It must be so hard.
Those are often the first words I will hear after I tell someone how Samuel has Celiac Disease and that he can never ever not cheat even once eat gluten. These words are often said to me twinged with a bit of sadness for me, and for him, with regards to not eating gluten. They see every single thing that he will miss.
That’s what I reply with almost every single time.
And then, often, often my eyes will well with tears as I explain why it’s so wonderful. You see, Samuel was terribly ill with Celiac Disease and gluten was slowly killing him, my baby, right in front of me. We don’t really talk about that much – we talk about how eating gluten free is trendy or is great for weight loss or can help with allergies – but in someone with Celiac Disease gluten is an actual poison to the body.
Gluten destroys the lining of the intestinal tract.
And I mean literally destroys it – ripping, blunting, ruining the tiny villi that line the insides. And those villi, those tiny hairs? They’re the very item needed to take food and transport it into the body so that it can be used. In an individual with Celiac Disease they do not work. Think of it like a normal intestinal tract is like a shag carpet absorbing nutrients and someone who has Celiac Disease has an intestinal tract mimicking a tile floor.
They may eat. But they are starving.
My son Samuel was starving.
He was starving right in front of me. His eyes were hollow, his legs could barely walk, and he couldn’t stay awake. And it was all from gluten.
So when I’m asked about raising a child gluten free or am told how hard it must be I often will tell others that it is wonderful. Is it hard? Absolutely. There, especially in the beginning, was a gigantic learning curve. I couldn’t walk into Target without crying – didn’t know what to buy – didn’t think life would be the same. It’s hard because for him life won’t ever be so called “normal” but, and here’s the big but, having his non normal life actually gives him life.
I consider it a gift to raise Samuel gluten free.
I haven’t ate gluten in 2.5 years now. Wait, let me take that back. When I was in South Carolina I had two bites of a biscuit at a restaurant in Charleston. (I just had to try it) But, since that? None. I don’t have Celiac Disease (or at least I don’t think I do – I’ve never had the lab work), but have continued eating gluten free because of Samuel. I am more focused, more determined, and definitely more aware about gluten free living.
It is hard.
It’s hard to travel, hard to go to events, hard to always have to explain it, but I wouldn’t trade the hard part away. It has made me a fighter, a passionate advocate for Celiac Disease awareness, and it has taught me that life can be good in the midst of things that are often hard.
Being Samuel’s mother? A gift.
Raising a child gluten free?
It’s life for him.
And that is a wonderful gift.
Make sure to join me on the Udi’s Gluten Free Community Board for more discussion about living gluten free. I’ve been truly blessed to be a community leader over there for over a year now. Beyond encouragement for the gluten free journey there are also fabulous recipes shared, links to information regarding gluten free living, and a general sense of fellowship and support for those living gluten free in a very gluten full world. I can truly say that site and Udi’s Gluten Free are both blessings in my life. 🙂
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Thanks Rachel for the reminder… I have not had any formal testing done on my daughter, but she has severe food sensitivities that tear her up inside resulting in bloody stools.
The difference is night and day when we are feeding her ‘safe’ foods. Sometimes I’m tempted to feel sorry for myself or her, but really it is a blessing to be able to have the knowledge and then flexibility to feed them food that helps instead of hurting their bodies…
Yes, yes, yes, Heather. I have learned that I simply need to look at the beauty of knowing what to do in his life to give him life. So often it’s easy to sit and look at all the hard parts and miss the beauty.
Bless you today.
This is such a wonderful post, so full of hope and joy! I am so happy to “witness” the miracle of your sweet, Samuel through your words and photos. Your motherly wisdom encourages me in ways you’ll never know. Thank you.
Oh @KayKay – Thank you. What sweet words you’ve blessed me with today.
I am grateful.
Thanks for the heartwarming story! I have 9 children… 7 of them have celiac disease. I’m not making it up, it’s not something I would ever have chosen myself; but, God has blessed us in this trial. We have opened a Gluten Free family bakery and we are doing VERY well! Thanks for sharing your heart and the joys of Gluten Free living! I too am so glad that my children can walk, run, laugh, carry on conversations, play with friends, and just generally enjoy the things that most children enjoy!
Blessings to You!
You haven’t brought tears to my eyes for a while. Just seeing that amazing little man looking so good with the biggest smile on his face…oh it tugs at my heart!
Know that I’m here lifting up thoughts and prayers.
Psalms 107:28-31 Then they cry unto the LORD in their trouble, and he bringeth them out of their distresses. He maketh the storm a calm, so that the waves thereof are still. Then are they glad because they be quiet; so he bringeth them unto their desired haven. Oh that men would praise the LORD for his goodness, and for his wonderful works to the children of men!
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I remember all of my confusion and feelings of helplessness when my husband was diagnosed with Celiac Disease. Gluten free eating has really gotten a lot easier in the days since then, and the products have really improved! This is a wonderful post to put out there for people. It IS the trendy thing to do now, but for some people it is a necessary way of life – hard or not!