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

jeanbean

Recommended Posts

jeanbean Newbie
jeanbean
Posted

Hi there

I am 40 and was just diagnosed with Celiac about 4 weeks ago (positive blood test) and am awaiting my biopsy scheduled in May. I used to get severe migraines weekly for years and now that I'm adjusting to my new diet, I haven't had one single episode. I wonder if there is any connection?

Also, my doctor recommended I take Bentylol (prescription) in case I ingest gluten unknowingly. He says it would help with the abdominal pain - has anyone tried this medication?

Signed,

Cold in Toronto

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

I also haven't had a migraine since I went gluten free, 5 years now. I use good old pepto bismal for the stomach pain if I happen to get CC'd. It helps almost instantly and has no nasty side effects or adverse reactions other than making the stool dark for a day or two. I never even have to take a second dose. One word of caution, the script your doctor gave you needs to be confirmed as gluten free. Get the name and phone number of the maker from the fact sheet the pharmacist will give you and call the maker yourself, many pharmacists will assume something is safe and or be too busy to check.

Guest Jemenii36
Guest Jemenii36
Posted
Hi there

I am 40 and was just diagnosed with Celiac about 4 weeks ago (positive blood test) and am awaiting my biopsy scheduled in May. I used to get severe migraines weekly for years and now that I'm adjusting to my new diet, I haven't had one single episode. I wonder if there is any connection?

Also, my doctor recommended I take Bentylol (prescription) in case I ingest gluten unknowingly. He says it would help with the abdominal pain - has anyone tried this medication?

Signed,

Cold in Toronto

I, also, had migraines before going on the gluten free diet. I was on an anti-seizure medication to helpthe mirgraines subside. However,once i went gluten free they also went away immediately. This was one of thelargest changes i had. I have never taken nor heard of the medication but good look with it! Since you are glong gluten free i don't think you will need it tho :)

jeanbean Newbie
jeanbean
Posted
  • Author

Thanks for your replies. I guess it's just an added perk not to have headaches. And I'll try P.Bismol instead of some pricey medication I've never heard of.

I guess having Celiac physically affects people in different ways. Well I'm still in the learning stages and it's clear that we have to educate others - in my case, my husband thinks I'm going overboard with the utensils and asking him to clean up his crumbs on the counter (he does not have Celiac). I can't seem to persuade him that we have zero tolerance, not even a crumb. I told him he should feel my pain for one day. They just don't get it.

I'm so much happier now and easier to live with. Just feeling good after a meal makes me enjoy food again.

psawyer Proficient
psawyer
Posted

I had severe migraines for years. A couple of years after going gluten-free due to celiac disease, I read something about the connection and realized: Hey, I haven't had one since I went gluten-free. I have been off gluten for seven and a half years, and not one migraine in that time. Yay! :)

tarnalberry Community Regular
tarnalberry
Posted

I'm one of the few unlucky ones on the board who did *not* have his/her migraines go away when he/she went gluten-free, so it doesn't happen for *everyone*. :)

Annie/NM Apprentice
Annie/NM
Posted

Just a thought, if you are having a biopsy in May you should still technically be eating gluten. They want you on it for the biopsy as well. At least my doctor did. In terms of migranes, I had them pre diagnoses a lot more frequent. I still get them but that is usually a sign of getting glutened. Hope that helps.

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

Celiac.com Sponsor (A8-M):


Lisa16 Collaborator
Lisa16
Posted

My migraines are also a thing of the past-- I am sure you have some relief to look forward to on that front. Thank goodness!

I also took bentyl for the IBS-- over many years I had a standing RX for it because of the IBSD-- I feel it was completely worthless. It did not stop the D or the pain. Instead I take a papaya enzyme chewable tablet that you can get OTC-- I read a study that says this enzyme can zap small amounts of gluten that accidentally get in the system. But the best for me is a warm bath.

Good luck with the biopsy results. I was in your shoes about 8 years ago. The blood results were a high positive, but then they got a negative biopsy. Should this happen to you (and it well might, esecially since it sounds like you are gluten-free now,) I hope you do continue with the gluten-free lifestyle and do still consider yourself a celiac. Please do not believe them if they say a negative biopsy means you do not have the disease. Let the gluten-free diet be your guide. I made the mistake of believing them and my symptoms got exponentially worse until the DH appeared.

Lisa

dksart Apprentice
dksart
Posted

I used to have a serious migraine that lasted for almost three days once a month and then a few others whenever I was stressed or for no apparent reason. It started when I was 14 and lasted until I was 37.

I have been migraine free since going gluten-free.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,680
    • Most Online (within 30 mins)
      7,748
    ashley94261
    Newest Member
    ashley94261
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Rejoicephd
      Draft gluten-free ciders… can they be trusted ?

      By Rejoicephd · Posted

      That and my nutritionist also said that drinking cider is one of the worst drink choices for me, given that I have candida overgrowth.  She said the combination of the alcohol and sugar would be very likely to worsen my candida problem.  She suggested that if I drink, I go for clear vodka, either neat or with a splash of cranberry.   So in summary, I am giving ciders a rest.  Whether it's a gluten risk or sugars and yeast overgrowth, its just not worth it.
    • Inkie
      Tea Bags and Gluten

      By Inkie · Posted

      Thank you for the information ill will definitely bring it into practice .
    • Scott Adams
      Tea Bags and Gluten

      By Scott Adams · Posted

      While plain, pure tea leaves (black, green, or white) are naturally gluten-free, the issue often lies not with the tea itself but with other ingredients or processing. Many flavored teas use barley malt or other gluten-containing grains as a flavoring agent, which would be clearly listed on the ingredient label. Cross-contamination is another possibility, either in the facility where the tea is processed or, surprisingly, from the tea bag material itself—some tea bags are sealed with a wheat-based glue. Furthermore, it's important to consider that your reaction could be to other substances in tea, such as high levels of tannins, which can be hard on the stomach, or to natural histamines or other compounds that can cause a non-celiac immune response. The best way to investigate is to carefully read labels for hidden ingredients, try switching to a certified gluten-free tea brand that uses whole leaf or pyramid-style bags, and see if the reaction persists.
    • Scott Adams
      Inconclusive results

      By Scott Adams · Posted

      This is a challenging and confusing situation. The combination of a positive EMA—which is a highly specific marker rarely yielding false positives—alongside strongly elevated TTG on two separate occasions, years apart, is profoundly suggestive of celiac disease, even in the absence of biopsy damage. This pattern strongly aligns with what is known as "potential celiac disease," where the immune system is clearly activated, but intestinal damage has not yet become visible under the microscope. Your concern about the long-term risk of continued gluten consumption is valid, especially given your family's experience with the consequences of delayed diagnosis. Since your daughter is now at an age where her buy-in is essential for a gluten-free lifestyle, obtaining a definitive answer is crucial for her long-term adherence and health. Given that she is asymptomatic yet serologically positive, a third biopsy now, after a proper 12-week challenge, offers the best chance to capture any microscopic damage that may have developed, providing the concrete evidence needed to justify the dietary change. This isn't about wanting her to have celiac; it's about wanting to prevent the insidious damage that can occur while waiting for symptoms to appear, and ultimately giving her the unambiguous "why" she needs to accept and commit to the necessary treatment. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
    • Scott Adams
      Medication

      By Scott Adams · Posted

      Welcome to the community! Generally, for a gluten challenge before celiac disease blood tests, Tylenol (acetaminophen) is considered safe and should not interfere with your antibody results. The medications you typically need to avoid are those like ibuprofen (Advil, Motrin) or naproxen (Aleve) that can cause intestinal irritation, which could potentially complicate the interpretation of an endoscopy if you were to have one. However, it is absolutely crucial that you confirm this with either your gastroenterologist or your surgeon before your procedure. They know the specifics of your case and can give you the definitive green light, ensuring your surgery is comfortable and your celiac testing remains accurate. Best of luck with your surgery tomorrow
×
×
  • 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.