Epilepsy For 20 Years Might Be Related To Celiac. Advice?

[StacyLynch]

My son is 23 and has had intractable epilepsy for 20 years. 26 failed meds. A new doctor did labs and it showed

IGA2 subclass 11, 2 points low out of range. Iga Serum 73 low  with a normal range being 81-463. Could this possibly be celiac? or gluten sensitivity? We have been referred to a allergist. The doctors diagnosis from the labs he did is.

1) 345.9 Seizure
2) 279.9 Immune Mechanism Unspecified Disorders
3) 579.8 Food Intolerances
4) 279.01 IgA  Selective Deficiency
5) 277.9 Neurotransmitter Disorder

 

I know that neurotransmitter disorder is the epilepsy. The other 3 he also told me is leaning toward "leaky gut". He said that everything above could be why his seizure medication have never worked. He said a gluten intolerance can cause inflammation. Waiting on approval from insurance to see the allergist. Thought I would join this group.

[kareng]

Sure. It could be Celiac but you want to get tested for that before you take him off gluten. I am not sure that his total serum IGA is low enough to effect the IGA based Celiac tests, but I would make sure they did the IGG a version, too.

"Is an IgA result of 39, where normal is 81-463, considered deficient and could it invalidate anti-IgA tests?

Any level of IgA above 20 mg/dl should make the tTG-IgA test valid, regardless of age."

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More info on low IGA and Celiac.

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[StacyLynch]

He had 3 days of seizure clusters, almost had to be admitted. I bought some whole wheat top quality bread that morning before the seizures started. He had 4 pieces. I was desperately so I started the gluten free diet, and he has been seizure free for two days and his pattern well he would of normally had another seizure by now, he has them all the time. I think I have to keep going like this but will certainly give gluten before the test. The problem is I don't know how long it will take insurance to approve more testing. I would like to the gluten free diet to see. Do you think once it gets approved for the testing that a few days eating gluten will make the test accurate. At least if I see Hugh seizure improvement I can tell neuro and allergists. Even if it's not celiac he could be gluten sensitive due to the low iga serum right?

[cyclinglady]

No, he has to be eating gluten for 8 to 12 weeks daily prior to the blood panel. I would insist on the full panel because of his low IGA. There is no test currently that determines a gluten sensitivity. His low IGA can give weird results on the blood test. An endoscopy with at least six biopsies can help to detemine intestinal damage.

Any medical doctor can order the panel. I think it is around $400. Or you can go gluten free but it can be difficult to maintain without a firm diagnosis. But it is possible. My husband did that 14 years ago per the advice of my allergist and his GP. It worked! Was a tough first year cheating and and symptoms returning. Then he went gluten-free and never cheated. I got my diagnosis two years ago. Wierd that we both have gluten issues. I only presented with anemia. But he will tell you that I have received more support from family and medical with my diagnosis.

If you choose the diet, you must stay on it for six months.

I wish you and your son well.

Please research Karen's recommended site. There seems to be a link between epilepsy and celiac disease.

[StacyLynch]

Panel? They did the panel and got this.

 

I am looking at the labs now and there are number for immunoglobulin G, sub class 1,2 3,4 whatever that means. The primary care wanted to hand it over to an allergist.

He also has very low serotonin and dopamine on the labs.

 

Diagnosis
1) 345.9 Seizure
2) 279.9 Immune Mechanism Unspecified Disorders
3) 579.8 Food Intolerances
4) 279.01 IgA  Selective Deficiency
5) 277.9 Neurotransmitter Disorder

 

[kareng]

It doesn't look like they did a Celiac test. I gave you a link to a great, reliable site for more info. You could share it with your doctors

[StacyLynch]

Yes, it was just immunoglobulin G, sub class 1,2 3,4. So I know he was not checked for Celiac. I also have been reading that total serum IGA on just a regular lab test needs to be HIGH to lead towards celiac or gluten sensitivity.  My sons is LOW? am I missing something?

[kareng]

Yes, it was just immunoglobulin G, sub class 1,2 3,4. So I know he was not checked for Celiac. I also have been reading that total serum IGA on just a regular lab test needs to be HIGH to lead towards celiac or gluten sensitivity. My sons is LOW? am I missing something?

I'm sorry. I have given you a link to Celiac experts. According to the link, a slightly low IGA means nothing and you should be able to test for Celiac. I am traveling today so it's hard for me to copy and paste- you will need to look at them .

Edit. I am bouncing along - in and out of data coverage. College boys keep texting & threatening to eat burritos if we don't agree to feed them when we pick them up!

[murphy203]

Just want to say how sorry I am about the seizures. If it were me, and gluten-free is working, heck with a formal diagnosis, just keep him gluten-free. For the record, I have a 22 yo son with type 1 diabetes AND seizure disorder. Fortunately, he responds well to seizure meds and has been more than 2 years without one. Seizures are so darned tough to experience, from his perspective and yours. Keep us posted on how it goes... maybe you can ask for the celiac panel ordered ASAP without having to go to a gluten challenge.

[StacyLynch]

Thank you Murphy. Yes, 20 years, 26 failed meds, 2 brain surgeries, keto diet, IVIG, ACTS, NOTHING helped. We have NEVER going gluten free  until a few days ago. I appreciate some of you saying keep him eating gluten but this past week he went into status seizures for 3 days. It is almost like i'm afraid to start gluten if they might be a triggering factor. I am wondering if a intestine biopsy, even OFF of gluten would give a diagnosis. I honestly think if I go to neuro. on Tuesday and tell her and BEG for celiac panel, well I hope she will do it. If he has one more round of status seizure this week he has to be admitted with a feeding tube. He just looses swallowing reflexes and I cant even get him to have insure.

 

If he starts having regular seizures today, I might just give gluten back. I read that its NOT a instant fix, can take months to help. Also, who knows if he has other food intolerances. I wish they would of found something like this before taking part of his brain out.

 

 

On a happy funny note. I have 8 year old twins and have made tons of gluten free baked goods. They are clueless, lol.  Heck, I heard gluten can be bad for everyone. I might just do a gluten free household!

[murphy203]

I am really sorry about that -- the seizures are terrifying to me (and my son's freshman roommate!!! But that is another story, LOL), and debilitating for my son -- no doubt, yours, too. You have been through the wringer, for sure. I hope it is, finally, something as simple as removing gluten from his diet. WFIW, I had a period of unexplained and complicated neuro problems myself and 3 months in a row loading rounds of IVIG -- felt great afterwards, but no improvements in neuro responses. I was tested sero-negative ten years ago for celiac -- this time again, but with positive biopsies from an anemia dx. I read somewhere that we only test TTG antibodies, and ignore all of the other ways our bodies may be reacting. I am too new at this to understand fully. My son is actually spending the weekend with his second college roommate, and good friend, who is now PhD student genetics, and he plans on asking him for more info. I feel better gluten-free, which is super ambiguous, right? But it's enough to keep me on the gluten-free path for now.

[LauraTX]

Yes, it was just immunoglobulin G, sub class 1,2 3,4. So I know he was not checked for Celiac. I also have been reading that total serum IGA on just a regular lab test needs to be HIGH to lead towards celiac or gluten sensitivity.  My sons is LOW? am I missing something?

 

Hi Stacy, it looks like you may be a little confused on the tests.  The ones that were run were just the total IgG with subclases, and total IgA.  These are the general immunoglobulins that represent all of the specific IgG and IgA antibodies together.  The Celiac tests are the Tissue Transglutaminase (ttg) IgA and IgG.  They are different in that they test only for the very specific antibody that is indicative of Celiac disease. That test was NOT done on your son's panel.  His total IgA is a different thing than the ttg IgA.  The names look similar but are not the same thing.  The ttg IgA is what will will be high indicating celiac, NOT the total IgA that was run

 

Total IgA being low can just be a fluke, but it can also be indicative of a greater problem like an immunodeficiency.  Please keep the appointment with the allergist, usually they also do immunology, and get that looked into.  Get the ttg IgA (more specific test) and ttg IgG tests done by any doctor who will order the labs.  His total IgA being low may lessen the accuracy of any specific IgA antibody test, but will still work because it isn't so low it is near absent. .

 

Do you have the results for IgG and IgG subclass totals?  If you would like to post those, I am unfortunately very familiar with all that as I have common variable immunodeficiency and lack IgA and IgG.  So, hopefully I can give you something to go on with those results and help you steer in the right direction with doctors to save you some trouble.

[StacyLynch]

Yes, I have the IGg subclass labs. They all seem in rage. All I really know is IgA  Selective Deficiency is a diagnosis and food intolerance. I just stumbled on this room. This could be a milk allergy for all I know. That being said, he has had uncontrolled seizure for 20 years. I would think that a milk, nut, egg or any major food allergy would of killed him by now. I am lost really.

[StacyLynch]

Lauratx  immunodeficiency, can that be due to leaky gut?

[LauraTX]

If his IgG and the subclasses are all normal range, I can confidently say you can breathe a little bit in that area.  Just having low IgA is not a big deal if all the others are intact.  IgG has the predominant role in protection against infection so unless he is getting sick all the time, that is not something to worry about.  Those kinds of immunodeficiencies are inherited and not caused by things like leaky gut.  

 

If you want to get his immune system completely checked out to erase any possibility of something specific being wrong, seeing the allergist/immunologist will not hurt.  There is something called "selective IgA deficiency" and usually that is something that doesn't need treatment. Per the Immune Deficiency Foundation: 

 

"Individuals with Selective IgA Deficiency lack IgA, but usually have normal amounts of the other types of immunoglobulins. Selective IgA Deficiency is relatively common in Caucasians. Many affected people have no illness as a result."

here is the full article on that.  Remember that a lot of the things they talk about apply to people who may have much less IgA than your son, and lack other things like IgG, so please don't get scared about all of it.  A lot of the people they deal with are closer to "bubble boy" type issues.

 

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At this point, I really think the next step is to get properly tested for Celiac disease, so you can know without a doubt if that is it.  Have the primary doctor, or any doctor, order the Celiac lab tests.  Get him in to a GI specialist to have an endoscopy done so they can take a look around in there and get biopsies-make sure they take 6 in the small intestine since damage can be patchy.  

 

The diagnoses that are listed on the lab slip are there as a guide for the lab and insurance that explain why they were ordered, and can include things that are suspected but not totally confirmed.  I learned that from a lab technician when I asked her about them, when I had some things listed on there that were a bit scary.  So make sure to follow up on everything and get it done properly - have him eating gluten for tests.

[StacyLynch]

Laura, besides almost daily seizures, he is NEVER sick. I can't remember the last time he was actually SICK. What the doctor said, regarding the low IgA serum, and other dx is that its leading towards leaking gut. I don't know if other food intolerance besides gluten can cause that. He said leaky gut can cause inflammation in the blood stream and in turn irritate a neurological problem. 20 years of uncontrolled seizures is up and beyond a BIG neurological problem.

[LauraTX]

Laura, besides almost daily seizures, he is NEVER sick. I can't remember the last time he was actually SICK. What the doctor said, regarding the low IgA serum, and other dx is that its leading towards leaking gut. I don't know if other food intolerance besides gluten can cause that. He said leaky gut can cause inflammation in the blood stream and in turn irritate a neurological problem. 20 years of uncontrolled seizures is up and beyond a BIG neurological problem.

 

Absolutely leaky gut can exacerbate the neurological problem.  So can untreated Celiac disease.  Good to know he isn't sick much on top of everything else.