Hi all,

My boyfriend, who had celiac disease - probably had seizures due to the celiac disease. Recently, he had multiple seizures one night and did not make it. At the moment, I thought he was having regular seizures that he usually comes out of - this time it wasn't the same. After he had 3 and stopped breathing (or his heart stopped, I don't know which), I called 911.

I'm having a hard time and wondering if I did the right thing, if I waited too long, or if I couldn't have done anything. He had status epilepticus, which is when the person can't recuperate between seizures and it ends up being a very dire situation. I didn't know that at the time.

Anyway, if I know a lot about regular epilepsy, a bit about celiac disease, but not the combination of the two. I am grieving for my boyfriend's loss - we probably would have been engaged or married this year or next.

Any help would be appreciated - I just feel like I could crawl into a hole and die myself. This life doesn't seem worth it without him - thinking that his death is partly my fault is worse too.

Hi:

I'm very sorry to hear about your boyfriend. I can't imagine how painful this must be. I do think, however, that you are not to blame for his death. It sounds like he had a history of seizures and that this made you think he was experiencing something familiar.

I don't see what else you could have done once he was in status epilepticus aside from calling 911, which you did. Everything that would have been done to him in an emergency department invovles stuff that you would not have been able to do: put an tube down his airway and supply him with oxygen or even breathe for him; test and adjust his blood glucose if necessary; give him IV meds aimed at stopping the seizurezs; monitor his heart, breathing, and other vital signs; restart his heart; etc. Status epilepticus is a medical emergency. In some situations, it doesn't even respond to first-line and second-line meds, and at that point there is no agreement in the medical community about how to proceed next. Calling 911 was all that you could do on your own.

As for celiac disease and seizures, it's pretty uncommon. A few studies have put the incidence of epilepsy among those with celiac at around 1%, with some of those folks having an extremely rare syndome of celiac disease, seizures, and a certain pattern of brain calcifications. This syndrome wasn't even looked at much until about 10 years ago. Much of the basic information on celiac doesn't even mention seizures or do so in the most general way. I don't know what the rate of fatal seizures or status epilepticus is with celiac. I'll check around, including Harrison's (the most relied-upon textbook of internal medicine), but I'm willing bet there won't be a reliable figure to be found because it is that extraordinarily uncommon. I wouldn't expect someone with celiac to go into status epilepticus either. Had the risk been known - to your boyfriend and/or his physicians - you should have been warned about it and told what to look for in terms of symptoms and what do if you thought he was in trouble. You weren't given any such information, it sounds like, so I can't see how you could possibly be to blame. You did your best by calling 911 and that was all that you could do.

I'm so sorry for the loss of your boyfiriend and that you are going through such a painful time. I think it would be only natural to ask what more you could do in such a situation. But I think the answer is that there wasn't anything more you could do.

I can give you links to articles about celiac and seizures. I don't think they'd be much help as most either talk about that rare syndome of seizures, celiac, and brain calcifications that I mentioned above or simply report that there is a connection between celiac disease and seizures - not much more is known aside from that. If you need other med-based info, I can dig around. If you look at the protocol that emergency department's use to treat status epilepticus, you'll realize was nothing you could do.

I hope some of this helps in what must be a very bleak time. Please be gentle on yourself.

Hi there:

Your post is wonderful and informative. I love when people actually have a great background and can take the time to write about what they know. I just recently learned about brain and body calcifications this past week or so, and it angers me that I didn't know anything about it until recently. I was the one who stumbled upon the topic of celiac disease and suggested he get tested. If there were supplements or dietary changes, I suggested it to him. He didn't think he had epilepsy and that his seizures were caused by celiac disease, so he didn't take the phenobarbitol and the other medication. He took it at some point, but felt so zombie-like and 'dumb' that he didn't want to live that way. I wasn't there when he went to doctors, so I wasn't sure what the long term plan for him was or if he really needed medication or not.

I understand what you're saying about the whole post-status-epilepticus treatment thing -- I didn't know what to do. I had learned CPR a long time ago, but he was slumped in a corner next to his bed and bedside table, and I couldn't get him flat at all. With all the goop that seizures bring in the mouth and, in this particular rare case, his nose -- I didn't think it would help, I thought he'd have too much junk in his throat, and I may do more damage than good. I had no idea how to get rid of the foam and I thought if I *somehow* got a gag reflex, I would lose all composure and that would be not helpful. This is the kind of stuff that makes me feel guilty.

I tried pulling him in a straight position, but he was limp weight and he's about 100 pounds or so more than me, I simply couldn't get him straightened up. The person on the 911 call didn't seem to coach me through anything and just kept impatiently telling me to get him straight before she could tell me what to do. I felt so helpless. The only thing I thought I'd do while he was sitting up, was to take a firm hand and try pressing into his chest a few times in case his heart stopped. I know that I was probably doing a horrible job - both because I wasn't certain if his heart did stop, I didn't want to hurt him, and for somebody his size, you need a full body vigorous pump on his chest. The emergency tech was a big guy and I could see the force put on his chest. It's enough to look like he would break a rib.

Anyway - I don't know if this makes sense, but when he stopped breathing, something in the back of mind said "this isn't looking well, this is probably a lost cause" and I felt so helpless. I still called 911 but by the time the ambulance came, he hadn't been breathing for a good ten minutes and I prayed in the back of my mind and thoughts whirled "He hasn't breathed in 10 minutes or so, I know that causes brain damage. I know for sure he does NOT want to be a vegetable. If that is the case, I hope he passes."

It just bothers me that I didn't get to say goodbye to him. The night before was a good day, but at night, I got some email from a coworker and we ended up fighting over some stupid project that I wanted him to bid for. I didn't know it was going to be his last night, and my typical mad girlfriend craziness and comments came out. I just feel horrible now.

He called me after the first seizure - and I noticed his apartment was freakishly hot, so I turned the heat down. He said his head hurt so I gave him water with Alleve and a little bit of tylenol to bring his fever down (like he usually gets after a seizure). He was okay for about 20 minutes or more, and then he had a second one -- second ran into a third. I was thinking after the second I'd give him the phenobarbitol he had around, but he was in no shape to swallow anything. 2 seizures bugged me as usual, but it didn't alarm me since he's had 2 in one night before. The third one -- made my heart sink and I felt some panic inside me. That was a small, short one, but then after his post-seizure raspy breathing for a few minutes, it abruptly stopped, which was very abnormal.

I just hope he felt loved, I hope he knows that I didn't know it was going to end like this. I feel like I failed him, like I should have known better and I should have done more. I have so many emotions right now. I don't even know if he can hear me, I don't know where he is. I don't know if there's anything after this life. What kills me is that he didn't want to die. He probably died not knowing that he did - he was trapped in his head in a seizure. I suppose he died without pain that way, and that's good. I just don't think either of us was ready for him to go. Now I'm left here without him, and I just don't know what to do.

Thank you for listening. The more information I can get, it helps me sort my thoughts out.

Hi:

The details of your boyfriend's death are heartbreaking. In addition to losing the one you so obviously loved, you have been through quite a traumatizing experience. But after reading and rereading your post, the one conclusion that I come to is that you did all you could. You really did. It sounds like he needed immediate, involved medical intervention such as that done by a trauma team in an emergency department (e.g., very quick deep suction, very quick intubation, two large-bore IVs with a benzodiazepine started ASAP, continuous monitoring, blood draw, etc.) and that anything less would not have been enough. You did all you could. I'm so sorry that you were in such a horrendous situation. I hope in time you can find comfort in the fact that you did do all that you could and that you did much more than many people would be able to do.

As for him realizing what was happening and being trapped in his head, that may very well not have been the case. I thought that he had had tonic clonic, or "grand mal", seizures. If so, one hallmark of such seizures is loss of consciousness - the person doesn't remember what happened during the seizure. There are many other types of seizure, and loss of consciousness occurs with some others. The odds are that he did not realize what was happening and was not in any pain.

You did not fail him. You stayed at his side and tried to do all you could. To me, that's an expression of love all by itself. And your love for him is obvious in your comments.

I'm sure not being able to say goodbye and feeling so helpless as you tried to help him must be a horrible weight to carry around. I wish I could say I knew where he is or whether he knows how much you miss him. I know when I lost someone very close to me - in a situation where I did get to say goodbye at length - these questions plagued me for quite a while, as did a sense of completely unreasonable guilt. And the pain initially was so bad that I felt that I would not be able to bear it. I hope you find some answers to the bigger questions you pose or at least a sense of peace with not knowing. And please do try to be gentle with yourself.