I guess Celiac Disease is one of those things that we only have a basic understanding about.  When you couple it with breastfeeding, we know even less…  Great!

Yesterday was a super bad day.  I spent all of 2 hours at home.  The majority of the day was spent in a waiting room.  We finally got T-Rex tested for CD, but it took that long to do it.  Ridiculous.  I didn't appreciate the stares people kept giving us – you see that he's s toddler in a very non-child friendly waiting room.  You see that we've been sitting there longer than anyone.  Would you like to try to make him sit still and be quiet?  Bite me!

So anyway, that led to a gluten-day.  I have been dying for some gluten anyway, but with the stress, it just made me cave and I gave in.  I indulged.  A lot.  This morning I didn't feel too bad, so I decided to do it again.  I know it's dumb.  I know it starts an auto-immune response in my body that could not only make my stomach hurt, but give me a fever, chills, cold sweats, hot flashes, and never mind the damage it can do on a cellular level.  I get that.  I really do.  It's just that it's hard to care when I feel like my family would benefit from my insurance pay off if I were to kick the bucket.  Srsly…

Anyway, that was all well and good until I thought about all the stuff that passes through breastmilk…  What if I am activating the disease in my daughter?  I can't GIVE her the disease, but if she got my gene (which there is a 50/50 chance of!), I could potentially activate it, right?  The stuff I have been reading so far seems to agree on the following points:

  • Celiac patients should stick to a gluten-free diet at all costs;
  • If you have the IgA response (which I do), the antibodies CAN be passed through breastmilk.  Once in your baby's GI tract, they will be somewhat denatured by digestive acids, and therefore, not as harmful to the baby as they are to the mother;
  • Passing on the antibodies is only detrimental if you are ALWAYS passing them on – once in a while, either deliberately or through cross-contamination – seems to be have little to no effect and your baby may just "act funny" for a day or two;
  • Breastfeeding, even with small amounts of contamination can actually be the best defense against Celiac disease if your child has the gene.  Because breastfeeding helps the gut mature and create immune properties that formula does not, it can give your baby lasting protection against the activation of the gene that controls Celiac Disease;
  • Introducing gluten slowly between 4 and 7 months of age, while breastfeeding, can help the baby aclimate to gluten, therefore, prolonging the activation of, or all together avoiding Celiac Disease.

So yes, I feel like an asshat for giving my babe IgA antibodies to gluten, but I guess I won't toss myself over a cliff for it…  I'll just add it to the list of stuff I will never forgive myself for and move on, constantly beating myself over the head for it.  I wil also continue to be gluten-free until she is no longer breastfeeding, so that when I choose to do something stupid, I am hurting only myself.

On another note, T-Rex's test results should be in Thursday.  If they are negative, our insurance will then pay for the intestinal biopsy.  That requires that he be put to sleep, so we will be declining that test.  If the blood test is negative, we will pay out of pocket for the test I did which is far more accurate and completely non-invasive.  Now how I will get him to poop into a "specimen container" will be a neat party trick, indeed, but crossing that bridge when we come to it and all that jazz…  That is also assuming the blood test is negative…  Which I am because it's "highly unreliable."  But that's how insurance works – pay for the most expensive, but least accurate test first…  Second, the most invasive and only moderately-accurate test…  Don't acknowledge existance or validity of most accurate, least expensive, least invasive testing method.  *sigh*  Poor T-Rex.  Part of me hopes he has Celiac Disease because I know how to cope with it, and it would take care of sooo many things.  If it's not CD that's making him behave like a monster, mimic my insomniac behaviors, not eat and not poop, than I really have no clue where to even begin.   If it IS CD, please let it be picked up by the blood test…  I'd really rather not put another several hundred dollars on our credit card…  We're already looking at another almost $200.00 for new boosters for Mega and T-Rex since Mega's is "outdated" (he's 4.5 years old!!!) and T-Rex is almost too big for his "convertible" car seat.  I really wish I had known enough just to spend the money on the Britax or Recaro the first time… Damn you hindsight!  Damn you all to Hell and back!  Shit fire…  I just threw that last part in for good measure…  Make sure The Force knew I meant it – I'm pissed!

All that brings me to something else: moo-lah.  Between the potential of paying for another test, the two new booster seats, replacing a window T-Rex broke (he's a brute and he's out of control – I wasn't lying!), having to make Mega's first tuition payment in a month, and still dealing with one car,  we're just up the effing creek.  With no oars.  And not even a life jacket to share betwixt us.  And there's a hole in our canoe…  And crocs in the water.  Am I making it clear how absolutely, positively f*cked we are?  We have credit cards…  Oh yeah, we've got a couple thousand available there…  But we're already sitting on $8000 in CC debt, so I'd rather not add to the mountain we're already trying so hard to scale.  We have less than half our original loan amount on the van – which is good because we just reached the half-way point for the loan maturity.  Note: even paying $30.00 "extra" per month, will add up and save you hundreds in interest, kiddies!  But that $30.00 has been going to momma's foods, and will now go even less far with 2 people eating gluten free.  I don't know if you've noticed, but the healthier the food, the more expensive it tends to be.  Since we've cut things like Hamburger Helper out of our house, our grocery budget has gone up considerably.  We did that well before I was diagnosed – like, when we had Mega.  When we took it a step further when I got diagnosed, it destroyed our budget.  Even trying to get 3-4 days worth of fresh fruits and veggies in the house is HARD.  The rice pastas and such are probably going to become a luxury for T-Rex and I.  I simply can't afford $4.00 for a box of spaghetti noodles and $5.00 for a loaf of GF bread that is HALF the size of a loaf you'd normally buy.  Money might make the world go round, but it can suck it!  I am so damn tired of worrying about every little penny that leaves our wallets. 

Yesterday and today are just days when I feel like nothing can go right and we're headed for a head-on collision with disaster.  I hate my disease; I hate that my children may have it because I passed a gene on to them, or made some selfish dietary decisions.  I hate that I can't get at least 2 doula clients per month guaranteed…  I hate feeling so damn bone-weary and worn out.  I hate feeling like I am getting my ass handed to me before my feet even hit the floor in the morning… 

"But I can't think about that now.  If I do, I'll go crazy!  I'll think about that tomorrow." – Scarlett O'Hara, Gone With The Wind

*Day 88: I am grateful TriCare finally decided to acknowledge SOMETHING and pay for some form of testing for T-Rex.