Uphill Battle With Family And Doctors

[DavidG]

I'm 50 and self diagnosed. I suffered from terrible problems my whole life. At age 3 doubled over in pain and being given muscle relaxers for the cramps, major congestion problems, constant colds and fevers. It all went away by age 6. Then came roaring back my sophmore year in college. Every doctor I saw in my adult life told me it was all due to stress. T back then I che internet saved me 11 years ago. After going on an onfirmed that Gluten was the major problem for me along with soy and dairy.

5 months after my discovery and feeling great for the first time in my life, I had the blood test done and a biopsy, despite a marginal positive on the blood test the biopsy came back negative. Truthfully I could not haved care less. But I did start to doubt myself at that time. What really clinched it for me was dairy substitute product I started using to make gluten free pancakes. Boy was I sick. Then I find out this product contained trace amounts of barley, not listed on the lablel. This company finally after many complaints placed onn the lable in very tiny print " contains .002% barley protein. In a quart container thats a very small amount.But we all know how sensitive some of our immune systems are. After that I never looked back and I still feel good after all of this time.Ijust wish I had not suffered for 37 years at the hands of ignorant ,arrogant doctors.

My current problem is our 2 year old son. He weighs 21 lbs, seems mostly healthy, expect he just doesn't put on much weight. He gained one pound between May and October of this year. I wanted him tested when he was 1 and our doctor woould not agree, Ironically his daughter has celiac, but jake is not showing the "usual symptoms. My wife thinks I'm being paranoid (she's the daughter of a research neurologist), so does my father in law.

Our new pediatrician (the other one retired) refuses to do the blood test. he wants me to take the kid to a pediatric Gastroentorologist , that means two copays and insurance payments, which bothers me greatly. I see no reason why a pediatric doctor can't draw the blood and send it to a lab.

I hate the medical system in the US.

[mamabear]

DavidG

Welcome to the forum.....you'll find a wide range of opinions here and a lot of good common sense advice.

First of all, I commend you for 99% figuring out what was making you ill.....the mistake was in being gluten-free,DF for 5 months prior to your tests. A mistake for DIAGNOSTIC purposes, not a mistake for your health! Do you remember which blood test was still slightly elevated?

Stand up for your inner voice about your child...but be forewarned that serologic tests may not be all that great in 2 year olds. As painful $$$$ as it might be, maybe you need to find out about your son before his diet is naturally altered by yours. I for one feel that knowing as much as possible about celiac is empowering.

Glad you found us.

[ang1e0251]

Hang in there and try not to be too angry, very hard, so your child can get the care needed. I also am self diagnosed and it seems like I see potential Celiacs everywhere! My friend is going through a similar problem with her grandchild. After years of taking him from dr to dr, and this child has very strong Celiac symtoms, they finally found a ped to blood test him & refer him. Well, the BT's came back negative, children often don't produce enough antibodies for the blood test. So even if your child had the blood test, the results might not solve your dilemma.

My friends daughter was set to cancel with the gastro but luckily the ped talked her out of it. She explained about the bt problems. The gastro has turned out to be the best, most professional dr they've ever had the child to. When they return for the first visit's test results next week, I expect food allergies to turn up as well as biopsy evidence to warrent an endo or maybe just the diagnosis from that. So don't give up because your son is counting on you, YOU are the only voice he has. You remember your childhood, make his better than yours by following your Dad's Intuition.

I'll be thinking and praying for your family. Please let us know how things turn out.

[Jaimepsalm63]

Hey DavidG...welcome! I have three boys that I had tested by the pediatric GI instead of my peds primary. Why? Well, the peds primary admitted he didn't know that much about Celiac and wanted someone who did to do the tests. Also, in my family it runs that the blood tests are always negative, but the intestine biopsy is positive....so even if a blood test was done, I would've still had to do the biopsy for them. I thank God that they don't have Celiac at this point. My kids GI doctor said to come back right before they got off our insurance to test them again or if they start complaining of problems, not growing, and such.

I know it's a lot of money, but I can't put a price on my kids as I know you can't either. Because your daughter has it...I would test your son. Maybe your peds doctor didn't communicate the lack of knowledge they have on this disease and will feel inferior or think you'll lose faith in their "practicing" medicine. Pride can do so much harm for everyone.

I will say though, that my oldest has really bad D. We discovered though that he's allergic to corn, soy, garlic, tree nuts, legumes. When we took him off all of those everything began to come together, so to speak. He no longer has D and we're saving on toilet paper.

Good luck, and get him tested now.

[Kit]

Hi David,

Sorry about the trouble with the kid's doc. I'm pretty sure that testing guidelines, which your doctor should be privy to, recommend that all first-degree relatives of celiac get sera-tests for celiac disease. I think once every six months for two years is what is recommended. What's this doc's problem??? If he/she isn't familiar with the tests, he should be by now. It might be helpful if you brought a list of the tests he needs to your son's doctor and insist they be done. If he refuses, I'd find a better family doc or pediatrician, who is more up to date.

Kit in St. Louis

  DavidG said:

I'm 50 and self diagnosed. I suffered from terrible problems my whole life. At age 3 doubled over in pain and being given muscle relaxers for the cramps, major congestion problems, constant colds and fevers. It all went away by age 6. Then came roaring back my sophmore year in college. Every doctor I saw in my adult life told me it was all due to stress. T back then I che internet saved me 11 years ago. After going on an onfirmed that Gluten was the major problem for me along with soy and dairy.

5 months after my discovery and feeling great for the first time in my life, I had the blood test done and a biopsy, despite a marginal positive on the blood test the biopsy came back negative. Truthfully I could not haved care less. But I did start to doubt myself at that time. What really clinched it for me was dairy substitute product I started using to make gluten free pancakes. Boy was I sick. Then I find out this product contained trace amounts of barley, not listed on the lablel. This company finally after many complaints placed onn the lable in very tiny print " contains .002% barley protein. In a quart container thats a very small amount.But we all know how sensitive some of our immune systems are. After that I never looked back and I still feel good after all of this time.Ijust wish I had not suffered for 37 years at the hands of ignorant ,arrogant doctors.

My current problem is our 2 year old son. He weighs 21 lbs, seems mostly healthy, expect he just doesn't put on much weight. He gained one pound between May and October of this year. I wanted him tested when he was 1 and our doctor woould not agree, Ironically his daughter has celiac, but jake is not showing the "usual symptoms. My wife thinks I'm being paranoid (she's the daughter of a research neurologist), so does my father in law.

Our new pediatrician (the other one retired) refuses to do the blood test. he wants me to take the kid to a pediatric Gastroentorologist , that means two copays and insurance payments, which bothers me greatly. I see no reason why a pediatric doctor can't draw the blood and send it to a lab.

I hate the medical system in the US.