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Supermom

Migraines Too?

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I am being tested for celiac disease after a long and exhaustive search to rule out all the other causes for migraines and severe daily headaches. Does anyone else have either migraines or daily headaches along with the GI problems that celiac causes? I have a whole heaping lot of unrelated symptoms and as it turns out they all are celiac problems. I'm interested to find out if this is the cause of everything... I feel like there can't possibly be this many things wrong with me!

Thank you all,

Rachael

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You sound like me before I was gluten free. I still had the migraines and daily headaches after being gluten free for about 4 years, but everything else got better (except for the psoriasis and mild neuropathy in my right foot). I was able to get rid of my daily headaches last year by detoxing and this also helped the migraines to be less frequent. My neurologist was very happy that my detox program helped me because NONE of the meds she was giving me did a darn thing for the headaches, they just gave me a bunch more symptoms from the bad side effects! I didn't totally get rid of the side effects of the meds until I detoxed as well. I highly recommend detoxing once you are gluten free.


~West Coast-Central California~

Mariann, gluten intolerant and mother of 3 gluten intolerant children

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Hi Rachael,

My primary care doctor tested me for celiac because I had migraines that weren't really resolving well, no matter what I took/did and a long-standing B12 deficiency. I also have - like you - a whole bunch of seemingly unrelated symptoms, most of which now make sense in light of my celiac diagnosis.

For migraines, I was taking topamax (as a daily preventative) and frova (triptan) for breakthroughs, as well as eating very carefully and avoiding triggers extremely carefully. I have daily headaches whether or not I have a full-blown migraine. My pc md discovered that I'm not, because of the celiac, absorbing the topa properly and the drug was contributing to negative health complications from celiac. So, as I've been in the hospital she's been doing a controlled fast taper down to get me off. She also pulled my NSAID & my antihistimine. I've been gluten-free for about a month and I don't think it'll be fixed for a while.

And, yes, that's on top of the GI - in fact, I was often happy when I had really terrible D before I went gluten-free because it meant the end of a multi-day migraine. (I've had a lot of md's think I was a hypochondriac bec. of how many things I had wrong with me - some seemingly little - I went through and checked off most of the celiac symptoms).

Good luck-

grey

gf4life - would you mind explaining what you mean by detoxing? thanks!

I am being tested for celiac disease after a long and exhaustive search to rule out all the other causes for migraines and severe daily headaches. Does anyone else have either migraines or daily headaches along with the GI problems that celiac causes? I have a whole heaping lot of unrelated symptoms and as it turns out they all are celiac problems. I'm interested to find out if this is the cause of everything... I feel like there can't possibly be this many things wrong with me!

Thank you all,

Rachael

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I started getting headaches and migraines when I was 12. I am 60 now. I was diagnosed with celiac disease in Spring, 2002. I immediately went gluten-free. I seldom have headaches now and I definitely do not have migraines. From the time I was 12 until I went gluten-free, I never EVER went more than 2-3 days without a debilitating headache. I would vomit, have diahrea, light flashes, etc, etc.... and the pain was excruciating. I can even eat and drink those things that immediately triggered a migraine.... like chocolate, wine, cheese.... to name a few. I watch my diet very closely and I do not ever choose to eat gluten. I hope that IF you have a gluten problem, your migraines and headaches clear up by going gluten free. It sure beats the migraine and pain meds.... plus you can include great foods like chocolate that are notorious for triggering migraines. Though give yourself time to heal before you start adding foods that can trigger migraines to your diet!!!


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I had migraines for several years, almost to the point I was going to take shots for. I have found that with no symptoms at all for me prior to diagnosis of Celiac, or gall bladder disease, that my gall bladder was only functioning at like 12.8% out of 100%. Which is not good. WIth all the reading I did online, about gall bladder disease and Celiac, that migraines can be caused by your gall bladder not functioning properly. Mine has been removed well over a year now and I have not had a migraine since. I was getting them a few times a month since I was a teenager. Nice not to have that, but the gall bladder coming out restricts some foods I like to eat.


Lisa

Mom of four boys

Nana to three granddaughters

Diagnosed with Celiac January 2006 after positive biopsy and follow up with positive blood tests

Diagnosed Chronic Fatigue Syndrome March 2006 after ruling out so many other things

Vitamin B12 deficiency October 2006

Oldest son diagnosed Celiac June 2006 also diagnosed type one diabetic November 2002

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wow sparkles, that's great hope!

(it's been years since I've had chocolate ... I wonder if I could have caffeine too!) It's kind of exciting to have the idea of possible treats in the future.

Like many celiac things, how wonderful that it worked so well for you, and how horrible you had to wait so long.

lmvrbaby, how did you suspect your gall bladder? it's great that you got it figured out and it helped your migraines.

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Hi gf4life,

Thank you so much! What exactly is involved in detoxing? Is that a controlled environment where I can get off all the migraine meds I'm on? Like you, I have a whopping load of side effects that I'm just putting up with in the hopes that life is better headache-wise WITH the meds rather than without. (My hair even started falling out... I'm not happy!)

Rachael

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Dear Grey,

I know I have my hopes set on the celiac diagnosis, because I want to make sense of everything too. I'm tired of having all these seemingly unrelated symptoms!

I was on topamax first, but I really turned dumb while taking it, I was searching for words all the time, and couldn't really think straight. My son asked me "Where's daddy?" and I had to struggle to come up with the word "garage"! Yuck. I hope you're able to get off of it okay. Now I'm on Depakote and Inderal for prevenatives and Toradal and Migranal for abortive.

Like you, I also eat almost nothing. No chocolate, alcohol, MSG, nitrates, sulphates etc. I also have some bladder thing going on so I have to avoid citris foods.

Good luck to you! And good riddance to the terrible doctors!

Rachael

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Dear Sparkles,

I was young too when I began to get migraines and headaches, about 11 years old. I'm now 31. So 20 years I've been just putting up with the symptoms, and now that I've got kids, I realized that I'm missing out so much on their lives that I wanted to spring into action to improve the quality of my life! I've even gone to the diamond headache clinic, and they were helpful, but I feel like I'm only halfway there, and still getting daily headaches with the meds.

I'd love it if I could eat again, even if it's gluten free. I'm already on a reduced diet, so getting rid of gluten wouldn't be too much of a stretch, especially if I can get rid of the headaches.

Though give yourself time to heal before you start adding foods that can trigger migraines to your diet!!!

Yep, one thing at a time! Although it would be tempting to go eat all the chocolate and coffee I can!

Thank you so much, you've given me hope!

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Dear lmvrbaby,

I am always amazed how organs that aren't functioning in our bodies can cause migraines! I'm glad you're migraine free! I don't think I have gall bladder problems, but I know I have something wrong with my bladder. I have an ultrasound scheduled tomorrow, my doctor thinks I may also have intercystitial cystitis. Who knows WHAT is causing that!?

Thanks for your reply!

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Hi Rachael, I hear you! I've had migraines for 20 years. They pretty much stopped right away after going gluten free. I also had terrible canker sores in my mouth, those too have gone away. I still get a migraine every now and then, and I can always trace it to something I've eaten, because I'm also lactose/casein and soy intolerant. I would recommend getting tested for all the major food allergies/intolerances. Also, I always get a migraine the day before my period starts, and nothing changes that one.

And by the way, coffee doesn't give me a migraine at all, in fact it helps when I have one! :D

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Dear Sparkles,

I was young too when I began to get migraines and headaches, about 11 years old. I'm now 31. So 20 years I've been just putting up with the symptoms, and now that I've got kids, I realized that I'm missing out so much on their lives that I wanted to spring into action to improve the quality of my life! I've even gone to the diamond headache clinic, and they were helpful, but I feel like I'm only halfway there, and still getting daily headaches with the meds.

I'd love it if I could eat again, even if it's gluten free. I'm already on a reduced diet, so getting rid of gluten wouldn't be too much of a stretch, especially if I can get rid of the headaches.

Yep, one thing at a time! Although it would be tempting to go eat all the chocolate and coffee I can!

Thank you so much, you've given me hope!

Supermom,

I feel for you... it sounds as though you have been though the "med go round", on migraine meds..

You went to Diamond, are you in Chicago? I never went there, cause I haven't heard anything other than ok experiences from people.

You also mentioned that you had tried Topamax, how long did you try that for? Its nick named dopamax due to those symtoms, but they usally pass (1000 mg of vitamin c can help)

for folks taking drugs like these, this site is great if you haven't seen it. http://www.crazymeds.org/

There is no reason that you should be relegated to your bed, due to your headaches... there are enough treatments out there now, to find one that will work for you.

:D

Maren

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Migraines and bad headaches were plaguing me more and more in the run-up to me being diagnosed, and going gluten free made me pretty much headache free as well :D Hormones do however trigger migraines for me still, but it's great to have headaches so more infrequently. I hope you get the answers you're looking for Supermom.


Susie from Coventry, UK

IBS & GERD 2000

Screened for coeliac disease as sister has it - negative blood test

Nov 2005 positive blood tests

January 2006 dx by biopsy

gluten-free and dairy lite since then

I am also neutropenic, anaemic and have hypothyroidism

Feb 08: free protein S deficiency; candida overgrowth; adrenal exhaustion

'My grace is enough; it's all you need. My strength comes into its own in your weakness.' 2 Corinthians 12

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Guest The Weasel

I will reiterate that I also used to have frequent migraines to the point I would miss class, work, outings, etc. you name it I missed it. I had migraines to the point they even made me sick a few times. When I am gluten-free I don't get them as often, I think I've only ever had one while remaining gluten-free and I would attribute it to my period or stress or sinuses.

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I have/had migraines and regular headaches.

The migraines do not appear to be related to gluten at all, and a low dose (100mg) Topomax regime works well as a preventative for me.

The regular headaches are, apparently, related to my forward head posture. As I've mentioned before, I'm seeing a chiropractor about this and a couple other things, and I've seen 40% improvement in the angle of my head at the atlas plane, and 30% improvement of the forward posture/lack of curve (both were determined by x-ray), which has definitely reduced the number of traditional headaches I get significantly.


Tiffany aka "Have I Mentioned Chocolate Lately?"

Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy

G.F. - September 2003; C.F. - July 2004

Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me

Bellevue, WA

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