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

Migranes After Starting Gluten-Free


singingfrizzle

Recommended Posts

singingfrizzle Newbie

My 17 year old daughter has had years of stomach problems. After many years of testing, scoping, lab work, etc. etc., someone suggested she TRY eating Gluten free & sugar free. She started off with sugar free & the nauseau left, but the pain was still there. Once she went gluten-free, the pain left as well. (She WAS tested for Celiac along the years, but it came back negative. But that was several years ago.) But NOW she has started having pretty severe migranes. (Which she never had before starting this.) Any suggestions or help?


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



Celiac.com Sponsor (A8-M):



starrytrekchic Apprentice

Migraines are one of the first signs I've been glutened. Is she getting them after she accidentally eats some gluten? Early in the diet, reactions can vary and even get worse (and the symptoms can change) so that may be what's happening.

eatmeat4good Enthusiast

Sensitivity to gluten can increase when you go gluten free. Therefore, if there is any cross contamination or trace gluten...she may have more extreme symptoms. And migraine headaches are very commonly associated with glutenings. It is possible her reactions will be more severe to itty bitty dust particles of gluten. We cannot tolerate even trace amounts as they cause the antibodies to react. The testing is not very reliable....her reactions are very reliable. Sorry she is feeling badly...look into all possible sources of contamination. Good luck.

WinterSong Community Regular

I never had migraines before in my life until I went gluten free. I experienced them after my second or third week as part of my withdrawal process. They went away for the most part shortly after that. Perhaps she's going through the same thing?

  • 3 weeks later...
schelbo Newbie

]

I just started a gluten-free diet on 8-18-11 (yesterday) and I have a severe headache today.

I don't know if it's a lack of sleep or withdrawals from gluten.

T.H. Community Regular

I got the headache issue as well. For me, it turned out to be undiagnosed food allergies - I don't get hives, I get things like headaches. Weird stuff, but can also happen to a number of celiacs.

I'd suggest keeping a food journal if you aren't already. Keep track of what's eaten, at what time, and when the symptoms are happening, and see if a connection pops up. For the foods, you want to record every ingredient, too, as the connection can sometimes be a very small ingredient among many, especially if it turns out to be gluten cc rather than an allergy or intolerance.

Jenniferxgfx Contributor

I went gluten-free 6 weeks ago and had TERRIBLE migraine type headaches. Still get them off and on but they were BAD right away thought. Gluten has an opiate-like effect, and the withdrawals are uncomfortable. It's temporary, though! I really felt great when the worst of it passed.


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



Celiac.com Sponsor (A8-M):



kimis Collaborator

about a month after going gluten free I had horrible HORRIBLE headaches and they lasted for a very long time. I was tested for everything but none of the Drs I saw could find a reason why. A few people suggested something called gluten withdrawal. Months later I was dx with hashimoto's (autoimmune hypothyroidism) and after finding the right treatment for that my headaches went away. I believe that the headaches were my body's reaction to stopping one autoimmune attack and jumping to another. There are many reasons your daughter could be having headaches after going gluten free. It could even have something to do with her menstrual cycle regulating now that her gut is healing.

schelbo Newbie

I got the headache issue as well. For me, it turned out to be undiagnosed food allergies - I don't get hives, I get things like headaches. Weird stuff, but can also happen to a number of celiacs.

I'd suggest keeping a food journal if you aren't already. Keep track of what's eaten, at what time, and when the symptoms are happening, and see if a connection pops up. For the foods, you want to record every ingredient, too, as the connection can sometimes be a very small ingredient among many, especially if it turns out to be gluten cc rather than an allergy or intolerance.

Thanks for the reply.

Gluten cc? New to this.

Roda Rising Star

Thanks for the reply.

Gluten cc? New to this.

Gluten CC just means gluten cross contamination. For example: you make a sandwich with regular bread, don't wash your hands after, talk on the phone/pick up tv remote etc., daughter comes along and uses said phone or tv remote, she does not wash her hands and then makes a gluten free sandwich and eats it. This is cross contamination. The gluten residue was on the phone and tranfered to her and onto her sandwich and then ate it getting in her stomach.

It is recommended not to share a toaster that had regular bread in it. You can always buy another cheeper one and keep it strictly for gluten free. Wooden cutting boards/wooden spoons need replaced. Strainers that were used for regular pasta should be replaced or purchase a new one just for gluten free pasta. Condiments, spices, sugar etc. that may have potential for wheat/gluten contamination ie using same measure spoon/cup in regular flour then using it for other things without washing or dipping into the peanut butter or what ever then spreading it on bread and putting the knife back into the jar, need replaced or buy her separate. It is recommended that any teflon or non stick pans that the coating is scratched be replaced. I chose to replace all my bakeware except my glass or pyrex.

I guess you need to decide if you are going to have a shared kitchen or a gluten free kitchen. When I was first diagnosed I did all of the above things and took my kitchen mostly gluten free. My husband and kids had a separate part of the counter that they could prepare there gluten food if need be. I eliminated any baking with regular flour and strictly went gluten free for that. If they wanted something with gluten or something I couldn't make, they could buy it at the bakery. I didn't want the flour dust particles in the air to breath or settling back down onto the counter. All our meals together were made gluten free with the exception of pasta. Any left over condiments I marked with an X and let everyone else finish them up and then bought more in squeeze bottles if possible and then we shared. We share cheese and lunchmeat. Hubby washes his hands then takes out what he needs/wants then puts it away and then makes his sandwich. He scoops out jelly/peanut butter with a spoon then spreads it on his bread. I dedicated the top shelf and one crisper drawer in the fridge for their gluten food only, the rest being gluten free. I'm glad I took these initial steps because last Nov. my youngest son was diagnosed with celiac also. It has helped him feel more comfortable and confident to help himself in the kitchen. I didn't want him stressing. I also went through the house and wiped down anything I thought might have gluten residue on it. Think of it as germs and your need to wipe them away. Hope this helps and I'm sure I've left something out, but others will chime in.

schelbo Newbie

Thanks so much for the info. CC totally makes scense now.

I am sort of a germophobe so this part shouldn't be too hard.

I think the next step for me is to hire a dietician in order to learn HOW to eat all over again.

I'm sure that's the hardest part.

Archived

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

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

    • Total Members
      133,353
    • Most Online (within 30 mins)
      7,748

    ace14219
    Newest Member
    ace14219
    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

    • SilkieFairy
      It could be a fructan intolerance? How do you do with dates?  https://www.dietvsdisease.org/sorry-your-gluten-sensitivity-is-actually-a-fructan-intolerance/
    • Lkg5
      Thank’s for addressing the issue of mushrooms.  I was under the impression that only wild mushrooms were gluten-free.  Have been avoiding cultivated mushrooms for years. Also, the issue of smoked food was informative.  In France last year, where there is hardly any prepared take-out food that is gluten-free, I tried smoked chicken.  Major mistake!
    • catnapt
      my IGG is 815 IGA 203  but tTG-Iga is   <0.4!!!!!!!!!!!!!   oh my god- 13 days of agony and the test is negative?  I don't even know what to do next. There zero doubt in my mind that I have an issue with wheat and probably more so with gluten as symptoms are dramatically worse the more gluten a product has   I am going to write up the history of my issues for the past few years and start a food/symptom diary to bring with me to the GI doctor in March.   I googled like crazy to try to find out what other things might cause these symptoms and the only thing that truly fits besides celiac is NCGS   but I guess there are some other things I maybe should be tested for ...? like SIBO?   I will continue to eliminate any foods that cause me distress (as I have been doing for the past couple of years) and try to keep a record. Can anyone recommend an app or some form or something that would simplify this? I have a very full and busy life and taking the time to write out each symptom name in full would be tedious and time consuming- some sort of page with columns to check off would be ideal. I am not at all tech savvy so that's not something I can make myself ... I'm hoping there's some thing out there that I can just download and print out   do I give up on testing for celiac with such a low number? I am 70 yrs old I have been almost completely off gluten for the most part for about 2 yrs. I had a meal of vital wheat gluten vegan roast,  rolls and stuffing made from home baked bread and an apple pie- and had the worst pain and gas and bloating and odd rumblings in my gut etc - almost went to the ER it was so bad. I was thinking, since I'm spilling a lot of calcium in my urine, that perhaps this was a kidney stone (never had one before but there's always that first time, right?)    Saw my endo on Jan 20th and after hearing the story about the symptoms from eating that holiday meal, she suggested doing a gluten challenge. She said 2 weeks was fine- she said stopping it in the middle if symptoms got bad was fine- In the meantime I'd read that 2 weeks was not enough- called and argued with the nurse about this, but ultimately decided to stop the gluten on the 13th day and get the test done because I was in too much pain and almost suicidal and knew I could not continue.   so.............. that's where I am now I have had no bread since Sunday. I did have some rolled oats today and had some gas and bloating afterwards I did have some wheat germ in a smoothie on Tuesday and had a stomach ache later that night.   but overall I feel so much better! all the joint pain is gone! the nausea is gone. The stomach pain and gas and bloating are going away. Still a bit gassy but no more of that horrible odor. wow, that would clear a room if I was out in public!  I see a GI nurse March 4th  I hope she'll be able to help sort this out! can you think of what my next steps might be?
    • par18
      Thanks for the reply. 
    • Scott Adams
      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
×
×
  • 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.