Newbie...introducing Myself

[SD77]

I've been lurking around here for a while, so I thought I should share my story. I hope that it might help another parent who isn't sure what to do. It's a long post, I know...sorry!

My son was born a healthy 8lbs, normal delivery, etc. By one months old, he broke out in eczema, all over his face, elbows, knees, etc. The first doctor gave me a bunch of steroid creams, which didn't work. I switched to another doctor for his two month check up, and he gave me some lactose free formula to try, and the eczema was gone the next day.

Size-wise, he went from 50th percentile (for both height and weight) at 4 months, dropping down to the 25th, then 15th, and at two years old was at about the 5th percentile for weight, and about 15th for height, which is when I started taking notice. Considering everyone in both my husbands family and mine are average to tall (both men and women) this seemed confusing. I kept asking the doctor if this was normal, and they kept saying he was fine. At this point, he was two years old and about 24lbs. I have another son (2.5 years older) and he's always been in the 75th for height and 25th for weight, so, of course, I did some comparing. And, realizing at the beginning of the summer that my 2 year old still fit into all of summer clothes from the previous year, I was getting concerned. My doctor told me to get him off lactose free milk (as if that's why he isn't gaining weight...) I had tried this about every three months since he was one year old, and with 1/4 of a cup of regular milk, he would get horrible diarrhea and would sometimes vomit. Of course, the doctor didn't believe me, and said 'keep trying'.

So, right after his second birthday, my husband and I were giving him a hair cut, and I realized he was getting gray hair. Not just a few, but about 10 or so. I started researching gray hair in toddlers, and B-12 deficiency came up. Since he drinks pediasure at least once or twice a day, I knew he was getting enough vitamins, which led me to believe it was malabsorption.

I made a doctors appt, and a week later, I asked for a blood test to check his vitamin levels. She said if he drank pediasure everyday he was fine. I mentioned Celiac, and she practically rolled her eyes at me...I insisted on the test (already guessing it would probably come out negative, because of his age) because I was determined not to get cast aside. It was a battle of wills. She had an excuse for nearly everything...blaming my son's low weight on my insistence of giving him lactose free milk, and the fact that I let him use a pacifier still (note: I usually only let him have it at night, naptime, and at stressful times like doctor's office!). She said the gray hair must be prematuring graying, and it must run in our family (my husband started going gray in his late twenties...not as a toddler!) He bruises easily because he's a toddler and he's clumsy... seriously, she had an excuse for everything! And then she mentioned that the gluten free diet was so hard on kids, and he'd have to get an endoscopy, and do I really want to do that to my kid...

I eventually got the test done on him (no idea what the actual numbers were) and she called a few days later and said they were negative. Since he's so young, I didn't plan on getting an endoscopy even if the test was positive, so I switched him over a gluten free diet anyhow.

After the first six weeks, he grew over an inch and gained two pounds (about gaining only 4 pounds in the previous year!) His diapers are normal (all the time!!!), and I've even been able to give him regular milk, with no side effects! The diet hasn't really been too hard, since he's only two, and can't really complain much! He's never in his life wanted to eat many of the usual foods for kids his age (wouldn't touch mac and cheese, or any kind of sandwich, or pasta) so all I had to find was a decent breakfast cereal, crackers, pretzels and cookies. I addition, I now keep an eye on lunch meats, cheeses, etc.

We did have one time when his older brother gave him some gluten crackers when I wasn't looking, and within three to four hours, he was crying and pointing at his tummy saying 'tummy boo-boo! tummy boo-boo!' So, he was gluten challenged, and had expected results. I may get him officially tested later in life, but not until he can talk more, and communicate his problems better.

And it's weird, but when I look back, I can see so many other indicators. I remember he was spitting up frequently the first year of his life. All the doctor had said was to burp him more, after every ounce, which I tried....but his spit-up was always there, and often projectile. I now realize that it wasn't just spit up...I think he was having problems with the cereals, and nobody realized it. Looking at his growth chart, it slowed down right after cereal was introduced. And I had noticed the 'pot-belly look' at bath time often, and joked that he looked like starving kid in Ethiopia, but I thought nothing of it. There were so many signs...

It makes me upset that nobody realized this except me, and on top of that, the doctor gave me such a hard time about it, as though I'm some kind of hypochondriac mom! Seriously, he fit so many of the symptoms, it wasn't that hard to figure out on my own!

So, now, I decided to get tested myself, figuring he had to get it from somewhere...and my doctor was SOOO helpful and understanding! I told her that I don't really have many possible symptoms (maybe two or three minor ones, and family history of osteoporosis) but I wanted to do a genetic test and antibody test to make sure. I am now waiting for the results for myself, and switching my son over to my doctor's practice (since I am obviously never going back to his pediatrician again)!

Shannon

[mushroom]

Wow, Shannon, yours is a textbook story (not a medical textbook) of what so many of us face with our doctors, especially it seems with pediatricians, and it is on the pediatrics rotation that most doctors get their only instruction on celiac disease. Strange isn't it???

Good for you for persevering and saving your son so much misery.