Son With Asthma, Heartburn, And Lactose Intolerance...

[kabowman]

Nobody in our family has ever really tested positive for celiac disease although several of us have gluten intolerance, including me. My oldest son was tested and results were negative but he has problems with nitrates and cinnamon so he avoids those foods.

My youngest son, 12 1/2, I realized has lactose intolerance, he was recently dx with asthma, and he has been complaining about heartburn too. Now, asthma has a relationship with GERD and I have GERD but not asthma. I talked to his allergist/asthma doc and she said if the heartburn isn't better by our next visit the end of March, she will do the blood test for celiac disease (her family has a lot of celiac disease so she is aware of symptoms and lack of symptoms).

We just switched him to lactose free milk mid-January and he is much better. However, he still has quite a bit of gas but not the cramping. He is very sensitive and he does not appear to have a problem with casein - just the lactose.

So, I guess I am looking for opinions - I hate to wait when I know we could fix stuff now but the docs wait-and-see approach also feels right. I thought about a mini-test, no gluten for a weekend then add it back in and see how he feels but, I really do want a formal dx if it is celiac disease. His father still won't accept he has asthma and is lactose intolerant and won't accept that our older son has problems with nitrates and cinnamon. The dx would be something he can't ignore. Most of the time, they eat over there and then don't tell their dad how bad their cramping is...

My son, very healthy (except for the asthma which we are getting under control) and allergies which only keep him house-bound in the summer.

Sorry for so long - thanks.

[jerseyangel]

Hi Kate--Although it is tempting, if you need that diagnosis, I wouldn't take him off gluten--even for a weekend. He's still young, and may begin to heal even in that short amount of time (assuming there is damage there). Good luck with everything

[Guest cassidy]

Why does your doctor think the gerd might go away? I had asthma and gerd as a child and they only went away when I had surgery. I now wonder if the gerd was due to undiagnosed celiac.

You said that you really want a diagnosis. I can understand that, but what are you going to do if you wait until March and the blood test is negative and you decide after a gluten challenge that he is gluten intolerant and not celiac? You won't really have a diagnosis then.

I know you love your son and if there is anything that you can do to make him feel better, I'm sure you would do it. If you take him off gluten and he feels better, wouldn't you want to do that sooner rather than later? If you take him off gluten and he doesn't feel better then you can put him back on it and wait until the doctor does the test, no harm done. If you do take him off, I would do it for more than a weekend. It took me about 2 weeks to realize when I'd been glutened because I still felt bad all the time until then.

Don't know what to tell you about the dad. If it was me, I would tell him that if he can't provide a safe environment for the kids, then he can't have them. He should have to follow whatever diet they need. I don't know how custody agreements work, but I can't imagine any court/lawyer saying it is ok for the dad to feed the kids food they are allergic to that makes them sick.

[CMCM]

Nobody in our family has ever really tested positive for celiac disease although several of us have gluten intolerance, including me. My oldest son was tested and results were negative but he has problems with nitrates and cinnamon so he avoids those foods.

My youngest son, 12 1/2, I realized has lactose intolerance, he was recently dx with asthma, and he has been complaining about heartburn too. Now, asthma has a relationship with GERD and I have GERD but not asthma. I talked to his allergist/asthma doc and she said if the heartburn isn't better by our next visit the end of March, she will do the blood test for celiac disease (her family has a lot of celiac disease so she is aware of symptoms and lack of symptoms).

We just switched him to lactose free milk mid-January and he is much better. However, he still has quite a bit of gas but not the cramping. He is very sensitive and he does not appear to have a problem with casein - just the lactose.

So, I guess I am looking for opinions - I hate to wait when I know we could fix stuff now but the docs wait-and-see approach also feels right. I thought about a mini-test, no gluten for a weekend then add it back in and see how he feels but, I really do want a formal dx if it is celiac disease. His father still won't accept he has asthma and is lactose intolerant and won't accept that our older son has problems with nitrates and cinnamon. The dx would be something he can't ignore. Most of the time, they eat over there and then don't tell their dad how bad their cramping is...

My son, very healthy (except for the asthma which we are getting under control) and allergies which only keep him house-bound in the summer.

Sorry for so long - thanks.

People rarely have just one allergy or sensitivity. I thought for my entire life (56 years!) that milk was a problem. I thought for 25 years that I was lactose intolerant because that got a fair amount of press time and there was a product to help it (lactaid tablets etc.). Nothing helped all that much, and the lactaid products didn't eliminate the problem. Since my mom has celiac, I always had that in the back of my mind. However, I wasn't thin like my mom, so I figured I didn't have celiac. I also didn't know all that much about it. For a good 25 years I also had very asthma like symptoms. People I knew who had asthma said I exactly fit the profile. Yet, asthma tests were negative, and I had extensive asthma testing on two different occasions. I was told my symptoms were due to reflux. But reflux meds didn't help. I finally learned more about celiac and the fact that you don't have to be thin and there are a wide range of symptoms, including all the ones I had and all the ones your son seems to have. So I took matters into my own hands and got full testing (stool testing) thru Enterolab, and also did their gene test and their casein test. I found out I have not only the celiac gene (probably from my mom) but also the one for gluten sensitivity (surprisingly, and probably from my dad). My test show antibodies and autoimmune reactions, and I learned I was also casein sensitive (this can apparently also cause intestinal damage same as gluten can).

The problem with the whole scenario is that many people just won't believe results unless they come from the mouth of a doctor. Unfortunately, unless there is a DRUG to prescribe for a condition, doctors tend to NOT know about conditions which are treated by diet. If your doctor is not thoroughly knowledgeable about the ins and outs of celiac disease, then you will possibly put yourself on a roller coaster of expensive and often inconslusive testing procedures which may or may not help your son. In 2001 my doctor (who knew only a smidgen about celiac) order a blood test which was woefully inadequate to diagnose this. Of course, the blood test came back negative for celiac and I proceeded to spend the next 5 years suffering because of this. Doctors are not gods, and they don't know everything. You have to be your own advocate in this case, and learn what you need to learn and proceed from there. A good place to start is to get the book "Dangerous Grains"...about $10 on Amazon. Also good is "Against the Grain" and "Wheat Free, Worry Free." These 3 books are extremely informative, and cover different aspects of all this. Given your son's symptoms, I'd advise reading all of them. There's also a new book just released a couple of days ago...I haven't read it yet but I hear good things about it. The title is "Celiac Disease...A Hidden Epidemic." It's also on Amazon.

[kabowman]

Thanks for all the input. I am casein intolerant myself and the pills and lactaid milk help him but they never helped me. His gas/bloating seems to be from something else.

His doctor is well aware of celiac disease - her family has it and told me that not everyone shows symptoms, which I knew, but I was glad she did too.

We will try a gluten-free challenge because I usally can't wait for the docs but I do plan on having him take the blood test because if we do have a definite dx, it will be easier to deal with his dad...he flipped over the lactose and didn't believe the docs when they said he had asthma. He thinks I am pushing all my food issues onto the boys. He also doesn't belive our oldest son can't have nitrates and cinnamon either. The boys are very careful about eating at their house and, as kids will do since these are only intolerances and they cause discomfort not damage, they sometimes partake of something that bothers them. As the rule goes, if you knowingly eat something knowing it will make you sick - you really can't complain so they don't tell him.

I have no idea if the doc thinks the GERD will go away, I think, since we just started seeing her in January, that she is trying to guage how often, how bad, etc. and he had only started to mention this to me in the last 3-4 months so I brought it up with his new asthma/allergist since she was so all inclusive.

[Guest nini]

I agree totally with Carole...