I Need Some Help

[kimberlypaige]

Hello

I found this site by accident. I have been searching the web for so long, trying to find out what is wrong with my 11 year old son. We have been to doctor after doctor, we have made trips to Valley Childrens hospital and he has had cat & mri scans. No one could tell me what is wrong. Some of our family members have told us that its just in our son's head and that he probably doesn't want to go to school for some reason. I started to beleave them untill my son burped and blew it in my face. His burp smelled like sewage. He told me that he didn't want to burp because it tasted like poop. After the fowl burping starts, his stomack starts to hurt, then it goes away after a few days. Then we'll go for about a month or two before it happens again. He is actually dealing with it right now. It started on Monday with him telling me he was getting that taste in his mouth, then his stomack started hurting. He tells me that it doesn't hurt as bad when he is laying down and it gets worse when he stands up. Today is Wed and when he woke up he told me that it is worse today then it was yesturday. Does this sound familiar to what anyone is going through on this site. If so, please let me know if you think this is caused by Celiac disease and how do I find out if it is and do Dr.'s even know about it. Every Dr. we have seen doesn't have any idea what it could be. I feel so bad for my son because he has been told to tought it out, its not that bad. I don't know what to do to help him. This is the first time I read something that sounds familiar to what he has. I would appreciate any help.

Thank You, Kim

[wschmucks]

How are his bowel movments? It sounds like he is constipated. Laying down often releaves the stomach pain assocaited with constipation and the bad breath is also a common symptom. He may be going every day, but it is still possible that hes constipated. Can you give us more information on his eating habbits? Is his stomach very bloated? How are his energy levels? Celiac can take on serveral forms and doesnt have clear cut symptoms always. Tests that Drs should run: stool sample, food allergy test, blood test for mineral and vitamin defficenies.

Please listen to your child when he says he doesnt feel well. Even if he is faking it-- it is important to know that you are there for him (theyre is always a reason for behaviors). Drs told me for years that my VARIOUS symptoms were in my head and i refused to give up-- diagnoses Celiac 3 months ago

Give us more info and well try to help!

[kimberlypaige]

Thank you for your responce.

He had a bowl movement yesturday. I would consider it normal...not to loose or hard. He eats a lot of top ramen after school and occational soda. It seems to get worse the more soda or sweets he has. I think we are going to have him do a food diary of some sort because I don't know what he eats at school. I know that most of the food he can buy is junk. He told me that he is buying the regular lunch but he is 11 so I'm pretty sure there is something sweet in there. His stomach doesn't look bloated but he tells me when it hurts its in his upper stomack and lower stomack not in the middle. I'm not sure on the energy level because when his stomack hurts he stays in bed as much as possible When he gets up you can visisbly see by the way he is walking that it hurts. I'll try to get more info from him when I get off work today.

Thanks again, Kim

[Fiddle-Faddle]

The foul-smelling burps could be related to acid reflux--which is STRONGLY linked with celiac/gluten intolerance.

Yes, your son's problems could very likely be either celiac disease or gluten intolerance (which many people think is the same thing as celiac, just at an earlier stage).

But they could be other things as well, such as a bacterial infection of the intestines, or even Lyme disease. (Did he ever spend the summer at a sleep-away camp in the woods? He might have gotten bitten by a tick without even knowing it.) Look up Lyme on www.lymenet.com--there are an awful lot of symptoms overlapping with celiac/gluten intolerance, and over half of the people diagnosed with Lyme disease don't recall ever having been bitten by a tick or having developed any rash at all, let alone the famous "bull's-eye" rash specific to Lyme.

There are also other food intolerances, like soy and dairy, that affect people in a way similar to gluten intolerance. It can be a pain in the neck to narrow it down!

Google your city and celiac (example: "Pittsburgh celiac"), and, hopefully, support groups and doctors' names will pop up. Get an appointment ASAP, and in the meantime, read as much as you can on the Internet about celiac AND the other problems that I've mentioned (and other people will come up with other possibilities), so by the time your appointment comes up, you KNOW what the doctor is talking about.

If you have a family history of autoimmune disorders, such as diabetes, thyroid disease, rheumatoid arthritis, lupus, MS, fibromyalgia, unexplained joint pain, acid reflux disease, and eczema, this is important for your doctor to know, as these disorders are strongly linked with celiac and gluten intolerance.

Best of luck, and PLEASE keep us posted!

[Fiddle-Faddle]

Celiac can take on serveral forms and doesnt have clear cut symptoms always. Tests that Drs should run: stool sample, food allergy test, blood test for mineral and vitamin defficenies.

I agree with the first sentence.

I partially disagree with the second: celiac does not show up on a food allergy test, and neither does gluten intolerance, and the stool sample tests that most doctors run is for bacterial infections/parasites, NOT celiac (though it might be a good idea to check for infections and parasites).

The actual blood tests needed are those in a "celiac panel:"

1. EMA (Immunoglobulin A anti-endomysium antibodies)

2. AGA (IgA anti-gliadin antibodies)

3. AGG (IgG anti-gliadin antibodies)

4. tTGA (IgA anti-tissue transglutaminase)

This site: Open Original Shared Link has an enormous amount of information.

[kimberlypaige]

Oh boy, now you have got me wondering...

He has been bit by a tick. He goes camping every year. A couple years ago when he came home I found one embedded in his scalp. I'm going to get him tested right away.

On the burping subject, I have never smelled anything like that coming from a persons mouth. It literally smelled like a sewer. As if he had swallowed one of those stink boms. He said that its tastes like poop and he has vomited from the taste in his mouth.

Thanks Again, Kim

P.S. Just checked out the lyme disease site. I'll still have him checked but I don't think that is what he has by reading about it.

[wschmucks]

I agree with the first sentence.

I partially disagree with the second: celiac does not show up on a food allergy test, and neither does gluten intolerance, and the stool sample tests that most doctors run is for bacterial infections/parasites, NOT celiac (though it might be a good idea to check for infections and parasites).

The actual blood tests needed are those in a "celiac panel:"

1. EMA (Immunoglobulin A anti-endomysium antibodies)

2. AGA (IgA anti-gliadin antibodies)

3. AGG (IgG anti-gliadin antibodies)

4. tTGA (IgA anti-tissue transglutaminase)

This site: Open Original Shared Link has an enormous amount of information.

Agreed-- I didnt mean that a food allergy test would offer a diagnosis for Celiac, but this could just be a food allergy-- an area that should be covered considering his symptoms. These were suggestions to other problems that might be present. Same with the stool sample, parasite and infection need to be ruled out. Although both can give a Dr reasons to proceed with Celiac testing (my food sensetivity test came back positive for all gluten containing grains, and the stool sample would show high fat levels if Celiac).

[ravenwoodglass]

Oh boy, now you have got me wondering...

He has been bit by a tick. He goes camping every year. A couple years ago when he came home I found one embedded in his scalp. I'm going to get him tested right away.

On the burping subject, I have never smelled anything like that coming from a persons mouth. It literally smelled like a sewer. As if he had swallowed one of those stink boms. He said that its tastes like poop and he has vomited from the taste in his mouth.

Thanks Again, Kim

P.S. Just checked out the lyme disease site. I'll still have him checked but I don't think that is what he has by reading about it.

You are describing my son's breath quite well. That is not normal. I would take him in to the doctors the next time you notice the odor and have him breathe in the doctors face. I would also get the celiac panel done as soon as you can along with other testing mentioned. I also got the 'he just doesn't want to go to school' routine and i got it for my daughter as well. My daughters ped actually threatened her with a GI doctor doing 'horrible' tests on her if she didn't stop complaining. When we finally did get a GI referral she did get the biopsy, which really wasnt bad, and it was positive. Also some insurance companies allow you to bypass your ped and make an appointment with a GI doctor directly. If yours does allow that you may want to consider doing just that.

[dilettantesteph]

It sounds a lot my son who had GERD caused by celiac disease. GERD can be helped by a diet low in acid foods. That means no chocolate, soda, citrus, fatty foods, berries, and tomato. There are over the counter medications like prilosec that helped some. What helped the most was when the doctor told us he had celiac and he stopped eating gluten. After a few months of that he was able to go back to all the acid foods again. You should definitely have the celiac test done. Even if he tests negative, it is worth trying the gluten free diet to see if it helps. It is possible that he is gluten intolerant.

[christian.808]

Hello Kim,

There are so many sites online with great information. Here is Open Original Shared Link with info.. I am not sure where you live but maybe google Gluten Free Doctors in your area, if you feel that this may be the issue.

If push comes to shove, go gluten free with your son for a few months and see how he is then. It is a concern though about his issues. I would not stop trying to find a doctor though.

Good Luck in your seeking. I hope the responses here have been helpful.

Christian

Hello

I found this site by accident. I have been searching the web for so long, trying to find out what is wrong with my 11 year old son. We have been to doctor after doctor, we have made trips to Valley Childrens hospital and he has had cat & mri scans. No one could tell me what is wrong. Some of our family members have told us that its just in our son's head and that he probably doesn't want to go to school for some reason. I started to beleave them untill my son burped and blew it in my face. His burp smelled like sewage. He told me that he didn't want to burp because it tasted like poop. After the fowl burping starts, his stomack starts to hurt, then it goes away after a few days. Then we'll go for about a month or two before it happens again. He is actually dealing with it right now. It started on Monday with him telling me he was getting that taste in his mouth, then his stomack started hurting. He tells me that it doesn't hurt as bad when he is laying down and it gets worse when he stands up. Today is Wed and when he woke up he told me that it is worse today then it was yesturday. Does this sound familiar to what anyone is going through on this site. If so, please let me know if you think this is caused by Celiac disease and how do I find out if it is and do Dr.'s even know about it. Every Dr. we have seen doesn't have any idea what it could be. I feel so bad for my son because he has been told to tought it out, its not that bad. I don't know what to do to help him. This is the first time I read something that sounds familiar to what he has. I would appreciate any help.

Thank You, Kim