Is it Casein or Something Else?

[Gigi]

I have recently experienced a flare that started around March, intensified and was at it's worst in April and now seems to have calmed down. First I will say that I have flared at this time of year, every year, since 2012 which was my first incidence of chronic diarrhea. I just want to put that out there because seasonality seems to be a factor for me. Also, I have been GF, SF and mostly egg free (I eat them occasionally in baked goods) since August 2014. On Enterolab I had an 8 for casein. Based on the fact that my overall mean value was 7 for the 11 foods I decided to not eliminate dairy when I eliminated gluten, soy and eggs.

So I'm not sure if I was going to get better or not but just about 10 days ago, being very frustrated with my flare, I decided to do a trial of eliminating dairy and eliminating all gluten free baked goods. I had noticed on one or two occasions that eating cheese worsened my symptoms. Bloating was especially bad and notable because it is not one of my everyday symptoms when I'm flaring. Mind you I do not drink dairy milk so I don't consume dairy every day. But I do use and cook with butter, eat cheese and eat ice cream on occasion. All last fall and winter I ate dairy and while I can't say I was completely normal my symptoms were not bad with normally 2 or 3 movements a day and no cramping or gurgling. After eliminating gluten free baked good and dairy the good news and the bad news is that I have seen significant improvement and the flare seems to be on it's way out.

So I'm left wondering what has happened here exactly. Seasonally I was due to get better. (Also, my stress level plummeted at the same time as I cut gluten free products and dairy due to the fact that 6 months of intense wedding planning for my daughter's wedding ended with the wedding taking place on May 16) But maybe I was reacting to other gluten free flours as a primary reaction or because of gluten cross contamination. Or maybe, and this is what would be most depressing to me, I was reacting to dairy. And if it is dairy, that leads me to the question posed in my subject line. Is it casein? Or maybe the flare brought on enough lactose intolerance to exacerbate my symptoms. Or maybe it's not casein but another protein in milk like whey or lactalbumin. And if so is this possibily due to cross reactivity with gluten. I guess all of these possibilities, except perhaps lactose intolerance, still lead me to where I don't want to be and that is having to be dairy free.

I was very hopeful that with a value of 7 for casein on Enterolab that I could continue to eat dairy products. Eliminating them for a time to get better does not seem so bad but I am struggling thinking that I may not be able to have cheese, cream or ice cream at all. Just a few days of eliminating them has proven vastly more difficult than eliminating gluten and is down right depressing. So I'm looking for other's experience with dairy elimination and your educated opinions on whether or not this can be temporary for me? I would just like to know now if I'm truly having an immune response to dairy and if that therefore means I have to ban it from my diet. The sooner I know the sooner I can deal with it. Any suggestions on how to get to the bottom of it quickly? Will MRT or Cyrex testing give me any more information?

Gigi

[tex]

Hi Gigi,

Obviously, any of the possibilities that you named could be the culprit. Back when I was recovering, I often seemed to have problems with baked goods however, and I have a hunch that was due to the fact that it's not uncommon for GF flours to be cross-contaminated with gluten or soy.

If you are in remission now, it would be relatively easy to test casein. Just drink a little lactose-free milk, or eat some hard cheese. Soft cheeses contain lactose, but aged cheeses contain very low amounts of lactose.

Seasonal symptoms are usually due to mast cell issues, in which case an antihistamine should help.

Keep us posted.

Tex

[Grace]

Hi Gigi and Tex,

The article on this forum, "What Are Mast Cells" in about the sixth paragraph says, "the casomorphin in casein (found in all dairy products), can also cause inflammation by directly triggering mast cell degranulation in the intestines." So since Gigi's flare occurred in March and reached it's worse in April, it could be a combination of seasonal issues, like mast cell involvement, in addition to the stress of the wedding that pushed Gigi over the threshold and into a flare.

I too had a flare in April, but I had a bit of stress around that time too. But I had a flare the previous year in April also, which leads me to believe that I have mast cell involvement that has lead me to my CC diagnosis and all these flares. I seem to flare in the spring and in the fall. I think our large amount of pollen in NC pushes me over my histamine threshold, and although I don't have a runny nose, sneezing, or watery eyes, I do have most of the symptoms related to Histamine Intolerance. Talk about a difficult diet! If I do in fact have this, I want a definite test for it, since the diet is very complicated, more so to me than the GF diet, before I totally commit to it. But I don't know how to be tested. :-/

Back in the fall while having a flare, I decided to eliminate dairy and all grains. I don't even eat GF baked products anymore because going GF caused me to lose my sweet tooth. :( But I think this helped quickly with my flare, that along with the season changing to late fall/winter. I spent from November to April symptom free. Thought I had found the answer to my CC. That is until April of this year rolled around.

No doctor has ever mentioned mast cell involvement to me. It wasn't until I read Tex's book that this was an aha moment for me. I had suspected allergies of some kind b/c of the pollen. Gosh having MC takes a ton of detective work, so now I'm just trying to figure out how to get tested for Histamine Intolerance before committing to a low histamine diet.

Tex of course has good advice, Gigi, whether or not you want to test dairy products. For me giving up dairy wasn't that big of a deal...UNTIL..I took my kids last week to get ice cream at this place that makes fresh GF ice cream. It took a lot of will power to say no to some of my favorites like pistachio, and they had this GF flavor, Bordeaux Cherry. But all I got was water...:-/

Good luck figuring this out. I hope you feel better soon!

[Gigi]

Tex,

That is an excellent idea to use lactose free milk as a test. I don't know if I can say I am in remission but with the elimination of dairy and gluten free flours I am not having watery diarrhea anymore. I did have some gluten free toast yesterday morning and so far so good. So I am beginning to suspect dairy as the culprit. I've had none for about 2 weeks now.

Grace,

I had noticed on another thread you posted on that you mentioned having seasonal symptoms. There has to be a connection for me since for 4 straight years I have had my worst symptoms beginning in late February or March, peaking in April and resolving (even disappearing the first two years) in May. I live in Houston so things begin to bloom here very early. And like you I don't have the typical upper respiratory symptoms. Everyone else will be complaining about their sinuses and it's never an issue for me. However, I have tried using antihistamines when my gut is at it's worst and I don't see any clear improvement. I've used claritin, allegra and zyrtec. Maybe I haven't given them enough time in the past. I have never used them consistently for longer than a week or so. I simply forget and fall away from taking them because they don't seem to make a difference. Also zyrtec makes me quite drowsy. It's one benefit for me seems to be making me sleep better. But the drowsiness lasts all day.

So at some point I'll give dairy a test. I've done that with gluten, although it was unintentional, and the result was quick and clear. I can't eat gluten. I'm wondering if dairy is a mast cell issue for me then would the result of a one time test be so clear.

One other thing. If anyone is wanting ice cream but is dairy free I highly recommend Coconut Bliss. It is not only dairy free, but gluten, egg and soy free as well. It is divine! Try the salted caramel. I get it at Whole Foods.

[tex]

Gigi,

For those who have mast cell issues, but whose GI symptoms do not respond to treatment with H1 type antihistamines, sometimes H2 type antihistamines are effective. Examples of H2 blockers are Zantac, Pepcid, and Tagamet.

Breyer makes lactose-free ice cream that can also be used for a casein challenge.

Tex

[Gigi]

Hi Tex. I'm aware of H2 blockers but I thought those were somehow known to possibly make MC worse. I just remember seeing that referred to here on this forum and I've never looked into the why of it. For that reason I haven't given them much of a try because I did not think it was worth the risk. Am I confused about this? However, before I was ever diagnosed with MC or had chronic diarrhea I would find that using zantac helped when I would get bouts of dyspepsia or "sour stomach" and I did use it on occasion and sometimes up to 2 weeks straight.
In fact earlier this spring when I was starting to flair I was having that same issue and I did use zantac for a few days. I don't think it had any effect on my bowel symptoms however. I was paying attention because I know that it is an H2 blocker but maybe I just didn't take it for long enough. In the back of my mind was the idea it could make me worse???

Gigi

[tex]

You are correct that for some of us H2 blockers can trigger MC symptoms. This might relate to whether or not mast cell issues are a problem in different cases. We're all different when it comes to medication responses, and sometimes trial and error testing is the only way to determine what will happen. Some members find that taking both types works better than H1 antihistamines alone.

Tex