Our Gluten Free Journey

leo badlands

I have been gluten free for about 5 years. My journey started in the generation before me, with a father who suffered from gut issues, chronic fatigue, and at age 52 died from complications from surgery related to stomach and esophageal cancer. I remember him having trouble swallowing, and I occasionally have the same issue today, as does my youngest son. But it was the intense stomach pain that finally led me to a gastroenterologist who noticed an inflamed condition called gastritis that was causing the pain. The solution – take a PPI indefinitely and avoid tomato and citrus a host of other foods considered irritants. The pill had horrible side effects for me, so my choice was to take the medication and feel miserable, or not take it and have pain all day. Neither choice was appealing.

Lucky for me shortly after all of this I was introduced to a fabulous naturopathic doctor who, after sitting with me for over two hours and going through all my medical history said “I think you should try going off of gluten. All of your history and signs point to that as the trigger.” I was annoyed. Like many people I thought the gluten free diet was a fad. But, here I was, in a doctor’s office, being told it was something to try. And I needed to try something.

The next week was a family beach vacation. My doctor said to enjoy it and go off the gluten afterward. But I couldn’t enjoy much of anything with my stomach hurting me all day, every day. So after at first reacting with a silent eye roll, I let myself accept the information, and after that day sitting in that office I have not eaten gluten since. Because after just after a few days of stopping, and more gradually over time including at that vacation, I started to feel better. A lot better. The pain went away. Not only that, but the Pepcid AC I carried with me and the Tums that my husband often had on him that I borrowed – I never needed them again. I also never took the PPI prescription again, and certainly didn’t miss it.

Our Youngest Son

Our youngest son choked on a half a meatball when he was four. It was a horrible day and we were lucky that the local fire department arrived quick enough to dislodge it, save his life, and avoid permanent lung damage. They immediately took him to the hospital overnight for observation and to check his lungs. Afterward I noticed some issues with him swallowing, but assumed it was from irritations from the incident. But then I noticed it getting worse, and him doing behaviors I know well – pacing, slightly panicking, trying to drink water until things are swallowed all the way down. I avoided making too much of it for a while, as these episodes were infrequent, but finally decided to take him to a GI doctor to see if they could do any better figuring out his swallowing issues than any doctor had ever done figuring out mine.

This was one of the best decisions of my life. My son’s doctor is amazing and much better than any doctor I have seen for myself. Apparently for a child’s endoscopy they look at everything up and down. His swallowing is why we got him the endoscopy that discovered the EOE we suspected, and the surprise we never expected – Celiac.

I still remember where I was when I got the call and the feeling like the floor was falling out from under me. It hadn’t even occurred to me that he head Celiac. He’d never had any issues eating gluten or complained of stomach aches, or any of the things you associate with someone with Celiac disease. In fact he had always had a huge appetite, seemingly never full – we had lots of jokes about him and snacks and invading people’s pantries. Yet he topped out at the 3% percentile marker for weight, and at times never even made it on the chart.

Having a child diagnosed with Celiac was something that took me a while to process. You start to realize all the things that have to change, and all the every day childhood pleasures – class pizza parties, birthdays, etc. that they may feel left out of, or not be able to participate in, and how to make it as easy for them as possible. His diagnosis was right before the summer and and a slew of summer camps where I had to be diligent to let them know if of his diagnosis. I remember one science camp who had on the agenda to make s’mores in a solar oven and the sweet owner who contacted me to make sure the marshmallows she bought were GF so he could enjoy the activity.

We are still on this journey and while we have learned a lot of things we want to share, we still have a lot to learn ourselves. As for our son today – his weight is up into the staggering 40th percentile (huge for us), he’s happy, healthy, and thriving. He does still have issues swallowing but very rarely. He’s owning being gluten free, often announcing it happily like a fun fact, occasionally expressing a pang of something he wishes he could have, but then quickly figuring out something better he can enjoy. He always points out that I am gluten free, too, and I will forever enjoy being his wing man!

Our Glutenful Family Members

My husband and oldest son are still able to eat gluten, though we mostly keep it out of our house. I say mostly because they do sometimes get something special, just for one of them, and I don’t want my oldest to resent me or my younger son for restrictions he doesn’t want or need. Lucky for us we do not get especially sick when glutened, and at the moment don’t have to worry about cross contamination provided it is minimal and not super frequent. We have also learned a ton of gluten free recipes and have gotten alll the gluten free snacks to try so that everyone can eat together and get excited about the same foods! We are starting this blog and have our instagram account @glutenfreewheelin to share what we have learned down this road so far, and to continue to learn more. We hope you will join us!

11 Comments

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