Why I May Never Be Tested for Celiac

I got wind of a test that could detect Celiac without a person needing gluten in their system. However, I have not been able to confirm this, which is disappointing. The very, very last thing I want to do is go on a gluten-challenge, ingesting loads of something I’m pretty sure has spent my whole life trying to kill me. Now that I have more information, I don’t believe I will.

Here’s myCeliac tale: I have had Hashimoto’s disease, a thyroid disorder, since I was 9. I developed endometriosis sometime in my teen years and it was discovered in my twenties. Also discovered in my twenties was the fact that my bones are deteriorating at a very fast rate. All awesome news! (I hope you read sarcasm well). All of the doctors I went to for diagnosis and management of these issues were nice people and decent doctors, but not one bothered to ask why I kept developing problems. In their minds, thyroid and uterus and bones were all separate issues that needed to be medicated into submission. How could those random organs be related? Holistic approaches in medicine? What?

Add to this I was often mistaken for a bulimic in school because of my ability to eat anything and race to the bathroom within five minutes to expel it from my system. Mind you, I didn’t do it on purpose. Intestinal issues also found me sometime in my teen years, so I got another drug: Prevacid.

By the time Wren was diagnosed with Celiac, every doctor, nutritionist, naturopath, person in the grocery store who knew there was a genetic connection pointed to me. It makes pretty logical sense seeing how every one of the above issues are calling cards for Celiac. Wren and I don’t half-way do anything; if we’re going to have health problems, we burn down the whole place. No silent symptoms for us.

Dennis was tested first basically because I told him he was going to be, and he picks his battles. My reason was sound: I would happily live like a Celiac because I felt so much stinking better! Cramps from endometriosis? No, though having children probably helped that one. Thyroid out of whack? No, and my medication has not needed to be tampered with since the gluten-free diet. Bone deterioration? I haven’t had them tested yet, but I haven’t broken any hips. Frequent bulimic-like potty episodes? Way, way down from what they were. And now if food makes me sick, I know it’s because I ate rice, or slipped in some butter, or I ate too many grapes in one sitting (like two pounds). I am not reactive to every food I put in my body because I’m not eating gluten, and my gut is starting to heal. I don’t cry because I can’t sit through an entire movie due to my constant need to be sick. I go weeks without potty episodes (then I get cocky and eat two pounds of grapes). I don’t need a test result to prove gluten made me feel like death

Dennis was living gluten-free at home after Wren was diagnosed, but he would indulge at work away from Wren if the opportunity presented itself. I told him to get tested because that was a very bad idea if he had Celiac, and we needed to know. I think he agreed because he thought he’d be able to eat burritos at Chuy’s in peace once he offered tangible evidence that he was in the clear.

Except he wasn’t in the clear. He has Celiac. It will be a year Sunday since he was diagnosed.

I know enough about science or math or stats or something to know that him having Celiac doesn’t mean I don’t. One doesn’t change the other. However, I still couldn’t get tested because I was nursing Sammy, and he had already started displaying Celiac-like symptoms. Gluten travels through breast milk. Besides, what does it matter? I want to live this way. I take all the precautions with cross-contamination as the rest of my family.

Only, a strange thing started happening after Dennis got diagnosed. People I knew started grabbing me on the sly making me aware of where the gluten-filled snacks were “just in case you can slip away from the family and grab one”. When I continued my diligence in not being cross-contaminated, I received strange looks. The confusion apparently stems from the fact that I haven’t been “officially” diagnosed. Being healthy without the junk in my body is apparently not proof positive. Invasive medical procedures must be performed!

I started to cave, mainly because I wanted to stop being viewed as eccentric and just viewed as someone trying to manage my health. But then I started research on Celiac testing. An article I found from a company trying to offer a better Celiac test helped confirm my decision to not get tested. Here’s the link, and here’s the jest of it if you don’t want to read the whole thing: The initial blood test that leads doctors to decide whether or not to use endoscopy to further diagnose Celiac is wrong about 70% OF THE TIME!

The long and short of it is the blood test really only confirms Celiac if it has majorly destroyed your gut. You can have Celiac, a fairly hanging in there gut, and a liver that’s about to pass out due to Celiac, and you will not get enough “indicators” for the doctor to refer you for further testing. Or your mind could be attacked. Or your joints. All common with Celiac. That’s why the endoscopy is the “gold standard”. Yeah, when your fall back choice has a 70% failure rate, you need a gold standard. But even the gold standard can be inaccurate if your gut is not leveled enough or if your endoscoper(is that a word?) doesn’t know how to find Celiac. If your gut is not the primary target, you could still be misdiagnosed. Too bad for all those people who have non-alcohol related cirrhosis, multiple sclerosis, rheumatoid arthritis, and a whole other host of issues related to untreated Celiac. Their bodies weren’t attacked properly for the test, and we are just now coming up with new ways to test them.

The blood test diagnoses very accurately the Wrens of the world whose guts looked like a place an atomic bomb landed twice before a tsunami came in to smash the rest. Wren had, and still has to some extent, damage to many organs in her body due to Celiac, but her gut was undeniably leveled. Wren got a gold star on the blood test! Dennis had to have the endoscopy for confirmation, and even the GI said he would not have referred D for an endoscopy based on his blood work. He would have been one of the 70%. Thankfully, we listened to the chiropractor who did refer him after seeing his blood test. After D was diagnosed, the GI basically said, “my bad”. I think he really did feel pretty bad.

So, no, I am not shoving loads of poison into my temple with the express purpose of destroying my intestinal lining enough to get the gold star on the blood test so I can have a tube rammed down my throat to be told what God has given me the sense to figure out on my own: I don't react well to gluten. I’m somewhat competitive (actually I’m not, I’m too lazy for that), but I am not competing for the Dumbest Person on the Planet Award. However, I do HIGHLY, HIGHLY recommend you get tested if: you are still eating gluten and suspect you might have Celiac (keep eating the gluten for now, push for the endoscopy if there are any indicators in your blood work, and find someone who knows what they’re doing); you think you have Celiac and the idea of avoiding gluten or even crumbs of gluten seems impossible to you without a test result (follow same parenthesis rules from above); there is a family history, even if you don’t have symptoms (eat the gluten, follow rules from above). Also, consider Cyrex, the link above, for testing. The test looks to be pretty sensitive, though it’s still in the early stages, and I don’t know what insurance will have to say when you want Cyrex instead. I would go with Cyrex if I was going to do this (but I'm not because it looks like you still have to gluten up for the test) and just ignore my insurance company  My thoughts on insurance companies are for a whole different day.

As for me, I'm going to embrace the idea that others think I'm an eccentric weirdo. I will continue living life as a Celiac sans the piece of paper as proof.  I may also stop showering and start wearing long evening gown gloves all the time. Now that I'm not stuck in the bathroom for hours a day, I have time to really mess with people.

On A Wednesday

I never doubted that the hardest part of having kids for me was going to be letting go. As they grow older and want to do more on their own, I simultaneously rejoice and internally weep. What I didn’t realize was how Celiac was going to cause hiccups in the growth process, not because we don’t want to let them have some autonomy or because they don’t want it, but because in certain situations it’s almost impossible.


When Wren was two and suspicions of Celiac were lurking, we put her on a gluten-free diet while waiting for the test results to come back. At the HOA pool on a summer day, Wren’s gluten-free snacks were prepared for when she became hungry. She walked around the pool with her friend while I held Sammy and chatted with her friend’s mom. Then it happened: both of us saw the girls squatting to the ground, and before I could stop her, Wren put Goldfish crackers in her mouth. I sprinted to her and attempted to fish the crackers out of her mouth, but it was too late. Her stomach was distended within minutes, and she fought stomach aches for the next several days. Celiac was confirmed for me that day, as well as the fact that this was our new reality. Until she understood, she would live in arms distance of someone who did. I attached myself to Wren so hard after that I was fairly convinced even when the time came I’d never be able to let go.

But on Wednesday I had a chance to prove myself wrong. We were at the park with the usual neighborhood crew when Sammy decided he wanted to swing. Wren didn’t. Wren knows not to eat food off the ground now for many reasons, but I am still a little weird about being too far away from her. What if someone offers her food? What if she thinks something is gluten-free that isn’t? However, I left her playing in the sand with her friend and told her I would be a little ways away swinging Sammy. I reminded her not to eat anything and she said, “I won’t, mom.” It was a polite response, but I can tell by the time she turns five she’s going to be sick of hearing the reminder.

When a butterfly net was added to the equation, the situation took a turn. A small garden area with tons of butterflies is attached to the park. The kids started venturing that way with the other little girl’s mom accompanying them. This is the park rhythm. It’s a village mentality with everyone looking out for each other’s children. It’s nice, except I’m usually the one looking out for my kids and someone else’s by my own choice. I held back and waited. I took a breath and slowly released it. Wren wondered into the garden armed with a miniature net ready to look at butterflies way more than catch them.

As I stood making idle conversation with the mom of the child swinging next to Sammy, I came to the realization that my instincts were almost never wrong with my kids, and in that moment, my instinct was not to run to the garden with Sammy screaming after being forced to leave the swing to watch Wren do something I could catch glimpses of her doing from where I stood. True, if she had picked something up off the ground to eat, there’s no way I would have been able to dash over there and swat it out of her hand in time. But with all the squirrels and birds in the garden, stray food doesn’t make it long. And though the mom supervising speaks Russian with English as her emerging language, I’ve known her for over a year. We’ve pieced together enough words for her to know not to feed Wren. More than anything giving me comfort though was my trust in Wren. She knows. She’s had to learn young and she will always have to be aware. And she understands.

I watched wisps of purple float past the black gates of the garden as she ran after butterflies. Her laughter was recognizable from a football field length way. When it was time to leave the park, I went to retrieve her, and she was covered in glee from head to toe. She was hunting butterflies so she could talk to them with her friend, and no one was pestering her about anything. She was the happiest kid ever.


This doesn’t solve our issues with cross-contamination. It doesn’t fix everything. But for a Wednesday, it was pretty good.

TMI

Visiting the naturopath has been awesome. I feel like it is one of the major steps in Wren’s healing that has offered tangible results. I like to chart progress, so this has made me happy. Liver issues, adrenal problems, nervous system malfunction, and all kinds of other problems have started to fade when her body is supported by the right supplements. She is actually taking a ton less supplements now than she was 12 weeks ago, and her body is learning to hold its own. Exciting stuff.


One side effect of the machine that reads Wren’s body to tell us pretty much everything about it is the information you find out that is relevant but not alarming, information you probably wouldn’t know otherwise, but it’d still be there. It’s good to know, but then it’s in your brain and it’s hard to have it not in your brain anymore. A piece of that information we found out today: something is up with Wren’s chromosome 13. This chromosome carries probably between 300-700 genes, so anything minor could have shifted to cause an alarm to sound and let us know. However, chromosome 13 contains BRCA2 or the early on-set breast cancer gene. This is among hundreds of other genes. So does this mean Wren is predisposed for breast cancer? No. Does it mean this even has anything to do with breast cancer? No. Is it good that my grandmother had breast cancer and a mastectomy and that was the topic of discussion today after finding out this information? Probably not.

Here’s the good news: the naturopath imprinted a homeopathic treatment to basically tell Wren’s body to shut this chromosome 13 crap down. She literally said, “No big deal, we’re just going to shut it down. We turn it off and she’s good to go. We can tell her body what to do.” Hear that medical community? Get on board with holistic care!!! Does this work on adults when you don’t catch this until later in life? I don’t know but should probably ask. This was not an issue for Wren six weeks ago. Chromosome 13 was just chillin’ a few weeks back, so we know we jumped on this early.

My fear for Wren pretty much dissipated with the whole, “we got this chromosome, it’s going down!” conversation. I’ve seen this woman work homeopathic magic that has taken down a host of problems since June. I almost feel a little sorry for whatever crazy junk is trying to mess with the chromosome because Brenda is going to hunt it down like a hungry dog. Almost. Fear of breast cancer for myself didn’t really arise. I started internally freaking out at having to tell my sister. Brenda implied in a very don’t-freak-out way that if this was a BRCA2 problem, it more than likely did not just jump over a couple of generations and hit Wren. Fabulous.

And here’s where I wonder if TMI can be a little much sometimes. I am super grateful for all the information I can get. We need it since Celiac is a gateway disease and we need to kick all the potential visitors to the curb before they get through the gate. It’s been a blessing to have so much information. However, it was a different story trying to explain this to my sister. It was a lot of me saying, “Don’t freak out” and “But I thought you should know” and “Don’t freak out, it probably means nothing, but I still had to tell you.” And she really wasn't freaking out.  Still, how do you process that information? Maybe you have the BRCA2 gene. Maybe you don’t. Maybe Nanny’s cancer was a fluke. Maybe it wasn’t. The fun part of the conversation (fun may not be the perfect word because talk about cancer is never really fun, but this was a less perplexing part of the conversation) was discussing what boobs we would get if ours had to be lopped off. Amy chose practical. I chose as close to non-existent as possible minus the nipples. No high beaming, no bra ever, I’m a happy woman. My boobs have never brought the boys to the yard and are just present enough to cause me to have to wear a bra, which is agitating. I’m glad they’re small, but I hate that I have to buy bras. Once they’re through feeding my kids, I don’t see me having any sentimental attachment to them. Now my butt, that’s a different story.

I pray we don’t ever really have to deal with this, and I hate that me having too much information meant having to share it with my sister so she can obsess over the what-does-it-all mean part of it. And I hate that cancer was a normal idea for me at such a young age. When breast cancer came up, all I could think of was when my Nanny Morris would somehow make it to the grocery store without her fake, jellyfish like bra insert (it was the 1980s), realize it at the check-out counter and scream, “I left my damn tit at home again!” I actually don’t remember a time when my Nanny had two real boobs, and I never remember a time when she actually remembered to wear the “damn tit” to the grocery store.

I guess it’s good to have this information if God gives you the perspective to deal with it. He is really helping me in that department. Every day I remember I am here for His purpose for a set amount of time, and I don’t control that. I can’t control how long I’m here for me or my family, but I do try to take care of us so the quality of the time I’m here is good. Besides, with my lack of coordination and near legal blindness, I’m probably much more at risk for getting hit by oncoming traffic.

Its’ not exactly like forgetting a birthday, but…

Further evidence I have lost a considerable amount of brain cells came today at Sammy’s vaccine appointment. It actually ended up being Sammy’s 20-month well baby check-up. But wait, there aren’t 20-month well baby check-ups are there? Actually, no, not unless your mother has actively endangered your health through negligence for the last eight months.


When the nurse told Sammy to step onto the scale, I reminded her he was just coming in for a vaccine.

“We do them one at a time. I don’t like to overwhelm their systems.”

“He’ll get his vaccine after the doctor sees him.”

“But he isn’t here to see the doctor.”

“He’s seeing the doctor.”

Alrighty then. She checked his height and head measurement and went on her merry way.

When our pediatrician entered the room, she stared me down and said, “So why are we skipping well baby appointments?”

These people are thoroughly confused today, I thought.

“His next well baby is in December when he turns two.”

“His next well baby was supposed to be at 15 months, then 18 months. We haven’t seen him since he turned one.”

What?!?

“Wait, we’ve been in here every month since April getting vaccines.”

“I know. I’m not sure how this wasn’t caught until now.”

Then it hit me: each nurse at the last two appointments asked if Sammy was healthy and if he had seen the doctor recently. My answer: yes, at his last well-baby. I wasn’t lying, they didn’t check the medical file since I must have looked somewhat sane that day and that was that.

At this point, I started punting. If Sam was my first child, I would have started crying, claiming sleep deprivation and ignorance and lamenting on how hard it is for first time moms. But evidence to disprove my first time mom status was sitting next to me: Wren.

So I started looking for other outs. God forgive me, but I started attempting to throw my husband under the fast approaching bus.

“Well,” I said in a hushed tone, “Dennis took him to the one-year well baby. I had just started my library job and worked that day.”

Uh, except Dennis wouldn’t have made the 15 month appointment because he never makes advance appointments which is why he only gets his teeth cleaned after he’s received three reminder letters, a phone call, and I just call and make his appointment myself. The doctor didn’t know that, but once I realized it, I couldn’t commit to misleading her into putting this on D. I shifted gears.

“Actually, the doctor who checked Sammy must not have specified when the next appointment was.” There are two doctors and two nurse practitioners in this office. I like all but one, and I was hoping it was the one I didn’t like who was about to get busted(I know, this was not my best hour).

After looking through her notes the pediatrician said, “I saw Sammy at his one year. And I wrote in my notes that I told his parent I needed to see him in three months.”

That did not work out the way I hoped.

“Miscommunication. Weird.”

Anyway, it all turned out well despite my negligence and overall forgetting kids are supposed to be stared at and probed to make sure they are developing properly. Sammy is growing(he’s tall and skinny, just another way he’s like dad), he’s developing properly in every area, and our pediatrician thinks the diet we live on is helping him thrive.

“I can say, he never gets sick. We would have caught this if the little guy had caught a cold, but he just never needs to see a doctor because he never gets sick,” she said.

Not wanting to be misleading yet again I reminded her, “He did kind of get sick the one time.”

She checked her file.

“Yeah, there was that.”

Awkward silence.

“So, bring him to the two-year well baby.”

“For sure. We’ve had that one planned forever.”