Casein Intolerance

[sfm]

I had blood work done a few months ago, after being gluten free for about 2 1/2 months. My doctor did not instruct me to go back to eating gluten prior to testing, and no big surprise, my results were "within normal range." To his credit, my dr said this didn't mean I wasn't sensitive to gluten, just not celiac.

I knew that the diet worked for me, so I decided to stick with it. But when I had both of my children tested, my son tested positive for one of the celiac genes - although both children tested negative for the gliadin antibodies.

Out of curiosity, I decided to go ahead and get the enterolab tests done, including the genetic testing - which came with a free milk sensitivity test.

My results came back:

Fecal Antigliadin IgA 15 (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA 17 Units (Normal Range <10 Units)

Quantitative Microscopic Fecal Fat Score <300 Units (Normal Range <300 Units)

Fecal anti-casein (cow's milk) IgA antibody 21 Units (Normal Range <10 Units)

HLA-DQB1 Molecular analysis, Allele 1 0301

HLA-DQB1 Molecular analysis, Allele 2 0301

Serologic equivalent: HLA-DQ 3,3 (Subtype 7,7)

So after being gluten free for several months, I am still showing elevated levels of the antigliadin and the transglutaminase. In addition, although I don't have the celiac gene that my son does, I do have a double copy of one of the genes for gluten intolerance. Which means that both my children have at least one copy.

But I also have elevated anti-casein IgA. Is this something that can be a temporary thing, until more healing from the gluten damage? I've heard people mention that, but I wasn't sure if it referred to casein or more of a lactose intolerance. Or does it definitely mean I'm forever off milk, too? I feel like there's so much I can't eat, already.

Does anybody know anything about that?

Thanks-

Sheryll

[chocolatelover]

Sheryll, I, too, am in the same boat with the casein. I just got my results this week and my casein antibodies were 32 (normal range <10). The gluten I can deal with--the casein I'm having a much harder time swallowing. I think it's partly because I don't know how drastically it's affecting me right now (how many of my symptoms are from the gluten and how many are from the dairy?), and I don't know what the long term consequences are. I have heard that some people can eventually put small amounts back in their diet, some can handle it once the damage heals, and some can never go back. I think it's a trial and error thing. I just read that you (we!) should be off any and all casein for a year before trying to bring it back in. Does this also include goat and sheep milk?

What I don't know is if even minute amounts will cause problems or not. I know it's not like gluten in that it won't actually cause damage to the body, but it sure can make us feel crappy!

As for the other levels, I have read that it can take up to a year for those to go back to "normal".

Good luck--I have lots of recipes if you are interested in some new things to eat. I also feel like there is WAY more that I can't eat than I can, and it's really getting me down. However, I'm happy to share!

CL

[AndreaB]

There are alot of opinions on whether enterolab's results are really forever as they state, or temporary. There is one poster that I'm aware of that can eat dairy now with no known problems.

I would definately give yourself 6 months to 1 year to heal if you have leaky gut and then try again. If you don't have leaky gut you could try sooner. You'll know (if you don't have other intolerances) whether dairy will continue to be a problem for you. For some it means only having something they are intolerant to once in a while, whether that be once a week or once a month.

You have to listen to your body, that's the best clue.

[nora-n]

Sheryl, double DQ7 I remember is one of the gluten sensitive genes.

Just do a search on it.

I am not DQ2 or 8 either and some with DQ1 post that they are even more gluten sensitive than proper celiacs.... I react to even tiny amounts of the wehat starch that the celiacs here tolerate. I might be DQ1 but cannot find out. They only give DQ2 or 8 results.

nora

norway

europe

[Ursa Major]

Personally, if you tested as being casein intolerant, I would be careful about adding dairy back into my diet! You don't necessarily get easily identifiable gastrointestinal symptoms from dairy. My husband's cousin can't have any dairy at all. Her symptom upon eating even small amounts of dairy? Severe depression within hours, that is only alleviated by eliminating all dairy. It took years of agony to figure it out.

I wonder how many people are on antidepressants that actually have a casein intolerance that is causing the depression. How many doctors know of that connection?

Goats and sheep's milk is very low in casein, and might be okay. I can handle a little goats milk once in a while.

And quite a few doctors and scientists appear to think that if you're intolerant to casein (and the same applies to soy) it can also destroy your villi, not just gluten. Not enough research has been done to be officially confirmed (of course, the research won't be easily approved, as there would be a lot of opposition from certain quarters, who want people to believe that 'milk does a body good', when nothing could be further from the truth).

[hathor]

When I asked Enterolab, I was told that the intolerances found were permanent (I was told I was intolerant to everything they tested for). Since I had problems digesting dairy and eggs for some time, I didn't find the results surprising (except the casein antibodies seemed high for someone who rarely had dairy). I was surprised by my soy and yeast results, since I never noticed an adverse reaction to them. I was particularly curious about the yeast result since it is so close to acceptable (11).

Anyway, they said that the antibodies would go down if I didn't eat the items. But that they would increase again if I started up again ...

I was thinking I would try soy and/or yeast again in 6 months to a year and see what happens. But now I'm finding that my system is working even better without them, so I'm not sure.

My opinion would be to eliminate the casein and see how you feel, at the very least. You also might do some research about the overall healthiness of dairy. If you reach the conclusion that it isn't that healthy to begin with, it will be easier to give it up.

The FAQs on the Enterolab site do address the casein issue and also use of goat or sheep's milk products. Even though I've followed mostly a vegan diet for years, I would occasionally have products with dairy in them. Now I think my occasional indulgence will be with goat or sheep's milk products -- and none of that for some months yet. I will never have cheesecake again, that's for sure -- I had it at Thanksgiving to be nice to the teenaged relative who was so proud of making it and was sick for the next week.

I've seen people say that they've been able to go back to dairy. But I don't know if they were ever told of a casein intolerance by Enterolab. (Not saying these folks don't exist -- I just haven't been on these boards for very long.)

At least be glad you didn't do the egg, soy, and yeast panel. I did it out of curiosity about the egg (since I couldn't seem to digest regular pancakes anymore ) and then found out about the soy and yeast. The yeast-free thing took some time to do because I had bought all this expensive gluten-free food that had the stuff in it. Oh well ... I was looking forward to having Redbridge. Sigh ...

I'm feeling so good these days, though, so the elimination of certain items has been worth it. There are certainly a lot worse problems people can have.

But everyone should feel free to mourn the loss of certain items out of their diet, at least for a reasonable period of time. Then you find alternatives, maybe even some yummy things you'd never have tried if it weren't for the test results, and it doesn't seem like that big a deal anymore. At least, this has been the arc of my emotions.

[CarlaB]

I'm the poster Andrea is probably referring to. I tested as a 32 for casein in Enterolab's test. I had already been gluten-free for 3 months. I went dairy-free for six months and saw NO change whatsoever. I challenged the dairy and have no problems with it at all. I drink a latte every day and eat cheese often.

Like any test, it's not 100% accurate ... not to take away from Enterolab, but no test is 100%.

Also, unless you're Asian, everyone has two gluten intolerant (or celiac) genes. The only gene that is not gluten intolerant is the DQ4, which is found in Asians.

I think that is the reason why people who are not sick from gluten still feel better not eating it. When is the last time you saw someone eat a big plate of pasta, eat lots of garlic bread with it, and feel good afterward, like they had some energy? I know my healthy hubby even gets some stomach upset with gluten on occasion.

I, on the other hand, get sick off a crumb and have no celiac genes.

I would recommend staying off dairy for six months, then challenge it if you think the test may have been inaccurate.

I would also look for ways to heal your leaky gut, which can be the cause of intolerances. There are lots of threads here on leaky gut that you will find of interest. Taking probiotics is probably the single most important thing for this.

[CMCM]

You have 2 gluten sensitivity identified genes. If your son has a celiac gene, that means he got it from his father, not you. Dr. Fine's FAQs said (if I interpreted corrected) that two copies of a gene (and I'm assumiing that means 2 celiac or 2 gluten sensitive) means a greater predisposition to symptoms and symptoms may be worse than with only one. But then if everyone except Asians have gluten sensitive genes, perhaps the big news (yet to be officially confirmed) is that we ALL have one degree or another of gluten sensitivity. Certainly many doctors now say this is epidemic. Some say 80% or more of us are gluten sensitive. Perhaps 100% of us will be shown to be gluten sensitive in the end!

As for casein, I also tested sensitive to it. Originally that didn't surpise me because for my entire life I thought it was dairy I was having problems with, not gluten. Dr. Fine also said that if casein sensitive (demonstrated by the fact that you produce elevated antibodies to casein), you should not eat dairy any more than you should eat gluten, and that casein can do internal damage similar to what gluten does. I don't know if there is any real confirmation/studies on this.

After I got my Enterolab tests back a year ago, I avoided gluten and casein. Then the last few months, although still avoiding gluten I allowed more dairy back into my diet and oddly enough, it doesn't seem to bother me any more. Maybe it was never the casein, maybe it was just gluten that bothered me, or the gluten irritated everything, caused leaky gut, and led to other intolerances including casein. Maybe by not eating gluten things healed enough that casein is less of a problem now. I don't have a lot of dairy, but I have a cappuccino several times a week, an occasional yogurt, occasional ice cream, occasional cheese. None of it bothers me noticeably, whereas in the past I'd feel really sick and bloated from these things. So I don't know what to think any more.

Perhaps the bottom line is that ANY sensitivity, whether it be gluten, casein, soy, egg etc.....perhaps if you are sensitive, any of these can cause damage and it's not just gluten. Perhaps various itolerances cause the leaky gut situation. Perhaps one out of control intolerance can lead to many others. This certainly looks like a good possibility.

[Slackermommy]

Also, unless you're Asian, everyone has two gluten intolerant (or celiac) genes.

I haven't seen that here. I think many more people here have one, but not two. If you research the Entero lab results that people have posted here, you will see many of them have 1 gene.

[mmaccartney]

casein intolerance is a life long issue.

I've been dairy free for some time. I knew I had a dairy problem before I was tested; however I wanted to see if it was lactose or casein.

I am sure that I could eat small amounts of dairy without any major symptoms showing up. There is some threshold where if I have too much dairy I will have severe symptoms. I gave up all dairy as I figure that even small amounts must be causing some sort of reaction in me...

[CarlaB]

I haven't seen that here. I think many more people here have one, but not two. If you research the Entero lab results that people have posted here, you will see many of them have 1 gene.

I've never seen that here. If they only have one gene, it's because they have one celiac and one gluten intolerant gene. We even had a thread on this a few months back.

This is from the Enterolab website. Open Original Shared Link

Thus, it is really only those with DQ4,4 that have never been shown to have a genetic predisposition to gluten sensitivity, and this gene combination is very rare in America

[Nancym]

I'm casein intolerant too. I'm not *as* fanatical about avoiding dairy as I am gluten, ocassionally I indulge. But I would urge you to try going without for awhile and seeing if it does anything positive for you. For me it cleared up some niggling problems like constipation and gas.

For me it seemed much harder to give up than gluten but in the end, I did it and it wasn't that awful.

[Mango04]

I will never have cheesecake again, that's for sure --

Open Original Shared Link

I'm pretty useless at interpreting test results, so that's about all I can offer to this thread (but...it's also soy-free, gluten-free and pretty much free of everything else... ) It's actually available at a lot of health food stores.

[hathor]

Hmm ... cheesecake without cheese. Is this a great country or what

The website doesn't say WHAT it is made out of. Do you know? I'll certainly keep my eyes open for it. All the dairy-free cheesecake recipes I've seen call for tofu.

I have been able to find some chocolate things consistent with my no-no's, so I'm not feeling that deprived these days.

[Mango04]

The website doesn't say WHAT it is made out of. Do you know? I'll certainly keep my eyes open for it. All the dairy-free cheesecake recipes I've seen call for tofu.

Yeah it's a raw vegan thing. Pretty much just fruit, nuts and agave. I have no idea how they make it into a cheesecake-like substance, but they do...

[sfm]

To all -

Thank you so much for all of your insights. I have been trying to go dairy / casein free for about a week. I tried soy milk in my tea; unfortunately, I get migraines, and that is a very common trigger. I've had a mild headache every day and taken imitrex twice this week, so I guess it's one of mine, too... However, I also can get hazelnut milk (yum) and vanilla almond milk at Whole Foods, and they taste pretty good and don't seem to give me problems.

It's only been a week - but I have to say that I have been feeling good stomach-wise, so I would have to guess that there is something to my Enterolab results. I have been trying to decide whether to completely eliminate casein permanently, or go "casein - light" as some of you mentioned.

When I told my sister about the casein sensitivity, and how I feel like I can't eat anything anymore, she laughed and said, "Yes, now you have to be a carnivorous vegetarian, and that's it, nothing else...!"

Sheryll