Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Son With Asthma, Heartburn, And Lactose Intolerance...
0

6 posts in this topic

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.

0

Share this post


Link to post
Share on other sites


Ads by Google:

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 :)

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites
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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites




I agree totally with Carole...

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      103,346
    • Total Posts
      917,413
  • Topics

  • Posts

    • Will my doctor test me? So many symptoms...
      Yep, get tested for celiac.  You have plenty of digestive symptoms to indicate it.
    • Weird Reaction
      Hi Richie, It definitely sounds like you got glutened.  Over here in the USA they can't label foods gluten-free if they are made from gluten ingredients, period.  So your barley drink would not be labeled gluten-free here.  A while back I read something about the testing for gluten in foods not being as accurate for detecting barley hordein as it is for wheat gliaden.  So the gluten-free testing (if they do any) that your drink maker does may not be reliable. Celiac disease is an autoimmune condition.  So the immune system starts reacting when it detects gluten and damages the gut lining.  An immune reaction is not like a food poisoning event, where most of the damage is only while the food is actually in your system and then ends.  An immune reaction can continue for weeks to months.  The immune system is really quite serious about protecting our bodies.  And since it is designed to detect and attack micro-organisms it reacts to tiny amounts of gluten. Wheat, barley, and rye are the main gluten grains that affect celiacs.  But some celiacs also react to oat gluten.  
    • Weird Reaction
      Hi Richie,  Glad you are feeling better. I wondered have you been officially diagnosed with coeliac disease? Just wondering as you say you are anaemic, that is one of the symptoms of coeliac disease, along with other general malnutrition. You don't need to eat meat for iron though, you can get it from non-heme foods, like spinach or parsley. Just be careful with the drink with barley, it may be that you only start to have symptoms if you consume a lot of it, but if you have coeliac disease the damage is still been done to your gut regardless of whether you have symptoms or not, which will ultimately lead to malnutrition as well as other things.
    • Weird Reaction
      I think, if all this is caused by glutening, it could be that it takes a while to work its way out of your system. I should explain about what I said about organic broccoli.   I don't have a problem with organic food,  in fact, I buy organic milk and carrots all the time, but I don't want to try organic broccoli in case it is the broccoli that is the problem, not the insecticide.    I meant to ask, are you a coeliac or is it non-coeliac gluten intolerance that you have?   I wonder what sort of support you get in Australia for these conditions once diagnosed?   Here in the UK I think the understanding is that if new gastro symptoms have lasted for more than six weeks it needs to be investigated.   I have found this very helpful advice because I do get odd twinges of pain and sometimes changes in bowel movements (sorry if tmi) but they rarely last more than a couple of weeks.   If they do persist I mention it to my gastroenteroligist and he follows it up.  I recently had a sigmoidoscopy for left sided pain and they found nothing.  Turns out it was to do with lactose intolerance, but I always imagine the worse!    
    • Will my doctor test me? So many symptoms...
      Welcome, @iwillmoveamountain! Of course you are not wrong to pursue getting testing for celiac. My advice is to drop that doctor and find a new one, preferably one who is celiac savvy, and who will listen to you and test you for the disease.  
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
    • ukuleleerika

      Hello! I am new to this Celiac website... Is there anyone out there with Celiac AND extensive food allergies? My allergies include shellfish, dairy, eggs, cantaloupe, kiwi, mango, nuts, oranges, red dye, and more I can't think of. I went to the allergist about a year ago to see why I wasn't feeling well, and once everything was eliminated, I still didn't feel well. We did more testing to find out I had celiac as well as allergies to cattle as well as rye grass (I live on a farm basically). This was back in January 2016. I recently had my endoscopy with the gastroenterologist a week ago. I have no idea what to do or what to eat... So fish and potatoes for me!
      · 2 replies
    • SLLRunner

      Week 4 of the gluten challenge- wheat cereal every morning, regular bread every day, and wheat tortillas for my lunch wraps. Right now, body aches that seem exercise related (weight lifting and running), even though I am doing the same intensity of weight lifting and running I've always done.  Just a few more weeks until my blood test. Counting down the days.
      · 0 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,483
    • Most Online
      1,763

    Newest Member
    Amanda912
    Joined