Reason #12154 why I hate Celiac Disease

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…

We’re taking over!!!

I knew Celiac Disease was more common than people that, and that awareness has risen sharply over the past few years thanks to public figures like Elizabeth Hasselback talking about it, but man!

This website was suggested to me by a recently-met friend in the birth community.  This guy rocks.  He writes about all kinds of GF and Celiac-related stuff – even beer.  Raising awareness is rad, ya'll!  Even if you don't have Celiac Disease or a wheat sensitivity, the fact that this disease afflicts one in 133 people should be enough to make you peruse the article.  The diagnostic spectrum for this disease sucks – meaning even if you don't have the "normal" symptoms, but have odd bowels and other weird seemingly un-related symptoms, you SHOULD look twice.  Seriously, who would have though that bi-polar disorder, a horrible complexion, anemia, hypoglycemia, never pooping, weight retention despite rarely eating, kidney failure, liver stress, and chronic headaches could all be traced back to a single disease?  BIZARRE!  So yes, check it out and do a little educatin'.  Spread the word, yo!

Here we go…

• Now that the boys are home, I have very little time.
• I've been working a lot on things over here and hoping to not only increase our traffic, but actually give people someting worth reading once they make it over there.
• I'm totally ready for this little debutante to make her debut.  I feel huge and gross all the time, and where gaining weight may have been an issue before, it certainly isn't now!
• I swore I'd flip my damn lid if I got any new stretch marks and the way this child is going, I'll be committed by the time she does decide to come out.
• It's lovely having the boys home, but I am totally enjoying nap time…  I'd be enjoying it more if I could also indulge in a nap, but you know that Newton's Law or whatever it is that says, "As soon as Mommy falls asleep, it's time to wake up!"
• Mega kicked my butt in Wii bowling, but was a very gracious winner today.  He's such a treat to be around, even when he's grittin' on me for the time we've lost together the past few weeks.
• Oh yeah, he's pissed.  He's been all piss and vinegar towards me, but sweetness and light for DH.  I think he's starting to get over it, but I'm not quite ready to hold my breath on that one.
• I can't stop thinking about LRRH – she got laid off last Friday, and I really hope she finds something PRONTO because I know she has enough on her plate right now and it's stressing her out…
• I also can't stop thinking about an upcoming wedding in May.  Well, two, but I know I can't be at one.  I still have to find someone to watch the boys, and I'm pretty sure I've exhausted our options, short of asking some stranger.  Yipes!
• The wedding I can't go to – you should SEE the shoes I was supposed to be wearing the day of.  HOT!  Once my ankles aren't so chubby, I'll have to remember to post a picture.  I've always had pretty decent legs for a chubby girl, but with the recent burst of activity, they're a little puffy these days.
• I'm tired of being gluten-free.  I found some yummy graham crackers, but when DH and I tried to make s'mores last night, they totally fell apart and I had to make 3 mini s'mores for every one of DH's normal sized ones.  Indulgences aren't supposed to be that damn time consuming, I tell you!
• I haven't even gotten dressed today.
• T-Rex has seasonal allergies like me and he's miserable, and therefore, all over me.  He's been sitting in what little is left of my lap (while constantly digging his elbows into his sister's back trying to scoot back and make more room for his butt) more or less all day with the exception of lunch and nap time.
• It's nice and all, but I have 3 very angry looking spots where he kept diggin' his elbows in, and I tell you, my skin is sensitive enough as it tries to stretch even more to cover this chubby, stubborn little monkey.
• Pictures to come – we did an egg hunt yesterday in the backyard for the boys.  Good times!
• Out of time: I think T-Rex is awake after only 45 minutes of sleep.  Pray for us all!

*Day 64: I am grateful for an understanding chiropractor who doesn't charge me when I have to cancel my appointment at the last minute because my kids' noses won't stop running long enough for me to even pull a clean shirt over their heads.  Whew!

I’m so (not) hungry

          I'm back to feeling as though I can't eat any thing.  I hate having to make different shopping trips for my food.  It makes me feel like a leper or something.  I have rice noodles, Gorilla Munch, and a few cereal/snack bars and that's about it.  I can eat the spaghetti sauce and canned veggies all day.  Other than that, there isn't much in the house I can eat.  I have to eat every hour or two to keep something in my stomach so I don't throw up, and I swear, I'm living on tortilla chips.  It sucks. 

        I did just order some stuff from glutenfree.com, so let's hope that helps tide me over for a while.  Oy.

Results

My test results came back this afternoon.

Interpretation of Fecal Antigliadin IgA:  Intestinal antigliadin IgA antibody was elevated, indicating that you have active dietary gluten sensitivity. For optimal health, resolution of symptoms (if you have them), and prevention of small intestinal damage and malnutrition, osteoporosis, and damage to other tissues (like nerves, brain, joints, muscles, thyroid, pancreas, other glands, skin, liver, spleen, among others), it is recommended that you follow a strict and permanent gluten free diet. As gluten sensitivity is a genetic syndrome, you may want to have your relatives screened as well.

Interpretation of Fecal Antitissue Transglutam inase IgA:  You have an autoimmune reaction to the human enzyme tissue transglutaminase, secondary to dietary gluten sensitivity.

Interpretation of Quantitative Microscopic Fecal Fat Score:  Provided that dietary fat is being ingested, a fecal fat score less than 300 indicates there is no malabsorbed dietary fat in stool indicating that digestion and absorption of nutrients is currently normal.

Interpretation of Fecal anti-casein (cow’s milk) IgA antibody:  Levels of fecal IgA antibody to a food antigen greater than or equal to 10 are indicative of an immune reaction, and hence immunologic “sensitivity” to that food. For any elevated fecal antibody level, it is recommended to remove that food from your diet. Values less than 10 indicate there currently is minimal or no reaction to that food and hence, no direct evidence of food sensitivity to that specific food. However, because 1 in 500 people cannot make IgA at all, and rarely, some people can still have clinically significant reactions to a food antigen despite the lack of a significant antibody reaction (because the reactions primarily involve T cells), if you have an immune syndrome or symptoms associated with food sensitivity, it is recommended that you try a strict removal of suspect foods from your diet for up to 12 months despite a negative test.

Interpretation Of HLA-DQ Testing:  Although you do not possess one of the main HLA-DQB1 genes predisposing to celiac sprue (HLA-DQB1*0201 or HLA-DQB1*0302), HLA gene analysis reveals that you have one copy of a gene that predisposes to gluten sensitivity (any DQ1, DQ2 not by HLA-DQB1*0201, or DQ3 not by HLA-DQB1*0302). Having one of these genes means that each of your offspring has a 50% chance of receiving this gene from you, and at least one of your parents passed it to you.

          So all that basically means: I have Celiac Disease (hence the autoimmune reaction).  I do NOT have a milk sensitivity.  I do NOT have the gene for Celiac Disease, but DO have allele that predisposes me to it.  Each of my children has a 50% chance of inheriting that gene.  Because it is not the gene “responsible” for Celiac Disease, they should be screened periodically, or if they become symptomatic at any time. 

          The gluten is much easier to remove from my diet than the caseine, so thank The Force for small favors.  I can have my damn cheese and not feel guilty now!  WOOT!  No more hunting around for that certain brand of rice milk, either!  I know having this disease isn’t necessarily a reason to celebrate, but it’s better than what we were looking at, so I’m okay with it.  I can be gluten-free forever.  I really can…  as long as I can have my friggin’ cheese!  WOO-HOO!!!

Low points…

• I am at a point where I am thinking about not caring about what goes in my mouth.  Rationally, I don’t want to feel like shit any more, but seriously, the thought of preparing another meal just makes me tired.  I don’t want to continue to damage my GI tract or other organs, but cheese, yogurt, real pizza, bagels, graham crackers, marshmallows, ranch dressing, chocolate cake, pudding, fried chicken (rare though it is that I eat it), donuts, cream puffs, frosted shredded wheat…  All that and about a million other things is a lot to walk away from.  I don’t have much will power, especially for things that don’t make me happy…  I wish I knew already whether or not I am truly allergic to milk.  I keep feeling like I am “cheating” by eating cheese and dairy products.  For all I know, I am still jacking myself up, but I can’t seem to let the dairy go on top of the wheat.  Once I know for sure that I can’t have the milk, I’ll kick it out because I don’t want to keep killing myself, blah blah blah, but it still really sucks. 
• I feel like I’m living in a cave.  We don’t have a routine any more.  We went from playgroup twice a week, with the option to attend other events, and usually 1-2 “spontaneous” outtings to absolutely nothing.  The boys are going stir crazy and so am I.  I’ve dumped a lot of effort into work.  It’s good, but it doesn’t help the boys much.  My new parent package is a lot nicer, and I’m working my way towards a more professional web site, but like I said, the boys aren’t benefitting.
• Mega is driving me over the edge.  Without regular outlets for his energy, he’s getting frustrated over the smallest of things, which of course, frustrates me.  We’re going to kill each other before long…
• Our current financial/economic standing is no bueno.  I still don’t know that I’d say we’re in a recession or whatever, but I do know that my little family is getting stomped.  For the first time in a very long time, I had to transfer money from savings just to cover our monthly expenses – not because we wanted to eat out, hit the mall, or go anywhere special, but to pay the actual power and phone bills…  Fan-damn-tastic.   
• I had to increase my doula fees just to cover gas – I went from pocketing half my fee as profit to less than a quarter if I had to drive beyond the closest hospital.  That’s a bit ridiculous to me, especially because I swore I would never let someone walk away from a doula’s services because of their financial standing.  But seriously, I can’t justify leaving the house, packing food, missing a day or more with my kids, and coming home absolutely exhausted for $50.00.  So, I had to pass the bad juju on, unfortunately.  *sigh*  That makes me feel like a shmuck.  So I try to work with people so that I’m not working for free, but my clients don’t feel like they’re pawning their right arm to have a doula… 
• I’m tired.  Despite melatonin being added back into my daily regime of pills to swallow, I’m still not sleeping very well.  I wake up every 30-45 minutes and I feel as though I toss and turn more than half the night.
• I miss Gram…  More than usual lately.  I seem to fixate on things regarding the after life, too…  “What Dreams May Come” and “City of Angels” for instance…  Hmm…
• I’m tired of the effort of every little thing.  It’s a bad week.  Whatever.

Bad, bad juju…

    I did a bad thing today.  It all started with potato chips.  Now, I read every label.  Every nutritional label on any edible product that is in my home has been read at least once, by me.  I could have sworn these chips were gluten-free.  I knew they weren’t caseine free, but as the jury is still out on that, I have decided to kind of lighten up on the no-milk thing.  Maybe it’s dumb, but for now, it’s helping me stick to a diet I can’t stand.  So…  I’m eating these chips when DH lovingly points out that they contain MSG – monosodium GLUTamate.  Fabulous.  So much for those.

          We took the kids to CEC for dinner and games since I was too lazy to make it to the “Fancy Shmancy Outdoor Place” and too cheap to take the entire brood to “Supposedly Really Great Indoor Place.”  It was ridiculously crowded – the hostess asked wearily if we had another walk-in birthday party.  I answered that we did not, and asked if it was always this busy on Sunday evenings at 6 PM.  She replied in the negative, and stated that they had an unusually high number of walk-in birthday parties.  Fabulous occurrence number 2.

          We order our pizza.  I ate before we left, but that’s one thing I really, really don’t like about this diet – I never feel full or even satisfied after eating.  I usually quit eating because I am not interested in what I am eating, or just because I’m tired of eating whatever is on my plate.  So, having said that…  It smelled sooo good.  It looked really good, grease and all…  I ate 2.5 pieces.  The crust, the dough, the cheese…  Oh my Force, I thought I had died and gone to Heaven/reached Nirvana/ found the pot of gold at the end of the rainbow.  It was like reuniting with an old friend.  That soft, yielding texture…  The airy-ness of the dough…  It was all so wonderful I couldn’t stop at a single slice.  Besides, in for a penny, in for a pound, right?  Right!

          So yes, I fell off the wagon today.  Okay, so maybe “jumped” is a better term, but what the fuck ever.  I enjoyed it!  I might not enjoy the way I feel tomorrow, but honestly, I don’t think I am that de-sensitized yet.  I have been told that the more I do things like that, the more I will pay for it.  I understand…  But all things considered, I am still pretty damn proud of myself.  I now have a completely hate-hate relationship with food.  I hate the way it feels in my mouth, the way it never seems to leave me feeling satiated, and the way I have to avoid so much of it.  While I do like the fact that I now know what it’s like to actually feel hungry, and not just eat because I think I should, or because I am bored or stressed, what good does that do me when I don’t get the satisfaction of feeling fulfilled after I do eat?  Yes, of course it is still worth it in the long run because I will feel better, finally be able to lose weight, have more energy, see alleviation, if not complete dissipation of my bipolar symptoms, blah blah blah, yadda yadda yadda…  But damn that pizza was good.  While I know gluten-free crust recipes are out there, without milk and soy cheese, etc., I don’t have much hope of ever been able to really enjoy a pizza again.  Bad, bad juju that 2.5 slices of pizza…  But it damn sure was tasty!

Side note: If you’re ever screwed like me, or know of someone who is, Tofutti “Better Than Sour Cream” and “Better Than Cream Cheese” are actually quite tasty.  Sour cream has to be my favorite condiment and I was struggling without it, but on a baked potato, I actually think it is better than the real thing!  Also, Bob’s Red Mill Brownies are DIVINE.  Texture is remarkably similar to that of wheat-flour brownies and the taste is FABULOUS!  Love them.        

I’m so bad…

   I just had a slice of cheese.  It was regular, Kraft Sharp Cheddar, but it was the best damn cheese I’ve ever tasted, hands down.  OMG it was DIVINE.  *sigh*  I think until I know for sure that I am truly allergic to milk protein as well, I may allow myself a few slips here and there.  Not even one per day, but maybe cheese or yogurt 2-3 times per week.  If it comes back that I am also intolerant of milk protein (caseine), then I will steer clear 100%. 

     Damn that cheese was good!

     And BTW, the syrups at Starbuck’s ARE gluten-free, but some flavors contain nuts, which kicks them out of the running for others will allergies.  BUT WOOT for me ’cause now I can keep having Starbuck’s and the stuff that’s left as “safe” for me is cheaper than those damn addicting Frappuccino thingies anyway!

Conclusive

       We ordered one more test to tell us FOR SURE if I have merely a wheat sensitivity or full-blown Celiac Disease.  It will also tell me if I am a genetic carrier (meaning the boys may have gotten the same allele and we should test them periodically), and if I am also allergic to milk.  Since caseine is similar in structure to gluten, both are usually eliminated from the diet, but I am struggling so much right now that even milk and cheese would make it about a bajillion times easier to stick to this diet!  It was another $400.00, but for one thing, if my babies are at risk, it would be helpful to know.  I’d hate for them to go through this for years and years if I can avoid it.  For another, the milk thing really is a big deal for me.  After bread and pasta, cheese is my favorite food.  I put it on every thing – parmesan cheese on salad and spaghetti, I melt it over veggies, and use it in sauces…  If I could have cheese again, I might just make it without cheating on this damn diet. 

          I know it’s stupid to “sneak” my forbiddin foods.  They make me feel horrible, they create more or enlarge existing holes in my digestive tract, and eventually, it could just kill me.  It’s not like sneaking a twinkie on Weight Watchers.  I get that.  Logic doesn’t always help, though.  To know conclusively exactly how bad it is and if my babies are at risk would help me stick to it.  If they are at risk, what kind of example would I be setting if I had cake or regular pasta once a week? 

         *sigh*  This test takes 3-6 weeks to get results.  It’s going to be a long 2 months, but I can do it if I just keep thinking that the boys might be susceptible, too.  I’m doing it because the babies need a mom and because if I have the gene, they might, and it’s my job to protect them, too.

I am NOT amused.

      It’s a bug day, for shizzle.  Bear woke up this morning a little after 7.  Blood everywhere.  Apparently another thing he gets from me is hellacious nosebleeds.  I swear, when that kid gets a nosebleed, it looks like a crime scene.  Anyway, DH cleaned him up and put him back to bed while Mega came and slept in our bed since Bear bled all over his comforter and pillow.  DH went off to work, and we all snuggled back into bed…

      Not long after that, Bear starts crying again, so we all get up and get breakfast.  DH called and in the short time we were on the phone, Bear gave himself another horrific nosebleed.  You’d think he’d figure it out – “Fingers in the nose = pain = bloody mess.”  Yeah, not so much with Bear.  So, we get cleaned up again and sit down to lunch before going to the commissary.

          The boys are buckled in ready to go, and the car just clicks at me.  The battery is dead.  Again.  Like, this is the second time in just over 2 months.  It’s sat for all of…  a week?  Lame.  DH thinks we don’t need a new battery, but the dealership and I think we do.  Last time, it was towed because DH was deployed and I didn’t know what was wrong.  The dealership said it took a while for them to get the battery to hold a charge and they recommended getting it replaced.  We’ll see what happens there…  Maybe it will take the boys and I being stranded somewhere other than the house before DH agrees to getting a new battery.

          I can’t eat.  Well, I can, but I won’t.  I have no interest in any of the foods I can safely consume.  None.  I love raw carrots.  With ranch dressing.  I love chicken breasts.  With marinade.  I know it’s an adjustment and when I get hungry enough, I will eat raw carrots without ranch dressing, but that’s not the point.  The point is that I have always had a love-hate relationship with food.  I loved to eat, but hated the way it made me feel and the weight it packed on.  I loved to cook and try new things, too.  Now…  I hate cooking.  I just think, “Why bother?  It’s not like I can eat that.”  Even when I find an alternative to a recipe I have always enjoyed, the textures and/or tastes are different, and for me, that’s worse than not being able to eat it at all.  For instance, ice cream.  Let’s say you love you some ice cream – the cool, creamy, richness of it.  Now you try soy ice cream and it’s slightly gritty, not nearly as creamy, and less rich.  Would you rather remember the ice cream you loved so much, or the soy version?  I’d rather remember the real stuff.  I’m afraid that rather than try the alternatives or even completely new foods and recipes, I will just continue to hate eating (which is what I do right now).

     I’ve starved myself in the past – to fit into clothes I wanted to wear, to lose a few pounds last minute, or just because I was too stressed to eat.  I know I can and probably will do it again.  After about 2 days, the ache in your stomach goes away.  You get used to being dizzy and you figure out how to eat just enoughto keep from keeling over.  It’s not a great thing, I know.  Believe me, I know.  I’ve seen what it does to my skin, hair, nails, teeth…  and I know if it’s that bad on the outside, it’s got to be hell on my insides, too.  But right now…  I’d rather not eat.  If I have to have one more plate of salad (without my favorite dressing) and meat, I might just stab myself with the damn salad fork.  If I have to look at another label and read every single ingredient, and then check the carb content, I might just go postal.  If I have to cook one more meal where even one food item is different, I might just jump into the boiling pot.  This sucks…