Thank Goodness I Found This Forum Board!

[Carter's mom]

Hi, I'm new to Celiac.com but not to Celiac's Disease. This is our story of how we became aware of Celiac's Disease. **Warning this is going to be a novel**

I'm a stay at home mom to a 9yr old and 3yr old. My daughter's name is Lauren and my son's is Carter. Carter's start to life was a rough one. At around 3 wks old I knew something wasn't right and took him 70 miles away to the nearest pediatrician. There I talked about his symptoms and said I thought he might have reflux problems. After further investigation, he was diagnosed with Reflux and was put on a high dose of Prevacid. For several months I had to give Carter daily oral doses of Prevacid and he hated that stuff. He always seemed like a clingy baby but I didn't mind, I pretty much held him 24x7.

As he learned to sit up and his muscles strengthened, we decided (the ped. and myself) to go ahead and stop giving the Prevacid to Carter. He was doing so well at 7 months of age, he was eating solid foods and had been for quite awhile. Carter was a happy kid but still "high maitenance". He loved eating pasta, mini sandwiches, tiny bits of chicken, etc... He was walking by 11 months and was all over the place, so far at the pediatrician's office his growth had been quite impressive. Carter had always been on the high side of the percentile range in height and weight. When he was born he was 7lbs 5oz and 21 inches long, nothing to big but he put on the weight and grew a lot when he was an infant. Finally at 13 months I took Carter in for his 1 yr well baby check. Carter's weight and heighth had kind of tapered off. The pediatrician noted this and showed me his growth chart percentile ranges up to that point. If you can invision a heart rate monitor screen and see the line cimbling up and up and up and then just flat lining, that was Carter's growth. The ped asked me some questions about my family's heighth and weight, my husband's side of the family is litte and he's only 5'6 and I'm 5'4. My dad's family is all over 6'2 though so that's why we thought he was going to be a big kid originally. But then the ped felt maybe he was just settling into his genetics and had slowed in his growth for now.

After that visit Carter started getting bouts of diarrhea. They were so disgusting. I equaited the runny poops to teething. I asked other mother's about it and they said it usually happened when kids were teething, no big deal. This went on for awhile. Carter was so cranky. By 12 & 13 months of age, he would cling to me, everyone just thought it was because he was a "momma's boy". Carter was cranky and whiney and would cry often if I wasn't holding. I was doing the "Extended Breastfeeding" with his as well, and eventually it got to the point where Carter really didn't want to eat much. For awhile he was eating a lot then it tapered off and the breastfeeding picked up. Over this time period between 14 & 15 months of age Carter's diapers were horrendously foul smelling. They stunk like rotten eggs and it had gotten so bad that the entire process of potty training was stopped because Carter was pooping so much. He could barely control it, everytime he ate, he'd have a bowel movement and it was usually mush and yellow. I knew something wasn't right. I started making calls to local doctors. I took him in and he was evaluated for flu bugs, etc... Finally I saw an ad in the paper from a local doctor that said "Ask the Pediatrician". The ped was local (I live in a small ski resort town in Idaho) and he wasn't running his own practice but he would use a local physician's office after hrs and see families with children that had questions or concerns. He wasn't in practice anymore so he could only make suggestions or referrals. I called the ped. up and made arrangements to meet with him. My husband and I and Carter met with the ped and right away the ped noted how skinny Carter was. This was a big concern to my husband and I as well because Carter had been dropping weight like crazy and was to the point where he didn't want to walk or really talk anymore. The ped asked us several questions about Carter's diet, activity level, sleep pattern (by this point that's all Carter did was sleep on me during the day and wake only for nursing)etc... He was obviously concerned. By the end of our consultaion the ped had told me that I needed to stop breastfeeding his and write down everything that he was eating. I cried. I told the ped that I didn't want to stop nursing him because that was the only thing he wanted all the time. The ped was adimate that I stop nursing and he would be contacting us by the next evening with his thoughts, etc... The ped did mention that Carter looked like he was a "failure to thrive" child. He compared him to the children in Africa with the big distended bellies and sunken in bodies with slack muscles. I took severe offense to the comment "failure to thrive" because I've only heard that attributed to abused children. I wasn't abusing my child and how dare this man tell me that my baby was being classified as a "failure to thrive" child. He said he'd call us tomorrow.

I went home and did what I had done the previous night, I got online. I searched and searched Carter's symptoms. I kept coming up with Cystic Fibrosis & Crohn's Disease and a few other bowel diseases. I came to recognize that Carter's foul smelling diapers were due to possibly malabsorbtion of the foods. I was scared, and new my baby was in trouble. I tried to go 4 hours without nursing Carter and all he did was cry and cry and cry. That was the only thing my little guy wanted and I finally relented and could not take it away from him. I knew that if he wasn't really eating that he was obviously hungry and I just couldn't hold out any longer. I wrote down what I was eating as well and what Carter was eating or not eating.

The next day I heard from the ped we had the consultaion with. We had a very frank discussion. He said he thought that Carter might have Cystic Fribrosis or possibly a food related disease Celiac's. The words he was saying were going over my head. I had given him our pediatrician's information the previous meeting and so he contacted her as well. I called my pediatrician's office right away and she had us come in the next day. Our pediatrician said to pack enough things just incase Carter would be hospitalized. I said ok and started planning.

The next day (a weekday but I don't know which day it was) my husband and I along with Carter drove the 70 miles to see the pediatrician in Twin Falls. She talked to us and after going over his growth and his drastic decline in height and weight she made a phone call. She came back into the room and said that there was a specialist in Boise, Idaho (2 and a half hrs away) that was going to be waiting at his office for us so he could see Carter. She said that he would be hospitalized there as well, that they think Carter might have Celiac Disease. We talked briefly and we mentioned that my husband had to work the next day and that we only packed for myself and Carter, etc... (we only have one car so my husband was taking me to Twin with our son so he could be in the hospital there (it's an hour away from our home) and then he was going to go home to take care of our daughter who at the time was 6yrs. old and this way he could go to work the next day (he's the only source of income for us). Carter's health was more important than worrying about work and we called my mom who thank god was living in our town at the time (now she lives in Canada). Lauren our daughter was going to stay with my mom and she would get her to and from school, etc...

My husband and I raced to Boise to get to the specialist's office, Dr. Henry Thompson. He specializes in Colitis, Crohn's and Celiac Disease. After getting to Boise from Twin in 2 hrs we met up with our specialists. He walked into the patient room and took one look at Carter and said "Oh I can tell you right now after one look at Carter that I'm 99.9% sure he has Celiac's Disease". He explained to us what Celiac's Disease is and how it affects food absorbtion and how he was going to diagnos it. Carter was admitted to the children's portion of the hospital. The hospital is a major trauma hospital in Idaho and was equipped to handle children. All we had to do was walk one building over and then we were admitted and given a room. Everything was happening so fast but I held it together. I knew that I had to be strong for my son who was going to undergo an upper g.i. the next day.

After being admitted and given a room we settled in with what little things we had. By that time of day it was maybe 7pm. My husband I hadn't eaten dinner yet and we were on a limited budget. Because we were with Carter I would be allowed one minimal meal for dinner. One. My husband and I didn't know what to do, he didn't have any clothes with him or food and he wears contacts. He went out to the nearest supermarket and purchased little things that he needed. The nurse also called over to the Ronald McDonald house so my husband and I could have meals or even a room at the house. We both opted to stay with Carter but my husband was happy to have meals.

Carter's blood was evaluated and we were told that he needed an i.v. and a two vitamin K injections. They needed to give him the vitamin K so he wouldn't bleed out during surgery, that's how bad he was. So Carter was given nasal Vercaid (the good stuff) and he was so loopy and smiley, it was the funniest thing. We took him over to a table and I opted to just hold him rather than having him strapped down. Carter did so well with all the needles sticks he got. Two nurses tried his arms for a vein, nothing. Our specialist Dr. Thompson was called into the hospital in order to start Carter's i.v. I'm not sure how many times Carter was poked but Dr. Thompson said he was going to try and get the i.v. into Carter's saphenous vein (localed in the ankle of the foot). He explained that this would take some time and is really hard to accomplish but he hoped he could get it, if not they were going to have to put the i.v. into his head somewhere. It took some prodding around but ten minutes later Dr. Thompson had the i.v. started. Carter didn't cry one bit, a whimper but over all he just layed there. Thank goodness for the Versaid.

Carter was given one Vitamin K dose through his i.v. that night and he'd have the next dose in the morning a couple of hours before his surgery. That night my husband slept on the horrible uncomfortable rubber/pleather feeling couch that turned into a bed with the cushions off. I slept balled up in Carter's bed. Keep in mind Carter was 16 months at this time and so he wasn't really in a bed, he was in a bigger sized rolling crib. So, we kept one side of the crib lowered and I climbed in and held Carter. It was so uncomfortable but I wanted to be with Carter and he didn't want to be with out me. He was used to sleeping in our bed all this time. So we got an uncomfortable and much interrupted night's sleep.

In the a.m. Carter had his dose of Vitamin K and then we just hung out until surgery time. We walked around in the hospital and talked to other kids. When it was surgery time we walked Carter down to the patient prep area. I was so nervous but still managed to keep it together. The specialist came in, Dr. Thompson and told us what was going to take place and gave us an estimated time as to how long the procedure would take. Carter was given more Versaid through his i.v. and it was an instant high for my little man. Oh it was the funniest thing to see. He was just laughing and his eye got all glossed over and he was just smiling and hugging me. I layed him in the crib/bed so he could be taken into surgery. I didn't bring my camera with me in our unexpected trip to Boise to document Carter's hospital stay so when my husband went to the supermarket the previous day, he picked up a disposable camera. Carter had been playing with the camera while he was laying in his crib/bed right before he was taken to the O.R. he didn't want me to let it go, so I just let him have it and Dr. Thompson said "just let him keep it, I'll take a picture of him for you right before he goes under anesthesia. So I let Carter take the camera into surgery with him. I watched the nurses and Dr. wheel Carter away and after we walked out of the room and the doors shut behind me I cried. This was the first time I had ever been without my son. I had not left him up until this point in time with anyone else other than my husband, to run to the grocery store. Uh it was a hard moment for me. I knew I couldn't fall apart so I gathered myself and we walked back to Carter's room to wait.

Three or so hours later some nurses and Dr. Thompson walked into the room. I was waiting at the door and Dr. Thompson was carrying Carter. The minute my son saw me he reached out to me and I was so happy to hold him. We sat down with the Dr. and he told us how everything went. He explained what the lining of the intestinal tract should look like and how it has these finger like structures that absorb nutrients from food that is eaten. He went onto say that with Celiac Disease these finger like deals are completely shaved away by the gluten and that's why food passes right through Carter and he can't absorb nutrients and that's why he is classified as failure to thrive. The Dr. said that Carter's insides were completely smooth and he had none of the nutrient absorbers, it was pretty much one of the most extreme cases of Celiac Disease he's ever seen. He explained how you can treat or deal with Celiac's and that the good thing is, is it completely "cureable" through a gluten free diet. At least we had that much going for us. Carter was going to stay in the hospital for two more days in order to get more nutrients via i.v., etc... We met with a dietician who in all aspects was not helpful at all. We knew what a food pyramid was and the general idea of how much of what he needed food wise. She didn't have much to offer other then telling us that he needed to remain gluten free and that all the pastas, breads, etc... had gluten in them. Carter was put on a gluten free diet in the hospital and not to much was available food wise. He ate eggs, some fruit, and a lot of the chocolate ice cream. I could continue to breastfeed Carter as long as I kept a gluten free diet as well, it was suggested that I go gluten free as well, but the doctor thought the disease came from my husband's side of the family because it's more prominent in the English countries. My husband's parents are from Italy and England, he's fair with blonde hair and blue eyes. My family is from California and my mom is very dark, hispanic and Indian and my dad is very white, 6'2 blonde hair blue eyes Norweigan. After discussing the disease with the specialist and answering questions we had no history that we knew of with Celiac Disease. I talked to my parents and my husband talked to his and nothing. BUT, the next day my dad called me while we were in the hospital to say that while he was talking to my grandfather, my grandpa told him that he was diagnosed with Celiac's five years ago! WHAT? This was news to everyone in the family. My grandpa is 85 and was diagnosed with Celiac's at the age of 80. We all knew at 79/80 that our grandpa was very ill and not doing well but after seeing a few doctors he soon bounced back. My grandpa never told anyone what the problem was, just that he was sick and was now healthy. Now 5 years later he's telling us he has Celiac's Disease! My grandpa has a mild form of it, because he cheats all the time on his diet.

When we talked to Dr. Thompson again I told him about my grandpa having Celiac Disease and that we never knew about it until that very day. The Dr. was surprised a little that it was from my side of the family. He said you can never be sure who it came from and it doesn't really matter but that I should get tested for Celiac's Disease and have our daughter tested as well. He wrote down the two blood tests that need to be run simultaneously in order to find out if you have the Celiac Gene? in your blood, so we could give it to our local physician. He explained how Celiac's could trigger in a person's body at any time in their life, for my grandpa it was when he was 80 years old. I had no idea what other problems happen or arrise from Celiac Disease if it goes untreated for long periods of time. In my son's case he would have died. The Dr. said "the only thing that kept Carter alive up to this point was the fact that you have been breastfeeding him". I felt so good about the extended breastfeeding at that point and that I didn't cut Carter off as suggested by the previous doctor. The Dr. also said that if Carter had gone another month without being treated he would have gone into Cardiac Arrest and died. We were fortunate.

After our hospital stay we hit the local Co-Op and roamed the aisles for gluten free lables. There wasn't much but we stocked up on what was available. Some of it tasting ok or good, and other things tasting terrible. We also looked for gluten free lotions, and such. I never knew how many things had gluten in it, food and non food related items.

On our way home the reality of the situation hit me. We had a 3 hour drive to get back home and about half way home my husband had to pull over and just hold me and tell me it was going to be ok. I was afraid to feed my child, I felt as if up to this point - 16 months of Carter's life - I had been poisoning him with foods he couldn't eat. I felt guilt for not knowing more, I was scared of what was to come. I knew when we got home that we were going to have to go through our cupboards and our food supply and get rid of the glutenous items. We live in a small town, where the heck was I going to buy gluten free foods, we don't have a "Whole Foods Market" and other places like that. The thought of my son dying a month from now if he had gone untreated rocked my entire being. The thoughts of "Why did it take so long to get to this point, to get a diagnosis" was going through my head. Was it our fault for not knowing, when we started to feel something was wrong with Carter we didn't have health insurance, that was a concern and we didn't know Carter was sick at the time. Finally when the diarrhea wasn't stopping we knew action had to be taken and with or without insurance we were going to get our son help. We did but did we wait to long? Uh all these thoughts were running through me. I had my falling apart time on the side of the road with my husband, while my 16 month old son smiled away at me from his car seat. What it came down to is being thankful for knowing now what was going on, that he's alive, that the disease is controlled through diet and that we would make it work.

We got home, unloaded our things and picked up our daughter from my mom's. Once back at home we went through our food supply in the cupboards and the fridge. By the time we were done we had next to nothing. I couldn't help but cry again. I cried because we had no food to eat, food that was safe for Carter. My husband was there for me, I can't thank him enough. He helped me through this and said it would be ok. He turned on the computer and started searching for gluten free foods. We made out list of "ok" foods and hit the grocery store and started reading food labels. I carried my gluten free book with me and constantly was looking up ingredients to find out what exactly they were while standing in the aisles. If I didn't know if something was gluten free or not I wrote down the brand and manufactuer's information. So I could call and find out if the product was in fact gluten free.

This is how our family came to know Celiac Disease. My son is now 3 and a half years old and is thriving. It took him about a year to fully bounce back from the day of diagnosis, but he's grown so much. He's the size of an average 5 year old! He started out growing to be a big boy until Celiac Disease took him over, but once we got a handle on things he grew beyond belief and caught up for lost time. It was so wonderful to watch my son grow and see him being energetic again. All he used to do was sleep on my shoulder and nuse and within 5 to 6 months I had to run around to keep up with him.

We have a handle on foods, we order a lot of them online. We are a single income family, own a home, and have a car that is paid for and maintain a tight budget in order for things to work. Ordering food online is expensive but we have not found anything locally or in stores 70 miles away that we absolutely love like we do with The Kinnikinnick brand. At one time a health food store in Twin carried these items but after they switched distributors all the good things went away and their gluten free section is slim to none. We love Walmart, all their brands list right on the food label "gluten fee" if in fact the item/product is gluten free. Our favorite resteraunt, although it's also 70 miles away in Twin Falls, is Outback Steakhouse. YUM!

So... I'm looking forward to meeting other parents with children who have Celaic Disease. My biggest worry now is putting Carter in school. I'm holding off until he has to go to Kindergarten. I'm just so afraid. He's very sensative to gluten and I hate the idea of cross contamination, or kids sharing lunches and snacks. I'm ok with having to provide special treats for my child or that he'll miss out on some treats, but he'll be ok. I'll pack his own pizza crust for pizza parties with his friends, when he's in college there's now gluten free beer.

I noticed already a post title school lunches... this has been so helpful. I didn't know there was anything like the 504 Disability something or rather available to people with Celiac Disease. I still don't know what it is, but it sounds like there are things in place for our children. I look forward to meeting all of you. And if you've managed to make it this far with my novel then I'm pretty impressed.

Thanks for reading my story. Oh and I'm sorry, I hate going back and re-reading so if things run together or there are errors, that's just me not going over my post. Sorry about that.

[Piccolo]

Dear Carter's mom,

Hi and welcome to the board. You will find a lot of information and support here. I'm glad to see Carter is doing so much better.

Susan

[dandelionmom]

Hi! This board has been a lifesaver for me! My 3 year old was diagnosed this summer after being a pretty sick kid for about a year.

Where do you order Kinnikinnick from? We are so lucky to have a lot of stores with pretty good gluten-free selections but none carry Kinnikinnick!

[taweavmo3]

Welcome to the board! I think many of us share a similar story....my little girl was wasting away as well, she was 3 years old and weighed less than 20lbs before she was diagnosed. And even though we live in a big city, with two children's hospitals, it still took four doctors and an entire year to get an answer. Our GI doctor did nearly the same thing you described, he took one look at my little girl, and said she very clearly looked like a Celiac kid.

Sounds like Carter is doing fantastic now! Isn't it great seeing them transform into the healthy children they were meant to be? We always say that our Emmie finally has her baby face back.....when she was sick, she looked nothing like she did as a baby, she looked like a completely different child. Now she's even a little chunky, which I just LOVE! Anyway, welcome again...this board is awesome!

[Nikki'smom]

Welcome! I am thrilled to hear Carter is doing so well!

Did the rest of your family end up getting tested?

[vanillazeis]

Welcome Carter's Mom!!! You'll love it around here, so many of us have very similar stories.

Dandelion... check out www.kinnikinnick.com we love all their stuff... they also have a store locator on their website! I always recommend kinnikinnick, although if ya'll have any food allergies, they are not EGG safe! Hope it works for you, my little girl loves their pizza crusts!

[Carter's mom]

Welcome! I am thrilled to hear Carter is doing so well!

Did the rest of your family end up getting tested?

Thank you all for the warm welcome. We actually order a lot of our food through amazon .com, they carry the kinnikinnick chocolate chip cookies. We occassionally order directly through Kinnikinnick or go through www.glutensolutions.com.

As far as getting the rest of the family tested, we have not done that yet. At some point we want to do that. I tend to get little blisters on my hands after consuming a lot of wheat. If I don't eat wheat then I don't get the blisters. I'm sure I carry the gene or will one day come down with Celiac Disease. My grandfather didn't get is until he was 80!

Anyway thanks for the warm welcome. I can't wait to start reading everything!

[happygirl]

Just wanted to welcome you to the board, and happy you have answers for Carter.

Make yourself at home!

[kevsmom]

Welcome! I am glad to hear that Carter is doing so well.

Cindy