Casein Sensitivity

[wonkabar]

Hiya! I think many of you know the story of my 3 year old's issues with gluten, allergies, asthma, etc. So, I won't bore you with the details! Zachary has been on a strict gluten-free diet (with the exception of a couple of cc incidents) since March 8 and is doing absolutely AWESOME!!

Anyway...in addition to testing pos for an active gluten sensitivity, auto-immune response and 2 genetic markers (1 main celiac/1 non-celiac gluten sens.), Zachary also tested pos for a casein sensitivity. Fortunately, there were no issues with malabsorption (all through Enterolab). Could any of you with knowledge about casein, the effects of it, diet, etc please share with me??!!

I know that a gluten-free/casein-free diet is an ENORMOUS undertaking; we tried this last year when we were trying to figure out what was going on with our little guy. We honestly didn't want to go to that extreme again if we didn't absolutely have to...please don't think I'm a horrible mother!! Needless to say, we will do whatever it is that we have to do to help Zachary feel the very best he can; that is our ultimate goal. We just don't have enough knowedge about casein and the effect it has on your body. My hubby is 150% on board with the gluten-free diet; he's seen the "before and after picture" and knows his little buddy is a diffrerent kid w/o gluten in his diet. He's just not sure that we need to eliminate casein as well. He honestly feels badly about the fact that there's so many things that we've had to cut out of Zachary's diet. (Daddy is a mush, but that's why we love him! ) Now we're just looking for additional information so we can make the most informed decision and do whatever is necessary to help Zachary achieve optimal health. Thanks for you input!

--Kristy

[CarlaB]

My casein intolerance score was 30 from Enterolab. I was three months gluten-free before I got tested and feeling much better, so I ignored the casein problem. I wasn't mentally ready to address it. Another couple months went by and I kept thinking that I was getting glutened by cc, but after a while I noticed each time I thought I was glutened, I had consumed dairy. I was going to Panera Bread each day to get online and I would have a cup of coffee with cream. I thought I was getting glutened being around all that bread because I would always have 1 time of d after my coffee. Finally, I cut out dairy, felt REALLY bad for a couple days, then felt better than I have felt probably in my life.

I get brain fog, diarrhea, constipation, fatigue, etc. from the casein.

[Phila]

Hello,

I'm also interested in this casein question. I am completely gluten-free, but I admit am only "low" on dairy/casein. For instance, although I don't eat eggs, cheese, yoghurt or icecream, I DO have milk in my coffee and don't look for dairy/casein as ingredients to avoid in packaged food. I also add margarine to my rice. My question is how much would I be hurting myself by eating this stuff if I am allergic to it? I have tested pos for dairy allergy via a scratch test, but never was tested for the casein.

Thanks,

[AndreaB]

From what I have learned, dairy allergy CAN go away but it also MAY get worse. Casein intolerance is casein free for life. I have a dairy allergy but not casein intolerance. I had been primarily dairy free for 3 years, only having it 3-6 times a year and I still tested low for an allergy. I currently still eat butter but have just recently cut back out dairy aside from that. I didn't have my family tested for allergies as I opted for enterolab instead to look for intolerances.

If you are dairy allergic you need to go off of dairy for at least two months if not longer (up to 1 year even) and then reintroduce it and see if you have a reaction. This can be as simple as sneezing and getting congested. If you suffer from seasonal allergies you will not want to introduce dairy back in until you are over your seasonal allergies so as to not confuse any reactions. This gives your body time to "forget" the intruder. If you have had damage done by the gluten you will want to be off dairy longer to give your villi time to heal.

Gluten, soy and dairy all can cause problems with the villi. If you are casein intolerant you need to remove all dairy from the diet. I know this is so hard. My family has just gone dairy free again with the exception of butter. I do have recipes for butter but it just doesn't taste the same. My husband and I are soy intolerant so we can't eat soy, but have chose not to even if we hadn't been intolerant since we read that soy is as bad as gluten. If you eat soy, eat soy light. If your son is very fond of dairy you will need to find substitutes he likes. If he refuses other "milks" then I would suggest mixing half milk with half of a non dairy milk and gradually increase the non dairy milk until the dairy is gone. The longer he is on dairy the more his body is going to mount an attack and it will slow down his healing but at the same time he needs to get used to dairy free. There are a lot of threads that deal with dairy free and substitutions. If you have any more questions please ask.

[wonkabar]

My casein intolerance score was 30 from Enterolab. I was three months gluten-free before I got tested and feeling much better, so I ignored the casein problem. I wasn't mentally ready to address it.

Hi Carla! Zachary's numerical value was 24 through Enterolab. I think my hubby not only feels badly but is also in a place that's hard to address this, too. Zachary was a 32 week preemie; I went into preterm labor at 27 weeks. He had motor delays and still has a mild language delay and mild sensory issues...all of which is typical for preemies. Fortunately, I taught special ed before I stayed home with our kids, so I identified Zachary's delays very early, and we were able to intervene immediately. He's in the Preschool Disabled program and is doing GREAT! The flip-side of this, is that Zachary has been evaluated up the whazoo in the past year. It's been a long year developmentally and medically for Zachary, so, I think yet another "thing" for him to go through is tough on Daddy. (It's tough on Mommy, too, but I think we deal with things differently! )

I get brain fog, diarrhea, constipation, fatigue, etc. from the casein.

[Carriefaith]

I have a list of recipes that may help:

Open Original Shared Link

I am also gluten and casein free. The diet really isn't that hard to follow, you will become a pro after a few months. You have to read ingredients for casein just like gluten. Watch out for chips, popcorn, candies, gluten-free products, margerine, salad dressings, ect.

My recipes should get you started.