Sophie's story of diagnosing Celiac Disease

Wow, it's been a while since I posted anything on here!  I guess I don't keep up as well as I should.  I do feel as though I should share a little about Sophie and her new diagnosis of having Celiac Disease. 

Let me start kind of at the beginning, at least as far back as I can start to see changes.  In December, just days after Sophie turned 1 year old, we began mixing her formula with regular whole milk to ween her off her bottle and more importantly formula.  Once we got to the point that there was more milk than formula, she began to have an upset stomach and a bit of diarrhea (sorry if that's TMI, but there will be more so if that bothers you, you may wish to stop reading now).  We realized that she wouldn't be able to drink plain milk by itself.  Nothing else seemed to bother her, though, despite having milk or cheese in it.

Just after the first of this year, we moved from Virginia to Burleson, TX to live with Brandon's mom while we transitioned out of the Navy and while Brandon looked for a job.  Within a few weeks, we began to notice some changes in Sophie.  She was very fussy and seemed to keep having runny diapers, though some were normal.  I also began noticing that her arms and legs were getting smaller, but just slightly.  Around this time, she also has the first of her molars come through so we thought it was probably just teething.  February 1, I knew something else was wrong.  We took her to the doctor and found out she had an ear infection.  I felt so relieved to know that it was known and could be treated!  We started her on medicine, but she wasn't getting better but worse.  Changed medicines and still didn't really see any improvement.  We all just assumed it was some problems with her teething.  All the while we noticed that she was forming this larger-than-normal belly, which at the time was cute.  Little did we know what it was actually signifying.

The diarrhea and fussiness continued into mid-February.  I began logging everything she ate and drank thinking it was something with her diet causing problems.  I also tried a few other things like switching dish soap thinking she was having a reaction to a different one we were using.  I suspected more of an intolerance for milk and milk products when she was up at 3 am one night throwing up after a very cheesy dinner.  A few more days passed and while she wasn't throwing up, she was still very fussy, not sleeping well at all, still had diarrhea, and was still getting smaller.  Mainly her arms and legs were getting smaller, but everyone was just saying it was because she was moving around more since she was walking more then.  I knew something was still wrong with Sophie so we took her back to the doctor thinking maybe her ear infection was still there.  On February 14, two weeks after her last appointment, she had lost a pound when she was weighed.  After her losing weight at 3 months old (completely unrelated to Celiac), this was alarming to me.  We presented the doctor with her symptoms - large belly, smaller arms and legs, diarrhea, extra fussiness - and after an examination, determined it was probably due to the infection and medicine still working its way out of her body.  He advised us to set up an appointment a week later and if she was still having problems, he would run some labs and try to determine what was going on.

We set up an appointment for her for Feb. 21, but we moved for Brandon's new job on Feb. 20 so we canceled the appointment.  Once we moved, Sophie seemed to get worse.  She was so fussy I had a hard time doing anything because she would cry so much if I put her down.  She didn't want to eat half the time and still wasn't sleeping well.  The diarrhea just seemed like it was never going to end.  There were days I had to change not only her diaper, but also her pants and socks and clean up her shoes and floor.  It was very upsetting to me to not know what was wrong with my child.  She had 2 more molars and a lower front tooth come in as well during this time, so teething still seemed possible, but I felt deep down that it had to be something more. 

I began looking up symptoms of lactose intolerance and cutting down on dairy to see if there would be a difference.  It became obvious to me this was a legitimate concern when she went a day and a half without anything dairy and was in the best mood, which quickly changed when I gave her a meal with a rather large amount of cheese incorporated.  The rest of the evening, she was EXTREMELY fussy and back to wanting to just be held again.  At this point, I realized that we needed to do a dairy-free diet to see if the problems disappeared. 

March 7th I decided to begin a strict no-dairy diet.  That same morning, something still wasn't right.  I'm not sure what led me exactly to do it (besides the Lord's leading), but I made her a doctor's appointment with what I believe to be the only pediatrician in our town of about 2700.  This doctor believed there was more than teething going on, with her being the same weight as February 14th being a major factor.  She supported going dairy-free, but also felt that we would have to see a GI doctor to find out more of what was causing her to lose weight.  She ordered some labs and ordered them stat so that we could find out quickly.  By this time, you could begin to see the tops of her ribs easily and I had needed to go down a size in diapers.  Some labs we received back quickly, which showed blood in her stool, low protein levels, and the x-ray showing a lot of stool in her bowels (despite her diarrhea).  There were tests ran for Celiac Disease at this time, but the results would take a few days to get back. 

After about a week and TONS of research online of Sophie's symptoms, I realized that she was showing signs of Celiac Disease so I began a gluten-free diet on March 9th to go along with her dairy-free diet.  The dairy-free diet stopped her diarrhea.  She began asking for food ALL THE TIME and would cry if she wasn't eating.  It was like she was always starving.  March 14th, I took her for a follow-up appointment, where we discovered she had lost about a pound in one week.  We also had received the results of the Celiac tests, which were all showing high, indicating there was a good chance she has it though blood test can't determine for sure.  I called to make an appointment that day with the GI doctor in Austin.  The earliest they had was April 3rd.  Because of all she was going through, they placed her at the top of the cancellation list.  We also had to put her back on a gluten so that they could run some more tests for Celiac Disease, which requires the effects on gluten on her body.  So, I put her back on gluten on a Wednesday and asked everyone to pray that I would receive a call Thursday afternoon about a cancellation on Friday.  As most of you know, there was indeed a call on Thursday about a cancellation on Friday!  God is so good! 

The appointment Friday didn't do much more than examine her and set her up for an endoscopy and biopsy on her small intestine the following Monday.  A biopsy of the small intestines is the only test that can be ran to determine Celiac Disease.  We continued on our dairy-free, just slightly glutened diet and took her for her endoscopy on Monday.  The procedure was shorter than it took for her to come out of the anesthesia, but we made it through.  The GI doctor informed us that we were welcome to start back up on the gluten-free diet, which we did that day.  Two days later, on March 21, we received the biopsy results, giving confirmation that Sophie did indeed have Celiac Disease. 

Finally finding out that we knew exactly what was going on with our precious baby girl was such a relief that words cannot explain.  While it may take a few months to get her back on track as her body heals and allows nutrients to be able to be processed again, at least she shouldn't be getting worse anymore.  We still will be monitoring her and checking her weight to make sure all is going well, but I feel so much more peace knowing that we are working at making her better.  Now I am going through the difficult task of learning what to she CAN eat versus what she WILL eat.  They don't always match up for a picky 1 year old! 

I hope to share this journey a bit more regularly with everyone in hopes of maybe getting the word spread more about Celiac Disease and how dangerous it can be.  The first doctor that we saw on February 14th had enough information to know that she was showing signs for this disease, but I feel as though he didn't know enough about it for it to come to mind at the symptoms.  I started with the intolerance to milk here because Sophie was on a milk-based formula and suddenly over a span of a couple of months seemed to not tolerate it at all.  This is common for those with Celiac Disease because of the damage done to the small intestines.  This was our first clue that was so easy to miss. 

I can't help but think how much better she'd be by now if that doctor had taken the steps the pediatrician we saw a couple of weeks ago did.  I praise the Lord for putting a knowledgeable doctor in our path and showing us the way to her diagnosis!  If you have any questions about Celiac Disease or anything we went through, please don't hesitate to ask.  I hope to one day pass along enough information that Sophie's story thus far can help another person in some way.