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Confused And Upset

cbear6301

By cbear6301
in Coping with Celiac Disease

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cbear6301 Explorer
cbear6301
Posted

I am fairly new to this, but need help. I was told that gluten causes my severe migraines. Since going gluten-free 13 days ago my vertigo and migraines have ceased. This morning, I woke up with a migraine so I imagine I ate something with gluten. The problem is I can't find the culprit and don't know how far back to go. Is this what happens when you have been glutened? I had to take an imitrex it was so bad. The imitrex worked but I still have a residual headache. I have lost all my energy that I had and I am so tired.

I don't know how it happened. I have been so careful. My first thought was Saturday but it seems a long time ago. Saturday with so many appointments for the family, we ate out. I was extremely careful and thought it would be okay. Yesterday was easter, again really careful. My mom made some food though and she thinks this is all crazy,not really taking it seriously and I am wondering if when she prepared her food she missed something.

I don't know.. I am so upset. I haven't missed work in so long and today I had to.

Is this what its like? Will my migraines be just as bad, and will they last for long? Will it take time for my body to be off the gluten?

thank you.

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bigbird16 Apprentice
bigbird16
Posted

That is wonderful that you're migraines have been affected positively by going gluten-free!

Gluten is the major contributor to my migraines, as well. Since going gluten-free in November, I've cut the incidence by half. I was having migraine pain 20+ days per month. They're also becoming less severe; only thrice in the past four months have I prayed and begged for a handy guillotine. I've heard for some people they cease completely after going gluten-free. Most of the migraines I've had since November have been cross-contamination issues. When I've been glutened, I know within 20-30 minutes; my face on the migraine side goes numb, arm goes weak, and migraine signs begin.

It stinks when you're going just fine, and then you get nailed. But stick with it. Healing takes time. You'll have whoopsies; we all do. And you'll find out what works for you and what doesn't. This forum is a great place to learn and share. Folks here definitely understand.

It's possible that you got bit from something in your mom's cooking. It could be something else, too. Gluten-free living is a learning process for family, as well. Be consistent and be firm with your needs, but also be loving and helpful in the way you approach it.

This migraine will pass (though they seem neverending), and hopefully as you heal they will disappear entirely.

Take care!

cbear6301 Explorer
cbear6301
Posted
  • Author

After reading your post, I realize I thought since I haven' t had one in so long, that I was free. But I was having a migraine every day so that is an improvement. Thank you for bringing me back to reality. I do appreciate your feedback..I love having this board to come to.

thanks!

cbear6301 Explorer
cbear6301
Posted
  • Author

After reading your post, I realize I thought since I haven' t had one in so long, that I was free. But I was having a migraine every day so that is an improvement. Thank you for bringing me back to reality. I do appreciate your feedback..I love having this board to come to.

thanks!

Mrs. Smith Explorer
Mrs. Smith
Posted

I know how you feel. I think I was glutened by a tamale on sat. I am so sick today. I went home from work as well. I relate to the improvement. It is easy to get discouraged when you have a set back but like you in the 4mos Ive been gluten-free I feel alot better. Its a slow process, I am trying to be patient also and really nurture myself on the bad days. Hang in there I hear it takes 1year or longer sometimes to really heal the body from gluten.

mikehall117 Rookie
mikehall117
Posted

My migraines have been the main reason for me looking into my diet to find a cause. I also can get as many as 20 headaches per month and they would often be so bad I would miss work. I take a powerful prescription medication which can sometimes help alleviate the pain, but never the nausea, dizziness and visual problems.

I went gluten-free purely by accident when I did the Atkins diet a few years ago and my migraines disappeared. However they slowly came back after about 6 months when I introduced gluten back into my diet.

2 weeks ago I went totally gluten-free after learning that I was highly likely to have celiac disease and my migraines stopped again and I have been feeling like I have never felt before. However, just like you I have accidentally consumed Gluten so here I am with a migraine right now and feeling generally awful and achy. I sympathize with you completely. Unless you are a migraine sufferer you can't really understand how it feels to get one. I am learning about living a gluten-free lifestyle and have been referred to a specialist for more advice.

This board is fantastic and I love being able to come here for advice and share my ups and downs with others like me. :)

cbear6301 Explorer
cbear6301
Posted
  • Author

I am so sorry for those who have joined me today with migraines, what a terrible way to start the week. I have felt like a new person until today. I cannot believe it.. I have been so tired and in so much pain today, slept most of it away. It is frustrating to me not to be able to pinpoint what did it, I was keeping a food diary for the first week but felt so good I just got back to living life but without gluten. I am guessing I will need to journal so that I have a record...

anyway.. thank you to everyone.. this is a great board and I appreciate all the advice. To those with migraines, may you recover quickly..

christine

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Youdah Newbie
Youdah
Posted

I'm really new to this, too. I don't have migraines, but I sure can tell when I've been glutened, because all my fibromyalgia symptoms flare up, including the pain and horrible fatigue.

I'd guess that it's a little different for everyone...but I can feel a "gluten" in about 30 minutes to 2 hours, then sick all the next day...then the day after still feeling lousy, but improving as it gets out of my system. In other words: 1 gluten = 3 days of misery.

Even when being very careful, you'll still accidentally get some from time to time...a lot of additives and "hidden" glutens go into tons of foods. So eating out, or eating at someone else's house is a high risk thing.

Make a list of everything you ate, as much as you can remember. You can rule-out foods, and make a list of suspect foods, so you can avoid them in the future.

I've learned, so far, that the more something is processed, the more likely it is to contain gluten. In addition to telling others that you are gluten-free, tell them that you only eat "organic" foods, and this will help them avoid the hidden glutens for you. Some organic foods contain gluten, but less of them contain than the regular grocery store items, and organic foods are more likely to be labeled as containing gluten if they have any in it.

Good luck, and it's good to hear that you're doing better!

Takala Enthusiast
Takala
Posted

Holidays with cooking relatives are like walking through fields of land mines. :angry:

You learn to BYOF (bring your own food) pretty quick. Even if they mean well chances are they have no comprehension of cross contamination issues or how to decipher a label. If they don't take it seriously .....

cbear6301 Explorer
cbear6301
Posted
  • Author

you made me chuckle...you are so right. when i had my mom over and told her to only bring raw veggies, i thought it was safe.. but then she brought other food assuring me that she was careful...I trusted her but I think that was a bad idea..today the kids were with her and when they came home they told me she had no clue. She kept giving them cereal and saying it was 97% gluten free if they take out the wheat cluster..ugggg...all the lectures and books.. she just doesn't get it. I am almost certain it was her now...

I will just have to be really careful. I have no clue how I will handle this when we go over to her house.

samcarter Contributor
samcarter
Posted
you made me chuckle...you are so right. when i had my mom over and told her to only bring raw veggies, i thought it was safe.. but then she brought other food assuring me that she was careful...I trusted her but I think that was a bad idea..today the kids were with her and when they came home they told me she had no clue. She kept giving them cereal and saying it was 97% gluten free if they take out the wheat cluster..ugggg...all the lectures and books.. she just doesn't get it. I am almost certain it was her now...

I will just have to be really careful. I have no clue how I will handle this when we go over to her house.

Yeah, i have to argue with my mother in law all the time. For Easter we were bringing the ham--because i know she would not know what to look for in the glaze or seasonings for hidden gluten. She tried to talk me out of it. She thinks it's like her daughter's wheat allergy; I just need to avoid bread and pasta. :rolleyes:

Then she gets all fretful about me having bread. I don't like bread anymore. I don't bother baking gluten free bread, because it's expensive and i never was one for sandwiches. But every time we're planning to go visit, and we're planning lunch, which is usually sandwiches for everyone, she says, "And you're bringing your own bread, right?!" I just mumble something noncomittal and end up bringing my own corn chips or crackers. Drives her nuts. Because I'm not eating a sandwich like everyone else.

cbear6301 Explorer
cbear6301
Posted
  • Author

exactly. my mom is freaking out because she thinks that this is crazy, that i need bread to survive, that I am somehow making myself worse.. i don't understand how she doesn't see the change in me..

of course getting really sick is not helpiing. today I feel sick to my stomach and am slightly dizzy...how do i tell if its the flu or cc'd...

when will i have this down pat?? :huh:

bigbird16 Apprentice
bigbird16
Posted
Holidays with cooking relatives are like walking through fields of land mines. :angry:

Hah hah, that's what I was thinking when I was invited to dinner Saturday. I declined, saying it had been a bad health week (gluten-related migraine). Another friend said, "One thing you can count on at T's house is a healthy meal." I smiled at him and thought to myself, "Yes, please pass the live grenades." (T is over 75, a little forgetful, with a postage stamp sized kitchen and plenty of cc going on between dishes. Add in 14 non-careful guests. Stir well. Boom! Love all the friends, but not enough to get sick again.)

SalmonNationWoman Newbie
SalmonNationWoman
Posted

My family members are so in denial, yet they're the ones that had all the genetic, blood and biopsy testing! They all tested negative for Celiac but positive for Gluten Intolerance. All they heard was (-)Celiac and think they're off the hook! I heeded the warnings from their doctors after spending 6 months caring for my mother when she went septic twice in 2 months, had several biopsies that were pre-cancerous/atypical granulomas and nearly died.

I'd been not-so-successfully coping with problems for decades so I went gluten-free 15 months ago and never looked back. Not a single family member that's tested positive (3 to date) are living gluten-free and wonder why they're sick. I've had several extended family members die from cancer and other diseases that strongly correlate to Celiac/Gluten Intolerance.

I know I'm still healing, made some mistakes and suffered through some CC issues. So goes the learning curve. I feel so much better I can't imagine why they won't at least try. They're so invested in whining about their illnesses that they won't take any action to get better. And they think I'm a hypochondriac :blink: ?????

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