Headaches and crohns

[723crossroads]

Have been having flare ups a lot lately and I always get a bad headache with the stomach pain and ache. Anyone else experience this too? I am hydrated, so I know it's not that. But what else would cause this? It is an awful headache, not mild. When I was first diagnosed, I had had a headache almost everyday for a year, they even did a catscan. Then the stomach aches started and that lasted 6 months till I finally got a diagnosis through a colonoscopy.

 

[jessie45]

When I first started with all my symptoms I was getting awful almost daily headaches as well. After testing negative for celiac through blood and biopsy, I went gluten free anyway thinking I may be gluten intolerant but not celiac. I have barely had a headache since. It didn't solve my other issues, but the headaches went from 5-7 weekly, to about 10 in the last 9 months. I'm not sure if this would apply for you, but just wanted to throw it out there. [I am undiagnosed]

 

[723crossroads]

When I first started with all my symptoms I was getting awful almost daily headaches as well. After testing negative for celiac through blood and biopsy, I went gluten free anyway thinking I may be gluten intolerant but not celiac. I have barely had a headache since. It didn't solve my other issues, but the headaches went from 5-7 weekly, to about 10 in the last 9 months. I'm not sure if this would apply for you, but just wanted to throw it out there. [I am undiagnosed]

Thankyou for responding Jessie45. If my Dr. already tested me I should be ok right?

 

[jessie45]

You're welcome No I also tested negative on the blood test and the biopsy done by scope. You can be negative for celiac but still sensitive to gluten. A lot of people get fatigue, headaches, pain etc when eating gluten even when they are not positive for celiac disease. I don't know if you are one of those people but it is worth a try to eliminate gluten for a few weeks and see how you get along

 

[Cosmojo]

I went gluten free but now that I'm off Remicade gluten no longer affects me at all.

I do have chronic migraines though, which I see a neurologist for, they become more active as a flair is starting up. My neurologist wasn't surprised, between stress on your body, the meds we have to take, the vitamin deficiencies ect its hard to imagine not getting a headache.

 

[723crossroads]

Yes, I guess you are right on with that. I cannot take any biologics and other drugs seem to affect me in a really bad way. Entocort was one thing that helped and didn't make me sick. I hope my Gastro will give it a go again after I get the pillcam done. Thanks you guys for your responses!:hug:

 

[Jennifer]

While waiting in the doctor's office they have a TV where they show a program that talks about all sorts of different health issues (I forget the name of the program or the website but I'll try to find it). Anyway, last time I was watching it at the doctor's office it talked about gluten sensitivity and mentioned that its similar to being lactose intolerant. There are different levels to it where you might be able to tolerate some gluten but the more you have the more symptoms you'll have. Here's a link that talks about gluten sensitivity and how its different from Celiac disease: http://celiacdisease.about.com/od/glutenintolerance/a/Gluten-Sensitivity-Symptoms.htm

So it could be possible that reducing your gluten intake may help but I also wonder if maybe it could be related to a vitamin deficiency or even being low in something can bring on symptoms of a deficiency. Like B vitamins, vit D, folic acid etc. Have you had them tested recently?

 

[DustyKat]

Sarah's primary symptoms pre diagnosis were upper abdominal/stomach pain, headaches (migraine like) and probably 50% of the time associated vomiting. These symptoms were yet another red herring that kept her undiagnosed for so long as they put it down to Abdominal Migraine, when it actual fact it was a manifestation of her Crohn's.

Once she gained remission the headaches, stomach pain and vomiting resolved.

Perhaps it is down to flaring or as others have said coeliac or something along those lines. Either way I hope you soon have answers and lasting relief. Good luck!

Dusty. xxx

 

[rollinstone]

I get bad headaches all too often

 

[Chantelle]

I also get bad headaches! im trying to go gluten free as my mother and sister have a gluten intolernce but damn i love bread im on entocort atm but finding im getting hand tremors, nausea and riciculously hunger! i got back to the gi this week so hopefully he can help with these headaches ect.

 

[723crossroads]

Sarah's primary symptoms pre diagnosis were upper abdominal/stomach pain, headaches (migraine like) and probably 50% of the time associated vomiting. These symptoms were yet another red herring that kept her undiagnosed for so long as they put it down to Abdominal Migraine, when it actual fact it was a manifestation of her Crohn's.

Once she gained remission the headaches, stomach pain and vomiting resolved.

Perhaps it is down to flaring or as others have said coeliac or something along those lines. Either way I hope you soon have answers and lasting relief. Good luck!

Dusty. xxx

Thankyou Dusty! I did not know that!!

 

[723crossroads]

While waiting in the doctor's office they have a TV where they show a program that talks about all sorts of different health issues (I forget the name of the program or the website but I'll try to find it). Anyway, last time I was watching it at the doctor's office it talked about gluten sensitivity and mentioned that its similar to being lactose intolerant. There are different levels to it where you might be able to tolerate some gluten but the more you have the more symptoms you'll have. Here's a link that talks about gluten sensitivity and how its different from Celiac disease: http://celiacdisease.about.com/od/glutenintolerance/a/Gluten-Sensitivity-Symptoms.htm

So it could be possible that reducing your gluten intake may help but I also wonder if maybe it could be related to a vitamin deficiency or even being low in something can bring on symptoms of a deficiency. Like B vitamins, vit D, folic acid etc. Have you had them tested recently?

It has been awhile . I think four months. I am next going for a pillcam but not sure when. I was diagnosed in 2011 with Crohns through colonoscopy. Then last one a few months ago showed none there. But, I have symptoms for sure. I think it is moved upwards to small intestine now. Stomach aches a lot and headaches with them. The day it started, I had nothing with gluten at all.
Why would it not affect me all the time either? This disease is so frustrating.

 

[Astra]

Hiya 723crossroads
did you ever read our thread on Amitriptyline? I can honestly say I've never had a headache since. xxx

http://www.crohnsforum.com/showthread.php?t=47926&highlight=amitriptyline

 

[723crossroads]

Thankyou Astra, but unless this drug has no risk of cancer or kidney problems, I can't take it. Anyone know the side affects?

 

[Jennifer]

Here's the side effect list: http://www.mayoclinic.com/health/drug-information/DR602731/DSECTION=side-effects

 

[723crossroads]

Here's the side effect list: http://www.mayoclinic.com/health/drug-information/DR602731/DSECTION=side-effects

OMG~ More side affects than any drug I've ever seen!!!:eek2::eek2::eek2:
Thankyou though. I tried to find them before and this list is not what I got.

 

[Tired]

OMG~ More side affects than any drug I've ever seen!!!:eek2::eek2::eek2:
Thankyou though. I tried to find them before and this list is not what I got.

That's the list of possible side effects, besides at the dosage used for migraine, you won't have much side effects. And it is not known for causing cancer or kidney problems.

 

[PiratePantaloons]

Hi, don't know if ill be any help here. I'm new to this and undiagnosed... waiting for my first apt. with GI. I clicked on this link because I have been getting migraines as long as I've jad this tummy issue(13 years) I'm not on meds. I get them so bad now my firat symptom is nausea followed by a headache followed by blinding pain. Lights sounds all kill me and I have to be in a totally dark/quiet room. I know I can get migraine medicine, but I'm stubborn and hate going to dr.(probably why I've waiting so long to figure this out).

I know everyone's different, but after this many years this is what I've learned. 1.) If I feel one starting I take tylenol immediatly. 2.) Usually its because I am trying to be normal and keep up with everyone(slow down) 3.) If all else fails I pop a Vicodin ... I hate doing it but it works.

I have been curious if these 'headaches' are caused by a vitamin/mineral deficiency? I don't absorb anything/ strait through me Any thoughts on that?

 

[Jennifer]

PiratePantaloons if you've had blood work that shows your vitamin levels are low then your doctor should work with you on how to supplement them properly. For instance being low in B12 has a regular pill form, yet that doesn't work for everyone, so there's a kind that dissolves under your tongue or liquid form yet if these don't work then your doctor can prescribe B12 injections and do it once a month or every other month (you can't just have one injection and be fine, you have to continue to be monitored and continue injections based off of your blood work). After doing supplements in pill form after about a month you should retest through blood work and see if you need to increase the dose and rinse and repeat. You need to work with your doctor, either your GI or GP to make sure your vitamin levels go back into the normal range. Keep us posted on your progress.

 

[PsychoJane]

I always have numerous days of headache when my crohn is active. I spent the 2 years of want to be flare having the equivalent of about 2 weeks of headache a months... I don't know what in the inflammation processes exactly influence the headache susceptibility but I can at the least show some empathy to your condition. It gets quite tiring... I was always having the unfortunate answer of : all I can do for you right now is to sign you a time off work and school...

Regarding Jessie comment about gluten, I never made the link but my headache are far better since I've reduced my gluten intakes. I'm not celiac either.

 

[723crossroads]

I talked to my gastro nurse today and she said "Are you sure you're not having migrines??" Migraines for seven days straight sometimes? I am sick in the stomach right now again and getting a headache. So tired of it. The nurse is sending me the script for the pillcam. I am finally going to do it.

 

[Amy2]

So sorry you are having headaches. My son get migranes occasionally. I think he's had about 4 since being diagnosed in March. For him, they are intense, but don't last more than a couple of hours if he can lay down in a dark room and be quiet.