Saturday, August 31, 2013

The Thicker Envelope

I don't normally take both of the kids to the supermarket with me. If you knew Lord Fussington and Lady Runsalot, you'd understand. But on Friday afternoon, I loaded them into the car for my weekly trip.

And on the way out, I stopped to check the mail.

Three envelopes. Addressed to myself, Sweetie, and Dibbs.

One envelope was thicker.

Like many of us who attended the Friends for Life conference, I took advantage of screening opportunities. I had a retinal screening for myself. I had the kids screened for type 1 diabetes markers:

Both kids tested negative this year. I found out a couple weeks ago. Whew.

And I had myself and both kids screened for the antibodies for Celiac disease, as well as for the genetic HLA markers for Celiac.

The screening day was an awful day - our worst at the conference. My daughter was cranky, tired, constipated, and in an overwhelming environment with lots of people. She had an epic tantrum with my husband in the lobby (in front of many people) while I attempted to fill out all of our screening paperwork with Dr. Fasano. I had to sit at a laptop and fill out the same multi-page questionnaire with hundreds of questions...THREE times. Once for each of us. My husband returned her to me and they were both spent. Worked up. Done for the day. That's the state we were all in as we dragged the kids in for the blood draw.

I went first. Easy peasy. But it took 3 or 4 technicians to hold Sweetie as they did the draw. She's super strong. She cried. She tried to get away. Having them do my son was even worse. He'd never ever been restrained before. I held his head as they pierced the crook of his pristine chubby arm. I held him still with every ounce of my strength, wrapped both arms and legs around his head and body...and I flipped out inside when they stuck the second arm to try to get enough blood.

When it was over, each kid got a stuffed frog and settled into the double stroller as we made our way back to our hotel room. They were immediately fine. Fully recovered.

I was shell-shocked.

I didn't say a word. Didn't want to talk to Hubster. My arms were stuck straight in front of me pushing the stroller, unbending, still feeling the muscles flexed as though I still held my son against me so he couldn't move. I got back to the room and just lost it.

I don't ever want to hold my own child down like that again.

But the kids? They were fine.

Dr. Fasano passed us in the hallway later that week and I stopped him. I apologized for my kids' behavior and for my nerves that day. Thanked him for the research he does on Celiac disease.

Nearly two months later, that thicker envelope happens to be for Sweetie.

Blah blah blah, for research purposes only, follow up with your primary care physician...but she tested positive for elevated levels of IgA tissue Transglutaminase - in other words, for the antibodies that would be present if she had celiac.

I'm always up for a challenge. Just tell me yes or no. Tell me what to do next. Let's get on with it, for goodness sake. I hate waiting. (The genetic marker test results are all still pending, too. A negative on that test would be...confusing. A positive would be...slightly more conclusive?)

I sat in the parking lot of our closest supermarket, tweeting and facebooking and texting people I know who are familiar with celiac. It had to be right before my weekly shopping, didn't it? So do I go in and buy bread and granola bars and cookies...or not? F---. Oreos or no oreos?

I decided to get everything I'd ordinarily buy, the general consensus being that doctors would want her to continue eating gluten until further testing could be done so as not to skew results.

She may also have gotten me to buy the two Sofia the First toys she asked for.

When we got home, I did a quick kitchen assessment. 20 or so things maybe. 20 or so items with flour or wheat, etc. We could do this if we need to. I snapped some photos of what would have to go. I'm a visual learner.

But I hate being in a holiday weekend holding pattern. I want to move on this thing.

We don't want to subject a three year old to a biopsy or endoscopy if we don't have to. Not if we could just go gluten free and call it done. But we are still waiting to talk to someone with more medical authority on the topic before we plan the inevitable elimination diet. My CDE was extremely helpful when I called her before 9am on a Saturday, as were the people who have talked with me on FB who have experience with this in their homes.

The phone nurse at our pediatrician seemed really confused as to why and how and where I'd gotten the kids screened for something without their doctor's orders. Asked me to email them "the results." I tried to explain that I wasn't looking at labwork, no blood serum values, nothing quantitative - just a letter that said her results were "positive" and that she should follow up with her doctor because she may have celiac. But I scanned the letter and sent them "the results" anyway.

I'm sure a pediatric gastroenterologist will be able to tell us more. Her only symptoms that might correlate are chronic constipation, chronic congestion, and a persistent rash (2 years off and on now) that has been called everything from yeast to folliculitis.

A gluten-free child or gluten-free household is likely in our future either way. It's do-able. I'll figure out bread and waffles and snack bars. I'm not afraid.

I don't have the luxury of being afraid. If her immune system is going after her body and we can catch it before it becomes a runaway mine train. Before... Well... you know.

We still had our usual gluteney pizza for dinner last night. In typical Sweetie fashion, she ate the pepperoni slices off and left the rest. Last night, I was especially okay with that.


  1. I'm sorry you have to worry about this.

  2. My son was 3 when we went through this. You will get advice from both sides of the edoscopy/no endoscopy spectrum. We got one (results were so classic for celiac the doc now uses them in presentations).

    Nearly four years later, I don't regret doing the endoscopy. Here's why: The gluten-free diet is totally doable. BUT it is an enormous pain. GF stuff can be expensive. Eating out requires diligence and a leap of faith in the kitchen. And, it can make it harder for your child to eat a nutritionally complete diet. (GF foods are often lower in fiber, for example.) There are days when my wife and I look and one another and say we hate celiac more than diabetes.

    So, going GF is a big commitment. I'm happy we did the endoscopy before we decided he'll never be able to eat gluten again.

    By all means, do the research and make your own decision. Just my two cents.

  3. So sorry to hear about your experience! I was diagnosed with Type 1 as a young adult and had tummy issues until i finally got the help i needed about 5 years later. Knowing earlier would have made my diabetes much more manageable due to absorption issues etc. My tests through the medical system were not conclusive tho.... no one gave me the Celiac diagnosis. But i know 100% that gluten makes me sick. So we limit it in our house and i avoid it 100% (with amazing improvements to my energy and well being). i always go for the GF options if possible for the kids. We are the same for dairy, and see the results in terms of better skin, no congestion.

    If you eliminate gluten and her rash, constipation etc improve, that is really the best information! However, there may be issues around needing the biopsy if you want a diagnosis for other reasons. I know in some places, if you have a diagnosis then you can claim GF as a tax deductible etc.

    It is great that you say you know you can do this. And you can! the options for GF products are so much better than 10 years ago when i first went GF. Eating whole foods is key too.

  4. They say that information is power, but I'm sure that right now you're drowning in some of that information. May the strength be with you as you and your daughter's medical team figure out the best course of action.

    I just finished reading Wheat Belly and that book comes very close to saying that none of us should be eating gluten. Unfortunately a lot of the arguments in the book make perfect sense.

  5. Hi there, new to your blog...came way from Kerri's post on FB. I have a child with type 1 diabetes, he was diagnosed at 19 months, also my husband has been diagnosed with t1d since he was 11. When we had children we knew the slim chance of our children developing t1, but were not thinking it would happen so early and to our second (not first!) child. Just this past July we found out that our youngest also has celiac disease, of course the wheels got turning and the guilt poured on thick...and we quickly got the rest of the family tested for celiac disease, too. So for our oldest is in the clear, for both t1d and celiac. My results were inconclusive due to such low IgA levels, I have an appt to discuss this. My husbands results are yet to come in. And oddly it was found that my MIL has celiac disease. The pieces are coming together of where this all lines up and now as we embark on going completely gluten free as a family, extended too, we find it isn't easy nor is it impossible. It is humbling to find that a candy bar is GF, but a bowl of oats are most likely not. I think this diagnosis was more difficult for us at first because we didn't know where to start, but once we cleared the kitchen of contaminants, removed the gluten from the fridge and pantry we started doing better. We remind one another that asking questions isn't being "difficult" but for our health - so when in a cafe, restaurant, grocery store or wherever talking about our health needs isn't being rude, but necessary. If you need further help please send me msg either via FB (sarah rogers kelly) or via our blog. It will be okay, it is rough at first, but all ends up incredibly well eventually :)

  6. I'm sorry about Sweetie's letter. I'm in a little bit of a similar thing over here, so I'll be reading extra-avidly and hoping for good news!

  7. We have to go in for an endoscopy. I'm tired of this.

    I hope you'll keep writing about celiac. I need a guide.