Share Your Gluten-Free Story: Meet Cindy!

This is a guest post by Cindy.

We celebrated my daughter’s first birthday in December. She was filled out and such a healthy girl at the time! Just after the first of this year, we moved from Virginia to Texas to live with my mother-in-law while my husband transitioned out of the Navy and looked for a job. Within a few weeks, we began to notice some changes in little 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, and her belly began getting very round and slightly distended. 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. Unfortunately, she wasn’t getting better but worse. We 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 kind of 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 just 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, more to do with low milk supply), 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 my husband’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/lactose 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 2800. This doctor believed there was more than teething going on, with her being the same weight as she was on 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 lab work to be done. 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 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, especially since she was only 15 months old. 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. We didn’t know this when we first began the gluten-free diet. 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. Praise the Lord there was indeed a call on Thursday about a cancellation on Friday!

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. 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. Since finding out about her diagnosis, we have done our best to keep all gluten out of her system. She still has some bad days as we are still trying to figure out what all she can eat, but she is so much better than she was 2 months ago!! It took a few weeks for her to begin gaining weight back, but she is now growing quickly. I have returned to the diaper size I was at before she began losing weight so dramatically and have had to go up a size in clothing. She is back on the growth charts and is quickly catching up to where she was percentage-wise. Her attitude is so much different now as well. She is so happy, funny, creative, and learning so much! She was so idle and uninterested in anything while she was sick, so she really is like a different girl now.

As I think about how she’ll never eat many things since she was only 15 months when she was diagnosed, I find comfort knowing that this will just always be how life is for her. She won’t crave foods that make her sick because she doesn’t know them. She won’t miss eating baby snacks with gluten in them because she won’t remember them. She won’t have to relearn how to cook when she’s a teenager or an adult because she’ll only learn how to cook gluten-free. While it was difficult to read her symptoms, see her go through that at such a young age, and try to pay close attention to when I need to know something she can’t express in words to me quite yet, it was actually great to find out when she was so young. I hope to only bring awareness about Celiac Disease to the community and the medical field so that they can learn to spot the symptoms and correctly diagnose those with Celiac. Thank you for allowing me to share my daughter’s story!

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  1. oh that just breaks my heart to see her little distended belly like that! :( so so happy that she’s healthy now! thanks for sharing!

  2. Hi Cindy
    We are going through the exact same story with our 17month old. How long we’re you gluten free before you saw results? We are awaiting results of second biopsy from a second opinion. Dairy free gluten free for time being.

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