Lauren at the doctor

gluten-
free for life

May is Celiac Awareness Month, and what better way to learn more than by hearing the story of a child’s illness and eventual diagnosis?

This is how a mom got to the bottom of her daughter’s problems, and what it was like to transition to a gluten-free diet.

My daughter Lauren was diagnosed with celiac disease in 2009, when she was 7 years old. It wasn’t the first thing her physician tested for and was deemed to be an unlikely answer, but her biopsy was positive and she’s been gluten-free ever since. This is her story.

An inkling of a problem

Lauren before her diagnosis

Lauren was born in 2002 and was a healthy baby, toddler and preschooler. She did, however, have a few incidents that were never explained when she was pretty small — small enough to cry and stay awake,  but not be able to tell us exactly what was wrong. She went to the emergency room with severe stomach pain a few times but we never got an answer as to what was ailing her. The only thing that kept me from seeking more answers at this time was the fact that the incidents were very isolated, seemed unrelated to an acute illness and didn’t continue to distress her.

This all changed, however, when she started kindergarten. The year started off fine, but within a month or so the school nurse called to inform me that Lauren had a stomach ache. Nothing serious, nothing severe, but bad enough to come home from school. No vomiting, no stool changes, just a vague, yet painful, stomach ache.

The school nurse never had any suggestions for us — her usual question was, “What do you want me to do?” After a few of these episodes, I began to suspect that there was a little more going on than what appeared on the surface. Yes, kids get stomach aches a lot, and often they are just that — stomach aches — but sometimes, there is a serious reason behind them.

Investigating the issue

The first doctor visit was entirely unproductive. He believed if it wasn't stress or nerves, that she may be lactose intolerant, so he suggested she go on a lactose-free diet and see if there was any improvement. We dutifully took her off dairy completely and imagined improvement, but after a month or so she continued to complain of stomach pain. So, back to the doctor we went.

This time, he seemed to take it a little more seriously. They took abdominal x-rays and did a slew of blood work. Test after test, however, came back normal. He put her on Zantac because he thought she may have acid reflux, so we tried it out for a few months — ultimately rejecting the notion since although it seemed to help at first, after a while we realized that it was just wishful thinking.

Finally, after months of trial, error and random medical tests that yielded nothing, her doctor suggested one more blood test — a celiac disease panel. I agreed even though I didn’t have a clue what celiac disease was. He didn’t sound optimistic that it was the answer, but I was hopeful that we’d arrived at an answer several weeks later when the results came back “mildly elevated.”

Getting a diagnosis

We were referred to a pediatric gastroenterologist about an hour away at a large children’s hospital called Children’s Mercy. By this time, Lauren was in the first grade and I was expecting my fourth child, who was due on Christmas Day. This doctor also didn’t sound like she expected her to come back positive for celiac disease, but she wanted to repeat the blood tests to rule it out. Lauren again had to endure a blood draw, but our wait this time was only a week or so.

"When the call came, I was pretty cheerful — I really didn’t expect Lauren’s test to be positive... "

When the call came, I was pretty cheerful — I really didn’t expect Lauren’s test to be positive, so I was quite surprised when the nurse on the phone told me her results were indeed indicative of celiac disease. The test was the tissue transglutaminase antibody, IgA class, also known as tTG IgA. With this lab, the result in non-celiac patients should be under 20 — hers was over 100. “Oh,” I said, with an air of intense sadness. I felt a lurch in my stomach — I closed my eyes.

I wanted a diagnosis, I wanted to know that there was something wrong, something that we could fix — but the news was still a blow. She let me know that while the blood test was a step in the right direction, we should still schedule a biopsy for a 100 percent confirmation. It was scheduled for the following week, when I was 9 months pregnant — a week before Christmas.

Acceptance

Once I got that phone call, I knew that she had celiac disease. I knew the biopsy would be positive, and it was — she had microscopic damage to the villi in her stomach and small intestine. This damage was from her body reacting to the gluten in foods and damaging itself — this is why celiac disease is known as an autoimmune disease. I wanted her to have the biopsy so we could have documented proof that she would always have on file, and would hopefully help with compliance as she gets older. It was an easy procedure — the worst part was the IV — and it was over in just a few minutes.

I began checking out what going gluten free meant, and at first I was definitely overwhelmed. All her favorite foods contained gluten — crackers, pizza, macaroni, Goldfish and Pringles. I wondered what she would eat. It took a lot of rethinking about food on everyone’s part to gradually begin to normalize a gluten-free diet for her. We substitute gluten-free items, like pasta and pizza crusts, when she wants something like that, but we also strive to emphasize foods that are naturally gluten-free, like fruits and vegetables.

My gluten-free girl

Lauren and Willow in Colorado

It has been a long three years, but honestly it also seems like she’s always been gluten-free. We’ve discovered all sorts of cool new recipes and every day there are more food labels declaring the contents to be devoid of gluten, and local and national chain restaurants are also getting into the act. There is even a bakery and restaurant in a nearby town whose entire menu and facility is gluten-free.

If you are headed down this road for your child or yourself, you are definitely not alone. There is more information out there about celiac disease and eliminating gluten than I even had at my fingertips three years ago, and you may find that one of your friends or family members has already gotten rid of it in their diet. It was sad to find out my child had an incurable autoimmune disease, but the good news is that it can be completely controlled with diet and any damage that has occurred will reverse, so she’s as good as new now — and I’m so glad we know.

Image credit: Monica Beyer

More about celiac disease

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Help your gluten-free child fit in
Mom story: My kids have life-threatening food allergies

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Comments

Comments on "How we found out my daughter has celiac disease"

tegan April 06, 2014 | 7:39 PM

My daughter was diagnosed at 4 years old. This was the worst and most terrifying week of my life as she was vomiting, pains, losing weight really quick and she had uncontrollable diarrhoea and no sleep. As a mother I could not work out for the life of me what was going on with her and we were going for trips to the hospital and suddenly I noticed that her poo was floating and white which naturally being a parent you wonder. I googled it and all the symptoms that my little baby was going through were right in front of my face. Throughout the years I thought when she said she wasn't feeling well she just didn't want to eat her food like kids tend to, she never ate cakes and always had stomach aches. I took her straight to the dr where she was sent for a blood and poo test and for 1 month she was on a strict lactose and gluten free diet. In that time frame I watched a sick little girl turn into a happy and healthy child. I knew before the results even came back that after 4 years my child was trying to tell me something was wrong and I just didn't get it. I had never really heard of Celiacs disease before. I beg you all to get your little ones tested because I never want a child to go through the horrific events that mine had too.

Tracy Harper December 17, 2013 | 11:17 PM

I am in tears reading your article as we have just days ago found out that our 10 yr old son most likely has celiac disease. His blood test was over 200 and we are awaiting an appointment for a definitive biopsy. I can very much empathize with your story always feeling something was wrong but of course not wanting your child to be sick. We are still in the shock, sadness and overwhelmed phases at the moment. We haven't even told him yet as Christmas is just around the corner and we want it to be one without all the worries that life is about to bring. We are planning to have my husband & I tested in light of this diagnosis and I can only begin to imagine how completly life altering this is going to be. I know it is treatable but who wants to tell their child that they are going to have to miss out on so many things they have loved up till now. I love that Lauren has embrased her new diet and it feel good to know that there are people out there that can truly empatize with our situation. The begining is just such a scary place to be.......

Abby Travis May 14, 2013 | 9:33 AM

My son Logan was diagnosed 2 years ago with Celiac disease. His diagnosis came a week after being diagnosed with Type 1 Diabetes and Hypothyroidism. He was 6 at the time. My family of 6 is now completely gluten free so that Logan may have a safe haven from the world of gluten, since for him it affects more than just his stomach. It is so nice to hear of other families that are dealing with celiac, since we don't very often read or meet any. I wish you the best of luck on your journey!

Nadine Grzeskowiak May 09, 2013 | 3:27 PM

Hi Monica, nice article! Thank you for sharing Lauren's diagnosis story. I have a question for you; has your entire family been tested for celiac disease, because it is genetic? I refer to people like your daughter as the 'Sentinel Celiac' and from what I have learned over the years is there is rarely ever just one celiac in a family. It is not uncommon for the entire family to have celiac. The other key point to remember is that even if a celiac panel test is negative, it does not rule you out. Family members must be tested every year or with the onset of any symptom. I wish you and your family the best as you live gluten free!

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