Celiac Disease Vs. Metabolic Disorder

[Guest mesasmom]

I am going to try and keep this as short and as to the point as possible. Last February I, with the advice of a friend who has Celiac, pursued the possibility of my son having Celiac. I took him to a ped. GI and had the testing done. Celiac showed up in neither the blood testing or the EGD, biopsies. I continued him on a gluten-free diet going on the assumption that he had it and was too young for it to show up (he was 16 mos at the time of testing). The ped GI ordered testing through Prometheus Labs and I had to wait for prior authorization from the ins. co. I didnt push the issue and said I would do this last test if the dr. called me back (which now, 9 mos later, they haven't). My son was a million times better on a gluten-free diet so I didnt need something in writing to tell me he shouldn't eat gluten. I was content just "assuming" thats what it was. Then in Aug he had an absence or petit mal seizure. Three of my son's doctors feel that because he had such a positive reaction to the dietary changes (asthma, reflux, diarrhea all virtually went away within a week of going gluten free) and then had a seizure that it could be a metabolic disorder. I had no idea what that was. Basically they were saying that he might have a chemical "malfunction" that is not allowing his body to break down the gluten in foods and then triggered a seizure. He is currently under going testing for his seizures. I guess what my question is, is this....Has anyone else had anything like this, or heard of it? I was so excited that we had finally figured out what was wrong with him and now they are totally throwing a wrench into the works. Its like after all my research and pushing I finally was satisfied that he had celiac and now they are telling me it may not be that after all and may be something completely different????? To confuse things even further, after I figured out that my son needed a gluten free diet, I put my then 3 yr old on a gluten free diet as well and she immediately started gaining weight, had more energy and stopped having tummy aches. So if its not celiac in my son, whats wrong with my daughter???? I am so confused...AGAIN. Any advice or info would be greatly appreciated.

Thank you so much!

Amanda

[happygirl]

Amanda,

I'm sure others will add more insightful things , but I just had to quickly post a few thoughts:

Your children might be non-Celiac gluten intolerant, so they would never test positive for Celiac. The bloodtests and endoscopies do not test for non Celiac gluten intolerance. So if you kids do better off gluten, then keep them gluten free! Go with your gut! Or, it could be Celiac, and because he is young, it just isn't showing up yet. Unless you put him back on gluten, you won't know....but honestly, there isn't much difference in 'treating' gluten intolerance and Celiac (this coming from top doctors at NIH and Johns Hopkins, amazingly!)....the treatment, as you know!, is a gluten-free diet. Many doctors are not aware that you can react to gluten, just not in a Celiac damaged way (celiac technically means villous atrophy, not "I get diarrhea when I eat gluten" )

I don't know anything about metabolic disorders (hence, I'm not much help here), but if that is the theory, would he have to be eating gluten for a seizure to occur? If he was gluten free, then ....?

I just wanted to offer some support and I sincerely hope that you find some helpful answers. Hopefully someone on here witll have more knowledge. Good luck to you and your family.

[Nancym]

Well, it certainly could be more than one thing going on. But if the gluten free diet is making everyone healthier, seems like a no-brainer to me.

[marciab]

Amanda,

It is always best to check with your son's doctor concerning any questions, but I thought my story might help you.

Are you aware that people can have seizures from gluten ? I believe this website explains it very well.

Open Original Shared Link

I am one of those who has nuerological symptoms like ataxia and seizures (myoclonus) from gluten. I had petit mal seizures too and knock on wood, have not had one of those lately either.

From what I understand and have experienced for myself, the smallest amount of gluten can cause me to have seizures now. But, I don't always respond to gluten with seizures. I did in the beginning but not anymore. I licked an envelope last week and did not have seizures.

Is it possible that your son digested some gluten ?

I've only been at this for 15 months, but I didn't want to leave you hanging. Others here have more experience than me and can probably explain this better...

marcia

[Guest cassidy]

I can't comment on the seizure side of things but I hope you will keep your kids gluten-free since they did so much better that way. Doctors sometimes suggest things that don't make sense and I would hate for them to tell you that you should try him on gluten again just to see.

Many of us would like definite answers and diagnoses that we really have celiac, but the tests just aren't that accurate. My blood work was negative but I feel like a new person on the diet. Luckily, I haven't had any other problems but I didn't listen to the crazy doctor who told me to do a gluten challenge for a few months and then do another blood test. Who wants to make themselves sick for a few months?

Hope you get some answers and he starts feeling better. Do you think anyone in your family has celiac? I'm pretty sure that my grandfather (now deceased) had it and my mother's sister - that made me feel a bit more like I was on the right path.

[Ursa Major]

Amanda, gluten intolerance can definitely cause seizures. It is very possible that your son had the seizure as a result of accidental gluten ingestion. Your doctor's theory doesn't make any sense at all to me. Keep your kids on a gluten-free diet, and be very diligent with it, so your son won't have any more seizures. To really keep him safe, it would be advisable to make your house totally gluten-free. Meaning that you and your husband should be gluten-free as well, at least in your house.

That way you'll likely find out which one of you the kids inherited it from, too.

[janicelm]

I am going to try and keep this as short and as to the point as possible. Last February I, with the advice of a friend who has Celiac, pursued the possibility of my son having Celiac. I took him to a ped. GI and had the testing done. Celiac showed up in neither the blood testing or the EGD, biopsies. I continued him on a gluten-free diet going on the assumption that he had it and was too young for it to show up (he was 16 mos at the time of testing). The ped GI ordered testing through Prometheus Labs and I had to wait for prior authorization from the ins. co. I didnt push the issue and said I would do this last test if the dr. called me back (which now, 9 mos later, they haven't). My son was a million times better on a gluten-free diet so I didnt need something in writing to tell me he shouldn't eat gluten. I was content just "assuming" thats what it was. Then in Aug he had an absence or petit mal seizure. Three of my son's doctors feel that because he had such a positive reaction to the dietary changes (asthma, reflux, diarrhea all virtually went away within a week of going gluten free) and then had a seizure that it could be a metabolic disorder. I had no idea what that was. Basically they were saying that he might have a chemical "malfunction" that is not allowing his body to break down the gluten in foods and then triggered a seizure. He is currently under going testing for his seizures. I guess what my question is, is this....Has anyone else had anything like this, or heard of it? I was so excited that we had finally figured out what was wrong with him and now they are totally throwing a wrench into the works. Its like after all my research and pushing I finally was satisfied that he had celiac and now they are telling me it may not be that after all and may be something completely different????? To confuse things even further, after I figured out that my son needed a gluten free diet, I put my then 3 yr old on a gluten free diet as well and she immediately started gaining weight, had more energy and stopped having tummy aches. So if its not celiac in my son, whats wrong with my daughter???? I am so confused...AGAIN. Any advice or info would be greatly appreciated.

Thank you so much!

Amanda

[Guest mesasmom]

I am of course, no matter what new test results and tests the doctors come up with, going to keep my two youngest gluten free. I was just curious if there was any connection with the two....celiac and seizures. So...thank you guys for clearing that up. I am glad to know that there is a connection and that I'm not crazy. As far as other family members, my two youngest children have it. I am adopted so I do not know my family history so as soon as I figured out what was going on with my son I had myself tested up the wazoo and everything came back normal. I, other than a slight lactose intolerance when i was younger, do not have any real symptoms. My husband however, refuses to be tested. I suspect it came from him. He has been diagnosed with IBS for years now, has contant stomach "issues" and he for a short time period was having absence seizures. I really feel he has celiac, or some form of gluten intolerance or sensitivity but refuses to be tested because he does not want to have to eat "that food". I've told him if it was between slowly killing himself or eating "that food" what would be choose and being as stubborn as he is, he said he'd rather be sick. So, I guess I just want to say thank you for the reassurance that I am doing the right thing and am not crazy. This site is truly a wonderful thing with so many amazing people! Thanks to everyone!

Amanda

[Betscc]

I am of course, no matter what new test results and tests the doctors come up with, going to keep my two youngest gluten free. I was just curious if there was any connection with the two....celiac and seizures. So...thank you guys for clearing that up. I am glad to know that there is a connection and that I'm not crazy. As far as other family members, my two youngest children have it. I am adopted so I do not know my family history so as soon as I figured out what was going on with my son I had myself tested up the wazoo and everything came back normal. I, other than a slight lactose intolerance when i was younger, do not have any real symptoms. My husband however, refuses to be tested. I suspect it came from him. He has been diagnosed with IBS for years now, has contant stomach "issues" and he for a short time period was having absence seizures. I really feel he has celiac, or some form of gluten intolerance or sensitivity but refuses to be tested because he does not want to have to eat "that food". I've told him if it was between slowly killing himself or eating "that food" what would be choose and being as stubborn as he is, he said he'd rather be sick. So, I guess I just want to say thank you for the reassurance that I am doing the right thing and am not crazy. This site is truly a wonderful thing with so many amazing people! Thanks to everyone!

Amanda

Amanda:

I have two children with metabolic disorders and my oldest just got bloodwork back today that confirmed Celiac Disease also. I did a search for metabolic disorders/celiac and your posts came up immediately. I am glad to find such a knowledgeable community and am sure I will be reading the boards closely to get help with my son's diet and many other things.

You should definitely find out exactly what disorder your doctors are talking about and then do a search for sites that are specific to that disorder. Metabolic disorders are very serious and many involve a visit to the nutritionist and an emergency protocol letter. My guys do not metabolize fats like most people do. When they are ill they need extra glucose usually administered by IV. Any metabolic disorder should be taken very seriously but can be managed once you know what your child needs. Once you find out exactly what metabolic disorder they are suspecting, you can research it more thoroughly. Good luck--they are usually rare but serious, although manageable when you know what is needed.

I guess my son is proof that you can have both.

Elizabeth