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


Gfresh404

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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.


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    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
    • MogwaiStripe
      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
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