I need a little help from some of you who are more knowledgeable on the medical side than am I.  (That is most of you)

What have you heard about a link between Celiac disease and CH?  A good friend of mine who was just diagnosed with Celiac was researching it and found someone claimed a link between Celiac and CH.  I did some searching online today and all I found were some headlines on some Celiac blogs purporting a connection, but other than one woman who in a loooooong list of varied ailments she had been diagnosed with said she was diagnosed with CH, but was only prescribed NSAIDS.  To be honest, that did not surprise me all that much, but the symptomology didn't quite fit from what she wrote.  Another posted a question concerning a friend with CH who blamed it on beer and they were trying to see if there is a link. 

If anyone has any knowledge of this I would appreciate the help.  I personally don't see a link, but I'm willing to look under any rock that has any real hope to it. 

Jerry

On any support group you will encounter many folks who have little understanding with how the scientific mind works. It's so easy to assume that if, "A" comes after "B", the two events may/must be linked or that "B" has caused "A". This common assumption is the source of much confusion and misdirection.

Even if you follow the best medical research, we don't assume that any one report about some event can stand alone as "true". Good scientific work requires a number of studies which show the same relationship operating before there will be a broad agreement on the source/cause of the event being studied.

To your question: no link, suggestion along these lines that I've seen.

I do not suffer from "celiac" disease, but my advice is to completely forget about "celiac" disease.  It's a very small group of people that are included in the very large group of people that have gluten "allergies" or "sensitivities".  I have seen such a huge number of various ailments that have gone away after people stop eating gluten, that at this point I think it can cause just about anything.  Myself, completely out of nowhere I started having grand mal seizures when I was 23 that would not respond to any medication or therapy.  This went on for 5 years until I quit eating gluten and all epileptic symptoms went away (as a side note, I have never had ANY of the typical digestive problems associated with gluten problems) As far as other people, I have personally seen schizophrenia, skin problems, nasal allergies, muscle pain and a host of other junk that seem to mysteriously go away forever after people have stopped eating gluten.  That being said, it is no magic bullet.  I still have chronic cluster headaches, going on the diet has not seemed to do anything for them.  What I do think (and this is completely my opinion) is that it seems like many times it can go for your weakest link, and end up producing all sorts of strange symptoms that most doctors will tell you is not possible.  Stop eating gluten for a month or 2 and you will probably know if it's affecting you.  It would not surprise me at all if it greatly helped some peoples clusters, I am highly doubtful though that it is an actual "cause".

-Ricardo

Thanks Bob and Ricardo.  That was basically my thought as well.  I could not find any solid links to it either, but I knew one of you who has more medical knowledge than I would be able to check more thoroughly than can I.  That's why I call on the family.

Jerry

Celiac tests were inconclusive. They did find damage but it might have been from GERD. I am allergic to  gluten, corn, rice, carrots, fish, shrimp, crab, tylenol, bactrim DS, nickel, etc. I have seen connections between HA's and Gluten Allergies and Celiac. I also know there is a menstrual/menopause link to Gluten allergies/Celiac. If I get glutened the hot flashes are insane. So far my research has not found causal relationships between Celiac and CH or Gluten Allergies and CH.

I actually have confirmed Celiac Disease (confirmed 14 years ago with a biopsy of the small intestine). I am not a doctor or any type of scientist, but I don't believe there is any connection between me having Celiac or having CH. The only thing I do agree with is the belief is the likelihood of one autoimmune disorder leading to additional ones. That being said, CH is not classified as an autoimmune disorder, so that idea is tossed out. I have had 3 concussions, all of which were within a 2 year period, and the Ch started shortly thereafter, so that may be a potential cause. Additionally, my CH is getting progressivel worse. The other thing to consider is the actual diagnosis of CH. Similar to other diseases, there are a host of causes (meaning, you can get lung cancer from more than just smoking cigarettes). So, saying you get CH from only 1 cause may be shortsighted. But that's just my opinion. The best thing to do is for all of us to pull together and figure out how best to fight the beast and beat it into submission.  >:(

I do not think there is a connection from what limited basis I have to say such a thing. I know someone with Celiac and lots of people allergic to gluten and know a bit about it from those folks, some who are pretty versed in it.

None of them have CH. It a weird twist of fate, thanks to FB, it turns out I personally have know a half dozen people with CH (and not known it), and none of them have any digestive trouble.

Of course with CH who the eff knows? So much contradictory data (some folks is a cold trigger, some folks hot, etc.)

I agree with you. Probably more coincidence and our ability to realize that we have this stuff, and the knowledge that is being shared through social networking. I found out about having celiac after a long slog of doctors, and found out about having CH by accident, after many neuros. I've known dozens of other celiacs, and before all of you, have known only one other confirmed CH'er, though someone else I know is on the road to 'confirmation'!