Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Child Going Casein Free


mart

Recommended Posts

mart Contributor

I'm finally out of denial, thanks to a food diary. My son went gluten free in August '05 and started gaining weight and feeling great. Then little by little he started feeling sick again...stomachache, etc., even though he's 100% gluten free. He's stopped gaining weight again. After keeping a food diary for a week, I realized that he complains mostly when he's had milk. But, even though he's been casein free for only 1 day, I see a huge difference.

But he's so skinny and depended on milk (which he loved) to supply a lot of his calories. No more ice cream, cheese, etc. What do I feed this child?

1. Any decent tasting casein free chocolate bars out there?

2. Any good tasting milk substitutes? We tried a rice kind yesterday, and it was thin and gross.

3. Dare I ask for a casein free cheese substitue (or I am dreaming)?

HELP!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



tarnalberry Community Regular
1. Any decent tasting casein free chocolate bars out there?

2. Any good tasting milk substitutes? We tried a rice kind yesterday, and it was thin and gross.

3. Dare I ask for a casein free cheese substitue (or I am dreaming)?

Chocolates

  • Terra Nostra (available at Whole Foods and Wild Oats, if not other places) makes a rice-milk based Gluten-free Casein-free 'milk chocolate', as does Trader Joes.
  • Dark chocolate is almost always casein free, and comes in varying 'strengths' for those who don't like the really bitter 92%, 84%, 72% or even 65% stuff.
  • You can use cocoa powder with a milk sub and sugar or honey or agave or stevia for chocolate milk.

Milk Substitutes

  • Almond Breeze (regular, unsweetened, or chocolate)
  • Pacific Rice, Almond, or Hazelnut beverages
  • Soy Milks (my favorites are Unsweetened Silk and 8th Continent, but they're all different)
  • Vances Dari-Free
  • Coconut Milk (good for cooking, baking, smoothies, added calories, etc.)
  • do NOT use Rice Dream - it has barley malt!

Cheeses and Ice Creams

  • Follow Your Heart Cheese
  • Chreese
  • Tofutti
  • Soy Delicious Ice 'Cream'

Other good calorie dense foods: coconut, avocado, nuts/seeds, nut/seed butters

momandgirls Enthusiast

Veggie Shreds makes a decent mozzarella substitute (it's in a green ziplock type bag). Rice slices are ok and melt well (american flavor). For milk, we use rice milk so I guess I can't help there. Sharon's Sorbet is delicious (I've only found it at Trader Joes). We also like Soy Delicious "ice cream." Some flavors are gluten free, others are not. There's a listing on their website. Celestial Tea Dreams "ice cream" is good, too. Hershey's chocolate syrup is ok - the powder is not. My daughter loves Whole Soy and Co. soy shakes and puddings (especially the banana flavor). She makes milkshakes every morning for breakfast - rice milk, a banana and either frozen fruit, chocolate syrup or peanut butter. I know, sounds a little strange, especially the PB, but she loves it. Good luck!

Mango04 Enthusiast
Veggie Shreds makes a decent mozzarella substitute (it's in a green ziplock type bag). Rice slices are ok and melt well (american flavor). For milk, we use rice milk so I guess I can't help there. Sharon's Sorbet is delicious (I've only found it at Trader Joes). We also like Soy Delicious "ice cream." Some flavors are gluten free, others are not. There's a listing on their website. Celestial Tea Dreams "ice cream" is good, too. Hershey's chocolate syrup is ok - the powder is not. My daughter loves Whole Soy and Co. soy shakes and puddings (especially the banana flavor). She makes milkshakes every morning for breakfast - rice milk, a banana and either frozen fruit, chocolate syrup or peanut butter. I know, sounds a little strange, especially the PB, but she loves it. Good luck!

I think the Veggie Shreds and Rice slices contain casein so be careful with those. The Vegan ones are safe.

jenvan Collaborator

To add to Tiffany's post... I also rec Pacific Rice milk--I think it very good for a milk alternative. Vance's is also good. There are recipes for icecream and whip cream using Vance's also. I had to order mine online: Open Original Shared Link (I can point you to the recipes if you purchase and are interested. Vincent made the icecream and thought it was pretty good. I hope to try it this weekend!)

As for chocolate--I love Tropical Source. Their baking chips and regular bar are so delicious!! This is so flippin' good: Open Original Shared Link (I buy at wild oats).

If you are having trouble finding things that are gluten-free/cf, ck out this website. It is for the gluten-free/cf diet and has lists of mainstream foods that fit the criteria. Might come in handy...also has a wealth of other info: Open Original Shared Link

Guest Jack's mom

My son is allergic to milk so we have dealt with this problem for his entire life. He likes the enriched plain soy milk with strawberry syrup in it. The strawberry syrup probably has alot of sugar in it but he LOVES this and will beg for it over juice. I have not been able to find a cheese yet because it seems as if they all have either whey or casein in them. We are trying Dairy Free Mac & Chreese for the first time tonight - it is also gluten free. The health food store will have different chocolate bars - they are usuall expensive though. I give my son chocolate chips sometimes and he really seems to like them. There are lots of soy ice creams and Silk even makes a soy yogurt. There seems to be alot of controversy about the health benefits of soy and we have started to cut back his soy intake some. I have found a powdered rice milk that is not too bad - but like I said earlier we mask the taste with strawberry syrup. Soy also seems to work better for baking though. Sorry this is so long but I hope it is helpful.

dlp252 Apprentice

Jenvan beat me to the Tropical Source chocolate bars...they are delicious--I buy mine at Whole Foods.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



jenvan Collaborator
Jenvan beat me to the Tropical Source chocolate bars...they are delicious--I buy mine at Whole Foods.

He he Donna :lol:

I will say too that I use my rice milk in cooking w/o any issues... And I have used soy yogurt as a sub in cooking too with success. I use earth balance gluten-free/cf "butter" for cooking and baking. Works great! Open Original Shared Link (1st and 5th products shown)

Nancym Enthusiast

Vance's dairy free milk is pretty good. You have to order online. Their chocolate is actually quite good, a wee bit too sweet for my tastes though.

mart Contributor

Thanks guys for all your recommendations. I'm kind of sad, though, because a lot of this stuff has soy in it and it seems he's not handling soy all that well.

I went to Wild Oats and found the Tropical chocolate bar. For dark chocolate, I must say, it's pretty good! I was shocked that I couldn't find any of the nut milks I've heard so much about on this forum. I was so certain I'd have lots of options.

So the Vance's milk has to be ordered online? I'll do it, if you guys think it's worth it.

But frankly, I'm losing hope in this casein free diet. My poor son asks for milk every 15 minutes, and I have to say no. It would be worth it if he had no stomach pain at all, but after a corn cake with Jif peanut butter, he started complaining of pain. I don't know if it's the soy in the peanut butter, or if everything just makes him react. Am I just wasting my time with this CF diet?

Guest greengirl

I have to thank you all for your suggestions, as well. My daughter just started the CF diet last week (she's been gluten free since Feb) and we are feeling kind of lost. Your ideas will help a lot! I don't know what I'd do without this forum and the great people here. :-)

Christine

Mango04 Enthusiast
Thanks guys for all your recommendations. I'm kind of sad, though, because a lot of this stuff has soy in it and it seems he's not handling soy all that well.

I went to Wild Oats and found the Tropical chocolate bar. For dark chocolate, I must say, it's pretty good! I was shocked that I couldn't find any of the nut milks I've heard so much about on this forum. I was so certain I'd have lots of options.

So the Vance's milk has to be ordered online? I'll do it, if you guys think it's worth it.

But frankly, I'm losing hope in this casein free diet. My poor son asks for milk every 15 minutes, and I have to say no. It would be worth it if he had no stomach pain at all, but after a corn cake with Jif peanut butter, he started complaining of pain. I don't know if it's the soy in the peanut butter, or if everything just makes him react. Am I just wasting my time with this CF diet?

No you are absolutely not wasting your time with a CF diet, especially if your son is casein intolerant!!!!!!! It will be worth it in the long run!!!!!!! It might take him a while to heal, and you might be dealing with multiple intolerances. You also said he's only been casein-free for a day. It can take much much longer than that for the symptoms to go away (give it a month). Don't give up!!!!!!!

mart Contributor
No you are absolutely not wasting your time with a CF diet, especially if your son is casein intolerant!!!!!!! It will be worth it in the long run!!!!!!! It might take him a while to heal, and you might be dealing with multiple intolerances. You also said he's only been casein-free for a day. It can take much much longer than that for the symptoms to go away (give it a month). Don't give up!!!!!!!

The thing is that I don't know for sure if he is casein intolerant. I think he is for two reasons. The first is that when he was born, I nursed him and supplemented with formula. He had streaks of blood in his stool and cried really hard while having bowel movements. The pediatrician said that was a casein allergy. He put him on 7 different formulas (some of them soy) with no change. It wasn't until we tried an 8th formula...Alimentum, which is hypoallergenic. Symptoms resolved right away, and he really thrived. The pediatrician said he would most likely outgrow the casein allergy. We reintroduced dairy into his diet when he turned two. Come to think of it, that is when he really stopped thriving, but I don't know if it's because of the dairy or the gluten (didn't find out about Celiac until he turned 7). The second is that he seems to complain of stomachache after drinking milk (Lactaid), although not every time.

I told his gastro that many on this forum are also intolerant to casein, and that maybe my son is too. He got mad and said that he wasn't (without even testing for it). He said that he would still have streaks of blood in his stool if he were still casein intolerant.

So frustrating...maybe I should put him back on dairy and do the Enterolab thing? What do you recommend?

Mango04 Enthusiast

Sorry if my post seemed dramatic. LOL. I'm just really passionate about keeping dairy-intolerant kids dairy-free. I think it comes from having suffered from a dairy allergy as a kid but not figuring that out until I was 14.

It really sounds like he's casein intolerant. If you want a some sort of diagnosis, Enterolab is always a good way to go. If you put him back on dairy and he gets sick, that gives you an answer too. I hope he feels better soon!

tarnalberry Community Regular
Thanks guys for all your recommendations. I'm kind of sad, though, because a lot of this stuff has soy in it and it seems he's not handling soy all that well.

I went to Wild Oats and found the Tropical chocolate bar. For dark chocolate, I must say, it's pretty good! I was shocked that I couldn't find any of the nut milks I've heard so much about on this forum. I was so certain I'd have lots of options.

So the Vance's milk has to be ordered online? I'll do it, if you guys think it's worth it.

But frankly, I'm losing hope in this casein free diet. My poor son asks for milk every 15 minutes, and I have to say no. It would be worth it if he had no stomach pain at all, but after a corn cake with Jif peanut butter, he started complaining of pain. I don't know if it's the soy in the peanut butter, or if everything just makes him react. Am I just wasting my time with this CF diet?

Wild Oats has all of the nut milks listed, but they come in aesceptic boxes, and are not in the dairy case. They're in their own separate section.

Becky6 Enthusiast

I can get Vance's dairy free at 3 different co-ops here in MN. Is there a co-op near you? You may find it there as I heard shipping was spendy on line.

Cheri A Contributor

((Mart)) ~ I've SO been where you are. We are also following cf and soy free diet. I believe that it takes a few weeks for dairy to totally get out of your system. Definitely give it a month.. We use the Vance's Dari-free...can't use the other milks.

TCA Contributor

we're on a cf, gluten-free, and egg free diet for my daughter (still nursing) and myself becuase of her allergies and our gluten intolerance. I think the best tasting thing I've found for drinking it Silk Very Vanilla soy milk. It's made with kids in mind, but I like it too! It's kinda like a milk shake. I use almond and silk vanilla soy milk on cereal and in cooking. Hope that helps!

for chocolate - try The Cravings Place brownies. They're gluten-free, cf, and ef. They're sooooooo good too. My gluten eating parents and in-laws even love them. I order them from glutenfreemall.com

mart Contributor

I will go to Wild Oats again today and see if I can find the Vance's. Is it in the shelved milk aisle? I didn't see it with the cold, fresh milk.

He feels better, but ocassionally still says he feels a tingle of pain that lasts only seconds. I will try to stick with it, but it's so hard seeing that he's so skinny. I don't want him to lose weight, but with so few options on high fat foods, what'll I do?

lonewolf Collaborator

My son has been off milk since he was about 18 months old and has been gluten-free since January. It takes a while for the kids to get used to it, but there are lots of good foods to eat. (We avoid most soy also.) I think casein is harder than gluten. Here are some things my son likes, hope it helps.

Vanilla Almond Breeze - on cereal and in baking where a sweet flavor works

Chocolate Almond Breeze - cold and hot

Fred Meyer (Kroger) store brand rice milk - I use this in cooking, because it isn't so sweet

Small amounts of raw goat cheese once or twice a month for tacos or pizza - this works for both of us

Soyco Foods makes a rice based sour cream alternative that is gluten-free/CF, but it can be hard to find

He eats a lot of almond butter and peanut butter - good especially if you want more calories

The other thing I've found that is helpful is to keep making "normal" food. We eat hamburgers, hotdogs, tacos, pizza, meatloaf, chicken and rice, spaghetti and all the other kid-friendly foods. I make a lot of homemade cookies, muffins, cakes, etc. too so he won't feel deprived. All 4 of my kids eat the same foods, so the one son doesn't feel "different" at home.

TCA Contributor
for chocolate - try The Cravings Place brownies. They're gluten-free, cf, and ef. They're sooooooo good too. My gluten eating parents and in-laws even love them. I order them from glutenfreemall.com

Just baked a batch and they are sooooo yummy. Eating while I'm typing. Must try them! A cold glass of Very Vanilla Silk soy milk goes great.! :D:D:D

jerseyangel Proficient
I will go to Wild Oats again today and see if I can find the Vance's. Is it in the shelved milk aisle? I didn't see it with the cold, fresh milk.

Here is a link in case you can't find the Vance's in a store--I live in NJ, and there are no stores in my area that carry it--

Open Original Shared Link

Texas Celiac Apprentice

Hi Mart,

My 3 year old is very small and skinny. He is 28 pounds. I have been diagnosed with Celiac and I highly suspect that he has it also. In addition, he is allergic to milk products. This started after I stopped breastfeeding. He became VERY CONSTIPATED. It was so painful for him. He also had streaks of blood in his stools and abdominal pain.

We started him on dairy at 12 months. That made the constipation worse. The pediatrician suggested soy. That did not help but we continued with the soy for 2 years (in addition to medication for the constipation).

Five days ago, we went gluten-free and milk free. We also took him off of the soy milk. We are going to try to avoid the soy when at all possible. The constipation issues have resolved!!! Of course it is too early to see a difference in his weight but we really hope to see him thrive over the next couple of months.

I went to the market today and bought goat cheese b/c he loves dairy products (especially cheese). I hope he likes that.

He does like the Vanilla Almond Breeze though and my gluten-free pancakes and waffles.

This is very new to me but I am optimistic! :lol:

Texas Celiac

AndreaB Contributor
Thanks guys for all your recommendations. I'm kind of sad, though, because a lot of this stuff has soy in it and it seems he's not handling soy all that well.

I went to Wild Oats and found the Tropical chocolate bar. For dark chocolate, I must say, it's pretty good! I was shocked that I couldn't find any of the nut milks I've heard so much about on this forum. I was so certain I'd have lots of options.

Wild Oats in our area has the nut milks in the cereal isle. The boxed cartons. Also Safeway carries some of them if you live where Safeway is.

mart Contributor

Thank you everyone. I'm getting ready to throw in the towel, though. He's been off milk for 3 - 4 days, and the first day was great. Since then, he still complains of some pain, although not as bad, and he hates the Vanilla Soy Milk, even with Hershey's strawberry syrup. He's also very depressed, since he can't have milk and the only desserts he liked: orange sherbert and milk chocolate. We tried the Tropical Source chocolate. He hated it. I give up. I'm so depressed. Sorry to sound so negative. This has just been a bad roller coaster ride for me.

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      My journey is it gluten or fiber?

    2. - cristiana replied to sha1091a's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Issues before diagnosis

    3. - chrisinpa commented on Scott Adams's article in Skin Problems and Celiac Disease
      2

      Celiac Disease and Skin Disorders: Exploring a Genetic Connection

    4. - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      My journey is it gluten or fiber?

    5. - trents replied to sha1091a's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Issues before diagnosis

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,697
    • Most Online (within 30 mins)
      7,748

    Knotalota
    Newest Member
    Knotalota
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • xxnonamexx
      I read that as well but I saw the Certified Gluten free symbol that is the reason I ourchased it.
    • cristiana
      I agree, it so often overlooked! I live in the UK and I have often wondered why doctors are so reluctant to at least exclude it - my thoughts are perhaps the particular tests are expensive for the NHS, so therefore saved for people with 'obvious' symptoms.  I was diagnosed in 2013 and was told immediately that my parents, sibling and children should be checked.  My parents' GP to this day has not put forward my father for testing, and my mother was never tested in her lifetime, despite the fact that they both have some interesting symptoms/family history that reflect they might have coeliac disease (Dad - extreme bloating, and his Mum clearly had autoimmune issues, albeit undiagnosed as such; Mum - osteoporosis, anxiety).  I am now my father' legal guardian and suspecting my parents may have forgotten to ask their GP for a test (which is entirely possible!) I put it to his last GP that he ought to be tested.  He looked at Dad's blood results and purely because he was not anemic said he wasn't a coeliac.  Hopefully as the awareness of Coeliac Disease spreads among the general public, people will be able to advocate for themselves.  It is hard because in the UK the NHS is very stretched, but the fallout from not being diagnosed in a timely fashion will only cost the NHS more money. Interestingly, a complete aside, I met someone recently whose son was diagnosed (I think she said he was 8).  At a recent birthday party with 8 guests, 4 boys out of the 8 had received diagnosis of Coeliac Disease, which is an astounding statistic  As far as I know, though, they had all had obvious gastric symptoms leading to their NHS diagnosis.  In my own case I had  acute onset anxiety, hypnopompic hallucinations (vivid hallucinations upon waking),  odd liver function, anxiety, headaches, ulcers and low iron but it wasn't until the gastric symptoms hit me that a GP thought to do coeliac testing, and my numbers were through the roof.  As @trents says, by the grace of God I was diagnosed, and the diet has pretty much dealt with most of those symptoms.  I have much to be grateful for. Cristiana
    • knitty kitty
      @xxnonamexx, There's labeling on those Trubar gluten free high fiber protein bars that say: "Manufactured in a facility that also processes peanuts, milk, soy, fish, WHEAT, sesame, and other tree nuts." You may want to avoid products made in shared facilities.   If you are trying to add more fiber to your diet to ease constipation, considering eating more leafy green vegetables and cruciferous vegetables.  Not only are these high in fiber, they also are good sources of magnesium.  Many newly diagnosed are low in magnesium and B vitamins and suffer with constipation.  Thiamine Vitamin B1 and magnesium work together.  Thiamine in the form Benfotiamine has been shown to improve intestinal health.  Thiamine and magnesium are important to gastrointestinal health and function.  
    • trents
      Welcome to celiac.com @sha1091a! Your experience is a very common one. Celiac disease is one the most underdiagnosed and misdiagnosed medical conditions out there. The reasons are numerous. One key one is that its symptoms mimic so many other diseases. Another is ignorance on the part of the medical community with regard to the range of symptoms that celiac disease can produce. Clinicians often are only looking for classic GI symptoms and are unaware of the many other subsystems in the body that can be damaged before classic GI symptoms manifest, if ever they do. Many celiacs are of the "silent" variety and have few if any GI symptoms while all along, damage is being done to their bodies. In my case, the original symptoms were elevated liver enzymes which I endured for 13 years before I was diagnosed with celiac disease. By the grace of God my liver was not destroyed. It is common for the onset of the disease to happen 10 years before you ever get a diagnosis. Thankfully, that is slowly changing as there has developed more awareness on the part of both the medical community and the public in the past 20 years or so. Blessings!
    • knitty kitty
      @EndlessSummer, You said you had an allergy to trees.  People with Birch Allergy can react to green beans (in the legume family) and other vegetables, as well as some fruits.  Look into Oral Allergy Syndrome which can occur at a higher rate in Celiac Disease.   Switching to a low histamine diet for a while can give your body time to rid itself of the extra histamine the body makes with Celiac disease and histamine consumed in the diet.   Vitamin C and the eight B vitamins are needed to help the body clear histamine.   Have you been checked for nutritional deficiencies?
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.