Alopecia, Celiac, Gluten, oh my!

I haven’t written anything in a while – mostly because I just haven’t known what to write because so much is going through my mind these days.

It’s taxing and complicated to have autoimmune disease yourself.  It’s a million times worse to watch it happening in your child.  I’m so very thankful that I’ve gone through the journey I’ve gone through and it has forced me to learn about these disease, their symptoms, their diagnosis troubles and so on.  I’ve learned to advocate for myself the hard way – through years of mistakes.  Now I can put that knowledge to good use advocating for my daughter.

You may have read that my daughter had one occurrence of Alopecia Areata last summer and then another one cropped up a few weeks ago.  In the post about the most recent occurrence, I also talked about how over the last year she’s had increasing spells of “not feeling well.”  I went back and looked at all the times she missed school – and between October 2013 and now it was 14 times without a specific cause (so I didn’t count the times she had a fever or vomiting, etc.)  And of course that doesn’t consider the summer months when she’s not in school.  So in a span of 14 school months she was absent 14 times with vague symptoms of her tummy hurts and she has a headache.   And the frequency of absences increased around the time of each Alopecia Areata occurrence.

In my last post I shared a letter I sent to her teacher on the day that we basically made her go to school (which was last Monday) even though she complained that it was bad enough she should stay home.  After that post she stayed home three times (that Wednesday, Friday and next Monday).

When she was home on Wednesday I began to research a possible connection between her Alopecia and her tummy/head troubles.  What I found is that Celiac is commonly linked to Sjogren’s (which is what I have) and to Alopecia (which is what she has).  There’s an increased chance of Celiac in children with Alopecia Areata (one student found around 45% of kids with Alopecia also had Celiac).  There is also a connection in families with people that have Celiac and family members with Eczema (which her brother has really badly – and has struggled with since birth).

That’s a whole lot of coincidences for me – three diagnosed diseases in herself and immediate family that are linked with Celiac and she’s displaying recurrent tummy/headache problems that have no other obvious cause.

I called the doctor and got her in for a Thursday afternoon appointment.  I described to the doctor her symptoms, the history over the past year or so and the concern with the coinciding with the Alopecia Areata as well as our family history of autoimmune disease.  This PCP is new to us as our previous family doctor stopped practicing and we had to switch to a new one.  This new one has seen me one time for my well-woman exam almost a year ago, and has seen each of my kids one time for their well-child exam last October.  So she doesn’t really know us, hasn’t really followed along with my journey, but I described it as best and as succinctly as I could.

She suggested that we start a food journal to try to determine if there are any correlations and that if it continued then we would do blood work and if the blood work didn’t point us to anything then the next step would be a pediatric gastroenterologist.

I wasn’t super thrilled as she was there, in the office, and I would have liked to have blood drawn that day, but OK, at least she mapped out a plan for us moving forward.

So we went home and began creating her food diary.  She stayed home again the next day (Friday).  She went with her dad for his weekend with them.  And then she was home again on Monday.

She seemed to hover at about a “7” (out of 10) on days when she was able to go to school, go to dance, do her normal things.  Not feeling well, but that seemed to be her limit of how much pain she could be in and still function.

The days she stayed home were “9” or “10” days, with the last day she stayed home (the Monday) being a “21” day.  I kind-a laughed at that one…clearly she hasn’t read my post about under-estimating your pain level when people ask so that you always have a place to move up to – don’t “top out” too early kiddo!

So when she was home on Friday (with a “10”), I called the doctor and she agreed to order the labs – I ran my daughter to the lab near our house and had her blood drawn.

By Monday the majority of the results had come back – all normal.  We were only waiting on the Celiac panel to come back.  This was the day she was at a “21.”

I’d had enough.  I wasn’t waiting for any bloodwork to come back.  The food journal had begun to show me what I’d suspected.  The days that she was at her worst and stayed home were the days after she’d eaten gluten-heavy.  The day that she’d felt her best (that Saturday between when she’d stayed home on Friday and Monday), was the day following a gluten-free dinner (by coincidence – she hadn’t planned to eat gluten-free, she just did that night).

That was enough data for me to try.  So as of dinner on Monday night she went completely gluten free.

Monday night was gluten free and Tuesday she was down in the 4-5 range.

Tuesday was gluten free and Wednesday she was down in the 2-3 range.

So we have 3 days that were her best days – even getting down to a “2” rating on the pain scale, which she says she hadn’t felt that good in weeks – that were the days following gluten-free eating.

The three days that were her worst days (“10” and even “21” days) were days following gluten heavy eating.

On Tuesday we got the Celiac panel back and it was negative.  But maybe we caught it early because of my hyper-sensitivity to autoimmune issues and my concern with the coincidence with the Alopecia.  Maybe she’s just gluten intolerant and not fully Celiac.  I don’t really care.  Either way, she obviously has the genes for autoimmune disease running through her, she obviously has at least one autoimmune process occurring in her right now (the Alopecia), and I have a food journal that is beginning to show clear signs that she feels better when she eats Gluten-Free.

Monday evening when we began this test diet, she and I went to the grocery store and got some gluten-free foods so that she could have snacks and things.  We got one kind of cookie, a loaf of bread, some granola bars, some crackers, some pretzel sticks, some chicken noodle soup and some tortillas for chicken fajitas the next day.  She already eats and loves fresh fruits and veggies and most of the meat we prepare won’t need any alterations to ensure it’s gluten-free, so we were good on that end.

All of it was disgusting except the pretzels.  She does like the pretzels but the rest were really gross.

So yesterday while the kids were at their dad’s for their weekly Wednesday-night time with him, I went to the store and got several different types of gluten-free flour and a few other ingredients for a few recipes I could try.  I figured store-bought gluten-free might not be yummy, but there’s got to be things we can make at home that would be yummy.

And heck yeah, I was right!  I only had time to make two recipes last night, but they were DELICIOUS!  One was gluten-free S’mores Cookies – they were so incredibly good that I had to stop myself from eating them because I needed to wait for her to get home to try them!  She took one today in her lunch for school, took one for one of the teachers she knows that has recently gone gluten-free and took one for her “snack” during state assessment testing time (since the snacks donated by other parents weren’t gluten-free).  They were absolutely delicious!

The second recipe I made was gluten-free cheese crackers (think Cheez-its, one of my kids’ favorite snacks).  They were really good, too.  I need to roll the dough thinner next time to make thinner crackers, but the flavor was right on – in fact better than the “real thing.”

So we’ve proven to ourselves that we can make absolutely yummy, delicious gluten-free versions of our favorite snacks and treats at home.  We’re delighted!

The only problem…after making those two recipes I was completely and absolutely wiped out – and still am feeling the pain and fatigue from it today.  Remember, one of the things I can’t do so much anymore, that I have a lot of guilt and frustration over not being able to do, is cook.  My hands hurt, my body hurts, it causes fatigue.  My husband makes most of our meals, but it looks like we’ll have to add “snack” preparation to our cooking chores as she won’t be able to just grab a box of crackers out of the cabinet.

Looks like it’s time for Shana to get involved in the cooking – we can learn how to cook gluten-free together!  I bought three new gluten-free cookbooks yesterday while I was out buying the various flours that I needed – and all three are filled with “kid-friendly” (my kids are not picky eaters by any stretch, but they still aren’t going to want to eat many “foody” types of things), easy to make, yummy looking recipes!