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brianne

Migraines & Gluten Free

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Hello,

My name is Brianne. I am 28 and have been living with severe migraines since I was 13. I have tried many different therapies, medications, and procedures over the years for releif. So far none have been successful in curing my migraines or providing substantial releif. On several occasions medications have come close to providing that kind of releif, but it was as if it was a flook. Botox provided 6 months of no migraines the first time and never again did it work. Depekote provided 3 months of no migranes when I was a teenager, but one night I forgot to take it and I fell into a week long migraine and it never worked again. Last summer Topomax provided me with migraines that would come once a month instead of 9 times a month, but the insurance company decided generic was good enough and the migraines returned to 9-10 a month again. The insurance company will not allow me to have the brand name because they know what is best, not me or my doctor.

I have been tested for celiac and do not have the disease. However, I do get bouts of constipation and bloating, which could be from medications, as well as gastroesophageal reflux disease. When reading the symptoms of gluten allergies or celiac's disease, I sometimes wonder if I do not have an allergy or some kind of reaction to it. Sadly, I am a carb addict and my carbs include gluten. However, I am desperate for my migraines to get better. I am on disability from them and do not have much of a social life because of them. I have heard that some migraine patients have had releif from a gluten free diet.

I have finally decided to give this a good shot. I often look up foods through google and have come across this site many times. I decided I wanted to join your forums because you sound like a group of knowledgable people. I went 4 days gluten-free until I was at a party where the only gluten-free item was potato chips and soda. I caved and had a hoagie and a slice of cake. Yesterday was no good either. Neither is today. I am going to the store later to pick up more gluten-free food items.

I am hoping for two things. Is there anyone else with migraines using a gluten-free diet? And, what are some really good gluten-free staples to keep in my house? What does your typical grocery list look like?

Thanks so much!

Brianne

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Brianne,

Look over in the recipes section of this forum and you'll find all kinds of information. I am so sorry you're going through this, but remember you're just getting started. One thing that gives me headaces, other than gluten, is msg. Are you allergic to that? It is in so many things today. They are even putting it in roast beef now. I just found a brand at Kroger, Boar''s Head, that is gluten and msg free. What a relief.

My friend was so convinced if I took feverfew, my migraines would go away that he sent me the money for two bottles. I started taking them and as long as I took two per day, I did not get migraines. Went off them for about a week and started getting migraines again. I'm back on feverfew. Feeling fine. Don't know if it would work for you, but the one of the weeks I was getting them so badly, went to Whole Foods and they were out. Apparently others know about it too.

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Hi Brianne,

I am just like you with respect to migraines. I started getting them all the time starting at 13yo. And like you, I tried everything! Nothing worked. Others that took meds for their migraines that worked always recommended theirs to me, and none of them worked. I also tried feverfew with some success, but just as a precaution to you and Freeatlast, feverfew is a blood thinner and should only be taken for 6 mth at a time, then stopped for the same period of time before taking again. It was when nothing worked for me that I started looking at more natural and holistic methods. But it was a long time before I found out I was diagnosed Celiac. Going gluten free I found that not only was I feeling better, but NO MIGRAINES! :D It's been a long learning road to gluten-free, because of all the hidden gluten out there. But I found that whenever I got a migraine, I found the gluten culprit. I am taking Amitriptyline, but it's for peripheral neuropathy (a partner in crime with Celiac), but interestingly enough it's also used for migraine maintenance. It also does not cost an arm and a leg like other migraine meds. A 1 month supply is approx $15 (in Canada).

Good luck and best wishes to you. I think once you get the hand of going gluten free, you'll start feeling amazing, and not go back! I have no desire for anything gluten (just chocolate ;) ).

Amanda

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I havent had them as bad as you, but when we first went gluten free (see sig for dates) I got the worst aura of my life either from withdrawal or some kind of contamination. After that they went away. Since being on GAPS I have only had two auras. One was after i tried balsamic vinegar (sulfites?) and the other was super brief and mild. I got it while helping set up for a fun run which did include carrying a huge basket of bagels, for what it's worth.

The other night I was kept up by roudy neighbors. Lack of sleep has been a big trigger for me for migraines, herpes, and mania. Needless to say, I was worried. Amazingly, i was fine! I think the healing I'm doing with diet has played a big part in that!

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Owie! I'm so sorry for you and that awful pain! My migraine saver was topomax. . . but after being gluten free for 2 years, I'm going to start getting off of it! So, that was the short story, which told you almost nothing. Now for the long version. Hold on!

My migraines were triggered by stinky perfumes (and inscense), lack of sleep, and hormones. They would last about 7-10 days, and after about 3 days, I would just get nauseaus from the pain, and just about stop eating. Topomax reduced the severity, and duration. When I got my celiac diagnosis, everything started to get better. After about 4(?) months gluten free, I wanted to try and get off the topomax. At that time, it didn't work. But I havn't had an actual MIGRAINE in months! Compared to what I have lived through, feeling pain on one side of my brain is so seriously nothing to even worry about. Will that pain get worse when I wean off the topomax? I'll see. Maybe I do still have migraines. But nothing like the awfulness of before, when walking through the mall would trip one off, or riding next to a 'stinker' on the bus would set me off. Moral of the story? (Finally!) Being gluten free has helped my migraines, as a part of healing the celiac. By the way, negative tests for celiac are not conclusive--they could have been false negatives.

If you are interested in the topomax again, the generic by teva is gluten-free. Don't forget to check any other meds. I had a friend at work who is on botox, and he gets that redone every 6 months, that is all it lasts for.

-Daisy

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when my spouse went gluten free, I went along for support. I got the biggest surprise of my life - no more migraines, no more headaches! I am off of Topamax. I eat a Paleo style diet, see Mark's Daily Apple blog for info.

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I am hoping for two things. Is there anyone else with migraines using a gluten-free diet? And, what are some really good gluten-free staples to keep in my house? What does your typical grocery list look like?

First, really quick - if you're not keeping a food journal, I'd start one if you have the energy for it. Everything ingredient eat, at what time, and how you feel. For me, gluten was the source of most of my problems, but there's a couple allergies I had hidden in among everything else that caused headaches, and without my food journal, I don't know if I would have found them as quickly. Since you're changing the diet, this might be very helpful to do now, track how you feel, yeah? :-)

As for staples - it kind of depends on which route you take. Recreating a similar diet to what you have now, but with gluten-free replacements, or changing your diet to a more unprocessed foods approach with generic foods.

The first requires a lot more money, the second requires more time in terms of learning new recipes (possibly) and cooking.

Because of my sensitivity level and the fact that I'm allergic to some foods that are MORE prevalent in gluten-free processed foods, I had to go the latter route.

Staples for the less processed route:

whole grains - rice, whole grain sorghum, whole grain quinoa, teff, amaranth - whatever works for you. Quinoa cooks like rice and can be used in a similar way. sorghum can be popped like popcorn, in the microwave. Teff and amaranth are more porridge like. Teff goes better with peanutbutter or maple flavors, and amaranth is a little sweeter - but the porridge texture is kind of nasty, IMO. Some people also buy whole grain flours, especially corn masa to make corn tortillas, but these are more expensive, so we never did that. The quinoa we buy in bulk, on-line, and it's cheaper that way. You can just look it up and compare prices and shipping to your area. Ancient Harvest is one. Also, I think Costco is selling quinoa in bulk now, too, in some places. Maseca brand corn masa was gluten free, last I looked, but it's been over a year, so you might want to check that.

beans/nuts/dried fruit - check to make sure they aren't processed with wheat, because unfortunately, this is pretty common. Also, if you are in the states, 'also processed in a facility that processes wheat' is a voluntary label, not a mandatory one, so you might want to avoid these until you have had a chance to call up the company to double check. Some celiacs are fine with food in the same facility as wheat, some aren't, so it might be best to be cautious at first, you know? We make refried beans from pinto beans, and also make some homemade falafel and hummus from chickpeas. There are recipes for hummus that use only olive oil, no tahini, which is much cheaper and tastes quite nice.

whole meats (NOT luncheon meats, sausages, that sort of thing) - just be careful where you get it from. Gluten cc can happen with shares slicers, or with butchers counters that have floured meats next to your plain cuts.

lots of plain veggies - avocados, potatoes and sweet potatoes have been very good for a lot of the calories that I now don't get from all the carbs I used to eat. Onions and garlic are always good, and chiles, otherwise, whatever is in season.

lots of plain fruits - citrus especially is good over salads and in home made sauces. Frozen fruit can be great for making breakfast smooothies when you are still trying to figure this all out. Bananas, berries, citrus, whatever works.

salt - check to see what anti-caking agent it has. If you use sea salt, and drop the processed foods, make sure you are paying attention to your iodine levels, since the iodized salt is what helps with that for most of us.

coconut aminos or gluten-free San-J soy sauce - great for a quick stir-fry for veggies and a little garlic. Goes nicely over rice.

Plain spices - if you can have them, use these suckers like crazy. Although they do tend to have a lot of preservatives that I have heard DO cause headaches in some people, so if you want to avoid that as a potential issue while you are trying to get well, you might want to start a little herb garden or stick with fresh herbs for a while. :-D

olive oil - usually your best best to avoid gluten cc, as olive oil is popular enough to often have a facility devoted just to olive oil production.

Rice milk - you can buy, but making your own is SO easy, and cheap as heck. It just takes brown rice and water, although you can add a little oil and sweetener. There's lots of different recipes on the web, but basically, you boil on low a lot of water and a little rice (like 8 cups to 1 cup, approx.) for about 3 hours until it's sludge. Then fill a blender half with sludge and half with clean water and blend that puppy up. Poor it through cheesecloth, or strain twice through a wire mesh strainer, and there you go: rice milk. you can add the oil, salt, sweetener, cinnamon, whatever you want, at this point. It's about twice as thick as store bought rice milk, so some people dilute it before using. Can be used with porridge, smoothies, that sort of thing.

eggs, if you can have 'em

A gluten-free peanutbutter and gluten-free rice cakes might be good for an on-the-go snack

EnjoyLife chocolate chips are gluten free, tiny, and are good if you are trying for, say, a homemade trail mix. Some nuts, seeds, or dried fruit, plus the chocolate chips, would go well, yeah?

A lot of people get Chex cereal too, as it's tested to be gluten free. Might be good in a trail mix, too.

Oh, also, you might want to try organic foods instead of generic produce, for a while, if you aren't doing that. Quite a few of the pesticides in use today have migraines or headaches as a possible side effect from ingestion. One that's used on strawberries is particularly known for causing that.

And if you are still having dairy, might want to stop that for a bit. Most celiacs are somewhat lactose intolerant when they are healing - part of the damage affects the part of the body that makes lactase - but then can eat dairy again once they've healed. It makes it more difficult to heal, though, if you are lactose intolerant and still eating dairy.

Also, it's usually considered safer to stay away from oats, even gluten-free oats, for a year or so after going on the diet, because a small percentage of celiacs are also oat sensitive and react to all oats pretty much like they're wheat, rye, or barley. Once you're well, it's much easier to try out gluten-free oats and see if you do okay on them.

I know a lot of others have some good staples, these are just some from either my house, or a few from my brother or father's (all of us are gluten-free)

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