Getting To Know My Celiac Son

[FoxersArtist]

Hello everyone.

This is my first time posting in this section and I have only been part of this forum for a week or so. I wanted to share my story, if for no other reason, it feels good to share with someone.

I have been sick as long as I can recall and have always had a lot of stress in my life which seemed to aggrivate the health issues I had. Even the worst of the worst that I had gone through seems like it does not compare when I reflect back on the past 2 years of my life. When I first got pregnant with my son almost 3 years ago, my health really started to decline which was topped with a complicated pregnancy which icluded pre term labor and a sever DVT. Our son was born 5 weeks early and weighed 5 lbs. We were greatful when we learned that he would not have to go to the NICU but our troubles soon began. Our son refused to eat and he rapidly dropped weight and body temperature. The Drs. words of warning were bewildering and so we took to trying to force feed our tiny infant. Force feeding was the most difficult thing we had ever felt forced to do and when we tried to get help from our son's perdiatrician, he told us over and over that an infant would never starve itself. But our boy was failing to thrive and this only got worse when I gave up on trying to nurse him.

Force feeding was the hardest thing I have ever had to do in my entire life. It was like having to choose between the physical and emotional well being of your child, but you couldn't have both. We tried as hard as we could to be close with our son and did everything possible to create bonding moments, but we felt like our baby didn't want to bond with us! We felt like he was forever pushing us out and that he was angry at us and the world. How could such a tiny baby be angry? Did babies even understand anger? We tried to get family support since our Drs. would not listen after simply diagnosing our kid with reflux (because he would shoot the entire contents of his stomach accross the room) and with being a "high-stimulation" child (which seemed to me to be interpreted by me as something akin to infant ADD.) There were other things that worried us. He was delayed in his motor functions and mostly resorted to grunting. He never babbled or giggled but instead made these harsh gutteral sounds instead. He was late talking and late walking and he was always in the 5% for his weight. When he did start walking he fell down, A LOT - something we expected to get better with practice, but it didn't. I had secretly hoped that he might start to bond with me once he started talking but instead he seemed to pull away more. Everyone around us accused us of not understanding him because we thought something was wrong. no one else saw what we saw, and that was frustrating. By 1 year of age, I felt so hurt and so discouraged about being a parent that I really shut down and didn't want to try anymore. the feeding issues got a little better with solid foods, though it was a huge battle. The psychological issues seemed to worsen and we were worried that our inability to bond with our son was destroying him. If not that, maybe he is autistic?

I became pregnant shortly thereafter and was terrified that I just didn't know how to be a good parent. At the same time, my own health issues were getting drastically worse. I was in and out of hospitals and ER's a lot and Drs. visits seemed to rule our lives. My pathologist, who is very, very good, started running lab after lab to try to find an answer. When our daughter was born we very quickly realized that there was nothing wrong with our parenting or ability to nurture...there was something wrong with our son. We finally learned for the first time what having a baby was supposed to be like and we were amazed at all of the things we had missed out on with our son. My health took a rapid decline after the birth of our daughter and even small activities seemed debilitating and exhausting to me. I started having a wide range of neurological issues and lots of pain. My whole body would turn purple and swell if I stood for longer than a few seconds. It became very hard for me to care for both of my children and I felt like I was dying and no one could tell me why. I felt like we had ruined our son and maybe I wouldn't even live long enough to make things right or see him through whatever was going on. I had tests repeated over and over again but still there were no answers.

Last month I was sent in for a colonoscopy for possible crohn's disease. A week before we got my colonoscopy results back we decided to take our son to the Dr. because he was having white colored stools. His Dr. noted that he had lost weight and wanted to do a blood test for celiac. I had heard of celiac, as I had been doing auto-immune research for myself, but was unsure about all of the symptoms for babies. Shortly after our sons visit to the Dr. I found out the results of my colonoscopy. Biopsies showed that i have celiac sprue. Thank God! An answer, and I'm not dying! Minutes after I got my results our sons Dr. called to tell us that his labs were all normal. Surprise, surprise - all of mine were always normal too.

Both my son and I have been off of gluten since the 17th of this month. In this very short time our family has seen an incredible difference in both me and our son. The fog left my mind almost right away and so did all of the swelling. the neurological stuff is taking it's time to heal but the pain has greatly decreased and is getting better by the day. Our son has started reaching out. Instead of grunting he is babbling and he has the sweetest voice. He climbed up in my lap a few days ago and wanted to read a story. He even lets me tuck him into bed and has started taking regular naps. He is even having nightmares in the middle of the night (like any normal kid) and wanting to be held (whereas before he would have sat in his crib for 14-16 hours at a time without making a peep and throwing a fit if we came to get him before he requested it!) Even his gait has improved and we have not seen him fall down in days. I am so awed at these changes that it's almost too good to be true. For me, learning that we have celiac is a miracle, not a curse. In a lot of ways I am terrified to let my son into my world because I have been so badly hurt by him...but i know that the next step is going to be getting to know each other. We are both celiacs now and we will be able to go through this together. I really want to get to know the little boy we always knew was in there, somewhere, and we feel blessed to finally have that opportunity. Any support I can get will really help as I'm sure there are others out there with similar stories. I just wish every parent going through this very thing could find an answer. I'm looking forward to getting to know everyone here. Thanks for reading my story!

-Anna with Gabe

[shayesmom]

Anna,

First off, congratulations on finding answers for you and your son. It takes a lot of courage to go beyond the doctor's diagnosis (or non-diagnosis) and forge ahead with this diet anyway. For your courage, you will be rewarded.

I am sorry for the years you spent suffering. But it is good that you did get answers relatively quickly compared to most. From here, everything should be looking up. And after all you've been through, that couldn't come a moment too soon!

My dh and I had similar problems (though not quite as extreme) with our dd when she was young and we both had such guilt over it. There's no question that you love your child. It's just so hard to deal with their daily needs and their idiosyncracies that you constantly wonder if you're that inadequate as a parent. And then you feel guilty again because the doctors are telling you that your child is basically "normal" and so once again, you wonder if you're just completely selfish, unreasonable or even unrealistic as to what parenting is supposed to be.

My dd changed so much the very first day we went gluten-free....I could have cried for joy. By the end of the week my dh and I were finally getting to see what parenting was supposed to be like and it was WONDERFUL. We learned that our dd has a beautiful personality and is full of energy and laughter. We did discover that she has multiple food allergies and intolerances....but you know, that's okay. We can deal with all of that quite happily...as long as she's healthy and thriving the way she currently is.

For most non-celiacs, this diet is so abnormal that they don't see how (or why) anyone would want to do it. But when you've been as low as some of us have been....and you find out you can control it with something as simple as food, then the solution is fairly simple. Like you, I consider this to be a huge blessing in our lives. I've learned so much and it has given me and my family the means to a happier and healthier life. Perhaps I'm a bit weird, but I don't consider this a disease any more. It's been more like a path towards enlightenment. lol!

Welcome to the board! I'll be looking forward to chatting with you more often!

[Fiddle-Faddle]

I am so glad you found about about celiac and about this board!!

WELCOME!!

I'm kind of rushed this morning, so please forgive me if I sound brusque.

I am furious that your pediatrician didn't help you. Please do some research on your own into autism and Asperger's syndrome. You might not need it--but you might. My son had similar issues to your son, and was diagnosed as autistic--he is doing GREAT, and would probably lose the diagnosis at this point (age 12), but without all the early help we got, it would be a much bleaker picture.

Also, please do some research at NVIC.org on vaccines. Kids like ours are the ones who tend to have really, really bad reactions to vaccines, and to suffer long-term NEUROLOGICAL effects from the vaccines. Doctors either don't know this or admit to this, but it's happened to SO many of us, and the research is pretty clear, despite what the doctors/pharmaceutical industry say. (The main study they quote to "prove" that there is no link between vaccines and autism is flawed because they pulled all the kids already diagnosed with autism out of the study after if began.) You CAN delay vaccines, have them given only one at a time, several months apart, or even choose not to have them administered at all, and you can still send them to public school in most states in the US.

A good parenting book is The Baby Book by William and Martha Sears. They also wrote a book on parenting high-need kids, but I can't remember what it's called. They are a pediatrician and nurse who had 8 kids. The first four were "normal." The 5th one was a challenge.

My nephew was also one to sit in his crib for 12-14 hours a day, and this resulted in some major developmental delays, especially social. I'm so glad your little one is already lifting out of his bubble! Do as much face-to-face cuddling and talking as he can handle--if your daughter is still very tiny, when you talk to her, you can make every word out of your mouth about how wonderful her brother is--she won't understand the words, but will benefit form face-to-face talk, but he WILL understand and appreciate the words, and jealousy will be much less of an issue.

Best of luck to you, and I hope things continue to improve for you and your little ones!

[taweavmo3]

Welcome, and thank you for sharing your story! I think many of us can relate to it, especially the part about just getting to know our children. My dd was 3 when she was diagnosed, and up until that point, I was honestly scared to be alone with her. I would tense up when dh would get ready for work, just at the thought of a long day of tantrums and screaming. She was never happy, she didn't want me to hold her, yet she wouldn't want me to be out of her sight. If I tried to take a shower, she would sit outside the shower door and scream, but would just push me away if I tried to hold her.

After about a year of just my dd being on the diet, I eventually put all of my other kids and myself on it as well. If there were some definitive test that didn't require them to be ill before they were diagnosed, I might let them eat a regular diet. But after seeing how sick it made my dd, and how many adults are dealing with life long issues from years of damage, I just couldn't take that chance. My 8 year old's Celiac test came back negative, but he already had Psoriasis. The insidious thing about Celiac or gluten intolerance, is you aren't quite sure how your body is going to present the symptoms. If you don't get GI issues, you might get life long skin issues. Or the damage may be solely neurological.....you just never know!

Anyway, this is a great place to find out information. I still remember the first time my dd played by herself a couple of weeks after the diet....dh and I were awe struck. I really did not know my daughter at all until she was gluten free, that was the first time I ever saw her run, play or laugh. It is a GREAT feeling to know that you are helping your child heal. I wish you many more days of happy times with your child!!!!