When Celiac Disease Jumped on My Daughter

Having been a mother of a Celiac teen now for a little over two years, I have learned that Celiac Disease presents itself in many different ways. Many Celiac's that I have talked to since my daughter's diagnosis have often told me of feeling fatigued and ill with mystery conditions, aches and pains- just feeling sick all the time for years. I myself had been tested for Celiac Disease, when I began having neurological symptoms a few years back, since this master of disguise disease can mimic even Multiple Sclerosis. (I did end up having MS though, and not Celiac Disease.)

When it came to my daughter, she had been symptom free until the whirlwind that ended with a diagnosis of Celiac Disease. As a young child she was a 'good eater', healthy, active, and rarely had need of a doctor. All this changed in October of 2008, at age 13. She and her brother both ended up at home with a case of strep throat. Both were administered antibiotics, with my daughter's dosage particularly high since we were told she had a severe case of strep- so bad that she was not to go out in public until her antibiotics had been finished in 10days. In under 10 days, my son had bounced back to his normal self and had gone back to school.

My daughter on the other hand was still sick. She had finished her antibiotics, her glands were gone, and still felt awful. So I took her back to the doctor. They tested for mono. Tests came back negative. Next it was thought they may have given her too high of a dose of antibiotics and killed off her good intestinal flora, resulting in bad bacteria taking over. This too was not the case, nor were parasites which she was also tested for. There was a myriad more of blood tests done, making her feel like a blood donor versus being on track to find a solution to her illness. Then finally there was a mention that they were going to include Celiac Disease in the next battery of tests. To everyone's surprise her blood tests came back positive for Celiac Disease. There was no family member who had ever been diagnosed with Celiac disease before my daughter.

The initial doctor we had been seeing recommended immediately going on a gluten free diet. So we did. My daughter began to feel a bit better within a few days. As a follow up, I booked an appointment with her usual family doctor which took place two weeks later. It was recommended that we see a Pediatric Gastroenterologist, since her symptoms were not considered "classic" indicators of Celiac Disease. My daughter's maternal great grandmother (and her brother) had suffered from Crohn's Disease, so that was a possible consideration. I was also told that it is possible to have positive blood test results for Celiac Disease, but still have negative biopsy results-and vice versa. Therefore, biopsy is the only clear determination of Celiac Disease.

A couple more weeks later, we saw the Gastroenterologist. He was especially skeptical of the Celiac diagnosis, and said that my daughter's symptoms were more of a fit with Crohn's since her stomach pain would often wake her in the middle of the night, and even had her occasionally doubled over in pain. Her pain he said was too acute for Celiac's. He did not rule out her being a Celiac though, and told her she had to eat the equivalent of two slices of bread everyday until her biopsy which was scheduled a month later. In the meantime, they sent her for more blood work, x-rays, and a barium swallow.

Having to eat her daily bread quota (though crucial for diagnosis prior to biopsy), my daughter was now even more miserable than when she just didn't get better from strep. She reacted even more strongly to gluten now than she had previously. Occasionally she even vomited, had frequent headaches, and just felt like she had a bad flu. To make the situation even harder on my daughter, she had been too ill to attend school since mid October. The biopsy was scheduled for mid December, after which she could then go gluten free once again.

When the results came in, my daughter was positive for Celiac Disease and not Crohn's. She was devastated- but I think she would have been upset with anything that told her that she was ill with a condition. Going gluten free slowly got her on the road to recovery. It took time though. She missed more school in January, and was doing occasional days in February. She was so exhausted and still felt flu like for several weeks after going on the gluten free diet. She had missed months of horseback riding lessons too- her favorite thing in the world- so her exaggerating her recovery was out of the question. You could see it in her face that she still was not well.

In June we saw the Gastroenterologist again for a check up. (By this time, my daughter had felt much better, though still struggled with fatigue some.) This doctor had said previously, when he gave us the positive biopsy results, that my daughter would likely lose a bit of weight on a gf diet. Not that she needed to- standing at 5ft 3inches tall and a size 2. To the doctor's surprise (and also that of my daughter and I), she had lost 20lbs! I knew she had lost some weight, wearing now a size 1, zero or double zero depending on the clothing brand- but this was astounding for such an already petite girl. She has since gained more weight as she has filled out more over the course of puberty, but she no longer is plagued with her 'mini tummy' that she constantly had prior to being a symptomatic Celiac. Bloating, is something easily overlooked and masked with natural weight gains that occur in puberty.

Though the onset on Celiac Disease was dramatic in my daughter, many Celiac's go years without being diagnosed. Celiac Disease causes damage to the villi of the small intestine whether symptoms are dramatic, vague, or silent- and can lead to other health issues. Luckily my daughter was told that in a year or less, that if another biopsy were to be done that no damage would be found- meaning her risk for other Celiac related conditions would be low because there would be no permanent scarring of the villi. Unfortunately, Celiac Disease did leave it's mark nonetheless on my daughter- she would not grow to her full height. If not caught prior to puberty, Celiac Disease can stunt a child's growth. She is OK with her height now, but it bothered her for some time. The psychological aspect of having to eat gluten free for life was probably the most difficult however, and is still an ongoing struggle at times for her.
I welcome you to comment and share how you or someone you know was diagnosed. For more information related to this topic, please see my previous posts Adapting to a GF Lifestyle and Gathering GF Resources to Live Better.