make some nice babyfood out of it. It's pretty thick stuff.

Good Luck to you and good health.

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Liz,

You may want to consider trying an elemental formula, such as Neocate or EleCare, for his milk while you are still working out his issues. They are nutritionally complete and if he eats nothing at all, he will still be getting nutrition. You can talk to your son's GI or pediatrician about them and see if they have samples. My almost-15 month old has been on Neocate since he was 4 months because he could not tolerate anything. Neocate offers several pediatric varieties for children over 12 months. Feel free to Google to look into it. I always buy my Neocate off eBay because our insurance doesn't cover it, but depending on the state you live in, your insurance carrier may be required to pay for it with a doctor's prescription. I hope that helps some!

We are also re-visiting a Celiac and Eosinophilic Disorder. My son also has multiple food allergies. I know it's overwhelming but there are alot of resources out there for information and support. Good luck with everything!

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First of all, congratulations on your new little son. He is so lucky to have a mom like you!

Have you tried gluten free pasta? It's made with brown rice and it's good finger foods for a little guy. My kids love it. Actually everybody in my family loves it. You can get it on Amazon in bulk if you can't find it locally. The brand is called Tinkyada.

My son lives and thrives on mostly fruit, cheese, pasta and cereal. It's a limited diet, but it gets the job done. He's growing and has lots of energy. A child that age doesn't need a lot of variety as long as the foods he will and can eat are nutritious.

Corn tortillas are usually gluten free and make great little sandwiches. You can wrap them around chicken or turkey. I've heard turkey is better than chicken allergy-wise. (I have a friend who's daughter is allergic to everything and that's what her allergist said)

I'll confirm what everybody has said here, and say oats are generally not considered safe for celiacs. They are stored in silos that intermittently store wheat. You can get gluten free oats (Cream Hill Estates is a brand that makes them). However, most GI's recommend that you be gluten free for a year before you bring oats into your diet.

If eggs are OK, then you have a lot of options. You can make gluten free pancakes. Bob's Red Mill makes a great gluten-free pancake mix. You can make it with the milk of your choice. You can also make things like corn muffins (with gluten free flour). You can make them with extra oil (Olive or Canola) to up the calorie contents. I make mine with nut flour to increase the protein too.

Soy is a difficult food to digest (and a top 10 allergen), so I'd be a little worried about giving him soy milk. Can you do juice mixed with water if he doesn't like plain water?

Don't be afraid to limit his diet for a couple weeks in terms of variety and add foods in gradually as he stabilizes. It sounds like you made a couple common rookie mistakes this week (we've ALL been there). But it's better to have an answer as to why your child isn't better this week (damn Rice Dream and their deceptive labeling!). And keep posting your questions!!

-Margaret

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What jumped out to me was the rice puffs. If it's commercial off-the-shelf rice puffs such as Quaker, it isn't gluten free. There aren't many cereals that are gluten free. If he will eat rice, try Minute Rice. Brown rice may be more nutricious, but can be difficult to digest.

There is always Benecalorie that you could mix into his food. If you can't find it locally, it is available online.


Sandi ~ learning to live in a world obsessed and infested with wheat.

"You don't need a weatherman to know which way the wind blows" probably was not referring to us . . .

"For the love of money gluten is a root of all sorts of evil, and some by longing for it have wandered away from the faith and pierced themselves with many griefs." (apologies to 1 Timothy 6:10 (NASB)

The person we most dislike is still a soul for whom Christ died. (David Jeremiah)

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Thanks again everyone for your advice...I'm feeling a lot better about getting Alex healthy.

Although wow, looks like there is a lot to learn!

Yes, he can eat meat, of course only if it's plain. I'm a bit scared of gluten-free pasta or any snacks as he tends to do a lot better with whole grains than any kind of flour, and anything with sugar gives him runny poo. The one day I gave Alex corn I felt we had problems too, and same with potatoes. My suspicion is that the sorghum flour or cane juice in the Perky O's is what caused him to reject those. Is it possible to be allergic to ALL starches??? Could this be a sign of something else?? Or is there some miracle starch he might tolerate--should I try Quinoa??

Won't drink water, even flavored with juice. Baby boy wants his milk, and it has to be warm or he'll push it away! (in Russia, they give it to the babies almost scalding hot!) At this point I'm thinking of switching brands like several of you suggested.

Thanks all of you for your very specific product suggestions--I'm making a list and plan to hit a health food store tomorrow.

Liz

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My kids love the VAns Waffles, Bob's Red mIll Pancake mix, Cherry Brooke kitchen cakes, Gluten Free Pantry Coffee cake, for breakfast and snacks. Try Glutino Pizza crusts and crackers.

Hot cereal is Grits with non-dairy butter and sugar. That is actually the only cereal we have.

For the positive news, it amazed me how fast mine changed in the gluten-free/CF diet and she knows a difference. She may want the food others are eating but she does not fight when I say that something will hurt her tummy. That helps when she knows that some foods make her feel better and some foods give her diarrhea and rashes.

BTW, a lot of the excessive allergies adn sensitivities will go away once he starts to heal. So avoid them for now, but don't assume it is a life long condidtion yet. If you notice consistent reactions, see an allergist after he has a few months to heal.

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Yes, some people cannot handle any grains. He does not need any grains at all at this time. Please do not give him the gluten free waffles & stuff - some of us are allergic or just plain cannot handle the grains. Definitely do not give him quinoa.

What he is eating is fine (the bananas, applesauce, veggies...) - add in some baked or boiled chicken. baked sweet potatoes & maybe white cooked rice. If he does okay on all of that then slowly add in one thing at a time - but not grains or dairy & I also think soy is not good.

surprisingly he might do okay on beef... like a well cooked roast, some people that cannot eat grains do better eating meat

try some warm chicken broth - homemade with some carrots & cabbage...

try coconut milk in place of milk in cooking & to make smoothies...

I would take a sweet potato & cut it up into french fries & fry them in coconut oil.

might also skip white potatoes for now, a lot of us have problems with them.

I would get a heating pad & cover it & rock him & hold the heating pad to his pajama covered back while giving him a bottle.

Oh & congrats on the new baby!! You will qualify for your doctor wings right quick with this one!! :)

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The heating pad and rocking sound wonderful! Very soothing and enjoyable enough to help some new milk (Almond or gluten free rice) become tolerable perhaps. It sounds like you have enough on your plate as it is, but I wanted to mention that naturopathic doctor has been very helpful to me and my child. She helped us figure out what foods were best when she was a little one. Unfortunately there was a period of time I thought she was ok with gluten because of the healing that had taken place. Now that she is four the naturopath is giving her supplements and digestive aids to help her heal. These might be helpful to your son as well. Taking her off the gluten has made a big difference in our lives. Hang in there, once you've figured out what he can eat and he's used to it, this way of eating seem easy. I have been surprised how quickly I have adapted to cooking gluten-free. It's only been a few months.

Good Luck!

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What great tips everybody!! Alex and I made a quickee trip to the health store (1 hour away) and back in time to pick my daughter up from school. I got a lot of the products you all mentioned although I am going to take it VERY slowly, one thing at a time, starting with the sweet potatoes (great idea!) with hopes and dreams of some day making it to the waffles and such. The pot roast is another excellent idea and one the whole family can enjoy.

I bought quinoa before reading the last posts but will hold off on that. Also already gave him Tinyada rice pasta before reading so we'll have to see how it uh, comes out. If he tolerates that, I think the gluten-tested creamy rice may work because Alex tolerated rice okay when we thought his problem was just parasites. However, the Quaker rice puffs went in the trash (after I read the "may contain traces of wheat" statement) along with the Rice Dream milk (although I noticed we had smaller RD boxes with a gluten free symbol that was missing from the larger fresh box--if the symbol is there is it safe??) For now I am going to try the West Soy Rice drink.

I will definitely rock him with a heating pad...and how does one find a naturopathic dr? Also, once we get our positive Celiac biopsy results will we automatically get hooked up with a dietician and/or allerist or are those completely separate tracks from the gastroenterologist?

What a confusing world my family has just entered! But I feel blessed to have found this group and Alexander's smile is worth a million runny diapers.

Liz

PS Didn't see any Neocate or Elecare in the store but might check out the web. DID find the potato leek soup although I may wait a while on that too. Basic chicken stock with fresh veggies sounds pretty safe at this point.

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Neocate and Elecare, and other "elemental" foods, often have to be ordered by the pharmacist.

Good luck, and please keep us updated on Alexander's appointments and what the doctor has to say regarding many of the ideas posted here.

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I will definitely rock him with a heating pad...and how does one find a naturopathic dr? Also, once we get our positive Celiac biopsy results will we automatically get hooked up with a dietician and/or allerist or are those completely separate tracks from the gastroenterologist?

Congratulation on the adoption of your son!!!

Although every gi doctor's office is going to be different, in general nothing is automatic. Maybe they'll refer you to an allergist and dietician, but maybe not. Be prepared to ask for what you want. Having said that, it's not easy to find a dietician who is thoroughly familiar with Celiac. As far as celiac disease goes, you're more likely to get the best information right here in these forums.

With all the issues Alex is having, I'd definitely insist on an allergist referral. But as others have said, many of these problems may ease off once he's been gluten-free for awhile. Once the intestine is damaged from Celiac, it really takes time to heal. While the damage is there, his intestine just isn't able to deal with foods that it normally would be able to. Hopefully, as he heals you'll be able to expand his diet.

As others have said, try not to stress about the lack of variety right now. Getting him feeling good is enough for now.

My heart goes out to you. I remember when my oldest son was newborn. His stomach pains were so bad that he could only sleep while being held tummy to tummy. Our body heat was the only thing that soothed his stomach. Eventually we switched to a dairy-free formula, and that helped. He remained dairy-free until he was about a year old, and we were able to gradually phase dairy back in.

We know now that that early lactose intolerance was an early warning sign for Celiac. He may also have been suffering from gluten reactions from the wheat I ingested while he was in utero. :o

Anyway, many of us know what it's like. We're here for you!


-Sarah

--Son, Lucas, age 7. Gluten-free since May 2007

--Son, Ezra, age 5. Gluten-free 10/13/07. Bipolar tendencies, massively improved on gluten-free diet! He's also allergic to a jillion antibiotics.

--My mother has Celiac Disease, dx'ed by Positive Blood Tests and Biopsy. Diagnosed Sarcoidosis 6/08.

--Myself, Gluten-free since 8/07

Time heals all hurt of heart... but time must be won.

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Our pharmacy (Walgreens) carries a case or two behind the counter as well. You'll be floored by how expensive it is, just a warning. But Neocate was a lifesaver for my son. As I mentioned before, I always purchased it off eBay.

If you live in ARIZONA, CONNECTICUT, ILLINOIS, MASSACHUSETS, MINNESOTA, NEW HAMPSHIRE, NEW JERSEY OR NEW YORK, coverage of elemental formulas by insurance companies is MANDATORY. Some insurance companies in other states cover it under prescription or durable medical equipment benefit.

You could try "hypoallergenic" infant formula such as Enfamil's Nutramigen or Similac's Alimentum, both of which are found on the shelf in any store. However, most kids with multiple food allergies/GI problems do better with elemental formulas.

I'm sure your son's doctor will be able to advise you on appropriate pediatric formula and give you a prescription if you need it.

Good luck with your appts - you're doing a great job! Your son is lucky you found him.

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