Celiac Disease, Gluten and Severe Migraine Headaches

I have had migraine headaches for about 20 years. Basically, I have a migraine every day. I don't remember how long ago I had a good day... maybe about 5 years. I was positively diagnosed with Celiac about 3 years ago. When I was diagnosed, I was so thankful because I thought my migraines would get better as soon as I go gluten-free. I was wrong! My migraines have gotten worse (frequency and severity). I'm frustrated because there is no light at the end of the tunnel. I have gone through so many rounds of Topamax (high doses), botox, acupuncture, cranial sacral, etc. I'm allergic to aspirin and ibuprofen and almost anything that is anti-inflammatory. Years ago I tried cutting caffeine, chocolate, wine, MSG and any other trigger I ran across. I have seen 5 neurologists and no solutions. I stick to Amerge for the most part. Sometimes, I can go several hours without a headache but never a full 24 hours. Waking up is the worse part of my day.

As far as the Celiac D, I have recently been told that I have healed my intestines. I'm very careful to not digest anything that is not certified GF. I don't pass out from abdominal pain anymore, so I'm proud that I'm strict about my gluten avoidance. But, I was desperately hoping my migraines would get better.

Is anyone having a similar problem?

So many doctors tell me they don't know what to do for me. I don't go to the hospital anymore because they do NOTHING!!! My daughter has called the ambulance to take me to the ER and the last time they rolled me through the ER on a stretcher and out to the waiting room. Put me in a wheel chair and walked away... without saying anything to me. Just left me there. I had no phone, purse, nothing with me. Thank goodness my daughter is old enough to drive to the ER and drove me home after we sat in an empty waiting room for well over an hour.

I want to try the Lidocaine treatment using the SphenoCath. I feel like this is my last hope. Has anyone tried this?

Any suggestions would be helpful. I just joined this site, so I'm a newbie. I don't know if this topic has been discussed or not.

Hi, I've also tried the preventatives and none worked. The food triggers you've mentioned didn't do much for me either.

Two things help my migraines - Imitrex/Sumatriptan, which I take daily, and not eating artificial food coloring, or taking any medications that have it. Anything on the label with a number such as "red #40". When I stopped eating food colorings, the pain of my migraines decreased by about 75% as well as relief from other symptoms such as nausea, indigestion, irritability, hot flashes, etc. Natural food colors such as beta carotene are fine - only the ones with numbers cause my symptoms. My migraines are now manageable with my medication.

I'm sure you will hear a variety of advice from the other members of this forum.

Welcome to the forum. We all certainly relate. On your question regarding the SpenoCath, see related thread by MigrainigMoma. It didn't go well unfortunately.

I've had good luck with natural supplements and hormones. And with the Cefaly.

DH is a celiac, so we're living a low/no gluten life (I will buy gluteny frozen meals for me to eat at work). Going gf didn't stop dh's migraines, but getting glutened will trigger one, so stay vigilant, just in case. In the meantime gf is helping him with energy and temperament, another way I knew he's been glutened is that he gets extremely irritatable.

I've gotten combo trigger injections of lidocaine and a steroid for neck muscles that are in a constant knot, but I've yet to try botox or spinal injections. The trigger objects help short term, but are not a permanent cure.

Just as a fyi, some of us have trouble reading large block of text, especially when battling a bad one, so if we've missed any questions, feel free to either ask again, or edit your post, and put manual enters(carriage return if you speak typewriter). I try to read everything, but I've caught myself skipping lines on a bad day.

I hate to welcome new members to the group, since it means you're fighting the migraine battle too, but welcome, we're glad you've found us, since you need us.

Hi Sara- I hear ya! I have had migraine everyday and they hardl ever go away. I was hoping a gluten-free diet would help the headaches but most say no as you have. I do have digestion and lots of stomach problems plus IBS. MBE eliminating gluten will help those problems but I hesitate to try because the diet is so strict & I can't read labels for I have only 1 seeing eye. I have had these daily headaches for 40 years now and they have gotten worse with age. My neurologist is sending me to a pain clinic so maybe I will be able to manage the pain better and be headache-free before I die. Imitrex is a hit/miss for me and I take Fiorocet daily which is not much help either, I suppose am getting rebound headaches as well but I need the medication in order to get thru life. If you want to email me use my Flo_02472@yahoo,com

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