I just realized…
…that I never came back and updated with Grady’s test result information after I posted Part One and Part Two of our health issues. If you haven’t read those yet, you might want to check those posts out first. I updated Facebook, but only my personal family and friends could see that. I felt like I had done my job, but the truth is I have this space to talk about what is going on with us and hopefully it will some day help someone else going through the same thing.
Grady’s test results were great! He doesn’t have Cystic Fibrosis or a Thyroid Disorder. What he does have? Celiac Disease – YAY! And by “YAY!” I really mean YAY! I’ve suspected that he had an allergy to gluten for the past two years. When he ate too much gluten, he would have violent diarrhea and vomiting. When he didn’t eat gluten, he was perfectly fine. The sad thing is, we’ve fed him little bits of gluten here and there quite often for the past two years. It was always way worse when family was in town or we were visiting family. Grandparents have a terrible habit of feeding their grandchildren absolute junk even when the parents don’t approve. What’s WITH that, grandparents? All the grandparents, not just our grandparents. Grandparent visits always ended in my having to deal with fun diarrhea and puke. My favorite bodily fluids for sure. They’re so delicious. *gag*
The thing about Celiac Disease is that a small amount of gluten, even a trace amount of gluten from cross contamination, can make the sufferer violently ill. It can also affect them in more mild ways. Grady has often complained of headaches and stomach aches. I kind of brushed them off as melodrama, but now I know he was genuinely suffering.
It makes my heart crumple for him.
His rectal prolapse a couple, errrr . . . few weeks ago has caused him to be terrified to poop on the toilet. He used to poop 3-4 times a day (hello, Celiac Disease!) but now he poops once every 4-5 days. The past two times he has pooped, it has been in his pants, in his brand new Spider-Man underwear from Target. If you know Grady, you know that it’s a really, really big deal for him to have pooped in his Target Spider-Man underwear. He is horrified at the prospect of sitting on the toilet because he’s afraid that his butthole is going to fall out again. He is on an insane regimen of Probiotics, SmartyPants Kids Fiber gummies, Yummi Bears Multi-Vitamin, and a gluten-free fiber drink. That all still isn’t enough to flush him out, or hasn’t been until recently. Three days ago, he pooped himself for the first time and I had to throw his favorite undies out.
When he pooped his pants tonight, he was headed for the toilet but too afraid to sit on it, so he just pooped in his pants, crying the whole time. I feel like I have to note that he has been potty trained since before he turned two – that’s a year and a half. He knows where he’s supposed to poop but because of the rectal prolapse, he would rather go in his new underwear than in the toilet.
Once I got him cleaned up tonight, I pulled him onto my lap and cuddled with him, then explained Celiac Disease to him in a way a three year old could understand, and reassured him that if he stays away from gluten, he will never experience Rectal Prolapse again. I told him how important it is for him to poop on the toilet every, single day, and that it isn’t going to hurt anymore. He promised me that he would try to sit on the toilet every day. We bought a wooden step stool from Target and a little toilet seat that goes on top of the toilet that fits his butt better, and he still doesn’t want to try to poop. Hopefully our little pep talk tonight will help.
It breaks my heart that we’re dealing with this. I hate that it could have all been prevented. How, you might ask? More on that later. I promise.
In the meantime, please pass along your thoughts and prayers for our little guy. I still feel like some of our family members think we’re overreacting. One family member told me they hope I didn’t go overboard and not allow Grady to eat things that were cooked on the same surface as gluten-containing foods. I feel like despite the fact that certain family members know Celiac can be controlled with a strict diet, that it’s “too hard”. I don’t even know who I can entrust Grady to anymore. The field became much more narrow. I had to turn down a press trip for November today because the one person I feel I can trust to really care for Grady the way that he needs to be cared for (my husband), can’t get the time off of work.
Where Celiac Disease is concerned, there is no such thing as overreacting. There is no such thing as “too hard” where your child’s health comes in to play. I would feed the entire family dry protein powder and monkey poop if it meant that Grady would stay healthy.
There is no such thing as too hard where your child’s health is concerned. NO. SUCH. THING.
And for someone to tell me that it’s too hard or to not overreact, really pisses me off. It pisses me off even more when a close, immediate family member has previously been diagnosed with Celiac Disease and withheld that information from us while continuing to give me side eye every time I said gluten makes Grady sick.
So for now, I’m living in my happy, gluten-free world of absolute healthiness and I’m doing whatever I can to make sure he doesn’t come into contact with a microgram of gluten.