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Our Story

Posted by Mommy2GlutenFreeChild, 20 September 2011 · 101 views

I found out I was pregnant with my 2nd child in Feb of 2005 because I was having serious pain and bleeding that I should not have been having. A trip to the ER and I was informed that I was pregnant, probably by only a couple of weeks, however, with an ultra sound they were unable to locate the baby in the uterus and the Dr. believed I had a tubal pregnancy. I was told that I should let them give me a medication that would end the pregnancy immediately and allow them to perform surgery. I refused and demanded a 2nd opinion. They admitted me to the hospital, in case my tubes errupted or something like that and the next morning a new Dr. came to see me and ordered another ultra sound. Boy am I glad I ignored their advice, since they found him in my uterus after all. It was determined the pain and bleeding was from an ovarian cyst and not a tubal pregnancy after all. So basically from the very start, my son wanted me to have an adventure with him.

A few months later I started having other problems during the pregnancy and was put on bed rest, ordered not to do anything I didn't need to do. In August, I developed kidney stones that refused to pass and dealt with what felt like never ending pain. They didn't want to operate or do to much because of the pregnancy, so I spent a lot of time in and out of the hospital while dealing with the stones. Finally in October, although it would be 5 to 6 weeks premature for my little guy my Dr. decided to induce labor so that I could have surgery to deal with the kidney stones. On October 7th at 2:35pm my son was born and I passed my stones during labor.

Things were not to be real easy though, because of his premature birth my son's lungs collasped and he was taken by Life Flight to a bigger hospital about 45 minutes away to be admitted to their NICU. They inserted a chest tube and put him in an incubator, set up with a feeding tube and I was told that it was possible he would not make it. Those were the hardest days of my life and a part of my life that has changed me forever. Thankfully though, it turned out fine, he got better and was able to come home where my little Angel was the light of my life.

We first noticed a problem when he was about 4 months old. About the time I introduced baby cereal to him. He would spit up a lot, and didn't have normal bowel movements. Always constipated. My Dr. suggested that we put him on soy forumla and hold off on the baby cereal for a couple of months. He seemed to get better for awhile and we assumed it was the forumla. But as he got older, we reintroduced the baby cereal and started adding foods, he started having problems again. Mainly his problem was always constipation. Our Dr. would suggest increasing water intake, cut out apple juice, less milk etc. The problems never stopped. He would go a week or two with no bowel movement and then have a hard, painful one. As he hit the toddler years, the same thing. I kept bugging the Dr. about it and every time they had a new excuse. When he hit potty training age, the excuse was that he was fighting potty training, holding it in, causing the constipation. He never really threw up other then as a baby, with the exception of a couple of times (once at church after eating cheese crackers- they blamed a flu virus) and although he was very short for his age, they blamed genes for that, since I am only 4'11. Finally, in Dec of 2009 it all came to head when my little angel went 4 weeks without a bowel movement. 2 trips to the ER where they gave him enemas and miralax and said give it a couple days, he will go... it was 4 weeks and finally a 3rd trip to the hospital because he was throwing up and very backed up, where they did a different kind of enema with a long tube and a different medication we were able to get him to go. But it was the wake up call that his Dr. needed. No more excuses about potty training, not enough water and the wrong kind of fruits or juices. She did lab work on him and ordered several tests. The Baruimn enema test showed that he had control of his bowels and was pushing right, not holding it in and the blood work showed positive for Celiacs. She referred us to the Children's Gastorologist who did the endoscopy test and bioposy test. Damaged villa gave us the positve result for Celiacs in Feb of 2010. We got a simple phone call to tell us and a mailing in the mail with some basic information. All they really told us was, your child has Celiacs Diease and you need to cut out Glutens, Wheat, Rye and Barley from his diet. That's it.. No meeting with anyone about what we should feed him, or what we should do. Just cut out wheat, rye and barley. We were bascially left to figure it out on our own.

During this time my husband got a job transfer and we moved to Florida and had to start looking for a new Dr. Which took time as we got everything settled. I thought we were doing okay with my son and his gluten free diet. I was feeding him mostly foods that actually said gluten free on them and he seemed to be doing better. He still got constipated sometimes but not nearly as bad and usually only a week or so at the most. I figured as he healed he would continue to get better. The only symptom he ever showed was the conspitation so we never had a way of knowing when he was exposed to gluten. But things went down hill again in October of 2010 as he started having additional problems. Suddenly he was getting nose bleeds during the day and at night when he was sleeping. He was getting bruises all over his legs that came out of no where. He was tired all the time, falling asleep during meals, wanting to go to bed and sleep. The constipation was back, him not being able to go for 2 weeks. He was getting night sweats in his sleep and bunch of other symptoms. His Dr. got worried that he could have another problem like luekemia or something and had us take him to the ER for some immediate tests. There, they admitted him and ran a bunch of Blood tests and meanwhile we waited to find out what was going on. Test after test kept coming back negative for anything, except for his Iron, which was so low that his iron storage levels were super low. His vitamin K was super low and he was underweight. The Dr. sat down with us one day with a lady from their neutrition area and we had a long conversation about what we fed him on his Gluten Free diet. During this conversation they determined that us using the same toaster for his bread and ours, the same butter, the same cooking pans etc, that we were exposing him to Gluten on a daily basis and just not realizing it. We had never been told what exactly we needed to do. We thought, stop feeding it to him and it would be fine, but were not told that he could still be exposed the other ways. The 3 days in the hospital with them doing his Gluten Free diet was almost an instant change for him. He was doing better and had gone to the bathroom by the time he was released and over the next few weeks, as we quickly bought a new toaster just for him, a new crockpot, new cooking ware, all marked for him and his food only, brought about quick changes in his health. Over the new few months, he started to grow taller, gained weight, became more active and had less problems. No more nose bleeds, no more night sweats. A whole new child.

We are still learning and I feel some days as if I know nothing. Recently the past couple of weeks he has started having a few problems again and I could not for the life of me figure out where he was getting exposed to Gluten. He started Kindergarten this year and although they have made special adjustments for him, such as having a microwave in his classroom so I can send his meals and they microwave for him, and I send in Gluten Free snacks for special days, we didn't prepare for other issues like Play Doh, etc, which again, I didn't realize had Gluten.. touching the Play Doh, touching his food. We have once again had to learn some things which we only became aware of weeks later once the constipation, nosebleeds and night sweats returned. Also, he has been complaiing about his legs and arms hurting and the Dr. will be looking into possible things like arithis. So we are far from having it all figured out, but we learn from mistakes and adjust them. This coming Friday he has his blood work to see I guess what the Dr. calls his Gluten levels? and they will be doing another biopsy in October to see what his villas look like now and see if there is any sign of healing or what is going on in there. I believe this will give us a view into how he is really doing.

I still have a hard time reading labels and get so confused so I still to mainly foods that say gluten free on the box (thankfully there are so many out there now adays) or home made foods that I make right here that I know are gluten free.

A few months ago me and my other son were tested for Celiacs and both came back negative. Me because of my own health problems and my oldest because of how short and skinny he is. I am glad neither of us have it but on the other hand wish I did so I could tell my youngest that I was right there beside him lol. Sometimes he gets frustrated and upset when he can't eat what others can, but he understands why and is pretty good about it. There have only been a couple of times that he was truly upset about it and we quickly worked with him to make him feel better about it.

It's not easy and I worry about what else could develop as a result of the years he went untreated for his Celiacs. It is now believed that he has had it since birth and I just think about all those times he ate things he should not have been eating if only the Dr. had listened to me when I told them something was wrong.

A lesson is to be learned from it though. If you think something is wrong with you, or your child, listen to your heart. Do not let the Dr. put you off for a few years with excuses. Make them listen to your concerns. You are always better off getting tested for things and being told you are 100% fine and knowing you are fine, then assuming and finding out when it's to late, that no, you weren't fine. Always trust your heart.

And me? I will continue reading all I can about Gluten free diets for kids and figure this all out.

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