A baby diagnosed with GERD, a tired mother who kept fighting for answers, and a new beginning. Today’s post is from Cherie, a reader of this blog who originally shared her story with me via email. She willingly agreed to share her story publicly, knowing that her difficult journey could help others to avoid the pain that her daughter and her family went through. Thank you Cherie.
My name is Cherie. In 2007 I gave birth to our second child, a beautiful baby girl. She came quickly and was just perfect. Little did I know that this would begin an often difficult and heart wrenching journey. It started right away. Because of a surgery I had when I was younger I was unable to breastfeed my babies. So the nurse gave me some formula for Abigail, but she would not eat it. I should have know something was up — our son, born less then 2 years earlier, ate his first bottle like nothing. But not Abigail. She just would not eat. She just wanted to sleep. We tried so many different things to get her to drink. Finally a nurse decide to try putting the formula in a little medicine cup and putting drops on her lips. Eventually, she started drinking, but we ended up staying in the hospital for 5 days.
When we got home, her feeding issues continued. She never wanted to eat. And when she did she would cry and scream. She would violently spit up. She would throw up. Off to the pediatrician we went. She was diagnosed with GERD. Then put on Zantac. It did not really help. She was still crying and screaming, when I could get her to eat. It was so difficult for me. I was a stay at home Mum, and had Connor who was not even 2 yet. My husband worked a lot and I felt so overwhelmed with this little one who would just scream for hours on end. Abigail needed to be constantly held. She never, I mean NEVER, slept. She would sleep for 20 minutes to half an hour at a time, even at night time. She never napped. When she did sleep she would reflux in her sleep and start gagging and often turned blue from everything settling in in her mouth and throat. I was scared to death to let her sleep in her room because I thought she would choke to death. We did all the typical things: raised her bed, tried to tuck her in so she would not slide down. Nothing really helped.
Finally, after going to the doctor for the millionth time, I took her to the ER. (We live about 45 minutes from the doctor, so every time I would load her up in her screaming pain, she would get comfy in the car and be all calm by the time I got there. This would lead to a “crazy Mommy” label that I am sure was passed around the office.) I refused to leave the ER without some answers. They were not very happy with me. But they did an x-ray (I am sure to pacify me and get me out of there). During the x-ray they found that her whole stomach area was black and hazy on the picture. That meant she was full of gas. And they found that her stool was backed up all through her intestines. I had no idea how this could happen since she was regularly having movements. The doctor said she need to go on a milk and soy-free formula. It was the most foul smelling stuff ever. But she finally would drink it. I believe this was about the age of 3 months.
We discussed with her pediatrician what to do next. We have an amazing pediatrician, but I am sure some of that “Loony Mum” label led her to a more wait-and-see approach. We have PPO insurance, so we decided we would just schedule a consult with a Pediatric Gastroenterologist ourselves. We found a great one in Portland, Maine. She put Abigail on Prevacid (and Zantac, at times) and we scheduled an endoscope. I must say, that it is the worst feeling in the world, placing a gas mask on your 5 month old baby and leaving her there with the nursing staff. After the endoscope, she had a bad reaction to the medicine, and ended up violently throwing up and choking on her throw up. She turned blue and was ripped from my arms by the nurse to suction her mouth and throat out. Eventually, she recovered and we were sent home.
Over the next 2 years we tried different medicines for the GERD. On one, off another. At one point we took her off all meds, hoping that she would just grow out of it. It did not happen. She just would not really eat much. Another thing that was a bit of an anomaly was that she was growing well. She was super smart and meeting every milestone. So a lot of responses I got, like the New Year’s Eve night we spent admitted to the hospital, “she is too cute to be sick!” My response: give her 5 minutes and she will be throwing up everywhere! During this time she was still not sleeping very much. Her little belly was so distended and hard she looked like she was having a baby. She would only eat a few things … of course they were all the heavily gluten-containing foods like bread, crackers and stuff. Her emotional state was just off the wall. She would cry if you looked at her the wrong way. She would be so happy one minute and violently upset the next. She would throw things and scream at you. And being so young, it was even more difficult because she could not just tell me what was going on. We always just said, “well, she is a girl.” Or she is just “picky.” All those typical labels. Another thing was that she had was a rash around her mouth. I also thought it was from her pacifier but when the pacifier went away the rash would still appear.
In June of last year we did her second endoscope. Her gastroenterologist wanted to check to make sure her reflux was not doing too much damage. She had not been feeling well, and was getting sick more often. She just was not her “normal” that I was used too. I got a call from the doctor saying we would like you to come on in. Hmm … my stomach started churning. (Now, I went to college for medical assisting and human services, so I have some knowledge of medical terms and anatomy.) So she started talking to me about how they found damage in her intestines and that it was too severe to her villi to just be from acid reflux. It is probably from Celiac Disease. OK …what now??? Should we take her off all gluten? Should we wait? What in the world do I do now? I went home, shocked and scared to death. I am the type of person who needs information. I need to know everything, the good and the bad. So I started googling. And I read everything I could find. The next day I took her for an appointment to her pediatrician, and relayed all the info I received. We agreed she needed to come off all gluten … now!
So that started our journey into GF life. It has been a crazy one. I went out and bought a bunch of stuff … something I do not recommend. I spent hundreds of dollars, something that is unfortunately, unavoidable. But I needed food for her. I did not know what kind … just food. In all my research I did in those first days I never looked at what others thought was good food. I just needed to know what she could eat.
I am telling you this with all honestly, and mean this very literally. Within days … yes, days … she was sleeping through the night. She was eating. She was HAPPY! The change was remarkable. I could barely believe it. I am sure if someone were to tell me this story I would say “Ya right!” Without seeing such a dramatic change with your own eyes it is very difficult to understand. We have not been back to her gastroenterologist yet (we have appointment this month) but I have spoken with the nurses on the phone. And even they cannot believe it.
It has been about 6 months now since we started and she is off gluten. I have to be honest and say that she does get some, though not intentionally. But I can always tell when she has had something she is not supposed to. She complains of her belly hurting. She gets very upset and cranky. And that pesky rash usually comes back. I must say, I was scared at how she would do, not being able to eat her favorite things, since she is only 3. She took to it like nothing. She is so PROUD to be GF and tells anyone who will listen. I have found ways to make all those favorites and we all eat a lot better now.
One of the most challenging things, though, is other people. For some reason some people think this is not a real disease. That she does not really need to not eat gluten. It is like they think it will not hurt her. Well, I tell them, “you come by my house tonight when she is crying in pain and throwing up because you think she needs to eat that gluten filled food!” There are those who cannot take the time to research it, or just listen when it is explained to them. It is very tough. Thankfully Abigail knows, though it is not as easy as her knowing she cannot eat peanuts, because she still eats bread, just GF bread. So it is a bit harder. I take every precaution to insure she is eating safely. I call ahead to birthday parties and family gatherings to see what they are having. I make the same thing for her (or as close as I can) so that she does not feel odd or left out. I never expect that someone should make something completely different for her, but some in my family do that or they choose to have something that is just naturally GF. And that is so amazing.
It has been a difficult journey, but one I am so glad we are taking now and not after years and years of her suffering. And I know it is just the beginning. If I could tell you one thing: listen to yourself. No one knows your child like you. Fight for them at all costs. It does not matter how crazy everyone thinks you are as long as you find out what is wrong with your child. There is absolutely nothing more important.
So that is our story, so far. I hope that by reading it you get a little light into Our Gluten Free Life! It is not a typical one, but it is ours and I love it.
— Cherie
I love a happy ending-beginning! If you have a story of symptoms and diagnosis related to celiac disease, gluten intolerance or food allergies that you would like to share, please email me.
Shirley @ gfe says
What an amazing story of recovery! Thank you Cherie and Alison for sharing Abigail’s story! My heart goes out to you Cherie for all you went through and it certainly makes one think twice about the often shared statement that babies cannot be born with celiac (that one has to have celiac genes, be eating gluten, and have a trigger event). Abigail is beautiful and so happy looking! I so love that she totally embraced being gluten free. She knows how good she feels when eating gluten free. So many moms see GERD and the other symptoms you shared that she experiences when she eats gluten accidentally and just think they have a difficult, finnicky, and sickly child. I’ll be sharing Abigail’s story on my blog, Facebook page, and with my support group. Thank you again so very much for sharing it; doing so will help many!
Hugs,
Shirley
Shelly says
Thank you alison for sharing Cherie’s story, one I am all too familiar with, I am that loony mom!!! And, I am so glad, Cherie that you just did not settle for the let’s just wait and see, you took maters into your own hands. I hope others mom’s read your story and do the same! I love the picture of Abigail with that smile that jut grabs you! She is a lucky little girl to have an awesome mommy like you!
Cherie says
Thank you so much for you nice comments. And thank you Alison, for believing Abigail’s Story would be of interest to all your readers. I hope that is does give inspiration to others to keep pushing on for those answers. It was hard to write, hard to know what to include. I am sure it could have been written better, but it captures our life. I am very blessed to have an amazing husband, family, especially my Mum, and friends to be there to listen to all my complaints, crying and frustration. I am truly blessed. Despite it all, Abigail is a truly amazing little girl who loves her very best friend, big brother Connor, more then anything. I do not think I could have asked for anything more. Again, thank you all for taking the time to read Abigail’s Story.
Melody says
Thank you for sharing your story! We went through something very similar, and thankfully I discovered my own problems with Gluten and other allergies when we were knee deep in my daughters. A lightbulb clicked, and we’ve all been much healthier and happier since. So glad to hear your daughter is doing well, and best wishes to your family!
KT says
My son’s symptoms did not start until elementary school. He went from one GERD medicine to another. In middle schoolt he dentist said his teeth were really bad and the GERD medicine was not working. Went to the pediatrician and she said he was bulemic. Really, this kid hates to throw up. A neighbor had just started her pediatric gastro residency. I asked for her advise and she suggested Celiac testing. Yup, after 6 years of GERD medicine we find out the kid is a Celiac. Now, he will tell you he doesn’t feel any different. However, the semester before he was diagnosed he missed 5 days of school. After the diagnoses 2 days of school. I think he is feeling better.
Glad your little girl’s health has improved.
Cherie says
Thank you all for reading Abigail’s Story and sharing your thoughts and nice comments. I really appreciate it.
stephanie says
Cherie
This story is eerily similar to the story of my son, now aged 6. We didn’t find out until he was 3 – and it was incredibly difficult. After being diagnosed with GERD he developed 30 different food sensitivities (from the Prevacid). His little body was so damaged. He is still recovering – but doing beautifully. It’s wonderful to see how far he has come. That he can wake up every day and live life to its potential.
It takes a lot of courage to share a story like this. And a lot of perseverance to not stop until someone gave you an answer. You’re a super-star my friend ! Such love you have for your daughter. She is so lucky to have you as a mom. Never forget that 🙂
Stephanie
Alison says
Cherie,
I’m so glad you shared your story – amazing response so far and I know that it will help so many people. 🙂
Cherie says
Thank you, again, everyone. You have all been so amazing. I really hope that Abigail’s Story can give even one person the extra push they need to keep pushing their doctor. No child should have to suffer this pain just because a doctor wants to just “fix” the current problem. Find out why the problem is occurring and make them better as a whole. Thank you again! xo
Erin says
Cherie, Thanks for sharing! This is exactly the same scenario we had with our first daughter. One time a pediatrician looked at me like I was crazy and sighed, “Babies cry.” We found a new pediatrician and an amazing gastroenterologist. My little girl is five now and the absolute sweetest thing! She is a joy and also loves telling everyone she eats gluten-free! I feel your pain and I know it is such a relief to finally have the magic answer!
Cherie says
Erin, oh how many times I heard that same sentence, “Babies Cry!” Really??? I know that I have another one at home! So frustrating. I am so happy that your daughter is doing so well now. I think it is so great to have them grow GF, to be so proud of it. And to not be in pain! Thanks for reading our story, and sharing yours.
Diane says
I appreciate you posting your story! My two year old daughter has had a similar journey. We too were put on the yucky formulas. At eight months I took her off, not without much resistance from others, put her on raw goat milk. I knew I had to do something, and it helped tremendously. Constipation and gas was still a problem, but not anymore! This past week our house went Gluten Free, Dairy Free, and even kicked some grains. She is sleeping through the night, is no longer constipated, and I just wish we would have done this a long time ago! I’m so happy for your sweet little girl too!
Cherie says
Diane, thank you. I think it is truly amazing that gluten can cause a child to not sleep! I would have never believed it had I not seen it. And so quickly, the change. I am glad things are working out for you. It is a tough road, but so worth it!!
Jessica says
Thank you for your story! Gosh, if only I would have known this years ago. My son had so many similarities, but I think it was masked with other problems. I was nursing, if I would have known to give up gluten, I would have. But, I hardly had time to research since I couldn’t put my son down. He had reflux and I think this caused his ear infections which is what we thought he was in so much pain for (since birth). He naturally has a low gluten diet now because he is so picky (he eats fruit, veges, and white rice most of the time). I think I might try to make my whole house gluten free.
Cherie says
Jessica,
Oh, how I know the feeling of being not able to put your baby down. It was much of my life! I never knew about gluten before all this. It is only now, that she has gotten bigger, that I started researching so much. Before, I felt like nothing would ever make her better. If it is possible for you to go GF, I would try it. It is something that you may see results rather quickly. I am very serious when I say, I noticed within days. She felt so much. I wish you good luck and thank you for reading Abigail’s Story.
SHoffman says
I know that I went through years of these symptoms in myself (what you are describing). I cannot imagine how horrible it would be to go through it as a mother and baby. My heart goes out to you! AND…I immediately felt 100% better within days so I totally believe you.
Cherie says
Thank you! I am glad you figured it all out. And it was very hard as a mother, emotionally because my heart was breaking for her everyday, physically, because I was exhausted and mentally because I was often thought of as being “crazy” , too emotional or depressed! But the happiness I felt when she was feeling better, the smile on her face… makes up for everything! Thanks for reading Abigail’s Story and your nice comment.
Marie says
Hi Cherie,
As I read your story tonight, I was immediately transported back to 1984 when we went through almost exactly what you described. You have put into words some of the things that I never really forgot about caring for our daughter. I am reminded of never being able to sleep, and never being able to put her down, and never being able to understand why she cried and projectile vomited, and no one understanding me when I knew something was wrong. We had a 3 1/2 year old at the time and we knew this was not normal. The way we even found out about Celiac Disease was that my Mom had a friend who had been diagnosed a few years earlier. After we talked to her we took all the information to our doctor. He was wonderful but honest in telling us that he had no experience with this disease. He told us to try the diet. In 1984 there were no blood tests, but I read that babies were sometimes “diagnosed by diet”, which I don’t recommend in this time of doctors who know about Celiac Disease. I, for years have always carried a brochure about Celiac Disease to our doctors who were never taught about it and tried to explain the disease to people who gave her gluten anyway either because they didn’t know what was in what they were giving her or they thought a little shouldn’t hurt her, or this can’t be true because they never heard of a disease like this! Back then they plotted the baby’s weight and height at the doctor’s office on a graph. My baby’s points were plotted down in the words that told who developed the graph. She was 13 pounds at a year old and looked just as you described your little girl. When we found out about Celiac Disease she was 13 months old. I depended on my Mom’s friend for recipes (no mixes; I found a health food store that would order rice flour for me; I never heard of xanthan or guar gum; everything fell apart; I had to beg for rice cakes at the local Safeway, and the manager finally said he would order it because several people were asking for it (Could it have been me over and over and over again?); and no internet(Not that we could have afforded it anyway.). I went to the library to do my research and found 2 pages in a book about Celiac Disease and 2 recipes to copy. As I read the description I thought they must have had a way to see my baby because they were describing her to a tee. My Mom’s friend told me about a group in Iowa who had a newsletter that I could get in the mail and that had some recipes. I finally got pretty good at making crackers and we had a bread recipe and baked bread in small Pyrex dishes twice a week for many years. That recipe still makes great donuts. I finally figured out while nursing her that if I ate something with gluten it went through my milk and she had reactions. I realized this when I ate a brownie that my Mom had brought that was not gluten free after just about a month on the diet, that I had brain fog all my life and wondered how I ever got through college and 2 years of post baccalaureate work. I have read the research that says that gluten doesn’t go through the breast milk, but I am here to tell you I experienced it. That is when I realized that I had Celiac Disease which was confirmed by biopsy 13 years later. I know exactly what you mean about how she began to get better. She was a different child and for the first time in her young life of 14 months she wanted down on the floor to play. That was after a month eating what we thought was gluten free, and found later we made lots of mistakes. No more constant crying and trying to get through tiny spaces that her tiny head wouldn’t fit through to come to me and just screaming and continually banging her head as she tried to crawl through that tiny space. It was an amazing thing to watch when she finally got better but hard to explain to someone who wasn’t there. I will always say that my Mom’s friend saved my daughter’s life. I realized she was dying when they diagnosed her as failure to thrive. I sometimes look at her now with disbelief. She is very much alive! She is happily married and has taught Kindergarten for 5 years. She has had several students who are on special diets and one eating gluten free. She spends her own time and money to make sure those children who need gluten free or other special diets get what everyone else is getting or that they aren’t exposed to things they are allergic to. We made it through all the birthday parties, all the school years and even had a completely gluten free wedding for her 3 years ago. It was beautiful and so was she! (Everyone raved about the delicious GF food.) This time will pass and someday you will wonder where the time went and then someone will remind you how lucky you are by writing a heart-wrenching article with descriptions you almost forgot. You will probably write to them, with tears streaming down your face as you remember how hard it was, and because you want to support them as you were supported. Good Luck, Cherie. There are so many wonderful days ahead. Embrace every day!
Marie:)
Gluten Free for 27 years
Cherie says
Marie,
I am very thankful that we live in this time. I think I would have been too overwhelmed and undereducated to deal with all these issues back when my Mother had me. I commend you for figuring it all out. You are a very strong, and brave woman. Your daughter is very lucky.
I have tears in my eyes often, when recalling what we have gone through. And when reading other people’s comments and amazing stories. I cherish everyday, knowing that each one is special and am so thankful for our life. No matter what challenges we have or will face. I would not change anything. Everything happens for a reason. Thank you so very much for reading Abigail’s Story and sharing yours. I am very grateful!
Cherie
sara says
I am wondering about the mom who said Prevacid caused food sensitivities in their child. My 17 pound one year old has terrible GERD, is on 45 mg of Prevacid and we found out she is allergic to wheat. We have to hold her for naps, she sleeps restlessly, has stomach pains, we have to burp her constantly. I’m hoping going gf will do the trick!
Cherie says
Sara, I hope that going GF helps your daughter. My daughter is on Prevacid for about 6 mths at a time then on Zantac. I never knew about the Prevacid doing that. But I do know that the doctors have always told me they do not exactly what the long term effects are. I am actually going to bring this up again when we go see her gastro. Good Luck!!
PS…I always had to hold Abigail for naps! I remember it well!
cathleen says
I have a question for you, Did abagil have gerd as well as celeac disease? As an infant, you were giving formula only so is there gluten in formula? What caused the vomiting in infancy if it was not gluten from BM? I have a baby with GERD 7 mo on Prevacid right now, we have tried zantac, prilosec and prevacid, it seems to be getting worse NOT better. She is BF and supplimented with alamentum formula. For about 4 months I cut gluten, dairy, soy, citris, peanuts out of my diet at first it seemed to help, I really thought the gluten free was the problem, but then the vomiting started again, I have started gluten in my diet again because it didn seem to help any longer. Any suggestions. She does not have bloated stomach or pain, just vomit and NO wait gain 7 months and 12.5 lbs.
Cherie says
Cathleen,
Abigail does have GERD and CD. She was diagnosed very early with GERD. We are currently trying her off of meds (at age 4) and I am not sure if it is going to work. I am not sure what caused her vomiting, but I am guessing it was the GERD bringing everything up? She was started on solids very young, maybe 4 mths or so. We flip between the Zantac and Prevacid. Abigail had no real growing issues, that is one big problem I had with the docs. She looks good, she is growing but she was still so sick. Do you have a good GI? If not, I recommend finding one. We had a great pediatrician, but really did not get anywhere till we saw our GI. Also, I have found that there are many different symptoms for CD. So even though it has seemed to stop helping, it really may not have been. I wish I could be of more help to you. I wish you lots of luck!!
~Cherie
Brandi Heath says
I know this is two years old but your story sounds just like my 14mo old son!! He has not been diagnosed with Celiac they say hes to young….My sons eating is to the point we have to have a feeding tube to get the nutrition he needs in him….we know from allergy testing that he has wheat and soy allergies so we are avoiding them already…like I said your little girls story is identical to mine!! any help would be appreciated