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

Migraines And Going Gluten Free


helennaomi

Recommended Posts

helennaomi Newbie

Hello everyone, I really need your help. I have been getting debilitating migraines for years. The left side of my face will go numb, I can't speak without slurring, and sometimes my face sags, and my left arm and hand go numb. I have been going to a neurologist who sent me to a sleep specialist. They said I had narcolepsy, based on no symptoms other than my brainwaves while sleeping. The neurologist suggested that I go gluten free and see what happens. I have been gluten free 6 weeks ago. 1 week in, I stopped having migraines and then went 23 days without one. That is unheard of in my world. Then about 30 days in I tried gluten again and got the worst migraine ever. The neurologist said I was allergic to gluten and not to eat it anymore. I have had a migraine every day since and I don't know how to make it stop. I haven't been eating gluten, but I am not sure about cross-contamination. I am not doing anything I didn't do the first 30 days. One of the weeks I have had a migraine I was on my period, but it has come and gone and still my migraine is here. I am so miserable. I was wondering if I should go get all new stuff for my kitchen. Or if I am doing something else with shampoo or makeup. I am just at a loss and I am hoping someone else has had the same issue. The first 30 days were a life changers and now I am not sure what happened. Thank you in advance.

 


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



Celiac.com Sponsor (A8-M):



moosemalibu Collaborator

I don't know if this happens to everyone - but it happened to me. I went gluten-free for about a month just like you did. Then I did a gluten challenge for diagnostic purposes for 3 weeks. Now I am one week out and I am getting headaches pretty much every day since I stopped eating gluten this time around. I think it's normal withdrawal from gluten. Perhaps it is more difficult the second time around than the first... I hope you feel better soon!

cyclinglady Grand Master

https://www.celiac.com/forums/topic/91878-newbie-info-101/

 

I hope you feel better soon!  Check out the above link that will take you to a thread within this forum.  It contains tips about going gluten free and covers cross contamination.  

 

I never got migraines, but I know that each time I've been accidentally glutened -- my symptoms return stronger and last longer!  For some it can take three weeks to recover from a glutening!  

mamaw Community Regular

Hello everyone, I really need your help. I have been getting debilitating migraines for years. The left side of my face will go numb, I can't speak without slurring, and sometimes my face sags, and my left arm and hand go numb. I have been going to a neurologist who sent me to a sleep specialist. They said I had narcolepsy, based on no symptoms other than my brainwaves while sleeping. The neurologist suggested that I go gluten free and see what happens. I have been gluten free 6 weeks ago. 1 week in, I stopped having migraines and then went 23 days without one. That is unheard of in my world. Then about 30 days in I tried gluten again and got the worst migraine ever. The neurologist said I was allergic to gluten and not to eat it anymore. I have had a migraine every day since and I don't know how to make it stop. I haven't been eating gluten, but I am not sure about cross-contamination. I am not doing anything I didn't do the first 30 days. One of the weeks I have had a migraine I was on my period, but it has come and gone and still my migraine is here. I am so miserable. I was wondering if I should go get all new stuff for my kitchen. Or if I am doing something else with shampoo or makeup. I am just at a loss and I am hoping someone else has had the same issue. The first 30 days were a life changers and now I am not sure what happened. Thank you in advance.

Hello

I  have  been a  migraine  sufferer most  of  my life... Ten  years ago  when I went  gluten-free  the  migraines  lessened  , now  I get  them  when the  weather  changes...always  bad, no lights, noise, lots  of pressure  (head exploding), shakiness, vomiting...they  can  last  for  an  hour  or  for  several days...I tried  the  migraine  meds  but  didn't  help  & I felt  like a  space  cadet...for  years  Excedrin was  my  help but  docs  yelled about  me  taking  it  too much  &  too often but  when  you have a migraine  you have  a migraine! So  a  doc  suggested  I  drink coffee when I  feel one  coming  on  or  just  drink coffee each  day. It took me  a  good  while to learn to drink  coffee .And  I will say no other caffeine would  help ie: coke, pepsi...a person told  me  warm coke  fixed  them  so I tried  warmed  coke , YUCK , vomiting  for  an  hour  after...After  I  went  through menopause  the  migraines  have gotten better  except  for the  darn  weather  changes....Now  I  try to  eat  protein, very hot  then very cold  on my  neck & head for 10-15 minutes  each, banana popsicles  until  my  throat  feels  frozen  & I'm  shivering cold....rest peace  & quiet...

 

now  to being  safe  & gluten-free.....

there is  a newbie  post on here to help...Any pot,pans, utensils, cutting  board, toaster, plastic  items  , Teflon that  are  scratched needs to be  replaced. If  you have  stainless  then they are okay unless  they  were  gorged  to  make  deep scratches...

if  you have  others  who  are not gluten-free in your  house  get  your  own jars  of  peanut butter, jelly, mustard  &  things  that others  will be dipping into  . Or  else  train them  to  use  a spoon  to  dip into the  jar  & never  put  the spoon near  wheat bread ...

You  can only  sick ill from  gluten  if   its  gets  to  your intestinal  tract so  per say shampoo  wouldn't  make  you sick unless  you  ate  some. lipstick is  one  I  would  watch tho  as  we  do  lick our  lips  & ingest  lipstick...

Some  super  sensitive  people do  react  to  things with gluten  on their  skin  but  it is  not  intestinal  woes  but maybe  hives, itchy  skin, rashes & such  ....

As a  founder  of  a support group I  suggest  to  start out  with  things that  are  naturally gluten-free  ie: plain meats, fish, veggies, fruits.  season your  own  .. Use  nothing  that  is  marinated, seasoned,  breaded, rubs, or  dusted unless  it  stated  gluten-free  on the  label..

Its  also good  to  stay  away  from process gluten-free  foods to give  yourself a  chance  to heal & feel better. Think  clean  eating, more healthier  anyway...

 

hth

blessings

 

mamaw

helennaomi Newbie

Thank you sooooooo much everyone.

NoGlutenCooties Contributor

Just wanted to mention that I've only had a few migraines in my life and used to get them once in awhile when I was highschool.  Then a few weeks after going gluten-free I started to get headaches in the morning that felt as if they wanted to turn into migraines, although they didn't.  I finally figured out that I was having a reaction to my multi-vitamin - I think maybe because it has iron it in.  I had been taking it with breakfast, which for me is a glass of whey protein.  While I was eating gluten, it never bothered me.  Now that I'm gluten-free I have to wait until lunch to take my multi-vitamin so that I'm taking it with a substantial amount of solid food.  I think I'm actually absorbing more of the multi-vitamin now, especially the iron, and I'm actually absorbing enough of it now that I have to take it with food.

Archived

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

  • 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. - Wheatwacked replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      Supplements for those Diagnosed with Celiac Disease

    2. - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      results from 13 day gluten challenge - does this mean I can't have celiac?

    3. - knitty kitty replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      Supplements for those Diagnosed with Celiac Disease

    4. - Florence Lillian replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      11

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    5. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      results from 13 day gluten challenge - does this mean I can't have celiac?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,356
    • Most Online (within 30 mins)
      7,748

    JAGAPG
    Newest Member
    JAGAPG
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Wheatwacked
      Raising you vitamin D will increase absorption of calcium automatically without supplementation of calcium.  A high PTH can be caused by low D causing poor calcium absorption; not insuffient calcium intake.  With low D your body is not absorbing calcium from your food so it steals it from your bones.  Heart has priority over bone. I've been taking 10,000 IU D3 a day since 2015.  My doctor says to continue. To fix my lactose intolerance, lots of lactobacillus from yogurts, and brine fermented pickles and saurkraut and olives.  We lose much of our ability to make lactase endogenosly with maturity but a healthy colony of lactobacillus in our gut excretes lactase in exchange for room and board. The milk protein in grass fed milk does not bother me. It tastes like the milk I grew up on.  If I drink commercial milk I get heartburn at night. Some experts estimate that 90% of us do not eat Adequite Intake of choline.  Beef and eggs are the principle source. Iodine deficiency is a growing concern.  I take 600 mcg a day of Liquid Iodine.  It and NAC have accelerated my healing all over.  Virtually blind in my right eye after starting antihypertensive medication and vision is slowly coming back.  I had to cut out starches because they drove my glucose up into the 200+ range.  I replaced them with Red Bull for the glucose intake with the vitamins, minerals and Taurine needed to process through the mitochodria Krebs Cycle to create ATP.  Went from A1c 13 down to 7.9.  Work in progress. Also take B1,B2,B3,B5,B6. Liquid Iodine, Phosphatidyl Choline, Q10, Selenium, D and DHEA.     Choline supplemented as phosphatidylcholine decreases fasting and postmethionine-loading plasma homocysteine concentrations in healthy men +    
    • knitty kitty
      @catnapt, Wheat germ has very little gluten in it.  Gluten is  the carbohydrate storage protein, what the flour is made from, the fluffy part.  Just like with beans, there's the baby plant that will germinate  ("germ"-inate) if sprouted, and the bean part is the carbohydrate storage protein.   Wheat germ is the baby plant inside a kernel of wheat, and bran is the protective covering of the kernel.   Little to no gluten there.   Large amounts of lectins are in wheat germ and can cause digestive upsets, but not enough Gluten to provoke antibody production in the small intestines. Luckily you still have time to do a proper gluten challenge (10 grams of gluten per day for a minimum of two weeks) before your next appointment when you can be retested.    
    • knitty kitty
      Hello, @asaT, I'm curious to know whether you are taking other B vitamins like Thiamine B1 and Niacin B3.  Malabsorption in Celiac disease affects all the water soluble B vitamins and Vitamin C.  Thiamine and Niacin are required to produce energy for all the homocysteine lowering reactions provided by Folate, Cobalamine and Pyridoxine.   Weight gain with a voracious appetite is something I experienced while malnourished.  It's symptomatic of Thiamine B1 deficiency.   Conversely, some people with thiamine deficiency lose their appetite altogether, and suffer from anorexia.  At different periods on my lifelong journey, I suffered this, too.   When the body doesn't have sufficient thiamine to turn food, especially carbohydrates, into energy (for growth and repair), the body rations what little thiamine it has available, and turns the carbs into fat, and stores it mostly in the abdomen.  Consuming a high carbohydrate diet requires additional thiamine to process the carbs into energy.  Simple carbohydrates (sugar, white rice, etc.) don't contain thiamine, so the body easily depletes its stores of Thiamine processing the carbs into fat.  The digestive system communicates with the brain to keep eating in order to consume more thiamine and other nutrients it's not absorbing.   One can have a subclinical thiamine insufficiency for years.  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so the symptoms can wax and wane mysteriously.  Symptoms of Thiamine insufficiency include stunted growth, chronic fatigue, and Gastrointestinal Beriberi (diarrhea, abdominal pain), heart attack, Alzheimer's, stroke, and cancer.   Thiamine improves bone turnover.  Thiamine insufficiency can also affect the thyroid.  The thyroid is important in bone metabolism.  The thyroid also influences hormones, like estrogen and progesterone, and menopause.  Vitamin D, at optimal levels, can act as a hormone and can influence the thyroid, as well as being important to bone health, and regulating the immune system.  Vitamin A is important to bone health, too, and is necessary for intestinal health, as well.   I don't do dairy because I react to Casein, the protein in dairy that resembles gluten and causes a reaction the same as if I'd been exposed to gluten, including high tTg IgA.  I found adding mineral water containing calcium and other minerals helpful in increasing my calcium intake.   Malabsorption of Celiac affects all the vitamins and minerals.  I do hope you'll talk to your doctor and dietician about supplementing all eight B vitamins and the four fat soluble vitamins because they all work together interconnectedly.  
    • Florence Lillian
      Hi Jane: You may want to try the D3 I now take. I have reactions to fillers and many additives. Sports Research, it is based in the USA and I have had no bad reactions with this brand. The D3 does have coconut oil but it is non GMO, it is Gluten free, Soy free, Soybean free and Safflower oil free.  I have a cupboard full of supplements that did not agree with me -  I just keep trying and have finally settled on Sports Research. I take NAKA Women's Multi full spectrum, and have not felt sick after taking 2 capsules per day -  it is a Canadian company. I buy both from Amazon. I wish you well in your searching, I know how discouraging it all is. Florence.  
    • catnapt
      highly unlikely  NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean ground turkey but not much) I was off dairy for years but recently had to add back plain yogurt to meet calcium needs that I am not allowed to get from supplements (I have not had any problem with the yogurt)   I eat almost no processed foods. I don't eat out. almost everything I eat, I cook myself I am going to keep a food diary but to be honest, I already know that it's wheat products and also barley that are the problem, which is why I gradually stopped eating and buying them. When I was eating them, like back in early 2024, when I was in the middle of moving and ate out (always had bread or toast or rolls or a sub or pizza) I felt terrible but at that time was so busy and exhausted that I never stopped to think it was the food. Once I was in my new place, I continued to have bread from time to time and had such horrible joint pain that I was preparing for 2 total knee replacements as well as one hip! The surgery could not go forward as I was (and still am) actively losing calcium from my bones. That problem has yet to be properly diagnosed and treated   anyway over time I realized that I felt better when I stopped eating bread. Back at least 3 yrs ago I noticed that regular pasta made me sick so I switched to brown rice pasta and even though it costs a lot more, I really like it.   so gradually I just stopped buying and eating foods with gluten. I stopped getting raisin bran when I was constipated because it made me bloated and it didn't help the constipation any more (used to be a sure bet that it would in the past)   I made cookies and brownies using beans and rolled oats and dates and tahini and I LOVE them and have zero issues eating those I eat 1 or more cans of beans per day easily can eat a pound of broccoli - no problem! Brussels sprouts the same thing.   so yeh it's bread and related foods that are clearly the problem  there is zero doubt in my mind    
×
×
  • 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.