May is National Celiac Disease Awareness Month. And, as you know, I am passionate about Celiac Disease Awareness and being a voice in this world for those with this disease. For those people, including my three year old son, Samuel, eating gluten free is not a trend.
Eating gluten free is a matter of life.
And so today, because I am passionate about bringing awareness I will share with you just a bit of his story. And I ask that you share with others his story because that would bless not only me, but many other moms and dads out there with little ones who are suffering from this often underdiagnosed disease. My dream? To speak in front of doctors, nurses, nutritionists, companies, and researchers and to show these pictures and to share Samuel’s story. Because in sharing, there is hope, there is health, and there is life again.
This was Samuel.
And as I’ve written so many times before – I absolutely hate this picture. This picture makes me cry, makes me wonder how I didn’t see how sick he was, it makes me mad that he was dismissed, but this picture must not be forgotten. This is the picture that reminds me of the power of being a voice for these children. This is the picture two days before Samuel was admitted to Children’s Hospital when my friend Amy and I boldly walked into the ER and told them that this boy was critically ill. This is the picture of a toddler with Celiac Disease.
He was starving.
You see, for an individual with Celiac Disease their body is unable to absorb nutrients well. Why? Because gluten – which is a protein found in wheat, barley, rye, and sometimes oats – literally destroys the teeny villi that line the intestinal tract. Those villi, those hairs, are what absorbs nutrients from food and converts it to what the body needs. Without those working, the person starves. And this is another photo that I hate, but won’t get rid of. That was him. In pain. Weak. Needing answers.
That was Samuel. Starving even though he was eating. In fact, in the weeks prior to his admission to the hospital he could barely stay awake, he fell over when walking, had the worst diaper rash imaginable (when we were in the hospital wound care had to tend it), was bleeding, and basically was fading away. And we were told he was sick because he was number seven in a big family. Let me repeat that. I was constantly told that the reason he was sick, constipated, bleeding, not staying awake, and more because he was in a big family and exposed to more germs. He was sick for nine months prior to diagnosis. I went to the ER with a two page 10pt typed record of every single time he was sick with every single symptom.
He didn’t match the adult symptoms. He was a child.
The Celiac Disease test is a simple lab draw initially. Do you realize that it takes eight visits on average for a child with Celiac Disease to be diagnosed? Now, keep in mind that this is eight visits with a sick child. With a mother wondering what is wrong with her little one. Undiagnosed Celiac Disease can lead to type 1 Diabetes, lymphomas and other cancers, other autoimmune diseases, and even death. While that is rare in our society, bear in mind that one hundred years ago or so before there was the Celiac Disease diagnosis parents would see their children unable to absorb nutrients and starve. And that is because the child literally faded away in front of your eyes.
My Samuel was fading.
I know it. And that picture? That is within the week of his diagnosis. That picture was the first picture I have of him where I knew the battle that I was to fight. That picture brings me hope because it was the beginning of life being returned to my little boy. This is the picture on my Celiac Disease bracelet because it is the start of life.
And that is why I fight so hard to bring awareness about this disease. We test for numerous other diseases in our children, and yet this disease is often missed. It shouldn’t be that way – it should be on the radar of doctors and be included in the thought process when a child presents with chronic gi issues. For my Samuel it got so bad that his entire immune system became compromised. He was sick often and simply could not fight off infection well anymore. Even now, even after eating gluten free, his immune system is still weaker. However, despite that, he is now thriving like a three year old should. Here’s the truth – someone with Celiac Disease can never eat gluten as it destroys those villi. But, despite that, you can live a full, joyful, and great food tasting life.
Celiac Disease is not an allergy. It is an autoimmune disease. And it needs to be taken seriously.
So please, remember that picture of Samuel from before and now look above at the picture of him now. Full of life. Full of never eating gluten but absorbing food and thriving life.
A lab draw. That’s the screening.
If this post helps one more child then I am thankful. Be a voice with me. Please.
To read more of my posts on Celiac Disease please click the tab about Celiac Disease above. Please also know that I am not a doctor and this is my story with Samuel and it cannot be substituted for medical advice. If you are wondering if you have Celiac Disease – see your doctor. Do not eliminate gluten prior as the lab test is dependent upon gluten being in your system.
Also, consider joining me on the Udi’s Gluten Free Community Boards where I help to facilitate discussion about gluten free living. I am so honored to be a voice for them, and consider this time spent there a great gift. Also join me this Friday, May 3 1pm ET for a live chat on the Udi’s Boards discussing Celiac Disease.
To read more facts please read Celiac Awareness Month by the National Foundation for Celiac Disease, Celiac Disease Info via Wikipedia, FAQ’s at Celiac Center, and the University of Chicago’s Celiac Disease Center.
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Images and original content are sole property of Rachel Martin and may not be used, copied or transmitted without prior written consent.
Thank you for this reminder. My mom has celiac, my sister was born with it (and God healed her when she was six!), and we’ve had my twin boys tested for it. We’re now eating gluten-free because of autism, but I talk to people about celiac a lot. Sometimes, I feel like I’m paranoid– I see it everywhere– but this was a good reminder that it actually is common and undiagnosed. When my twins had been sick for a month after a two-day virus, our pediatrician told me their guts might just still be recovering but I insisted on the blood work. The tests came back negative and they eventually did recover from the illness, but I still feel better knowing. And if I hadn’t had the family history, I wouldn’t have even known to ask. It’s such a simple blood draw! I wanted to tell my doctor, who told me that our boys didn’t look like they had celiac, that sure they didn’t, but he was used to kids being diagnosed when they were finally in crisis state. It shouldn’t take that long.
The irony is that they wanted my boys to have blood work done around the same time to test for lead because of the pipes in our 100+year old house. They kept telling me, “It’s just routine, we hardly ever get actually worrisome results.” It baffles me that they’ll do that for “routine” screenings but balk so much at testing kids who are actually showing signs of illness for something that might be the root of that problem.
Thank you for sharing!
About the blood draw: My husband was tested by blood and was negative for Celiac Disease. Two years ago, my 2 daughters and I had gene tests via saliva. My girls have one copy of the Celiac Spru, and one gluten-sensitivity gene. This means one or both parents carry these genes. My results are that I do not have the Celiac Spru but do have 2 copies of the gluten-sensitivity gene. This leaves my husband, who only had the blood test. His doctor is a Western Medicine Medical school doctor.. so knows little about genes and nutrition, etc. His explanation was that the genes might be there but are dormant, so not everyone with a Celiac or gluten-sensitivity gene needs to be GF. I told him that for me, I have Neuropathy and have been able to totally off Neurontin since being GF and that I had taken that drug for 10 years! Anyone have ideas about the doctor’s thought on this?
Thanks for sharing your story of how gluten sensitivity affected your son. It affected my son in the form of autism (impaired brain function). He is now considered recovered after going gluten and dairy-free. I think the whole world needs to know how this seemingly innocent plant (wheat and others) can cause havoc for us and our children.
Thanks so much for spreading the word, Rachel! This is important information, indeed! Samuel is so blessed to have you in his corner. 🙂
Oh this brings tears to my eyes! So very thankful that you fought to find out what was going on and saved that boy’s life!
Psalms 27:13-14: I had fainted, unless I had believed to see the goodness of the LORD in the land of the living. Wait on the LORD: be of good courage, and he shall strengthen thine heart: wait, I say, on the LORD.
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Since Celiac Disease is an autoimmune disease it can sit “dormant” in your body. It often takes a trigger to turn the disease active which would explain having the genetic structure but not having the positive result on the lab tests. For Samuel, even though he really was showing signs of issues with gluten since birth he got very sick with a high fever at about nine months old. We believe that was the trigger as from that day he started having issues with his bowels. That was also around the time where he was being introduced to food.
He’s also had the genetic tests and has a strange halotype – not the typical one seen – but it was enough for them to confidently diagnosis him with Celiac Disease. He also had two biopsies done since he was so ill. One after the initial diagnosis which showed significant damage and blunting to his villi and with numbers very low indicating minimal absorption and then one four months after being gluten free which showed that his intestinal tract had healed completely.
Anyways, I don’t know about the advice about not being gluten free if you have the Celiac genes. I do know that the lab work – ttg gliadin, etc — would show if there was active tissue damage due to gluten. And the lab draw would not show if you have problems with gluten if it is administered when you are eating gluten free.
Clear as mud? Feel free to email me if you have any other questions. email@example.com
Thank you for being a voice!
I have celiacs and was diagnosed officially at the age of 39. The severe symptoms started during my first pregnancy at 32. My blood test, to this day, still comes back negative. But after eating mostly gluten free for 4 years, b/c it just felt better, I was having severe abdominal and intestinal pain/problems. My new doctor diagnosed me during an endoscopy using duodenal biopsies. At that time I had severe atrophy, several ulcers, and inflammation. It was obvious to me, even before seeing the results, that I had undiagnosed celiacs. It’s no fun when you know something isn’t right and felt unbelieved. I sympathize with your article and am so glad you pushed hard for Samuel.
Thank you for this! I just recently found your blog. I’m gluten-intolerant, and so I have to live life gluten free as well. Though it’s not as severe as Celiacs, it still caused a lot of damage.
I look forward to following you and your journey!
This made me cry!! I was diagnosed with celiac disease at age 17 after six months of being sicker than I can even comprehend. I had no energy, I felt awful every single day, my hair was thinning, my skin was getting dull, and my teeth were getting yellow. It also ruined my mood all the time. Basically, I was a small teenage girl who ate plenty of healthy food, yet nothing was nourishing me. After many doctors appointments and misdiagnosises, I was finally diagnosed and my whole life changed for the better. I can sympathize with exactly what your son web through and it makes me wanna cry knowing that other people had to feel those terrible things. I am also very passionate about celiac awareness and I appreciate all you are doing! I am so glad your son was diagnosed and can now live a full and happy life!
I was diagnosed with celiac disease at age twenty-seven. After almost two decades of being sick with “not normal” childhood illnesses (migraines, shingles etc.) I had to be admitted to the hospital after fainting spells and debilitating migraines. My family doctor of 20 years told me it was in my head and that I was causing it by not dealing with a sexual assault two years earlier. The doctor on call thankfully happened to have a family member with celiac disease and ordered the simple blood test and have been feeling great since eliminating gluten, am happily married and thankfully expecting. I still find it frustrating that none of my family members have been tested, but they need to take ownership of their health. Hopefully someday doctors will take celiac disease seriously and be proactive.
My niece was diagnosed with this disease when she was 4 – because she had stopped growing. now she is 11 and living gluten free and she has fully recovered and started growing again within 4 months after starting her diet. We are all so happy for this being diagnosed and now being able to help her simply by avoiding certain groups of food or drink. She will live with this her whole life but this is ok, because she will have a life….
The blood test has a very high rate of returning false negatives. I have celiac and to this day it doesn’t show up in blood tests. It DOES show up with an upper endoscopy. I’m so glad your son was finally diagnosed. It’s sad that in today’s day and age we still have to fight for that elusive diagnosis 🙁
Yes, agreed, Mary. Totally. I had to fight for even that simply blood test. And then Samuel had two endoscopies. It should not be a fight, really. I am glad you got a diagnosis as well – not knowing is the worst. Once one knows, then one knows how to fight.