Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Confused And Upset

cbear6301

By cbear6301
in Coping with Celiac Disease

Recommended Posts

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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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: ?????

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Blood tests for thiamine are unreliable. The nutrients from your food get absorbed into the bloodstream and travel around the body. So, a steak dinner can falsely raise thiamine blood levels in the following days. Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte...
    2. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine?
    3. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine. Legumes (beans) do contain thiamine. Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and Cobalamine B12 are mostly found in meats. Meat, especially organ...
    4. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc. Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food....
    5. Scott Adams
      - Scott Adams replied to Russ H's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Anti-endomysial Antibody (EMA) Testing

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,870
    • Most Online (within 30 mins)
      7,748
    KABoston
    Newest Member
    KABoston
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
    • Scott Adams
      Anti-endomysial Antibody (EMA) Testing

      By Scott Adams · Posted

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.