Our Coeliac Journey
By Lauren Raymond
My precious daughter was diagnosed with coeliac disease. We took it well, better than I thought. This could possibly be because I already went through the tougher part of things weeks ago.
Following years of intermittent stomach pain, these past 3 months have been cumulatively worse than her history. While we knew that our dear daughter did in fact carry the coeliac gene, it had not yet been activated. Some months back, she experienced a bad case of gastroenteritis, which in my opinion, was the trigger that shot the gene into activation. How a person gets gastroenteritis in lockdown goes to show the hashgacha pratis of it all. Since then, any gluten containing food she ate resulted in intense stomach cramps, some so debilitating that she was sweating, screaming, writhing in pain, asking me to say Tehillim for her, while my heart pounded and my tears flowed, as she asked me over and over why Hashem would do such things to her. I was left speechless and pained.
So, crunch time came - we went for the blood test that would give us a clear indication of whether the antibodies in her gut were fighting against themselves and destroying their own body. It is hard taking a 7-year-old for a blood test, it is traumatic, but we got through it. After a few days, we had heard nothing from our doctor, so we thought no news was good news, but decided to book an appointment for the results in any case.
The doctor called. She began by telling me the good results of all the various tests that were run through the blood test, a technique possibly learnt at medical school on how to give bad news - first focus on the positives. She went through the gamut - liver, kidney, inflammation, vitamin levels, iron - all good. Then came coeliac serology - usually both amounts should be under 7, my daughters were 19 and 42. I felt the middle part of my forehead become hot, as a numbness extended through my body. I looked at my husband, who had been listening to the results with me, our eyes caught, and we didn't need any words to communicate what we felt. We shared in that moment an element of sadness and harsh reality.
After the doctor had organised referrals to the appropriate specialists, I hung up the phone. My husband in his usual rational and positive attitude reassured me that it was indeed not the worst thing that could happen, G-d forbid, and I replied "yes - but it's difficult to swallow". No more benching, no more cakes at parties, no more challah, no more matzah. And that in truth is the nutshell of coeliac diagnosis, it's a horrible thing to have, to have to put up with for one's entire life, it's difficult to swallow, but at least it's not life threatening, it's just life changing.
An endoscopy is considered the gold standard in diagnosis. What is difficult to deal with is that she needed to be on a gluten containing diet without lapse prior to the procedure. Getting a procedure date was next to impossible during lockdown. How do you continue giving poison to someone for so long? The days were long, and the nights were even longer. An idea entered our minds and we decided to call a friend of ours who had a personal connection to the top pediatric specialist. Within 10 days the procedure was done. Even during our most trying times we could feel that we were being carried by The One Above.
It took me a while for my emunah to catch up to this concept. As my three-year-old son eloquently said about my baby, "she knows how to get up but not how to fall." I now had to learn how to trust, how to let go and how to fall. My brain raced towards the future, to shidduchim, where I had to learn to let go, to understand and to believe that Hashem runs this world, and He in his infinite wisdom and chesed has prepared an extra special chosson for my daughter - someone who will have an extra degree of empathy and selflessness to know that besides someone’s physical medical history, lies a plethora of the most unbelievable positive characteristics that personally blow me away on a daily basis. From her irresistibly sweet laugh, her gorgeous features, her lust for life, her simchas hachaim, her insatiable thirst for knowledge, or her palpable connection to Hashem, the list is inexhaustible and admirable.
I then had to come to terms with the fact that she would not be able to enjoy her beloved fresh, homemade challah, which she took so much pride in plaiting. This was something quite hard for her to deal with too, understandably. We spoke it through together, as she sat curled in my lap, silent, upset, frustrated. This was her new avoida, Hashem did not want her birkas hamazon anymore, He only wanted her borei nefashos, that was good enough. As I write this my eyes still well up as I recall listening to her sweet benching. I recall with pride how she pointed at each word in the benching. Nonetheless, this is His will, and it is therefore, only for the good.
So since then we have moved on, with Hashem's help. We faced the sedation and biopsy, and we are on the other, wheat free side. When the gastroenterologist called today with the result, which we already knew, we celebrated. We went out with her sisters to the boutique kosher patisserie and we splurged on gluten free exquisite macarons and a giant gluten free cookie for her. We ate, and toasted to her new way of serving Hashem, and we were happy. Well, outwardly anyway. And on the inside, well, it is coming along. We are stocking up on the best gluten free goodies in town. We are focusing on what she can eat, what her options are. While she may never again enjoy her Shabbos challah, she will be a pro at making it, braiding it, and taking it**.
Since writing this article, 2 of her younger brothers have also been diagnosed with coeliac. Hashem in his infinite kindness eased us into this new avoida starting with my daughter first, and once we'd settled with that knowledge, the other 2 blows were a little softer.
My hope is that anyone reading this article will gain chizuk from the knowledge that having children diagnosed with coeliac disease is indeed difficult. It is ok to feel overwhelmed, afraid, and sad. But to know that it is a gift from Hashem and one can gain invaluable strength and gratitude from having to work through such a test. It also begs for those around who can eat regular wheat breads and snacks, to be appreciative of their privilege to bench and praise Hashem for their unrestricted diet.
[**Roughly 50% of those diagnosed with coeliac disease are able to tolerate oats. We will endeavour to undergo an "oat challenge" a year after her diagnosis, where she will undergo a further biopsy after ingesting oats. Our hope and tefilla is that she will IYH be able to tolerate oats and then be able to once again eat challah and bench. Oats are the only grain out of the 5 grains that doesn't contain gluten, yet is able to contribute to all the same mitzvos as wheat would. My daughter is poised for the challenge!]
