casein, IGG testing, LONG

May 2, 2007

I wanted to get others opinions on casein and lactose. I've been on

SCD for almost 4 years for Crohn's disease. 3 years ago, I had my

strictured descending colon cut out, and enjoyed a year of symptom free

living, where I could tolerate everything on the diet. I used the

Yogourmet with Lyosan without incident. One year after surgery, a

colonoscopy showed slight inflammation in the rectum and secum, but an

otherwise normal, healthy colon. My C Reactive Protein (measure of

inflammation) was less than 1. That Fall (2005) I had a miscarriage

and was given an antibiotic shot (Rocephin) for a D&C, and my CRP shot

up to 11.10, and I had diarrhea for a few weeks before taking large

amounts of s.boulardii and acidopholus (lyosan) and finally I achieved

normal bowel movements, but there was always mucus and urgency. I had

to relearn my tolerance for foods, as now I could not tolerate honey,

fruit, peanuts, or cashews, and would have frequent set backs when I

would eat one of those foods, getting diarrhea again, but usually

within a week, I could get my solid bowel movements back with rigorous

probiotic supplementation. I rotated natural antifungals, assuming I

had yeast.

I trialed many probiotics; Harry's 6 strain formula (with the illegal

bifidus which seemed to help), e.coli Nissle (which didn't help),

Natren probiotics, VSL#3 (which increased my bowel movements). I

stayed on s.boulardii most of the time, but sometimes would go weeks

without it. This whole time I was on sulfasalazine, usually 4 capsules

a day. In May, my CRP was down to 8.5, but in December, it was still

8.22, so I hadn't really made much progress in the whole year. I was

eating the yogurt the whole time.

Last December, I decided to try Low Dose Naltrexone, but I started with

a lactose filler. Within a month, I was having looser stools, and my

CRP was up to 15.10! I didn't know if it was the lactose or the LDN,

so I switched to cellulose as a filler, and after a month of that, I

was having less mucus, less urgency, and was able to tolerate more

fruit and honey than the whole last year. My CRP was down to 8.22.

At the end of that month, I switched yogurt starters to ProGurt, and

switched from cows to goats milk. I also had gone back to only

acidopholus and s.boulardii in February, trying to stay legal. What I

didn't know is the temperature sensitivity; we were still making yogurt

the same old way; adding the starter at around 110 (but sometimes

higher), using the Yogourmet (which reaches 115). At the same time of

this switch, I suddenly started experiencing dizziness, and my hands

were going numb; two symptoms I had gotten from sulfasalazine in the

past, when coming on it too quickly. I dropped the sulfasalazine,

figuring the LDN was adjusting my immune system in a way to make me

intolerant of it, and in a few weeks, those symptoms mostly went away.

I also had a rash since January, and that started to fade.

But as the weeks went on, I progressively got worse. More mucus,

urgency, and finally, my bowel movements became looser and were more

bloody, until finally reaching diarrhea. It wasn't until last week

that I realized our yogurt making mistakes, and have probably been

eating large quantities of lactose; I had at least 2-3 bowls of yogurt

a day. I started sulfasalazine again last week, but though a little

dizziness has returned (along with the rash) it is very mild, and the

numb hands have never returned.

I had a stool test in December that showed 0 lactobaccillus, hardly any

bifidus, and lots of e.coli. In January of last year, I had 3 tests

for c.difficile, all negative. I did two other tests (blood and stool)

that showed no c.difficle; one had high antibodies to klebsiella, but

otherwise was normal. One stool test found allergy to casein. I've

been going slow on the sulfa and am up to 6 a day; in a few days I will

be at the maximum dose of 8 a day, and I am taking large amounts of

Lyosan acidopholus around the clock to help quel the flare, which is

how I got out of flares these last 2 years. So far nothing is working,

but I'm only going to the bathroom 4 times a day, 1 of the bowel

movements starts liquid, then is solid, but the rest are pure liquid,

with lots of blood. (Which could be hemmerhoids as well as anal

bleeding.) I am not in any pain, and can sleep through the night.

It is amazing how sensitive I am to lactose, and now I am wondering if

I should be eating the yogurt at all, even if properly made? Of course

my GI doctor wants to do a colonoscopy and has suggested if things look

bad, 6MP or Humira. I almost died from a reaction to 6 MP in the past,

and have taken Remicade for one year, before the surgery, and I am

really against both drugs. And colonoscopies when I am in this state

have always made things 10 times worse, so I am putting that off until

I am more stable.

I went to a new doctor yesterday, who's very into IGG testing and

avoiding foods one is allergic to. She thinks the numb hands and

dizziness could have been a result of the lactose, the LDN with

sulfasalazine, or all three, and it's impossible to know. I am still

on LDN, but obviously, if it is doing anything, it's too subtle to

tell. She thinks I should switch to coconut milk yogurt, and abandon

dairy entirely based on the casein allergy and my experience with

lactose. But I know that a lot of you have gone the IGG route, and I

guess I fear that it's going to come up with all the things I eat

daily; the almond flour, eggs, chicken soup, etc. I don't mind

rotating, but I would rather just do SCD.

I know Elaine didn't think much of IGG testing. It has been a real

heartbreak since the miscarriage, since after the surgery, I believed

that as long as I stayed on the diet, I would eventually be well. All

last year, my lack of progress could have been due to the different

probiotics, or eating fruit too soon, etc. The only illegals I ate

were occasional balsamic vinegar, and stevia (about 3 drops a day to

sweeten the yogurt), though now I wonder about my yogurt maker; the 115

temperature meant I could have been ingesting a little lactose all

along, though before the antibiotic, it didn't seem to make much

difference.

I am hoping at the full dose, the sulfasalazine will finally kick in,

as well as the probiotics (though the Lyosan has skim milk powder in

it). Should I go off dairy entirely? I've had failures with the

coconut milk yogurt, but am willing to try again, as yogurt is a staple

in my diet. We've got our crockpot working at a perfect temperature

(between 102-106), so I finally have a good batch of cow's yogurt, but

now I'm afraid to eat it.

Do you think I was just too impatient? I guess I'll see what the IGG

testing says, but I know not many people put stock in it. If I can

just get back to solid bowel movements again without blood, I will be

happy for now, and have considered starting all over again, adding one

food at a time, to see if there's anything I don't tolerate, but I

can't handle much fruit or honey, so the intro would only be chicken

soup, vegetable juice jello (ugh!) and meat, which I did a few days

ago, minus the jello, without improvement. I'm eating 1 waffle a day

now, since even during flares last year, I still tolerated it fine. I

guess I could have been sabotoging myself with the Yogourmet this whole

time....

I'm sorry this is SO long, but I wanted to get others opinions as to

how to proceed, since there are so many people here who've gone down

the IGG road and are casein sensitive; has anyone had real success with

coconut milk yogurt? I am willing to have patience, if I know

eventually things will improve, but it is scary having such a bad

setback, all induced by trying to improve things with goat milk. I

wish I could go back in time and do it all over again!

Debora

May 2, 2007

Unfortunately IGG tests are often just measuring what foods you are regularly

exposed to. There are a few doctors that do a skin test where they check it

every few hours and then 24, 48, 72 hours later. That is a much more reliable

way to test for immediate and delayed food allergy -- but very few doctors do

it. I would not waste my money on IGG testing or any doctor that relies on it.

Where do you live?

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Debora Wade wrote: