30 September 2013

In lieu of flours.

Get it? Funny play on words? I know, I know.

So the family is in a tizzy. Let me just catch you up. This may be a tad detailed, as this is a family blog and often serves as a reference later on. Best to write it all down.

My family is one of many auto-immune disorders. I married into a family of auto-immune disorders. Our potential for auto-immune children is greater than most. In the past few weeks, two more of Andrew's immediate family members were diagnosed with Celiac Disease. This shouldn't be confused with the gluten-free fad that is sweeping the nation.

Lucy was tested for Celiac when she was about a year old due to her inability to gain weight and her very big belly. Andrew was tested at the same time and came up negative. As his dad tested positive for Celiac 20+ years ago, we have been attentive with all of the kids where this is concerned. A couple of weeks ago, Andrew's brother and niece were diagnosed with "actual Celiac disease," so we're now moving into "hyper-vigilant" stage.

About 6 months ago I started doing research on my own health stuff, which includes a vast and varied history of auto-immune issues. Mostly they're annoying but nothing for which I've had to alter my lifestyle, until the births of Claire and the twins. It seems like a switch was flipped (which is very common for AI issues) at some point and my body went a little whacky. Thankfully, the medical professionals I've seen have been pretty relaxed and only a few of them suggested crazy treatments. I opted to start doing research on my own and it turns out that gluten issues are very common for Ulcerative Colitis patients. When I developed chronic mouth ulcers, iron-deficiency anemia, dishydrosis and erythema nodosum, I just added them to my incredibly long list of "that's probably related to whatever I've got" and moved on. The mouth ulcers are the worst part because they really do affect everything I do. Horrid. The other stuff, I can live with. The problem with auto-immune disorders is that sometimes you know what you've got, sometimes you never find out and sometimes it's all just a symptom of something else. Does that seem crazy or what?!

I do know that I can't live my life, and my children's childhoods, searching for the right diagnosis. I'm too freaking vibrant to be a patient and I don't want my kids to remember Mommy as being "sick." Mommy's too fun for that. I think the UC is a symptom of something else, but I may never know what that is. I don't need a name for what's wrong - I just need to enjoy my life. I have frequent bloodwork and scans for complications of the UC and that seems okay.

Oh, so, gluten and UC. Research shows that they're closely interrelated, and when I googled "gluten intolerance symptoms," I had 4/5 of them. So I went off gluten. Six weeks later I was sent for a celiac panel by a stupid doctor who didn't know I needed to be eating gluten to return the accurate results. My celiac bloodwork showed me as being "borderline" and my MD said that a gluten-free diet was necessary. He gave me the option of going back to gluten for a few months and redrawing the numbers, but felt that due to my symptoms the numbers would be higher and he'd just suggest going gluten-free anyway. So I opted to skip the second round of testing and continue to try to get the gluten out of my system. It's been about 4 months now and removing gluten has been life-changing. My mouth ulcers went away, my UC presents as not present at all, my energy is good, my whacky skin disorders are gone and my mood is more even as long as I'm not eating gluten. I believe that they refer to my specific gluten issue as "NCGI," which is "non-celiac gluten intolerance," an issue that I've read affects about 15% of the population. They refer to it as non-celiac because without a biopsy there is really no way to know if it's Celiac, but I'm not willing to eat gluten long enough to find out. It's a moot point anyway, because if it was, it's healing up and I'm moving on, right? If a gluten-free diet continues to heal me, I should only need scans every couple years for the UC and that may heal over time, as well.

So we know gluten intolerance runs in both sides of the family, and when a first or second-degree relative has Celiac it's suggested that the entire family should be tested and stay vigilant throughout their entire lives. For the kids, we have the luxury of starting very early. They'll be tested this week, along with food allergy testing for Mo and another round of iron testing for Claire. She's also anemic, so we're working on that as well. The boys will be tested for a baseline panel, but we don't expect to see much, if anything, from their bloodwork. Andrew is also being tested, as it should be done about every five years and he deals with migraines and fatigue that started developing about 3 or 4 years ago.

And that's where we are. A real nail-biter, to be sure! I'm sure I'll have a fantastic "when we took five kids to have bloodwork done" post for you coming up very soon. ;-)

1 comment:

Scottish Twins said...

I have Crohn's and am also sensitive to gluten. Coincidentally, I'm actually starting the SCD diet tomorrow to help heal my Crohn's and my oldest son is going on it too for his food allergies. Grains and sugar have always been horrible for my immune system and this diet seems to help. It might be worth looking into for your UC.

Two of my sisters and one aunt also have Celiac's and a whole bunch of other family members have different auto-immune issues. It's interesting that all of us seem to have problems with gluten, despite the differences in diagnoses. It sounds like your family is similar.

Good luck with your testing. I'll pray for your babies.