Milk Protein Intolerance

[tfrankenberger]

My son was diagnosed with Celiac in Feb of this year and has been on the gluten-free diet since. So he's about 5 months in and seemed to be recovering well after the first couple of months. We saw a big turnaround and he was only having occasional "bad" days. We took out dairy early on but left in cheddar cheese because we believed him to only be lactose intolerant (which he was not before the Celiac). For the last 4 weeks or so he has been battling headaches, diarrhea, and low energy off and on, and has also had cold-like symptoms at least once a month. I took him in for more tests for vitamin deficiencies, etc. We're waiting on results. But in looking at some posts, I think he may have a milk protein intolerance and possibly all this time the cheddar has caused these symptoms. Yesterday we decided to cut out the cheddar for the next couple of weeks and see. Any thoughts?

It's so frustrating and heartbreaking to watch your child improve finally and then to seemingly go backwards. Our whole family has gone gluten-free and we never eat out, so I know cross-contamination isn't an issue. Plus, in May his TTG levels were back to normal. He is still losing a little weight, too. Just want him to feel like himself again. He's getting very down.

[GFinDC]

Hi,

Casein is the milk protein tha some of us react to. The casein protein is supposed to be structured similarly to the gluten protein according to Wiki. That doesn't mean the reactions have to be the same as the reaction to gluten though. They seem to be quite variable from what I have read on the board. Some people get sleepy, others (myself) get wide awake. It's variable.

It is not unusual for a celiacs to develop (or reveal) other food intolerances after being gluten-free awhile. Lots of ideas about why that is are around. But it does seem to happen. One way to narrow it down is to do an elimination diet. Starting with a small group of foods (not any of the major allergens), and adding a new food every couple of days. Tracking the reactions in a food/symptom diary can help. A few things I found recently are coffee, tea and carrots.

Some people also start eating dairy again after soem time has passed and they have healed. I do think it is a good idea to take him off the dairy for a while and see how he does. It has a very strong effect on me. The seemingly logical alternative is to replace dairy wiht soy type milks. But that can be bad idea as their are some negative things about soy also. Coconut milk might be a better first choice.

[missy'smom]

There are various problems that one can gave with dairy-several components that one can react to. I have had clear problems my whole life but haven't been able to figure out exactly what my issue is. The testing that I've done hasn't helped but may be helpful to some. There is a milk subfraction test blood test that tests separate components of the milk to see which one you are reacting to.

I've discovered that dairy gives me significant nasal stuffiness that, combined with other allergens that bother me, lead to sinus problems and eventually infections if I'm not careful. I didn't realize that it added to or caused the nasal issues until I eliminated it for a while and my breathing cleared up quite a bit. It's actually the reason I kept it out of my diet so long after that because I so much enjoyed being able to breathe better! I initially eliminated it because of GI symptoms. I have been very slowly re-introducing dairy one kind at a time to see how I react. I didn't want to go that route but testing didn't give me the answers I was looking for so far, so I'm stuck with this method. I would just keep it out entirely but I have other significant dietary restrictions so am hesitant to completely eliminate unless necessary-just a little gives me alot more options. So far I haven't had the GI issues that I used to but I have encountered other unexpected symptoms. I found that after eating some cream cheese everyday for several days in a row, once or twice a day, on the third day I suddenly had significantly elevated blood sugars indicating an immune reaction and/or the onset of infection. My only outward symptom was increased nasal/sinus pressure. So, I won't be eating cream cheese anymore. This type of reaction is consistant with the advice that some allergists give for a rotation diet-consuming the irritant only once every 4 days. I seem to do OK with a little yogurt and swiss cheese-a small piece of cheddar consistantly gives me stomach discomfort. I still have several more forms to try out. I recently stumbled across another possible symptom. I had a swolled, protruding tastebud this week-just one but it really stuck out! and looked it up to find that they can be caused by allergens. I showed DS it as a curiosity and said it was an unusual thing to happen to me and he said, mom I get those all the time! I had no idea! and he has tested mildly positive to a few food allergens besides wheat so we are going to try to keep an eye on when these pop up and make note of which the allergens that we know we potentially have problems with that we've eaten when they occur.

Good luck in your search for answers. I hope your son will be feeling much better.

I would advise eliminating all dairy for a while and as mentioned, re-introduce slowly. It's pain in the neck but it may give you some useful answers. For a dairy-free treats-Turtle Mountain icecreams are really yummy and Enjoylife chocolate chips are great! If he does need to be dairy-free there are still alot of kid friendly options out there. He need not feel deprived, just make different choices.

[tfrankenberger]

Thanks so much for the comments. We have been enjoying the ice cream made with coconut milk, a couple of different brands, for a while now. So when I decided to cut out soy and dairy completely I went and purchased some unsweetened coconut milk in a carton to use in baking. I made mashed potatoes with it tonight, and he really liked it. I'm sure he'd love to have a bowl of cereal again, so maybe that will be a good alternative to dairy and soy.

[CMG]

I recently had my gluten-free daughter into the pediatrician for tummy pain and intestinal issues. We already were mostly dairy free - occasional yogurt or cheese, and I still used butter for baking. The doctor told us that dairy, even small amounts, is the most common cause of intestinal problems and told us to eliminate it completely. This is the second doctor who has given us this type of information - before going gluten-free 2 years ago, I took my daughter to a different doctor for some very severe intestinal issues and his initial reaction was "this is definitely a dairy issue". Eliminating dairy improved her problems; then, eliminating gluten cleared her up completely.

I have not tried coconut milk because coconut used to give me migraines; but, my girls like Rice Dream ice cream. I also noticed recently in Whole Foods that they had a rice based cheese. We haven't tried it yet.

Good luck.

[tfrankenberger]

I've heard of the rice-based cheese, if it's called Galaxy. It comes in slices that are flavored "cheddar", "american", and something else. We haven't tried it yet, but would like to. Cheese was definitely the hardest thing to give up. He put cheese on everything and loves it. But his symptoms seem to be gone now after three days of no cheese, so he'd rather feel good.

One other question....how to get enough calories in him. He eats pretty well, but his total calorie intake at the end of the day hovers around 1,000 calories. He is 14 years old and needs more calories to put back on some of his weight and to give him energy. Any suggestions?

[missy'smom]

Believe it or not but adding in more meat alone can help with weight gain. I know it can be a challenge to get significant amounts of meat at each meal into a growing boy. That's a challenge I have anyway. I'm trying to get DS in the routine of having some protein with his snack and not just carbs. Also having 4 meals a day or 3 meals and a snack that resembles a meal or mini meal can help get the calorie quota for the day. Healthy fats are good. Nuts and nut butters are very good sources of calories. Sunflowernut butter is good for those who can't have peanuts or tree nuts. DS dipps apples in it for snack for breakfast. Avacados. If he can have eggs that would be good-hard boiled eggs are easy for snack, tucked into a lunchbox or for breakfast. Rice Chex cereal is very low in calories and I used to eat it for breakfast often but after needing to try to get my weight up I added in other things until I got at least 400 calories in each meal-so added some meat and a banana to breakfast. It sound like you have tracked calories? If not it can help pinpoint meals/foods that are lacking. There are some useful, free online programs.

[CMG]

Believe it or not but adding in more meat alone can help with weight gain. I know it can be a challenge to get significant amounts of meat at each meal into a growing boy. That's a challenge I have anyway. I'm trying to get DS in the routine of having some protein with his snack and not just carbs. Also having 4 meals a day or 3 meals and a snack that resembles a meal or mini meal can help get the calorie quota for the day. Healthy fats are good. Nuts and nut butters are very good sources of calories. Sunflowernut butter is good for those who can't have peanuts or tree nuts. DS dipps apples in it for snack for breakfast. Avacados. If he can have eggs that would be good-hard boiled eggs are easy for snack, tucked into a lunchbox or for breakfast. Rice Chex cereal is very low in calories and I used to eat it for breakfast often but after needing to try to get my weight up I added in other things until I got at least 400 calories in each meal-so added some meat and a banana to breakfast. It sound like you have tracked calories? If not it can help pinpoint meals/foods that are lacking. There are some useful, free online programs.

I agree with Missy's mom, especially on the nuts, nut butters, and hard boiled eggs. They all are easy travel foods. We have a bowl of hard boiled eggs in the refrigerator all the time so they are available for snacks. In the car while driving from one activity to the next I usually bring nuts or trail mix to snack on. Also, I found at Whole Foods these 1 oz. squeeze packs of nut butters. I keep them in the car and take them while traveling on planes. Finally, I found today a rice based yogurt. Haven't tried it yet, but I'll let you know.

[Mom of a Celiac toddler]

Whole foods carries Vanilla coconut milk from SO Delicious, which my son drinks a gallon a week of. They also carry SO Delicious dairy, soy free, coconut yogurt. And we use coconut oil and butter in and on just about everything. Try shredded coconut in the cereal also...really yummy! Good luck, we had a great weight gain at the last check, thanks to the secrets of coconut!!

PS: the Rice cheese, soy free, dairy free, cassein free is loved by my son!!

[elle's mom]

Whole foods carries Vanilla coconut milk from SO Delicious, which my son drinks a gallon a week of. They also carry SO Delicious dairy, soy free, coconut yogurt. And we use coconut oil and butter in and on just about everything. Try shredded coconut in the cereal also...really yummy! Good luck, we had a great weight gain at the last check, thanks to the secrets of coconut!!

PS: the Rice cheese, soy free, dairy free, cassein free is loved by my son!!

Can you find the coconut milk, oi, and/or butter and regular grocery stores or where do you buy them? Have you (if you're not dairy free) tried the rice cheese? If so, how do you like the taste? Same question for the coconut milk and butter.

[elle's mom]

Can you find the coconut milk, oi, and/or butter and regular grocery stores or where do you buy them? Have you (if you're not dairy free) tried the rice cheese? If so, how do you like the taste? Same question for the coconut milk and butter.

Sorry-I just realized "whole foods" is the name of a store-dumb question on my part.