Celiac, you’re breaking my heart.

I’m not sure what I’m running on these days. Is it possible to run on pure stress and get by ok?
If so, that’s me.
Add to our plate of Asperger’s, T1D we are now seriously looking into the possibility of Celiac Disease as the reason behind Bean’s GI issues.
Seriously.

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It has been mentioned in a previous post that Bean is gluten and casein free. Or at least, she was until a few weeks ago. She is scheduled for a biopsy to determine if she has Celiac, so > in order to have accurate results > we must put her on a “gluten challenge“. Essentially making sure that there is damage done, “enough damage” to be able to find atrophied villi in her small intestine. It is as if, or maybe ‘exactly’, like we are starving her from nutrition in order to have a clear answer of the problem so that we no longer starve her from nutrition anymore. Say that 5 times fast.

It takes an average of 9 to 11 years to be diagnosed as someone with Celiac.

I am not kidding. That’s a real statistic.

9 to 11 years to get diagnosed.

People with Celiac are said to be diagnosed with everything under the sun but Celiac – until – after about a decade when it seems like that is the only thing left to try out. And, after about that long people with Celiac have sometimes caused so much damage to their small intestines that they are prone to a number of other diseases and ailments, including – but not limited to – osteoporosis, infertility and cancer. And, in the worst cases (cases that go undiagnosed or untreated for too long), it is possible that people can die from the other ailments/diseases that have come about from having Celiac disease. Yes, Celiac can lead to death if left untreated. Morbid, but true.

Bean has been showing symptoms, now that I know what the symptoms are, for as long as I can remember. From colic, projectile vomiting and short stature (in the lower 5th percentile) as a baby to severe constipation, dark blueish circles under her eyes, poor weight gain, enamel damage to her adult teeth and weak bones (elbow dislocated twice, and shattered once) as a child.

I’ll admit that in this time I have allowed her to have dairy again. Firstly because I’m not positive that she is actually casein intolerant, secondly – because if you are already going to suffer, you might as well be eating yummy food while you do it.

Part of the reason I am suspicious of her casein intolerance is because of the Hemocode test that she underwent. In the foods that she was tolerant of, there was the word: casein. Now I knew that since Bean had not been consuming dairy for quite a while it might have given us a false negative result since the protein was not in her system for the test to find it either tolerant or intolerant, but in the ‘Severely Intolerant’ list, there were things like ‘kamut’ and ‘rye’, of which I was pretty sure she had never consumed. There is also the controversy over whether these IgG tests are actually accurate or simply a sham. At that point in our life, with everything we had been through with Bean,, in as far as GI issues were concerned, we felt we had to take the $420.00 chance that it wasn’t a sham and that it might unveil some answers..

If Bean does prove to be Celiac, and dairy doesn’t affect her negatively, I will no longer wonder if i wasted $420 that day. But I will wish I had known more about celiac then so that I might have taken those results to mean more then just ‘intolerance’ (which, to be honest, at the time I felt wasn’t *that* serious an issue, whether true or not).

With all that said, it wasn’t till we were sitting in the emergency department with Bear the night he was diagnosed with T1D and they asked me almost immediately if any of our other children had celiac that I had given it much other thought. And in fact, to be completely honest, it wasn’t till their next question “…or any other autoimmune disease?” that I started to connect the dots. Yes, Pups has Guttate Psoriasis I said. And then, as if a light bulb went on above my head like some cartoon character: “and actually Bean is highly suspected of Celiac, but she’s had blood taken and the results were negative, even with all the other symptoms present”. Oh, said the doctor as she jotted it down on her piece of paper. And then: “we will have Bear tested for celiac since her has T1D. The two are highly correlated. It doesn’t mean he has it, but we will check as a precaution.” And now it was my turn: “oh.” I responded, feeling a brief moment of both “ah hah!’ and “oh fuck” when re-thinking celiac and what it might mean to our family.

So I began to research, as I do. I found that yes, T1D and Celiac are very similar autoimmune disorders. They both carry the genetic markers HLA DQ2 and DQ8. If you have celiac, you should be tested for T1D, and the same is true if you have T1D > you should be tested for celiac. There was even some evidence to suggest that if you found out you had celiac early enough and treated it properly and immediately – you might even be able to avoid developing T1D in the future.

So here we were, knowing (by internet research ‘chance’, and not by doctor related information given) that the autoimmune disorder that Pups has (Guttate Psoriasis) can be linked to Celiac, and that Bean’s suspected Celiac Disease, or ‘CD’, (which, we were now aware of because of the Dr in emerg) is actually an autoimmune disorder, and of course that Bear’s T1D is also an autoimmune disorder and can also be linked to Celiac in many cases. There was also a suspected, but unproven, link between people with an ASD and/or ADHD and Celiac. The symptoms related with Celiac were all too evident in Bean. From her serious GI issues and positive reaction to a mostly gluten free diet right down to her AS and ADHD diagnoses. Immediately I decided that something more had to be done to see if she had Celiac Disease. Another blood test (already in the works from before Bear’s diagnosis) revealed yet another negative result. But as Bear now had T1D, and blood tests with Celiac have proven to be unreliable in the past in correlation with false negatives, Bean’s paediatrician and I decided it had to be time for a proper test, a biopsy. As mentioned, even this test would appear as a false negative if not enough gluten was present in her system to do actual damage to her villi. So on to the gluten challenge we went. And that is when we started to see things like obvious defects in her teeth enamel and dark blueish circles under her eyes. She became lethargic and moody (more than usual). She was absolutely and obviously very ill.

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So…more research later, I came upon a celiac home test kit. What the!?

That seems way too easy.

Since it was proven to be as accurate as the blood tests taken in hospital (and approved by Health Canada), and seeing as Bean had now been on her gluten challenge for 4 weeks, I decided to try it out. Maybe, I hoped, it would show a positive result and I could use that result to push Bean’s biopsy date up – especially as she was already so sick because of the gluten.

I did the test.

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Results used in a study to see if nurses could judge the positive tests correctly. All these test were positive, the nurses only thought the darkest result line showed a positive result.

Here was our celiac home test result (which, incidentally, was much clearer at the pharmacy when we brought it in to have it checked by a pharmacist):

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Do you see what I see? (<-Why do I always add a tune to that?)

The line is SO faint, it is practically not there.

Except that it is.

The hub and I thought that what we were seeing was just the test strip’s positive line reacting to any liquid wetting it. But still, the pamphlet specifically said “no matter how faint”. Could it actually mean *this* faint!? I had to know. The pharmacist assured us that this was a positive test. Saying that absolutely NO LINE, nothing, would appear if it wasn’t detecting the celiac disease.

I am of two minds about this. Wishing that Bean won’t have Celiac (of course), while wishing that her test is positive because of knowing that she very likely does > and hoping for a final and absolute confirmation.

Celiac is another challenge to add to our plate, to be sure. An expensive, vague, and chronic disease type of challenge that will undoubtedly lead to yet more grey hairs on this overwhelmed mumma’s head. But as only a biopsy will really absolutely truly give us confirmation about whether Bean in fact does have Celiac (and only if that biopsy is positive, because a negative biopsy actually doesn’t rule out celiac! I shit you not) then we must trudge forward through this gluten challenge diet and hope that it is not all for naught. At least if positive we will have a solution, however challenging, (and possibly difficult) to Bean’s painful GI issues so that we can finally start to work towards healing her body.

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3 Comments

Filed under ADHD, ASD is more than what you see, Asperger's, Aspergirls, autism, celiac, death, diabetes, diagnosed, disclosure, leaky gut, Sensory Processing Disorder, strength, Transition

3 responses to “Celiac, you’re breaking my heart.

  1. God, I’m so glad you’re jumping through these hoops for her! When I was a kid, gluten intolerance/celiac wasn’t on anyone’s radar. How different my health/life would now be if I’d known about my sensitivities early on. You rock, mama!

    • Honestly, it wasn’t till Bear’s doctor brought it up when he was in hospital that I started taking it really seriously. I, like many, thought of Celiac Disease as a benign and potentially BS disease that was more of a fad then anything else. I have now schooled myself in what actually Celiac is, and how serious and potentially seriously damaging it can be. I only wish I had a doctor who was knowledgeable of CD who might have requested blood work and a biopsy long ago. I’m happy I was proactive in changing Dr’s for Bean and am now on the road to resolution (wow, that sounded religious – no?) 😉

  2. Pingback: That Endoscopy Thing We Did. | Deceivingly Normal

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