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Our Celiac Disease Story

I never thought that growing my own food would one day help me PROTECT my family. Now that we know at least two of our family members are gluten intolerant, we’ve found that growing our own food is essential to preserving their safety (read my “Gardening and Food Allergies” page for more information).

Two years ago, a few months before Miss Muffet turned two years old, we finally discovered the cause of her gastrointestinal problems.

From a very early age, Miss M had issues. My husband frequently remarked that it was a good thing that we used cloth diapers, because if we hadn’t, we’d been spending a fortune in disposables. She was exclusively breastfed, so formula wasn’t the issue. Despite eliminating the most common food allergens from my diet (or so I thought), she never got any better. To make a very long story short, we went so far as to consult a pediatric gastroenterologist. We were finally told that we should stop worrying; sure she was small for her age, but so were her parents. She was obviously thriving, so we needed to just accept that some infant’s bowel habits were just… different.

Fast forward to Miss Muffet’s second year check up. I became concerned when I plotted out her growth myself and noted that she had dropped from 50th to BELOW the 1st percentile in weight! What was going on?

As you may know, I teach at a medical school. I was preparing a lecture about celiac disease, which is an autoimmune disease triggered by consuming gluten in some cereal grains, such as wheat, rye, and barley. As I often do, I began perusing the more recent medical literature to supplement the text. These newer articles explained how the medical community’s understanding of celiac disease is changing. Until a few years ago, it was believed that celiac disease was fairly rare, typified by the child with “failure to thrive” that essentially stops growing and is overtly sick.

Now we are begining to understand that gluten intolerance presents as a spectrum of symptoms, for some so mildly they aren’t aware of the food-body connection. Many physicians, even those freshly minted from medical schools, are unaware of the many different ways that an intolerance to gluten manifests itself. As a result, thousands of people are misdiagnosed with fibromyalgia, irritable bowel syndrome, arthritis… even depression. Of the estimated 1 in 100 people that have celiac disease, only about 5% are diagnosed.

As I was reading about the spectrum of symptoms that accompany an intolerance to gluten, many things were sounding eerily similar to my daughter’s symptoms. The real kicker was a photo of an 18 month-old with celiac disease, her abdomen distended and her legs skinny as rails.  I saw my daughter.

So I did what I tell my medical students NOT to do if you want to diagnose celiac disease: I took gluten out of my daughter’s diet. Within one week, her digestive issues disappeared. (To give you an idea of how bad they were, one of our babysitters threw up doing a diaper change). The bright red splotches on her forearm that she called “her paint” disappeared. Strangely, her gobs of gooey earwax that I would have to remove every night disappeared too.

Then Pa Hubbard took her to the grocery store, where the kind women at the deli gave her a cookie. “I got a cookie at the store, Mommy!” she exclaimed with delight upon her return home.

She immediately went to the bathroom.

“Sorry,” said Pa Hubbard sheepishly, “I didn’t realize there would be gluten in a cookie.” (Cut him a break… he doesn’t bake).

Miss Muffet’s “paint” on her arm returned. I cleaned out gobs of earwax.

I took gluten out of her diet once more and made an appointment with the pediatrician.

Miss M had seen the pediatrician about a month prior for an illness and had an official weight taken at that time. Since going gluten free, she had gained two pounds in just under a month. For some perspective as to what this meant, she had only gained four pounds over the previous year!

We were referred to a pediatric immunologist at Cincinnati Children’s Hospital.

I admit that I went to Cincinnati Children’s Hospital a little ashamed of myself. I knew I shouldn’t have taken Miss Muffet off gluten if we were going to confirm a celiac disease diagnosis. The gold standard for diagnosing the disease is intestinal biopsy; intestinal damage is reversed on a gluten free diet, so the hallmark features of the disease won’t be visible. Antibody testing can also support a diagnosis, but will also be negative if there is no gluten in someone’s system for the immune system to react against. But my daughter had been sick, and now she was thriving. I just couldn’t poison her intentionally.

The immunologist did some skin prick tests to rule out a wheat allergy, as opposed to gluten intolerance. He also ruled out a dairy allergy, as she had been unable to tolerate milk. He explained that we should try milk again in a few months; lactose intolerance is common in those with untreated celiac disease, as lactase can’t be produced adequately by damaged intestine (and yes, she tolerates dairy just fine now).

Then came the moment I had been dreading, when I would have to fess-up and reveal that she was still gluten-free. “Her antibody tests are negative for celiac disease,” he began. “Is she still on a gluten-free diet?”

“Yes,” I confessed. “I guess you want me to put her back on wheat so we can do that again, along with a biopsy.” I was preparing to explain to him that there would be no way I could do that to my daughter.

But I didn’t need to. “That is your decision,” he calmly stated. “I would expect any child under two years old to have a negative antibody test; she just can’t produce an antibody response similar to an adult. And she was gluten free for a month prior to testing, so that would additionally confound the test result. We could do a biopsy if you wish, but you’ll have to put wheat back into her diet for several months. We can make her sick again, confirm in the biopsy what we already know from experience, and we’ll be able to write in her medical record for the insurance companies that she has celiac disease. Or you can just keep doing what obviously works. So what do you want to do?”

I could have kissed him.

“Now tell me more about what you know of your husband’s family history…” (To be continued…)

Cathy Rehmeyer PhD
I am Wife to Pa Hubbard and Mother to two beautiful girls under the age of five. I am also a medical school professor, which ultimately allowed me to identify my family’s gluten intolerance issues, but has also influenced my interests in the food-body connection in numerous other ways. Prior to earning a Ph.D. in plant pathology from the University of Kentucky College of Agriculture, I taught high school biology and was a seasonal park naturalist for many years. My experiences in medicine, agriculture, natural history, and teaching have all converged into the gardening and gluten-free living blog, Mother of a Hubbard. I hope you enjoy it!

5 COMMENTS

  1. Wonderful Story! Glad your daughter is thriving now. I spent 35 years of my life with numerous health problems: GERD, IBS, arthritis, severe muscle spasms, possible Lupus based on sky high antibodies in blood, swelling, numbness and prickling in hands, bloating, skin issues, hair loss to almost bald on top of head, and debilitating crushing fatigue. Doctors will not listen, bloodwork showed low level of antibodies, told me it was not Celiac. 2 years later, I tried gluten-free, within 3 weeks I had new hair growing in, my swelling was gone, my skin was clearing up, my IBS was gone, my GERD was down from everyday to once a week, my muscle spasms and arthritis were gone, my hands were no longer numb and prickly, I had a little energy and could wake up after 6 hours of sleep without feeling like I need to go back to bed. After two years eating GF, I feel 90% better. When I accidentally eat gluten, cross-contamination, my hearts starts racing, my throat swells, I get diarrhea, my eyelids swell, my joints all hurt, and I feel like I have the flu. But the doctor says I have to eat wheat again to be diagnosed. I said “No Way”.

  2. This could be my daughter you are describing at 2 years old. It took almost a year for her diagnosis of celiac disease. She is 36 now, and has does well since we took gluten out of her diet.

  3. Like other posts have stated, you could have been describing my son in your blog. He will be 2 years old this month. I breastfed for 1 year and then after weening him all the problems started. Found out he is allergic to dairy, eggs, and peanuts. But once eliminating these, he did not get better. He had skin rashes, horrible diapers, and he cried most of the day. Once we thought he was allergic to wheat, we had him tested to find a negative result. We eliminated gluten and within 1 week, we had our old son back – he was laughing with his older brother and his diapers got better. He also started gaining much needed weight and was no longer anemic. Unfortunately we had him tested for celiac and genetic tested too but he was already off gluten. The blood tests came back negative but the genetic portion came back positive. I know that does not mean much because half the population has these genes but with his other symptoms we believed he had celiac. We finished all of this up around 18 months and he has been gluten free since then.

    However, this past month, he has started having the same bad diapers again. Not as horrible but definitely not normal. His mood is still fine so it does not seem to be bothering him (only bothers his dad and I because we are thinking “here we go again”).

    Did your daughter still have bouts of yucky stomach once you removed gluten? I can’t believe he has eaten anything with gluten because I monitor everything that goes into his mouth. I do believe I need to be better about cross contamination (even though he has his own toaster, utensils, etc.) as our whole family is not gluten free.

    Like you, have chosen not to re-test him for celiac because that would mean to put him back on gluten and watch him fight and get sick everyday. I just can’t do that to him as a parent.

    I know this is very long winded but thank you for posting your blog. It helps to know other families are going through the same things and your blog hit very close to home! 🙂

  4. We have a similar story. My daughter was 11 months old and things got really bad for her. She would be up every night for 4 hours screaming every night since she was 4 months old. She was formula fed baby and we started food with her early on. She got tubes in her ears at 11 months old and then she slept all the time. So we blamed the screaming and horrible dirty diapers on teeth. But at 11 months we took her off formula and put her on whole milk because she was a very good eater! In the month of December she lost 5 pounds she was having 10 dirty diapers a day and sleeping 20 hours out of 24 hours a day. in February she was hospitalized for having 15 to 20 dirty diapers a day. They told us it was viral. After fluids for a day she was sent home. The next I noticed her belly was huge and hard as a rock. I took her to the dr. And our dr. Said lets run some allergy tests. She did a celiac panel and her numbers came back un readable the test is 0 to 150 and she was way over 150. 2 months later on a gluten free diet since she was diagnosed. Still having 7 to 10 dirty diapers a day. Took her back to GI dr. They did a colonoscpy and endoscopy wanted to rule out other diseases. Everything came back 100% celiac and they did another titer level and it is still past test level. So thats my story on how my 19 month has celiac disease. They also want my other kids tested too. She is also finally up to weight she was at 11 months old!!

  5. We have a similar story. My daughter was 11 months old and things got really bad for her. She would be up every night for 4 hours screaming every night since she was 4 months old. She was formula fed baby and we started food with her early on. She got tubes in her ears at 11 months old and then she slept all the time. So we blamed the screaming and horrible dirty diapers on teeth. But at 11 months we took her off formula and put her on whole milk because she was a very good eater! In the month of December she lost 5 pounds she was having 10 dirty diapers a day and sleeping 20 hours out of 24 hours a day. in February she was hospitalized for having 15 to 20 dirty diapers a day. They told us it was viral. After fluids for a day she was sent home. The next I noticed her belly was huge and hard as a rock. I took her to the dr. And our dr. Said lets run some allergy tests. She did a celiac panel and her numbers came back un readable the test is 0 to 150 and she was way over 150. 2 months later on a gluten free diet since she was diagnosed. Still having 7 to 10 dirty diapers a day. Took her back to GI dr. They did a colonoscpy and endoscopy wanted to rule out other diseases. Everything came back 100% celiac and they did another titer level and it is still past test level. So thats my story on how my 19 month has celiac disease. They also want my other kids tested too. She is also finally up to weight she was at 11 months old!!

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