Celiac Disease is serious. So serious that if it remains undiagnosed or untreated serious health problems can result. And in children, that can mean malabsorption issues, cancers, diabetes, additional autoimmune diseases, and more. Celiac Disease is an autoimmune disease. Never to be taken lightly.
I am an advocate for those with Celiac Disease. I am a fighter. And part of fighting is bringing awareness and writing about Celiac Disease.
This is my story. Actually, this is Samuel’s story.
My sweet sweet Samuel has Celiac Disease.
He was diagnosed when he was 16 months old.
He is gluten-free.
Not by choice. But, by absolute necessity. Gluten, a protein found in various grains — such as wheat, barley, rye, and possibly oats — destroys the lining of the intestine in an individual with Celiac Disease.
During biopsy the gastroenterologist checked various enzyme levels in Samuel’s gut. A healthy level of lactase would be around 25 uM/min/gram protein. Anything under 15 is low.
Samuel was at 1.2 — that is dangerously low.
Every single number –sucrase, maltase, palatinase — mirrored the low numbers of lactase.
It was frightening.
He was absorbing almost nothing.
He was days away from having a port installed and being fed nutrients via an iv.
Yet, for months prior to diagnosis I was dismissed by the medical community. He was having rectal bleeding, rashes, lethargy, and at the end point was even unable to walk without stumbling. I was told he was constipated. Or that he was simply sick because he was part of a large family. Or to keep a journal longer because he just might be in a phase and not to worry. “Babies can be finicky,” they’d tell me.
Samuel lost 3 pounds in 3 weeks.
Samuel was then only 21 pounds.
He lost a 1/2 pound in 2 days.
In an individual with Celiac Disease the villi — which are the hairs lining your duodonem and small intestine — became flattened. In a healthy individual they are thick, like a shag carpet, and absorb nutrients. In a Celiac patient they are like a tile floor. Nutrients slip by. Vitamins. Minerals. Protein.
The body is starving. Even though they are eating.
Samuel was low on vitamin d, zinc, protein, iron, potassium, and more.
Gluten was destroying his body.
In the ER the doctor was confrontational with me. Even though I walked in with a baby whose core temperature was 96.2 degrees. His body was slowing down. He was sleepy. He didn’t fight when they put an iv in him. He just rested on the cot. Staring. I was told he was such a good boy — he wasn’t being good — he was sick. He should have fought, put up a fuss when they jabbed him. He had no energy to even do that. They were going to discharge him, let him go home, with the orders for me to stop breastfeeding him as “that was giving him inadequate nutrition” and that instead I should go feed him whole grains and dairy.
I found out less than 24 hours later that breastfeeding was one of the only sources of nutrition that Samuel had during those weeks prior. Any food besides breastmilk caused him tremendous pain. Yet, that couldn’t sustain a 16 month old — it helped him, saved him, but he needed more nutrition.
That was why he couldn’t sleep. That was why he was hungry all the time.
Yet, the doctor was reluctant to even test for Celiac Disease. They told me he was too young. That babies get diaper rashes. That they get sleepy. The nurses pushed.
I could hear the nurses and doctors arguing. The nurses kept saying that he needs to be here.
In fact, one of the nurses came in {when the doctor was out}and grabbed my hands and told me not to leave this hospital. To stay and fight for Samuel.
And from that moment on I wouldn’t leave.
They admitted him.
I met with the GI doctor. He too, was initially skeptical. They ran more tests, and an ultrasound. Samuel just slept and slept. The nurses on the floor couldn’t believe how quiet he was. He was sick. Not quiet.
They all looked at me like I was just a bit paranoid.
Until the lab results came back. Elevated.
Serum gliadin IgG, gliadin IgA, and more. All indicative and pointing to Celiac Disease.
Still they discharged me.
Then the next morning, at 7:20 am I get a frantic call from the GI Doctor asking if Samuel had eaten. He had. The doctor wanted to do a biopsy immediately, and was wishing we hadn’t been discharged. So did I. All of a sudden Samuel’s case became urgent. And I quickly lost the title of paranoid mom only to be replaced by the “mom who knew.” They should listen. It shouldn’t be such a fight.
We had one last day of home. One last meal of gluten for Samuel. His last supper, in a way.
He had to eat gluten that day. It was so hard for me to feed it to him when I knew it was hurting him. They needed gluten in his system for the biopsy. So he tried to eat his favorite — spaghetti and sauce. He only managed a couple of bites before his belly started to bother him again.
Biopsy was in the morning. The doctor, who once was skeptical, was now an advocate.
Caring. Kind. Thorough.
We were going to figure this out.
As I walked into the Operating Room with my scrubs on I felt so afraid. And yet at peace. The room was full of people. I sat in this chair and just prayed, holding my Samuel, while they put him to sleep. I kissed him goodbye, smiled bravely at the surgeon, and walked out.
With tears in my eyes.
Tears of hope.
They were fighting for him now.
Celiac Disease is different than an allergy to gluten. It is critical to determine if an individual actually has true Celiac Disease because even a trace amount of gluten causes tremendous damage to the intestine. The only treatment for someone with Celiac Disease is to remain completely gluten-free. This is extremely challenging as gluten is in many common foods — salad dressings, processed foods, luncheon meats, sauces, marinades, candy, broth, cereal, medicines, make-up, playdough and more.
I cannot leave Samuel in the nursery in our church because I cannot risk him eating one goldfish cracker dropped by another child. That is how serious this is.
I’m going to write more of Samuel’s story in the days and weeks to come. Getting the diagnosis was only the beginning as he ended up back in the hospital in Celiac Crisis, and then dealt with 6 weeks of being semi-isolated due to his compromised immune system.
Please share my story with those around you — so that others can be aware and can fight for little ones who might have Celiac Disease. And please email me if you have any questions regarding Celiac Disease or living gluten-free. I am more than willing to respond. In fact, I want to help. To listen.
I am so grateful for all the prayers that have covered Samuel in the past two months.
28 comments
Rachel. What you are going through with sweet Sam makes me cry as I read this…it hits so close to home because as you know, Christian and he are SO close in age. I can’t imagine going through this. I am so glad that you are strong and that you ARE a fighter. Last night I did my bible study on things that cause me to worry (what mom doesn’t??) and I chose to give that to God. As hard as it is I know that you can/have/will give Sam’s sickness to God. I will continue to pray for that adorable little boy that he will be able to overcome this disease and live life without these problems. I feel silly trying to give words of advice to a mother that has seven times more children than I do and to a woman who has a faith that seems to blow mine out of the water…but I just want you to know that I am thinking and praying for you and Sam.
Wow. I didn’t realize how gluten is in so much! Thank you for explaining this so clearly. I will be in prayer.
You brought me to tears, Rachel. Praying nobody else has to go through this struggle you did to find out the problem. Sharing this too. Thank you. And, of course, praying.
Good for you…my best friend has coeliac disease and wasn’t diagnosed till recently….she has suffered with many health problems as a result. It was masked for a long time because she has a heart problem as well. As her friend I have made small changes to support her…I bake cookies she can eat, store gluten free bread in the freezer for when she comes over and frequent gluten free cafes with her. Having friends onside that can support you too will make life easier. There is still so much awareness that needs to be raised in this area, especially in the fast food industry. Love that you are advocating this cause and being the change 🙂
Momma’s just know. Praise God! You fought for your baby boy and now he is on the road to healing! I pray his little body is restored very soon and that the gluten free life gets easier as time goes on (it will!). You’re a wonderful mommy Rachel.
Continued prayers for Samuel and the rest of you as you support him on this journey.
Love,
Lynnette
Rachel, way to fight for your babe. Way to be a Momma bear. Way to be persistent. Way to PRAY Him thru…like the gal said above…A MOMMA KNOWS!!
Samuel, he is precious, keep fighting!
How are the other kids taking the ‘food’ change? I am sure you have had to change it up for the whole family as well.
Marlece
What a touching and heartfelt story…your desire to FIGHT for him and battle this with him is beautiful. You don’t realize how much gluten effects your lifestyle…until you have to be without it. Thanks for sharing so openly and for giving us some insight into what you guys deal with. Keep fighting!
I have been following your story, quietly in the background, for months. Before Samuel was so sick. It has truly been inspiring to see you fight for your child like you have. I pray that as you write your story that it will help others who are dealing with this also.
JoAnn
Yes, gluten is in everything!!! So few people realize. I’m so thankful the docs finally found their senses and got to the bottom of this. I’m sad that Samuel will always have to have a strict and careful diet. But thank goodness he can be healthy! Please continue to keep sharing. I’m praying and always admiring your mothering. : )
Ps. Hunter has been sick since Dec and has had a fever for 6 wks. I know how hard it is when docs are dismissive. “Oh, it’s just another virus or something.” ahhh! We finally got blood work done after doc agreed that he’s had a fever much too long. Most all the results are normal (including leukemia – thank God! ) we’re just still waiting on the auto-immune disease results. All that to say I may indeed have questions for you!
I am very happy to hear that all has been found out and Samuel is on the mend!
I am continuing to pray for your little boy!
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(((Hugs))) I am so glad you fought. Moms *do* know. We went through a different, yet somewhat similar fight with Caleb. He screamed – a lot. The doctors said it was his reflux. And, he did have bad reflux, but this was different. I knew this pain, this scream. This was his brain. It took months to get a confirmation and we’re still 17 days away from his brain surgery, but soon we can relieve some of his pain. His underlying issues will still be there, but the acute pain – we can help with that!
‘Ol Blue eyes and his family will always be in my prayers…You all hold such a special place in my heart <3 —Angie
Rachel~ The pictures of your sweet Samuel made my mommy heart ache for you and him. You are so right, Mama’s do know their children!! Good for you fighting for him.
hugs to you both~ Cinnamon
I have no words. Just tears.
I, too, am glad you are sharing this story. It’s a crime that doctors can be so dismissive. I pestered our dr. for two years before he did a basic food allergy panel and found that my daughter is allergic to egg.
Now – with my 12 mo – I feel like I am about to enter the pestering phase again. He wakes and wants to nurse 2-4 times a night. He is crabby during the day. His stool alternate between quite hard and very loose. It seems to me that something is not quite right but I am afraid to seem like a paranoid mom.
He has a well visit tomorrow. What would you advise moms to ask their doctor for if they are concerned about tummy troubles?
Rachel, Samuel’s story is the reason I found your blog not too long ago. Someone (on a blog – I can’t remember which) asked for prayer requests when you were in the thick of this…and pray I did. So proud to see you fight for your sweet boy. Continuing to pray for all of you on this journey. Thank you for sharing this important story, and for the blessing of your blog.
Your story will touch home with many people. My J is 17 months old and after 6 months of him constantly getting sick every other wk we have finally got blood work, stool test and soon allergy test. He has been in this constant cycle of first a rash on his bottom for a few days, then a fever for 3-4 days 103.7-105 which usually resulted in congestion and horrible cough and throwing up for 2 days.
Asthma runs in my family so his doctor would push it off as that or he keeps catching stuff. Perhaps because he is in daycare. He developed pneumonia at one point because he got so bad.
I kept going back wk after wk with his fevers, etc. I mentioned allergies and was told no dont worry about that its viral. Ignoring me when Id say this all started at 12 months when I stopped breastfeeding and he went to milk and solids. Should I ty Soy? No dont wory ts viral. Sent home from the ER told just fever control.
One wk later when I got the call he had a temp of 104 like I got EVERYWEEK I said that was it and called a new pedi. I walked in, stated his history and was out in 30 min. with 5 labs to be ran. Someone has finally listened. A child who hadnt had one cold until he was 12 monhs and now its.constany in the same pattern every time every.wk or 2 – something isnt right and I knew it.
Now we wait which I know ur familiar with. But at.least someone listened but I had planned to make thek if they didnt. U inspired me. As I would read ur post and watch J get sick again Id think I needed to man up and demand. But who was I, they r the doctors. But I am the Mom and God gave us that gift, not them!
Thank u for sharing ur story and I pray each day for ur family. There are so many paranoid parents looking or the ones looking for some magic drug that doctors start to dismiss everyone and ignore a mothers instinct. Ur story helps .mothers realize they can fight and they.can get answers. Thank u so much!
I can see why this was your most read post. Powerful, informative and heartfelt. I’m so glad they finally listened and found out what it was! How truly frightening it must have been for you. Thanks for sharing your story to help others be aware of the risks, signs and resolve needed to find treatment!
~Lori
Oh, poor baby! I don’t have any experience with these things at all, but I know when a mama knows something is wrong, a good doctor will listen. So glad you at least found out what was wrong before it was too late! (((hugs))) for that sweet boy and his precious mama. (And really, because he was part of a large family?? Did they think you guys were just eating up all the food so he couldn’t get any? How ridiculous!)
I have seven siblings, five between the ages of eight years and three months. most people say i have fierce maternal instincts, even though i’m only seventeen. I just wanted to tell you how proud your message has made me. it has also added to my growing spirit of awareness. Thank you for your testimony. Thank you for fighting. (And thank you for the pictures. What caught my eye was the binky. My two year old brother has the same one, and it made me realize how easily it could’ve been him.)
Blessings. 🙂
Thank you for this post. Doctors just don’t know enough about Celiac. My daughter who is now 4yrs old was diagnosed with celiac at 18 months of age. She had been vomiting on and off for about 4 weeks, she was losing weight, had extremely puffy feet. I was being told that she had a stomach bug. During that time I had a second opinion done and that doctor ran blood work immediately (not for celiac yet) it came back a complete mess. Levels for everything were off. She was not absorbing protien(puffy feet) and it appeared that something was attacking the outer lining of her kidneys. So he admitted her into the hospital immediately and ran all kinds of tests. Cat scans, mri, spinal tap, ultrasounds, blood work. It wasn’t until the
5th day in the hospital that they ran a celiac panel that came back extremely elevated. Then they did an endoscopy and colonoscopy which also came back as celiac. They also tried blaming me for not feeding her because I was still nursing her. She was 17 lbs at 18 months now she is 42 llbs at 4 years old.
I know this is an older post, but I’m just reading it now. Sweet lady, what you and your family must have been feeling! I’m so glad that you kept fighting, and that the nurses fought for you until the doctor was on board. I know they have years of medical knowledge, but a momma knows her child. She KNOWS when something is wrong – it hurts my heart to think how long you had been dismissed before they decided to look further!
And the sweet pictures of your little boy….I just want to plaster those chubby cheeks with kisses.
I am so sorry for your struggle, but so thankful that you’re educating the rest of us on this serious disease. Praying for you!
Rachel, thanks for sharing Sam’s story and THANK YOU for writing about and raising awareness of coeliac disease. There are so many attitudes about it, so little knowledge, so little understanding. People don’t understand the seriousness of the disease. Many don’t even see it as an autoimmune disease but as whatever allergy or food sensitivity. You remind me that I have to fight for awareness!! I’ve been quiet about it lately.
Also, I’m so, so glad that your little one was finally diagnosed, but so sorry he had to have this disease. It sucks big time.
Hi Rachel thank you for sharing your story. My 18 month daughter has just been diagnosed with coeliac disease and am still in a state of bewilderment at what this means. Your words have really helped as after three months of fighting to find out why she was so ill I was relieved to have an answer but as it sinks in am scared about what we do next and am glad that I found your story. Wishing you all well, Julie x
Your story with little Samuel mimics my daughter’s story. We needed the feeding tube… but got a diagnosis in the midst. A blessing to have answers and the means to help our little ones!
My 2 year old daughter was diagnosed 3 weeks ago.She weighed 18 pounds and gained 2.5 pounds in a year! She was just not growing. We live in Germany and eat A LOT of bread and gluten filled foods. I was constantly trying to get her to gain weight, so we gave her lots of breads and pastas, only for her to turn around and poop 10 minutes after eating and it was a HORRIBLE, HORRIBLE smell. She was so tiny and had this HUGE belly. I didn’t even know about Celiac diseaes. I was so desperate. She would wake up at night and be shaky so I would give her banana, juice, ANYTHING. I would jump out of bed at night and just wake her up to feed her because I didn’t know what was wrong. Her blood work came back as high as it could be. The fat levels in her stool were off the charts as well. The doctor suggested that we skip the biopsy because we would have to continue giving her gluten. 3 days gluten free and she started changing. She was sleeping so long, happier….3 weeks gluten free and my husband and I look at her and wonder who this hyper, jumping around, laughing child is! The one who wants to actually walk when we are on walks and seems to have so much energy she doesn’t know what to do with it! I still get emotional when I stop and look at my now thriving little girl. The one who can play with her big brother. The one who doesn’t look like her 5 month old, 16 pound baby sister should be holding her! 😉 She has gained almost 3 pounds now! She is losing that big belly and growing taller. I am with you fighting for our little ones with celiac! –Whitney
My 2 year old daughter was diagnosed 3 weeks ago.She weighed 18 pounds and gained 2.5 pounds in a year! She was just not growing. We live in Germany and eat A LOT of bread and gluten filled foods. I was constantly trying to get her to gain weight, so we gave her lots of breads and pastas, only for her to turn around and poop 10 minutes after eating and it was a HORRIBLE, HORRIBLE smell. She was so tiny and had this HUGE belly. I didn’t even know about Celiac diseaes. I was so desperate. She would wake up at night and be shaky so I would give her banana, juice, ANYTHING. I would jump out of bed at night and just wake her up to feed her because I didn’t know what was wrong. Her blood work came back as high as it could be. The fat levels in her stool were off the charts as well. The doctor suggested that we skip the biopsy because we would have to continue giving her gluten. 3 days gluten free and she started changing. She was sleeping so long, happier….3 weeks gluten free and my husband and I look at her and wonder who this hyper, jumping around, laughing child is! The one who wants to actually walk when we are on walks and seems to have so much energy she doesn’t know what to do with it! I still get emotional when I stop and look at my now thriving little girl. The one who can play with her big brother. The one who doesn’t look like her 5 month old, 16 pound baby sister should be holding her! 😉 She has gained almost 3 pounds now! She is losing that big belly and growing taller. I am with you fighting for our little ones with celiac! –Whitney
You cannot believe the tears as I remember going through this exact thing with my youngest son. He is so sensitive to gluten that I believe he was still getting it through the breast milk and when he started eating for himself is when I realized something was truly wrong. He did all of the same things your sweet boy did and finally he choked in the nursery of our church. He had to be revived three times and they STILL sent him home. By this time we found a GI Dr. that would listen and was right on the ball as soon as he heard our case. Little known to us, but our oldest son also has Celiacs and his throat was SLOWLY closing.
I am so thankful for your blog and how you are trying to help people become more aware to their children. They may be saying,”I don’t want that or I’m not hungry.” but their really saying,”It hurts when I eat that.”