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. - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      12

      My only proof

    2. - NanceK replied to Jmartes71's topic in Related Issues & Disorders
      12

      My only proof

    3. - knitty kitty replied to Larzipan's topic in Related Issues & Disorders
      39

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

    4. - trents replied to Larzipan's topic in Related Issues & Disorders
      39

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

    5. - Scott Adams replied to Larzipan's topic in Related Issues & Disorders
      39

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,368
    • Most Online (within 30 mins)
      7,748

    GStrutton
    Newest Member
    GStrutton
    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

    • knitty kitty
      You're right, doctors usually only test Vitamin D and B12.  Both are really important, but they're not good indicators of deficiencies in the other B vitamins.  Our bodies are able to store Vitamin B12 and Vitamin D in the liver for up to a year or longer.  The other B vitamins can only be stored for much shorter periods of time.  Pyridoxine B 6 can be stored for several months, but the others only a month or two at the longest.  Thiamine stores can be depleted in as little as three days.  There's no correlation between B12 levels and the other B vitamins' levels.  Blood tests can't measure the amount of vitamins stored inside cells where they are used.  There's disagreement as to what optimal vitamin levels are.  The Recommended Daily Allowance is based on the minimum daily amount needed to prevent disease set back in the forties when people ate a totally different diet and gruesome experiments were done on people.  Folate  requirements had to be updated in the nineties after spina bifida increased and synthetic folic acid was mandated to be added to grain products.  Vitamin D requirements have been updated only in the past few years.   Doctors aren't required to take as many hours of nutritional education as in the past.  They're educated in learning institutions funded by pharmaceutical corporations.  Natural substances like vitamins can't be patented, so there's more money to be made prescribing pharmaceuticals than vitamins.   Also, look into the Autoimmune Protocol Diet, developed by Dr. Sarah Ballantyne, a Celiac herself.  Her book The Paleo Approach has been most helpful to me.  You're very welcome.  I'm glad I can help you around some stumbling blocks while on this journey.    Keep me posted on your progress!  Best wishes! P.S.  interesting reading: Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/
    • NanceK
      So interesting that you stated you had sub clinical vitamin deficiencies. When I was first diagnosed with celiac disease (silent), the vitamin levels my doctor did test for were mostly within normal range (lower end) with the exception of vitamin D. I believe he tested D, B12, magnesium, and iron.  I wondered how it was possible that I had celiac disease without being deficient in everything!  I’m wondering now if I have subclinical vitamin deficiencies as well, because even though I remain gluten free, I struggle with insomnia, low energy, body aches, etc.  It’s truly frustrating when you stay true to the gluten-free diet, yet feel fatigued most days. I’ll definitely try the B-complex, and the Benfotiamine again, and will keep you posted. Thanks once again!
    • knitty kitty
      Segments of the protein Casein are the same as segments of the protein strands of gluten, the 33-mer segment.   The cow's body builds that Casein protein.  It doesn't come from wheat.   Casein can trigger the same reaction as being exposed to gluten in some people.   This is not a dairy allergy (IGE mediated response).  It is not lactose intolerance.  
    • trents
      Wheatwacked, what exactly did you intend when you stated that wheat is incorporated into the milk of cows fed wheat? Obviously, the gluten would be broken down by digestion and is too large a molecule anyway to cross the intestinal membrane and get into the bloodstream of the cow. What is it from the wheat that you are saying becomes incorporated into the milk protein?
    • Scott Adams
      Wheat in cow feed would not equal gluten in the milk, @Wheatwacked, please back up extraordinary claims like this with some scientific backing, as I've never heard that cow's milk could contain gluten due to what the cow eats.
×
×
  • 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.