Is Gluten Intolerance Celiac Disease?

[Hennessey]

Was told my son was allergic to gluten. He has numerous food allergies. Doctor went on to say said he doesn't have celiac (at that point I had never even heard of it anyways so had no idea what he was talking about). After researching it though from what I have read it sounds like gluten intolerance is celiac disease??

I know for a fact my son was not tested for celiac, he did have a blood test for allergies and I am the one who requested him to be tested for gluten.

Is gluten intolerance celiac disease, regardless of the symptoms??

Thank you.

[Jnkmnky]

How could the dr rule out Celiac Disease if he didn't test for it? People can be gluten sensitive and not experience damage to the villi. People with C.D. experience flattening of the villi in the small intestine. As far as I know, Gluten intollerance is Celiac Disease. I've heard of wheat allergy, but not gluten allergy. I could be wrong.

[Hennessey]

How could the dr rule out Celiac Disease if he didn't test for it?  People can be gluten sensitive and not experience damage to the villi.  People with C.D. experience flattening of the villi in the small intestine.    As far as I know, Gluten intollerance is Celiac Disease.  I've heard of wheat allergy, but not gluten allergy.  I could be wrong.

<{POST_SNAPBACK}>

I think your right about that, it is not considered allergy but intolerance. my son is allergic to wheat. The last time he was tested I said can you check gluten and then it came back positive. After reading about it, I am assuming he has celiac disease. It is so aggravating that the doctor said he didn't have celiac so nonchalently when he was never actually tested, I think he is going on the fact that he doesn't have classic symptoms. His symptoms are eczema. My son is 10 months old so of course he can't tell me if his stomach is killing him, but he doesn't have diarrhea, constipation, stomach bloating...etc....so I am guessing that is why his doctor said he doesn't have it. Confusing!! I'm going to a new dietician at Childrens hospital who specializes in gluten and special food allergies in a couple weeks, maybe she can shed some light.

Thanks.

[gf4life]

Is gluten intolerance celiac disease, regardless of the symptoms??

My answer to this question is sometimes.

Sometimes a person has Celiac Disease, but it is in the early stages and the damage is not severe, yet. Other times the person is gluten intolerant without any damage tot he intestines and that is different. But then there are also the cases of Celiac Disease where the person only gets the rash (Dermatitis Herpetiformis-have your son's eczema checked by a dermatologist to see if this is what it really is), or only gets neurological symptoms. They cannot rule out Celiac based on the fact that your son tested allergic to gluten and other foods. In fact food allergies are common in people with celiac disease.

There are also plenty of cases of people being diagnosed with celiac disease even though they have NO symptoms whatsoever and no apparent reaction when they eat gluten. You cannot base a diagnosis purely on symptoms or the lack of them.

Your son is very young and the tests are not very reliable on babies anyhow. I would be interested in hearing what the dietician says. Very few are knowledgable about gluten intolerance (or just gluten in general).

God bless,

Mariann

[Jnkmnky]

aren't the tests for D.H. reliable despite age? In any case, this dr sounds on the verge of malpractice if he's telling you .... nothing .... really. Is he trying to cover his ineptitude with a bunch of crazy talk? I had to print out info from this site when my kid was dx 4 years ago. I called the dr and told him what I suspected was killing my child. He'd never heard of C.D. I told him my appt was the next day, please go to celiac.com and check it out. He didn't. So when I showed up for my appt, I had a total moron to deal with along with everything else. That's when it's time to get a new dr. Which I did. No thanks to that dr, I waded through the info, kept my child (a miracle for sure) gluten free, and spared my family my drs obvious Munchausen by Proxy trip. I swear, keeping my kid sick and me dragging him in every day was the dr death trip this guy was on. Your dr may not be this bad, but he needs to start proving he was awake for those med classes he took. Unless he's operating out of his garage, I think you should tell him you expect better answers.

[Hennessey]

aren't the tests for D.H. reliable despite age?    In any case, this dr sounds on the verge of malpractice if he's telling you ....  nothing .... really.  Is he trying to cover his ineptitude with a bunch of crazy talk?  I had to print out info from this site when my kid was dx 4 years ago.  I called the dr and told him what I suspected was killing my child.  He'd never heard of C.D.  I told him my appt was the next day, please go to celiac.com and check it out.  He didn't.  So when I showed up for my appt, I had a total moron to deal with along with everything else.  That's when it's time to get a new dr.  Which I did.  No thanks to that dr, I waded through the info, kept my child  (a miracle for sure) gluten free, and spared my family my drs obvious Munchausen by Proxy trip.  I swear, keeping my kid sick and me dragging him in every day was the dr death trip this guy was on.  Your dr may not be this bad, but he needs to start proving he was awake for those med classes he took.  Unless he's operating out of his garage, I think you should tell him you expect better answers.

<{POST_SNAPBACK}>

I feel like I have been on my own with this, except for the help of the triage nurse, she is wonderful. Is it true now that if I have him tested for celiac it is to late since I have been trying to keep him gluten free? I hear you have to continue having gluten to be tested. He has already had surgery on his intestines at 10 days old, I hate to subject him to biopsies if unecessary. I am going to research further, his doctor is good, but I'm sure not a gluten specialist and that is where I have to go next. I just want to know his insides are ok. Also I hear testing on children that young is not so reliable. With the blood test for allergies and the skin tests, some results were different for the same items, and things they say were negative are clearly positive. Thanks for your response and Good luck to you and your son.

[Hennessey]

My answer to this question is sometimes.

Sometimes a person has Celiac Disease, but it is in the early stages and the damage is not severe, yet.  Other times the person is gluten intolerant without any damage tot he intestines and that is different.  But then there are also the cases of Celiac Disease where the person only gets the rash (Dermatitis Herpetiformis-have your son's eczema checked by a dermatologist to see if this is what it really is), or only gets neurological symptoms.  They cannot rule out Celiac based on the fact that your son tested allergic to gluten and other foods.  In fact food allergies are common in people with celiac disease.

There are also plenty of cases of people being diagnosed with celiac disease even though they have NO symptoms whatsoever and no apparent reaction when they eat gluten.  You cannot base a diagnosis purely on symptoms or the lack of them.

Your son is very young and the tests are not very reliable on babies anyhow.  I would be interested in hearing what the dietician says.  Very few are knowledgable about gluten intolerance (or just gluten in general).

God bless,

Mariann

<{POST_SNAPBACK}>

Thank you for your response, it helps! It is very confusing. So do you think the best thing to do since my son is so young to really find out is to have a biopsy of intestines? I guess there is not much I can do anyways even if he does have it, I have been treating him like he does so he has been gluten free for a while now or I atleast think he has been gluten free, there are just so many hidden things that I am just learning about. My main concern now is to get him on some kind of formula that he can tolerate, he has other allergies that have prevented him from formula, (was on soy for 7 months until we found out allergic as well) we will try a new one this weekend and hopefully it will work. He will be 1 end of August and is bordering on 20 lbs, to me that is small, compared to my other kids anyways. Thanks again for your reply, greatly appreciated.

[Jnkmnky]

Ok. From what I've understood from your posts, your child has a problem. You think it may be C.D. Do you understand the Celiac diet? Do you realize that even a tiny, tiny, crumb of gluten can cause a reaction that will last several days, at best and damage his villi? If you really want to see the positive effects of a gluten free diet (weight gain, for example), you will need to be 100% sure your child is gluten free for a length of time. Will making your child gluten free screw up testing in the future? YES. But so what? The tests don't scream positive in a reliable way until he's quite older than 11 months.

So what have you got to lose by making him gluten free now?......Positive test results a few years down the road. The opinions of others-this can be a big deal.

What have you got to lose by keeping him on gluten until an age where reliable results are more likley?...**if your child is really sick *as mine was*, you run the risk of developmental delays in all areas. That means, cognitive, and physical. Some of these delays are permanent. My child is small. That's not a big deal for now, but it does bother me that it's permanent and didn't have to be that way. My child has already repeated a grade (he's 7). That doesn't bother me because he's small! My child is in his third year of speech. It hasn't been easy to deal with a child who spent his first three years of life in a foggy haze not able to absorb the information coming at him from the world around him. We believed he was at LEAST mildly autistic until four days gluten free. That's when he spoke his first full sentence! At age 3.

So, believe me when I tell you my opinon. If it was my child, I'd make him 100%gluten free right now. Whether he has c.d. or not wouldn't matter to me. I wouldn't want to repeat the challenges I still face with my own C.D. child. If it screwed up testing in the future, so be it. Eventually, they'll improve testing to the point where a person can be gluten free for a substantial period of time and still get accurate testing. Or, when he's old enough, say 6 years old, you can feed him gluten for the last few months of school, through the summer and into the fall if need be, get him tested and know for sure then. At least if he DOES have C.D., you'll have gotten him through those crucial developmental stages with nutritional absorption benefits that will last a lifetime. If you find he doesn't have C.D. later on, you still fed him an excellent diet in the meantime, took preventive measures to ensure your child's well-being that didn't cause any harm and can celebrate with a gluten filled feast.

All that being said, I'm not a dr. Consult with a dr, of course, since you say your child had intestinal issues anyway. Frankly, a gluten-free diet doesn't hurt anyone. He'd be fine with it. My newest dr, who I like, told me the diet is too difficult to maintain. AS IF I'm going to take him off the gluten free diet! AS IF I should give myself a break and cheat on it once in a while by ordering the kids a pizza! I was shocked. I told her dealing with the after effects of him eating gluten is far worse than maintaining a gluten free diet. I could barely drag myself out of her office because I was so shocked that ONCE AGAIN, I've got the "specialist" giving me totally deadly advice. We've glutened our son 2x that we're sure of in the past 4 years. It isn't difficult to maintain the gluten-free diet. But it's up to you.

By the way, I don't mean to sound bossy. I have strong feelings regarding young *potential* celiacs. I've had to deal with a lot of unnecessary consequences of my child's celiac being undiagnosed for so long. I wouldn' t want another child to struggle the way mine has, just to keep up. He's very nice and friendly and cute, though!

[Hennessey]

Ok.  From what I've understood from your posts, your child has a problem.  You think it may be C.D.  Do you understand the Celiac diet?  Do you realize that even a tiny, tiny, crumb of gluten can cause a reaction that will last several days, at best and damage his villi?  If you really want to see the positive effects of a gluten free diet (weight gain, for example), you will need to be 100% sure your child is gluten free for a length of time.  Will making your child gluten free screw up testing in the future?  YES.  But so what?  The tests don't scream positive in a reliable way until he's quite older than 11 months. 

So what have you got to lose by making him gluten free now?......Positive test results a few years down the road.  The opinions of others-this can be a big deal.

What have you got to lose by keeping him on gluten until an age where reliable results are more likley?...**if your child is really sick *as mine was*, you run the risk of developmental delays in all areas.  That means, cognitive, and physical.  Some of these delays are permanent.  My child is small.  That's not a big deal for now, but it does bother me that it's permanent and didn't have to be that way.  My child has already repeated a grade (he's 7).  That doesn't bother me because he's small!  My child is in his third year of speech.  It hasn't been easy to deal with a child who spent his first three years of life in a foggy haze not able to absorb the information coming at him from the world around him.  We believed he was at LEAST mildly autistic until four days gluten free. That's when he spoke his first full sentence!  At age 3. 

So, believe me when I tell you my opinon.  If it was my child, I'd make him 100%gluten free right now.  Whether he has c.d. or not wouldn't matter to me.  I wouldn't want to repeat the challenges I still face with my own C.D. child.  If it screwed up testing in the future, so be it.  Eventually, they'll improve testing to the point where a person can be gluten free for a substantial period of time and still get accurate testing.  Or, when he's old enough, say 6 years old, you can feed him gluten for the last few months of school, through the summer and into the fall if need be, get him tested and know for sure then.  At least if he DOES have C.D., you'll have gotten him through those crucial developmental stages with nutritional absorption benefits that will last a lifetime.  If you find he doesn't have C.D. later on, you still fed him an excellent diet in the meantime, took preventive measures to ensure your child's well-being that didn't cause any harm and can celebrate with a gluten filled feast.   

All that being said, I'm not a dr.  Consult with a dr, of course, since you say your child had intestinal issues anyway.  Frankly, a gluten-free diet doesn't hurt anyone.  He'd be fine with it.  My newest dr, who I like, told me the diet is too difficult to maintain.  AS IF I'm going to take him off the gluten free diet!  AS IF I should give myself a break and cheat on it once in a while  by ordering the kids a pizza!  I was shocked.  I told her dealing with the after effects of him eating gluten is far worse than maintaining a gluten free diet.  I could barely drag myself out of her office because I was so shocked that ONCE AGAIN, I've got the "specialist" giving me totally deadly advice.  We've glutened our son 2x that we're sure of in the past 4 years.  It isn't difficult to maintain the gluten-free diet.  But it's up to you. 

By the way, I don't mean to sound bossy.  I have strong feelings regarding young *potential* celiacs.  I've had to deal with a lot of unnecessary consequences of my child's celiac being undiagnosed for so long.  I wouldn' t want another child to struggle the way mine has, just to keep up.  He's very nice and friendly and cute, though!

<{POST_SNAPBACK}>

Well and I thought I talked alot....(kidding). Thank you so much for all your advice. I feel the same way you do, he is gluten free and has been for a month or so. Once I found out he was allergic to wheat I started thinking about the gluten, and once I found out the gluten was positive I have done my best to not give him any...I read every label and have the forbidden list next to me everytime I feed him. I was just not sure if gluten intolerance meant celiac, from what I have been reading and all my responses sounds like he could or could not, so I am not taking any chances. I already know he has gluten intolerance so of course I wouldn't give him any. I just wanted to know for sure if it is celiac because of all the other related immune disorders that could come along with it, but if I have to feed it to him to find out then of course I would not. I was hoping if he has an endoscopy sometime I will be able to really know and know the damage if any to his intestines. At 10 days old he had malrotation (twisted instestines and bowel) they put large intestine on one side and small intestine on the other and removed his appendix. Hopefully it will never happen again, which it may or may not...just never know...but that is another whole story in itself. I am just worried that he may have damage now and really want to know. I am going to contact a gastro doctor who specializes in gluten at children's hospital and see what he suggests. I really appreciate your telling me your story. You have been through so much, I was all choked up when reading your post. I hope your son is doing well now, with you on his side he can't lose!

Thanks again, I truly appreciate your honesty.