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

Headaches When First Going Gluten Free?

weekendwarrior

Recommended Posts

weekendwarrior Apprentice
weekendwarrior
Posted

Hi everyone!

I've been eating a fully gluten free diet for the past week - and yesterday (the 7 day mark), I ended up getting a headache from mid afternoon until evening.

I thought nothing of it until I got the exact same headache today. I read some sites that this could be a "wheat withdrawal?"

I was curious if anyone else dealt with this when starting out, or if this is (bad pun alert) all in my head?

Thanks guys!!

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

Celiac.com Sponsor (A8-M):


emma6 Enthusiast
emma6
Posted

yes i had a constant headache for the first two weeks along with dizzyness, fatigue, nausea it was really intense, i constantly felt like the room was spinnig even when i was lying down but it slowly got better :)

i went back to the doctor i was seeing because it was so bad she wouldn't believe me and said it was impossible to have withdrawls from gluten and i just wasn't eating enough. even though i was eating every hour and more than ever. it was definetely withdrawls i had the exact same reaction six months earlier when i had tried to go gluten free for a few days.

squirmingitch Veteran
squirmingitch
Posted

Yep, lots of us have gone through gluten withdrawal. Headaches are one symptom reported, also stark raving, 24/7 starvation like you could eat a mountain of food & do & 20 min. later you're starving again, irritability to downright meanness, aches & pains..... & many others so if you get off with just headaches then you're not doing so bad. Please understand, I am not making light of your headaches AT ALL and I really hope they don't last too long for you.

I can hear you asking how long? Everyone is an individual so we have differing symptoms & time frames for getting through it. Most people, I would say, get off at about 2 weeks although some take longer. I was about 2 months.

weekendwarrior Apprentice
weekendwarrior
Posted
  • Author

Well that explains a LOT!!

I've been hungry around the clock for the past few days! These headaches are the tension ones that run from the back of your neck, around the top of your head and into your eyes - it's not fun at all, but at least I know it's a temporary thing. 

I've increased my water and am trying to eat "filling" things (protein, etc) - I'm hoping things start to align and I feel back to normal.

 

 

squirmingitch Veteran
squirmingitch
Posted

It will/can help if you sort of turn your meals upside down. In this, I mean, eat for breakfast something like you would eat for dinner. In the morning, eat protein & fat & plenty of it. Have fatty steak for breakfast along with fruit & whatever else. For snacks during the day, things like apple slices or bananas with peanut butter. For now, don't worry about how much you eat. Your body is trying to heal & absorb nutrients so don't hold back. Don't worry about weight or anything. EAT, just EAT. I was so bad, I would finish breakfast & I swear, within 10 minutes I was starving again. I would literally vacuum with one hand while eating an apple slathered with peanut butter with the other hand.

Whenever you eat protein make sure to have some fat with it. It will help but you still will be hungry a LOT until it finally all levels off. Nuts are a great snack, having protein & fat all in one shot. 

  • 1 month later...
hewitt Rookie
hewitt
Posted

My daughter has been gluten free now for 18 months. She gets a migraine at least once a month. Her dr. gave her Imitrex however it doesnt seem to help her. Her headaches last for 4 to 5 days every time. When she visited her gastro specialist she mentioned her headaches and the specialist  said  headaches werent Celiac related. I find this hard to believe as everything Ive read says otherwise! 

kareng Grand Master
kareng
Posted
7 minutes ago, hewitt said:

My daughter has been gluten free now for 18 months. She gets a migraine at least once a month. Her dr. gave her Imitrex however it doesnt seem to help her. Her headaches last for 4 to 5 days every time. When she visited her gastro specialist she mentioned her headaches and the specialist  said  headaches werent Celiac related. I find this hard to believe as everything Ive read says otherwise! 

Some headaches are Celiac related.  But, if they are, they should go away on a gluten-free diet.  They might return if you eat gluten.

It is very possible to have migraines that have nothing to do with Celiac.  I don't know her age, but, for me, I got some that were  hormone related.  They can be related to certain foods.  You might want to read some reputable info about migraines (not people with names like "migraine Mommy" or people who call them selves doctors but are not MDs.)

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

Celiac.com Sponsor (A8-M):


cyclinglady Grand Master
cyclinglady
Posted
2 hours ago, hewitt said:

My daughter has been gluten free now for 18 months. She gets a migraine at least once a month. Her dr. gave her Imitrex however it doesnt seem to help her. Her headaches last for 4 to 5 days every time. When she visited her gastro specialist she mentioned her headaches and the specialist  said  headaches werent Celiac related. I find this hard to believe as everything Ive read says otherwise! 

I am assuming her GI orders follow-up celiac antibodies testing since her initial diagnosis?  

tessa25 Rising Star
tessa25
Posted
3 hours ago, hewitt said:

My daughter has been gluten free now for 18 months. She gets a migraine at least once a month. Her dr. gave her Imitrex however it doesnt seem to help her. Her headaches last for 4 to 5 days every time. When she visited her gastro specialist she mentioned her headaches and the specialist  said  headaches werent Celiac related. I find this hard to believe as everything Ive read says otherwise! 

Migraines can possibly be a sign of magnesium deficiency amongst other things. Once I started taking magnesium my migraines immediately stopped happening. I never got tested for it, just gave it a try. This was before celiac. Maybe her new diet has less magnesium or some other nutrient she needs.

 

  • 2 months later...
hewitt Rookie
hewitt
Posted

Thanks for the advice. Yes my daughter had a follow up appointment with her gastro specialist . She goes every 6 months at first and then once a year after that. She is currently taking a magnesium suppliment so hopefully that will help with her migraines. Its definately a learning experience and a long road!

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 Known1's topic in Introduce Yourself / Share Stuff
      14

      Diagnosed Marsh stage 3C in January 2026

      Being low in Thiamine B1 can cause fingers and toes to be cold all the time. Thiamine deficiency affects body temperature regulation and sleep/wake cycles. Thiamine deficiency-induced disruptions in the diurnal rhythm and regulation of body temperature in the rat https://pubmed.ncbi.nlm.nih.gov/9804367/
    2. knitty kitty
      - knitty kitty replied to Jmartes71's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Nateral remedies

      I found some information that may be helpful to you. https://www.nccih.nih.gov/health/echinacea#:~:text=However%2C some people have allergic,for short periods of time. And... Role of Echinacea in the management and prevention of acute respiratory tract infections in children: A systematic review of the evidence https://pubmed.ncbi.nlm...
    3. knitty kitty
      - knitty kitty replied to dsfraley's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      9 y/o Son Diagnosed with Celiac Disease; Persistent Symptoms: Does this Sound Familiar?

      Welcome to the forum, @dsfraley, I recognize those symptoms as being related to Thiamine B1 deficiency, Gastrointestinal Beriberi. I've had Gastrointestinal Beriberi and my doctors sent me to a psychiatrist. It's not in ones head. Thiamine deficiency covers all the symptoms you've mentioned. With such a high Marsh score, correction of nutritional...
    4. knitty kitty
      - knitty kitty replied to MoniqueCham's topic in Related Issues & Disorders
      4

      Celiac Disease, Lymphocytic colitis and Bowel rupture

      Welcome to the forum, @MoniqueCham, What a challenging journey you've had! Like you, I studied nutrition, but I earned a degree in Microbiology because I wanted to understand what essential vitamins and minerals were doing inside our bodies. I've come across some information that may be of interest to you. I'll post links below. On my journey...
    5. dsfraley
      - dsfraley posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      9 y/o Son Diagnosed with Celiac Disease; Persistent Symptoms: Does this Sound Familiar?

      Hello all, I am writing here in hopes of hearing from the community as to whether the issues my son is facing are relatively common for individuals suffering from Celiac Disease. He is 9 years old, has the HLA2 gene, tested high for the gliadin IgG antibody (not the primary one, but still on Celiac panel), and biopsy of the duodenum came back as Marsh...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,552
    • Most Online (within 30 mins)
      7,748
    dsfraley
    Newest Member
    dsfraley
    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

    • knitty kitty
      Diagnosed Marsh stage 3C in January 2026

      By knitty kitty · Posted

      Being low in Thiamine B1 can cause fingers and toes to be cold all the time.  Thiamine deficiency affects body temperature regulation and sleep/wake cycles.   Thiamine deficiency-induced disruptions in the diurnal rhythm and regulation of body temperature in the rat https://pubmed.ncbi.nlm.nih.gov/9804367/
    • knitty kitty
      Nateral remedies

      By knitty kitty · Posted

      I found some information that may be helpful to you. https://www.nccih.nih.gov/health/echinacea#:~:text=However%2C some people have allergic,for short periods of time. And... Role of Echinacea in the management and prevention of acute respiratory tract infections in children: A systematic review of the evidence https://pubmed.ncbi.nlm.nih.gov/41234257/   Have you been checked for nutritional deficiencies?  Vitamins are all natural.  They are found in food.  With Celiac disease, we may not absorb sufficient quantities needed.  We cannot make vitamins, so we need to get them from foods and supplements while we're healing.   Have you been checked for nutritional deficiencies?  Ask for a Erythrocyte Transketolace Activity Assay.   One of my favorite vitamins is Thiamine in the form Benfotiamine.  It has really improved my gastrointestinal health.  I took Benfotiamine to help get rid of my SIBO.  Thiamine (Benfotiamine) help keep the SIBO under control. Dietary Vitamin B1 Intake Influences Gut Microbial Community and the Consequent Production of Short-Chain Fatty Acids https://pmc.ncbi.nlm.nih.gov/articles/PMC9147846/ Thiamine and benfotiamine: Focus on their therapeutic potential https://pmc.ncbi.nlm.nih.gov/articles/PMC10682628/
    • knitty kitty
      9 y/o Son Diagnosed with Celiac Disease; Persistent Symptoms: Does this Sound Familiar?

      By knitty kitty · Posted

      Welcome to the forum, @dsfraley, I recognize those symptoms as being related to Thiamine B1 deficiency, Gastrointestinal Beriberi.  I've had Gastrointestinal Beriberi and my doctors sent me to a psychiatrist.  It's not in ones head.  Thiamine deficiency covers all the symptoms you've mentioned.  With such a high Marsh score, correction of nutritional deficiencies is extremely important.  Thiamine deficiency is the first to manifest because thiamine stores run out quicker than other vitamins.   Ask your doctor for an Erythrocyte Transketolace Activity Assay as soon as possible!  Gastrointestinal Beriberi is under recognized by doctors.   Thiamine can be administered by doctors by IV.  Thiamine is safe and nontoxic even in high doses needed to correct thiamine deficiency and gastrointestinal Beriberi.  Because thiamine is safe, there is no harm in trying Thiamine if only to rule Thiamine deficiency out.   Correction as soon as possible is important as symptoms can increase in severity and become life threatening.  
    • knitty kitty
      Celiac Disease, Lymphocytic colitis and Bowel rupture

      By knitty kitty · Posted

      Welcome to the forum, @MoniqueCham, What a challenging journey you've had!  Like you, I studied nutrition, but I earned a degree in Microbiology because I wanted to understand what essential vitamins and minerals were doing inside our bodies.   I've come across some information that may be of interest to you.  I'll post links below.  On my journey, I suffered from malnutrition due to the malabsorption of Celiac disease.  I regained my health by supplementing with essential vitamins, especially Thiamine B1.  Thiamine is needed by every cell, so a low level of thiamine can cause many problems over time.  I was put on some medications that aggravated my thiamine deficiency.  Many medications can cause interactions with vitamins resulting in deficiencies. Methotrexate causes folate deficiency, but can also cause thiamine deficiency because folate and thiamine share some of the same cellular transporters.   Notes on Folate Carriers, Anti-Folate Medications, and Thiamine Deficiency https://hormonesmatter.com/notes-on-folate-carriers-anti-folate-medications-and-thiamine-deficiency/ Thiamine deficiency can affect the health of the digestive tract.  Thiamine helps regulate the intestinal microbiome, and keeps SIBO in check.   Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Thiamine deficiency aggravates experimental colitis in mice by promoting glycolytic reprogramming in macrophages https://pubmed.ncbi.nlm.nih.gov/39890689/ Other organs can be affected by thiamine insufficiency.  The thyroid, gallbladder, liver and pancreas can be affected by low thiamine. High-dose vitamin B1 therapy prevents the development of experimental fatty liver driven by overnutrition https://pmc.ncbi.nlm.nih.gov/articles/PMC7988776/ Thankfully, I found that Thiamine in the form Benfotiamine can improve gastrointestinal dysfunction, as well improve liver function, and thyroid and pancreas health.   Benfotiamine can improve harm done by Methotrexate... Protective effect of benfotiamine on methotrexate induced gastric damage in rats https://pubmed.ncbi.nlm.nih.gov/33325753/ I was deficient in other vitamins.  I had skin issues that improved with niacin.  Perhaps niacin can help your skin problem if it comes back.   Response of generalized granuloma annulare to high-dose niacinamide https://pubmed.ncbi.nlm.nih.gov/6225398/ I'm very curious as to what you did to correct your nutritional deficiencies caused by refractory Celiac disease.   Refractory Celiac Disease: What the Gastroenterologist Should Know https://pmc.ncbi.nlm.nih.gov/articles/PMC11477276/ Tests for Serum Transglutaminase and Endomysial Antibodies Do Not Detect Most Patients With Celiac Disease and Persistent Villous Atrophy on Gluten-free Diets: a Meta-analysis https://pubmed.ncbi.nlm.nih.gov/28545781/ Hope this is helpful!
    • dsfraley
      9 y/o Son Diagnosed with Celiac Disease; Persistent Symptoms: Does this Sound Familiar?

      By dsfraley · Posted

      Hello all, I am writing here in hopes of hearing from the community as to whether the issues my son is facing are relatively common for individuals suffering from Celiac Disease. He is 9 years old, has the HLA2 gene, tested high for the gliadin IgG antibody (not the primary one, but still on Celiac panel), and biopsy of the duodenum came back as Marsh 3A classification. He has been dealing with severe nausea (no diarrhea/vomiting), muscle achiness, and flu-like malaise for over 2 months (and he has not been to school during this time -- he has been truly bed or couch-ridden, and to the extent that he can watch a show but does not want to read an easy book or play video games... which he loves). He had a very low-grade rolling fever of about 100.0 that the doctors wrote off because it was very low, occasional, and would only last a couple of hours at a time. Before the onset of this, he struggled with severe weekly migraines that sometimes led to vomiting, or at least not functioning until after sleeping it off (which we thought was associated with too much screen time in school). In any case, given those lab results above, he was diagnosed with Celiac Disease a few weeks back. He has been on a gluten free diet for 3 weeks now. When I say a gluten-free diet, I mean: we have sterilized the house as much as possible (e.g., throwing away everything from the kitchen and replacing unless it was stainless steel, and washing that thoroughly, eliminated all gluten-containing foods from the house except for a few pre-packaged snacks for our other child that she can eat outside of the house such as at school, etc.), we have only given him foods that are certified gluten free unless it was something like meat (not seasoned), have not given him oats (even gluten free marked ones) to be safe, we have purchased new products such as shampoo and toothpaste, etc. He does not have any food not prepared in our house. In other words, if there is cross-contamination, it must be at exceptionally low levels. Despite this, he: continues to have off and on bloating and nausea, continues to have flu-like malaise (though he hasn't had the occasional low-grade fevers for the last 2 weeks, struggles greatly to get to sleep and sometimes wakes up miserable in the middle of the night, cries frequently and constantly expresses how much he doesn't feel good, most often now describes a general feeling of "ickiness" that we cannot pinpoint. The gastro has nothing more to say other than stick with it; the pediatrician says we should try a rheumotologist (if we want) or a psychologist. The former seems unnecessary, and the latter suggests to me a complete lack of understanding of just how miserable he is (and I am highly disappointed by the suggestion and now frustrated with the pediatrician). And so I am looking for support/thoughts:  For those of you who have Celiac Disease, or know those affected by it, does this sound accurate? Is there hope? Or do you think we are on track of needing to get more opinions? Thank you.  
×
×
  • 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.