Celiac Disease discussion

[deb]

While it can take up to a couple of weeks to see changes in some people after starting an ED, it's possible to see changes in less time. as the bulk of the offending food isn't getting in any more, and then further improvement as the rest of the leftover proteins are processed out.

As fr the abx, if they're causing tummy upset, they would improve one set of symptoms while causing another, so probiotics would help with that. There are dairy-free probiotics out there, but you have to hunt them down. I think Culturelle makes one.

[essexlemon]

Thanks Deb.

I previously used Optibac (it's an icky powder type) which seemed to help with colic when he was younger but hasn't seemed to help lately. It doesn't list dairy - just potato starch, fructooligosaccharides and a string of probiotic cultures.  Haven't tried giving it direct, I've just taken it myself and hoped he would get it in my milk.

I don't know whether to keep FX that the ED helps, or that it doesn't.i

[deb]

Probiotics aren't food proteins like gluten or casein, but organisms on their own. I don't think they can be given thru breastmilk but have to be ingested directly. They live in the gut, and aren't carried in the bloodstream, so I am pretty sure that breastmilk wouldn't be the way to transfer them. You could try some on your nipples while you nurse; I did that with  Natalie as a baby.

[Buntybear]

DS was tested on Tuesday (blood test) and we are awaiting results.  I'm back on a wheat and dairy ED as of Wednesday morning (did a big shop on Tuesday afternoon after a week at my parents) and DS is already much, much better at night.  Surely that is too quick?

It can be that quick! - not sure if it is with Coeliacs though, that is a different kettle of fish as far as I know.

However if he is on abx then it can be hard to tell. They affected Olly's digestion hugely - we dreaded any infections that needed them 

[essexlemon]

I spoke too soon He was up much of the night. Sick this morning. Screamed blue murder all morning and went down exhausted for a nap at 8.15 this morning.

We had stir fry last night but onions don't seem to upset him if I eat, say, bolognase (with gluten free pasta). I used a jar of sauce but the ingredients looked safe.

My Mum suggested putting him on an allergenic formula so that what I'm eating doesn't confuse things but the thought of stopping BF'ing makes me a bit emotional. Am I being selfish?

[essexlemon]

Hang on. He got hold of DS1's (empty) bottle during bedtime last night. I wonder if he got a couple of drops of milk off the nipple before I removed it. Hmm. It was goat's milk though.

I'd rather be dealing with a dairy intollerance than coeliac...

[deb]

I'm MPI and I can't drink goats' milk either (unless it's raw, in which case I can drink cow or goat). So if he's truly MPI, that could have been a trigger.

Yeah, formula is nice because you KNOW what's in it and it's (theoretically, anyway) consistent all the time. But in many ways that's also the beauty of breast milk. And there's no guarantee that it won't take several different tries of formula in the event he reacts to something else in the formula that you don't know about yet.

[essexlemon]

Deb, escuse my ignorance but what is raw milk? Would that be straight from the cow/goat? My friend's husband is a farmer and she keeps a few chickens and a couple of ponies - maybe I can persuade her to get a goat - I am such a horrible friend

[deb]

Yes, raw would be unpasteurized. You do have to make sure it's nice and clean, mind you, but yes, as close to right-from-the-animal as possible.  There's a site you can search in Britain to find farms that sell raw milk.... lemme see if I can find it.... ah-hah! http://www.realmilk.com/where-other.html#uk

[essexlemon]

Cool, thanks Deb.

At the risk of going off topic - how does that work, the MPI but can drink raw milk?  Does the pasturising/heat treating affect the particles or something - like mixing breast milk with formula?

[deb]

Milk comes with its own enzymes. The theory goes that pasteurizing kills the enzymes and thus makes the milk hard or impossible to process in the body. If you try it be sure to use a reputable farm. There's a reason pasteurization became standard practice in the West. I've  seen a 4YO who got hives from regular milkndrinknraw from a cup w/no ill effects at all, to her mommy's delight. :-)

[speechie]

Now that DH is celiac positive, I found out the cost of his specialized breads, baking items are tax deductible as medically necessary! Anyone else doing this??