That Endoscopy Thing We Did.

If you are a die hard Deceivingly Normal follower you’ll already know that our dear Bean has suffered for a long time (from the age of 4) with GI issues, tooth enamel defects, low weight gain and bad sleeps leading to, but not totally guilty of, extremely dark circles under her eyes.

If you are not a die hard follower – than you can catch up here.

In any event: We suspected Celiac.

We pushed for a biopsy to be done, even with the risks of false negative results. Her GI doctor agreed, but only if there was a change on her blood test results. The change could be minute, it could still read negative by medical standards, but it had to be there. She didn’t want to put Bean through a procedure for nothing. I understood but this was awful. Not only was she clearly affected physically by consuming gluten (she was on the “gluten challenge”), but no matter how long she stayed on that damn gluten challenge, her blood results never differed. She never showed any positive antibodies to say she might have Celiac. We even tested her for an IgA deficiency that would cause her to be showing false negative results, but alas she did not have it. In other words, she was only showing physical signs of a gluten intolerance, but her medical results claimed different.

Blood test after blood test on my anxiety ridden kiddo, and nothing to help us get to the next step. I was becoming frustrated and impatient. Convinced I was right, but feeling like an overprotective and paranoid mom at the exact same time. In fact, exactly as I had felt when Bear was ill with T1D and I knew something wasn’t right, but continued to doubt my instincts.

We had her give blood every 6 months to test for those damn antibodies that might indicate that she might have CD. She was clearly ill, I might go as far as to say deteriorating in health (her teeth which had once improved were worse now, her eyes darker, her sleep worse, she began to get headaches daily) she wasn’t giving the Doctors what they wanted to see there was no good reason to validate the need for a biopsy.

Back to the books (internet) I went. More research, more sleepless nights finding the information I needed to get my child properly tested. I had done this once before with Pups. When she was diagnosed with Guttate Psoriasis. I had researched it till I discovered a woman who had “cured” herself of this painful full body rash by having her tonsils removed. I took my evidence to the hospital and got them to remove Pups tonsils (no, not on the spot).

And guess what? It worked.

My child was suffering, I was good at research, so I researched, and I found this:

Some patients test negative for celiac disease and turn out years later upon repeat testing to have celiac disease. Repeating your blood test may be an important first step. Some individuals also take advantage of genetic testing to determine whether or not they have certain HLA DQ genes that are necessary for developing celiac disease. If you do not have these HLA DQ genes, your symptoms are likely related to a condition other than celiac disease. The HLA DQ genes associated with celiac disease are present in up to one third of the population, so the tests are only helpful in excluding celiac disease as a diagnosis.”

I decided to get Bean’s DNA tested to find out if it was even possible for her to have Celiac. It was.

Determined to follow through with my instincts. I brought a folder full of evidence to show that Bean had more than just a slight chance of having CD and I demanded (asked really strongly) that we give her an endoscopy. The doctor agreed relunctantly. Even going as far as to tell me of a little boy who had complications due to a simple endoscopy being done. With a big gulp and butterflies (not the good kind) in my belly I ‘neverminded’ it and pushed ahead. I knew I was making the right choice.

We were booked for the endoscopy and awaited the date.

Bean was nervous, of course. And so was I. When we got to the hospital the doctor who was going to do the procedure came in to speak with me. Like Bean’s GI doc he too lectured me on the unlikelihood that this endoscopy would show any signs of Celiac in a child whose blood tests had all come back negative. He looked down on me (seriously, he was standing above me – I was sitting on the bed with the Bean) and his eyes read “Lady, this is not going to turn out the way you hope it will”. Which was totally useful at that moment in time seeing as Bean was two minutes from going into the room to get the endoscopy done.

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When we were left alone, after all the many different visits from all the different nurses and doctors and residents performing studies they wanted to know if we wanted to be a part of, Bean just sat quietly in my lap and held my hands tightly.

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I don’t get a lot of these moments, so I cherished it for exactly what it was.

Finally the time came for her to go in. They let me join her and hold her while they sedated her. She sobbed and screamed and panicked and then, like a light – she was out.

Afterwards, while she was coming out of it and recovering, the doctor came in with an “I told you so” look about him and said that everything looked normal but that we would get the results of the biopsy in 4 to 6 weeks. Glad it was over with I let out a big sigh of relief. At least now I could say I tried everything. And now that it had gone so well, and was such a short procedure (I’m talking 10 minutes) I knew we could do it again in a few years to come if we felt we had to.

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Two days ago we got a call from Bean’s GI doctor. The results were in.

You guessed it – she has Celiac.

Now we are working out exactly what that means. Other than the obvious – gluten free – we also need to get a separate chopping board for her food to make sure there isn’t any cross contamination. We need to figure out how much we tell people…do we announce it to her class so that the kids don’t share food with her? We need to figure out if gluten free toothpaste and shampoo is something she should have or if it is just one of those marketing schemes for the gluten free gullibles…and we need to throw her into this and hope that she will not cheat at school.

So, on we trudge. The family with the best chance of earning the “most amount of invisible conditions in one household” award (if it existed).

Shit, does that exist? Cause we could use an award right about now.

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4 Comments

Filed under Asperger's, celiac, diabetes, diabetes and illness, diagnosed, Uncategorized

4 responses to “That Endoscopy Thing We Did.

  1. Wow! What a journey. I’m so glad that you finally have a definitive answer. I’m so proud of you for sticking to your guns. Bean’s a lucky girl!

    Being gluten free in our world is tough. It took me the better part of 7 years to kick it to the curb, and I still don’t trust myself in the presence of a good quality croissant. Bean’ll stick to it when she realizes just how much better she feels without it.

    xo

    • I can already see that she feels a whole lot better. I think having Asperger’s in this case may benefit her because of her sensory disorder. Perhaps simply pointing out that when she is GF her headaches stop will keep her on the diet. Are you dx’s celiac? If so – can I pick your brain? Let me know.

  2. I remember my Celiac diagnosis being a relief, but also a big transition. Be weary of strainers, toasters, or anything else that is difficult to clean. In our family we found it easier to make a gluten free general rule with a gluten-containing section, rather than vice versa for prepping area. But, I know that’s kind of cumbersome. I thought you may like benefit from this model 504 plan for additional Celiac accommodations that would be helpful in school to take what you want from it. Best of luck! http://americanceliac.org/wp-content/uploads/2009/08/ACDA-Model-504-plan.pdf

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