This is my Samuel today. And yes, I’ve shown you this picture, but he is so happy. Full of life. It’s a perfect comparison picture for you all.
This was what he looked like on January 15, 2011. I hate this picture. I simply cannot look at it without my eyes welling up with tears. I hate that this is what he looked like and doctors told me he was fine.
This was my post on January 17, 2011. I finally, finally, finally, found a doctor who listened. Who saw his labwork and realized that the cheerful, and very tiny, little boy was seriously sick.
i am at the childrens hospital with samuel.
they admitted him for observation and tests/
he was very lethargic not eating well andwas unsteady
please pray for wisdom and a doctor who pursues answers.
pray also for my family as they are sick
thank you so much
rachel
This was me just about a year ago. Me with no sleep. Me at the hospital for several days, sitting in a chair with my messy hair, determined to find an answer. I was mad — I wanted solutions for that sweet baby sleeping on me. I was sitting in the hospital praying and contemplating the new journey that my life was taking. But, more than that this was me, becoming determined, becoming a fighter, an advocate, for my boy.
This was me. In May. With Samuel, the little boy, that emerged from the shadow of a silent disease.
This was Samuel before his second biopsy in May. His eyes have sparkle again. His biopsy? It showed significant healing to his small intestine. Why is that important? In an individual with Celiac Disease, which is an auto-immune disease, the villi are destroyed by gluten. Nutrients are not absorbed. That picture of Samuel last January? He was starving. And that is why I hate it. This picture? Life.
This is Samuel in June. See how his hair began to grow? And how he’s alert and awake? He literally began to regain his life, bite by gluten free bite as the year went on.
Now, he is no longer starving, in pain, hungry, tired, lethargic, or fighting constant infections and fevers.
He is thriving.
All because he does not eat any gluten.
This is why I fight for Celiac Disease Awareness.
So today I throw my arms in the air and give praise to our Father for this past year. I thank Him for the good times and still praise His name in the hard. He is worthy of my utmost praise. Blessed be His name!
Now, as we move forward, I will walk with Samuel bravely. Fighting for him. Knowing that his immune system is still compromised, but not sitting in worry about it. Doing my best. Praying, praying, and praying.
And spreading awareness.
So today, I ask that you too, would take a moment and
share Samuel’s story of Celiac Disease.
Remember, this was him in January last year.
And this is him today.
 |
| updated pic 5/2012 |
Sharing his story could help one more child, one more mother, one more life.
It would mean the world to me.
Thank you for walking this journey with me. I am grateful.
28 comments
Hi Rachel,
I remember that day of the cry out for prayer and how I and many others were praying and interceding for Samuel.
He looks amazing!! Healthy, strong, happy and totally alive!
Praise God for healing Samuel. Praise God for giving you the fighting power for Samuel. Praise God the doctors listened and did the right tests. Praise God for gluten free foods that are readily available.
I have shared this on twitter and FB. I will also share this on my blog and put up a post sometime today.
So great to see a happy, healthy boy.
Blessings,
<><
love this post! v.i.c.t.o.r.y!!!
Rachel,
Many are and will be blessed because of your determination to find the source of your son’s illness…and then, move forward and help him grow healthy again! It is heartbreaking that so many are devestated by this disease…it is heartwarming to know that there is a way to fight it! Your little one…is blessed to have a loving family…a Mom…determined not to give up…..and push forward…to advocate for him and for the others out there… Love you!!! and am blessed by you!
Oh, Rachel – what a beautiful thing that God has brought you and Samuel (and your whole family!) through this and you’ve become this shining example of God’s grace and strength. He is our Rock and you show this so wonderfully – Praising God for the healing and answers you’ve had for Samuel
A wonderful timeline of events that document the power of God…So happy for you and that beautiful little boy.
samuel is the most beautiful boy. God’s plan for him is undoubtedly amazing. beast, if you will.
so glad that he is thriving. i know such a journey has passed since that first photo and the last.
great post :))
-jocee <3
Oh, I’m so thankful that you found a doctor who understood and who looked for answers for him!! He looks amazing now. It is incredible and frightening what the silent disease of celiac can do to a body. Praising God with you!
I just posted today about all the things I miss about eating gluten. The list is yummy and good and oh so bad for me!! I am thankful not to be eating those things even while I miss the taste of gluten. It isn’t easy being GF but it is life-saving and a blessing to our bodies. On this journey with you…
I have followed this journey of yours from the beginning, praying with you as you fought for your son and praising God with every victory you’ve had with him. I was diagnosed with a gluten intolerance this summer and it’s been a struggle, but I’m thankful for your blog and the encouragement it gives me. I know I’ve made the best choice for me and reading your Samuel’s story reminds me that it’s not just about not eating gluten – it’s about my own health. Thank you for sharing your journey.
I have a Samuel too! He was diagnosed in October 2010, at 6 years old. He was hospitalized with abdominal pain and metabolic acidosis secondary to starvation ketosis (although they couldn’t seem to figure out what was causing the metabolic acidosis at the time). His pediatrician wanted to send him home with a prescription for pepcid for his abdominal pain. I put my foot down and said “No, you need to tell me why he is having this pain.” One celiac panel and a few days later we had our answer. He weighed 43 pounds at diagnosis. He gained 10 pounds in a little over a year since going gluten free.
The change in your little boy is amazing. I think that doctors need to pay attention to a mother’s instincts. It seems that so often they know that something is wrong long before a doctor sees it. Continued prayers for you and Samuel
It’s wonderful to see him doing so well. Isn’t it amazing how our mother’s intuition can tell us what the doctors can’t?
We need to listen to ourselves, our children, and make our doctors listen, too. It took us nearly 10 years of ill health and a serious health crisis before we were able to start my son on his path to healing. Even so, it wasn’t the doctors but my partner who uncovered gluten and leaky gut as the root cause of our son’s problems.
It’s been a bit over a year for us and our whole family is changed for the better.
Thank you for sharing your story, and spreading celiac awareness. We are right there with you!
-Joy
i remember. i remember the text and the email, i was praying, wishing i could be there to give you a great big hug. praising Jesus with you for all that He has done in Samuel’s life!!!
God is so good! Thank you for sharing his journey. What a blessing to have FINALLY found a doctor who listened.
You know how much I love your little man. Shared this on FB, hoping that because of his story others might be helped!
Stopping by to let you know that I’m always here praying!
Jeremiah 17:7-8 Blessed is the man that trusteth in the LORD, and whose hope the LORD is. For he shall be as a tree planted by the waters, and that spreadeth out her roots by the river, and shall not see when heat cometh, but her leaf shall be green; and shall not be careful in the year of drought, neither shall cease from yielding fruit.
Prayer Bears
My email address
I was sick my entire life. Always nauseous. Battling stomachaches and diarrhea. When I was 15, they diagnosed me with IBS (Irritable Bowel Syndrome) and told me that I needed to “calm down”. At 19 years old, I weighed 90 lbs. I looked terrible. They put me on stomach relaxers to calm down my stomach. The docs would ask, “What’s going on in your life?” I always thought I was a nervous wreck who couldn’t handle life and was embarrassed of my weakness. After getting married, I had 4 babies in 5 years – but during those 5 years – I also had 3 miscarriages. Two at 24 years old and then another at 28 years old. As I entered my thirties, I continued to see my gastroenterologist that I had seen since I was 19. I told him symptoms were progressing and things were getting worse for me. He told me it was probably the stress of having four children and homeschooling them. Again – I believed I was emotionally weak. By the time I was 35 years old – I was in terrible pain with constant episodes of “gallbladder attacks”. I would go to the hospital and they would look for stones – they wouldn’t see any and send me home. This went on for 6 years. Eventually, I found myself unable to travel or go anywhere because everytime I ate I had horrible diarrhea. The doctors ran a million tests. Sonograms, Hida scans…repeatedly. But basically insisted I needed to relax. 18 months ago – I told my husband I didn’t believe that my “stressful” life was doing this. I was losing weight fast. Couldn’t gain any weight at all. I felt sick all of the time. Exhausted. Depressed. I KNEW something was really wrong. So I changed gastroenterologists. I told her my story. She immediately sent me for celiac blood work. It came back positive. She put me in for an upper endocscopy and biopsied everything. My stomach was inflamed. My esophogus was inflamed. She said my intestines were completely flattened and that I had probably had Celiac Disease since I was four years old. She said I was on the road to lymphoma – no doubt. I had complete malabsorption. It was not in my head. Not ever. But until recently, they didn’t have a diagnosis. I am 42 years old now. I have been completely gluten free for 18 months. I had no idea that you could eat and not feel sick. I have been amazed at my progress. Recently they ran blood work again to check my levels. All appears normal and tremendous progress is being made. I feel normal. I never feel sick. Or tired. Or miserable. I have had 2 of my 4 children tested for Celiac Disease and neither of them show any signs. I will have the other two tested soon. No one should live a life like that. I lived it for nearly 41 years. Your tenacity saved your son’s life. No doubt.
Thanks for this – I am so glad that Samuel is doing so well! Your story resonates with me so much, as I remember holding my (then) 20 month old daughter every evening after dinner as she would vomit and scream in pain. When she would wake up in the middle of the night screaming because she was starving because she couldn’t absorb nutrients. As she became lethargic, pale, her stomach bloated, clingy, and emotional after being the most outgoing and smiley infant. After her growth slowed and she stopped expanding her vocabulary. After yet another visit to the pediatrician who said “it’s just toddler tummy – try those probiotics I suggested.” Compared to now, when my (almost) four year old daughter smiles, laughs, talks (constantly!), is TALL, is HEALTHY, and is no longer in pain. All because of no gluten. Thanks for sharing your son’s story – hopefully other mothers struggling to find answers will see this and advocate for their children too.
Thank you for posting the picture of you at the hospital. I see me in that picture because I looked and felt the same way when my daughter was diagnosed with Type 1 diabetes and later with gluten intolerance. I see the fear and the anger in your eyes but also the determination to save your boy.
Your blog is beautifully written and it inspires me. Thank you.
Thanks for sharing this story and spreading the awareness of Celiac Disease. I myself have received a new life after being diagnosed 4 yrs ago this July. It’s amazing. I thought my life was always going to be just that horrible. I no longer take the energy I have for granted! I have a question. I have a son who I believe might also have celiac. I’ve had him tested twice with blood work. Both time have come back negative. Had your pedi. told you that the blood work is not always accurate? I am thinking of scheduling the upper endo, but an not sure I want to put him through that if I don’t have to. My email is tracy1617@yahoo.com I’d love a response. Thanks 😉
What a blessing to have Samuel healthy and whole today! These people are beautiful. Praise God!
What a beautifully written and sensitive post on your journey. I love how you interspersed the photos in black and white with colour.
My daughter did not get sick until she was a 18. I cannot imagine what I would have done with a baby like you did.
I prayed so hard when Samuel was so sick. I was thankful you finally received the diagnosis. I am thankful that you have made it part of your mission to bring awareness to this cause. So very thankful that Samuel is healthy and happy today!
http://www.theglutenfreeplace.com/celiac-disease-awareness-changes-lives/
I shared your story on my blog and then on FB
Just wanted to say: heavy metal toxicity has been our fam’s problem. I was celiac and so was my husband before we got the dental metal out of our mouths. Conventional dentists will tell you otherwise, but I was literally dying with the metal dental implant in my mouth and my hub was a total mess, too, w/ mercury fillings. Our sons both have ASD symptoms and are celiac and all sorts of food intolerant. But they’re getting better.
Heavy metal testing
chelation (detoxification)
homeopathy
GFCF diet
fresh juicing and supps
have all helped us.
Thank you for sharing and wishing you the best!
Morgan
I have shared your story on my blog and emailed it to many friends and family members. Such an amazing story. One of my daughers went through a 6 month period of not feeling good (tired, pale, poor appetite) when she was 2 and NO ONE would listen to me. Finally, praise God, after 6 or 7 months she began to improve. Now she’s an all too active (smile) 3 1/2 year old but it was so frustrating that no doctors would listen to me and I KNOW something was wrong.
Anyway. I am curious about if the gluten you ate while breastfeeding bothered Samuel? My baby #4 who is 4 months old is wheat/gluten intolerant along with dairy and possibly something else. It’s a trial and error thing. The only symptom is lots of screaming when I eat something that offends her. I don’t think she has Celiac but I am curious about how Samuel did while breastfeeding.
Have a blessed day,
Emily
Its amazing what eating gluten free can do for you.
I look back at photos when I was 9 years old and my stomach was so big I looked like was going to have a baby and I was like 5 months along already.
Although I still battle with issues since milk something I’m allergic to too,but recently discovered rice is a no no too and I have to go TOTALLY off milk anything wiht mil content I TRY to stay away from.
But I’m in awe over the difference over the years and Gods grace on me.
May God Bless your family and Samuel as your family continues to eat gluten free.
I too have a Samuel. My daughter almost 8 has gone down a similar path, a REALLY bad health year with generally low immunity and catching everything going around this year ending up with Glandular Fever and a bad case of Influenza Type A and then RSV after that. COmpletely wiped her out and has had almost half the year off school. All this on top of pneumonia the year before and the year before that and all this even though GF for almost 18mths now. But she is healing. Think all those years of not absorbing nutrients and ‘starving’ has screwed her around and made her vulnerable to catching anything and everything and then it snowballs. But she is gut pain free and symptom free from the pure Coeliac symptoms. Yay! and bloods show vast improvements. Still some sneaky gluten getting in there by the looks so doing what we can to locate and eradicate I thought we were 100% non Gluten but must be something getting in there. Stupid Gluten! She is a great little thing and has largely taken it in her stride, does feel like shes ‘missing out’ sometimes but bears this well. thanks for your words of encouragement and will share Samuels story on my blog and FB page (in a week or so after we move house in the midst of that chaos at the moment)
I just found you. I, too have a child with Celiac Disease. We had a very similar story. She was two when she started failing in health and catching everything and vomiting at night the little she would eat. I thought she was terminal. She is now almost 6, her hair is also thicker and healthier, her slight asthma disappeared, she gets a cold and fights it off like a normal child now and her weight is normal.
I, too, feel like I want to share information about Celiac with other parents that have children, who are not thriving. It’s astonishing that a diet change totally cured her. I am so grateful.
Thank you for sharing your story. You are a fantastic writer.
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