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

After 3.5 Years - I'm Finally Starting To Feel Better (Long)


Gfresh404

Recommended Posts

Gfresh404 Enthusiast

I originally posted this thread about 8 months ago. Basically, after initially removing gluten (3.5 years ago) I felt great for about 2 - 3 months, then things slowly went bad again. I continued to get worse and worse despite having every test come back normal. I was tired all the time, never really felt like doing much. Basically I thought I had chronic fatigue syndrome. I was seeing a Naturopathic Doctor but we weren't making much progress in treating my supposed Candida Overgrowth and parasitic infections (diagnosed by stool sample) - I'm still 50/50 on whether Candida Overgrowth (in the GI tract) is a legitimate condition. Anyway, with not many other routes to go I decided to take this spring semester off to try and fix my supposed gut imbalance once and for all. We were making slow but somewhat steady progress.

 

Then in February I had vertigo that lasted for 3 months straight - most days I didn't get up other than to get food or to go to the bathroom - it was horrible. I was eating less and less since I felt nauseous almost all the time and was down to 135 lbs - which is a big deal for me since I'm 6' 2". We saw one ENT Doctor who diagnosed it as an inner ear infection known as Vestibular Neuritis (virtually the same thing as Labyrinthitis). Not happy with the prognosis (there wasn't anything he could) we decided to see a Neurotologist - I was somewhat more optimistic since this guy teaches at Harvard and would hopefully know his s$#&. And he did - he diagnosed it as Migraine Associated Vertigo (MAV).

 

Unfortunately Migraine goes way beyond being just a headache and can affect vision, hearing, the GI tract, etc. I've been following a pretty restrictive diet, even more so than before, no: caffeine, chocolate, nuts, dairy, anything aged, fermented, or cured. No MSG, onions, artificial sweeteners, citrus fruits, and other certain vegetables and other fruits. If you want a complete list look online - there are many different variations. Unfortunately everyone has different triggers so the only real way to know which ones are affecting you is to eat em and see what happens. 

 

So it seems that on top of being gluten sensitive I also suffer from Migraines - despite never really getting headaches before, strangely although apparently not that uncommon, I felt migraine mostly in my stomach. Anyway I've been making a lot of progress with the diet alone, just after 4 weeks. I've read and been told that full response to the diet can take 6 - 8 weeks. My triggers aside from the obvious popular ones seem to be corn, tomatoes, and garlic. I have read that only about half of migraneurs have food triggers, but research on this is inconsistent and frankly very tough to prove since everyone has different triggers, and they might not necessarily cause a headache every single time the food is ingested.

 

I just wanted to follow up with you guys and hopefully raise awareness for a condition that I personally was totally ignorant on. Here a few signs you might be unknowingly suffering from migraine (taken from Open Original Shared Link):

 

- Childhood car sickness and overall sever motion intolerance

- Irritable Bowel Syndrome, people with IBS are 60% more likely to get migraines

- a heart condition called PFO

- a condition called Raynaud's syndrome has been shown to connected with migraine

- Family history of headaches

- Headache after you eat certain foods

- Headache after sleeping too much or too little

- Diseases like depression, OCD, social anxiety phobia, and generalized anxiety (worrying without cause) have shown to be strongly associated with migraine

- Headache after a stressful event is over

 

And finally, I'll leave you with some stats about migraine:

 

- Migraine affects 12% of the US population - 6% men and 18% women.

- 15% of the world population suffers from migraine.

- Half of those people are undiagnosed and another quarter are misdiagnosed with a different illness. 

- Migraine is believed to be due to abnormal brain chemistry - you are born with it.

- There is no test for migraine.


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



Celiac.com Sponsor (A8-M):



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. - Scott Adams replied to Kirita's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Recovery from gluten challenge

    2. - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      1

      Brain fog

    3. - trents replied to Scatterbrain's topic in Sports and Fitness
      2

      Feel like I’m starting over

    4. - cristiana replied to Scatterbrain's topic in Sports and Fitness
      2

      Feel like I’m starting over

    5. - Scatterbrain posted a topic in Sports and Fitness
      2

      Feel like I’m starting over


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,280
    • Most Online (within 30 mins)
      7,748

    newlife213
    Newest Member
    newlife213
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      While the positive endoscopy confirms the diagnosis, it's important to be skeptical of the idea that your daughter will simply "bounce back" to a pre-challenge state. The gluten challenge was essentially a controlled, prolonged exposure that likely caused significant inflammation and damage to her system; it's not surprising that recovery is slow and that a subsequent exposure hit her so hard. The persistent fatigue is a major red flag that her body is still struggling, potentially indicating that the initial damage hasn't fully healed or that her system is now in a heightened state of reactivity. Rather than seeking anecdotal timelines from others, her experience underscores the critical need for close follow-up with her gastroenterologist to rule out other nutrient deficiencies commonly caused by celiac flare-ups, like iron or B12, and to consult with a dietitian to scrutinize her diet for any hidden sources of cross-contamination that could be perpetuating her symptoms. The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs.      
    • Scott Adams
      The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Brain fog, like other celiac disease symptoms, does improve after you to 100% gluten-free, and supplementation will also help.      
    • trents
      Were you doing any of the new home construction yourself? Drywall compounds and adhesives used in construction have been known to cause problems for some celiacs.
    • cristiana
      Hello @Scatterbrain and welcome to the forum I am sorry to hear you have had a return of your symptoms.  My first thoughts were that stress can cause IBS-like symptoms - a friend of mine has been suffering a huge amount of stress and when that happens she gets diarrhea.  But you say that you haven't got any bad abdominal issues, so perhaps you could share what other symptoms you are having? Cristiana  
    • Scatterbrain
      Hello, I was newly diagnosed in January of this year (2025).  Since then I have been strict about staying gluten free and only cooking at home.  I started feeling better in July while gradually resuming close to my normal routine of activities and athletics. September and October were extremely stressful due to a new home build being finished and moving.  My spouse and I take care of his mom who has advanced dementia and have been since 2021.  We did all the moving as well as get the other house on the market for the month of October.  Since earlier this month I feel like I did back in the early stages of my diagnosis.  Almost all of my symptoms have come back except for the bad abdominal issues.  I haven’t changed my diet or supplements since January and wonder if the stress has caused a set back? Any thoughts are helpful.  Thanks
×
×
  • 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.