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 Midwesteaglesfan's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      Going for upper endoscopy today

    2. - Scott Adams replied to Butch68's topic in Gluten-Free Foods, Products, Shopping & Medications
      5

      Guinness, can you drink it?

    3. - maryannlove commented on Jefferson Adams's article in Gluten-Free Foods & Beverages
      12

      Top Brands of Gluten-Free Canned Chili

    4. - Aretaeus Cappadocia replied to Clear2me's topic in Gluten-Free Foods, Products, Shopping & Medications
      4

      Gluten free nuts

    5. - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      5

      Related issues


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,271
    • Most Online (within 30 mins)
      7,748

    NancyWM
    Newest Member
    NancyWM
    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
      Welcome to the club!😉 This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
    • Scott Adams
      I could not find the thread, but I recall at least one user who was drinking regular gluten beer daily but getting celiac blood tests done often (I think it was monthly) and doing a biopsy each year and all celiac disease tests were always negative. Everyone is different, but in general regular beer would be considered low gluten (not gluten-free!). I have no issues with Daura Damm, but those who are super sensitive might.
    • Aretaeus Cappadocia
      Azure Standard (https://www.azurestandard.com/) is one of my gluten-free vendors. I've purchased nuts, "grains", flours, and many other products there. If you are not familiar with Azure, you have to set up an account (no cost) and get your purchases either via shipping (expensive) or "drop" (free if you buy a reasonable minimum). Search their website for a drop location in your area. Each drop location has a local volunteer(?) coordinator who coordinates with the local customers. I go to a drop 4-5 miles from my home that delivers every 2 weeks. We seem to range from 8-18 customers at a given delivery. The downside of the drop is that you have to be there when they say. They give you a few days notice of the precise time, though, and they are punctual. Their pricing relative to other vendors for various products ranges from best price to overpriced, so you have to shop and compare. Quality is mostly good but once in a while you get a dud - however they've been very responsive to giving me a credit on the few occasions when I've complained. In my opinion, they are not as transparent about gluten as they could be. Some products are labeled "gluten free" and so far I trust that. Many products are labeled "Azure Market products are re-packaged by Azure for your convenience in a facility that meets Food Safety Modernization Act (FSMA) standards, including an approved allergen control program." I've corresponded with them over this and they all but say this means gluten free. I've come to trust this, with a little nervousness, but I wish they would be more explicit. They also sell a lot of gluten-containing products. Frankly, I think they are overlooking a business opportunity to become a trusted source for the gluten-free community by not being more clear about gluten. Among Azure products I've purchased are "Walnuts, Baker's Pieces, Raw", "Cashews, Raw, Large White Pieces, Organic" and "Missouri Northern Pecan Grower Pecans Fancy Native, Raw, Halves". The walnuts and cashews were very good and the pecans were fabulous. For almonds, I've been buying Blue Diamond unsalted when they go on sale (mostly from Safeway). The salted ones are probably fine too but the flavored ones I avoid now that I am gluten-free. I also buy products including nuts from CostCo (cashews, shelled pistachios). Their nuts usually contain a "made in a facility that processes wheat" statement, which is scary. I've contacted customer service about various Kirkland products and they will usually give you a response <<for a specific lot>> whether it really was made in a wheat facility (sometimes yes sometimes no). For the "Kirkland Signature Fancy Whole Cashews, Unsalted, 40 oz" and "Kirkland Signature Shelled Pistachios, Roasted & Salted, 1.5 lbs", I got a "safe" answer and I ate them. I got an "unsafe" answer once for "Kirkland Signature Fancy Whole Cashews with Sea Salt, 2.5 lbs" and "Kirkland Signature Dry Roasted Macadamia Nuts, Salted, 1.5 lbs" and I don't look at these anymore. Again, these answers were given for specific lots only. They will accept an unopened return for cash if you find out you don't want it. Costco also sells "Kirkland Signature Super Extra-Large Peanuts, 2.5 lbs" that are labeled gluten free. My celiac kid eats them all the time. I pretty much only eat food that I prepare myself from scratch. My celiac symptoms are not that overt, so I can't say for certain I could identify a glutening. However, my antibody levels dropped 25 fold (into normal range) since my dx earlier this year. Hope this helps.
    • Jmartes71
      Doterra literally has saved my life hands down.Nateral supplements that really are pure grade and does work organically with ones body. I had to stop all my nateral supplements to be a good puppet for medical so I can get the financial help that my body won't allow me to do more days than not these days, every day with menopause.....Not feeling well.Had to switch " medical team" because I was told I wasn't celiac though I am gluten-free since 1994! I am also positive HLA-DQ2. I think doctors down play it because on quest lab work it states " However 39% of the U.S  general population carry these HLA-DQ variants, as a consequence, the presence of HLA-DQ2 or  DQ8 or both variants is not perse diagnostic of celiac disease". Hintz the down playing of celiac disease......This needs to change because doctors seem to down playe it because when I showed the past 2nd and 3rd  doctors that I waisted my time on this year showed my that line and absolutely down played it.4th pcp this year.I live in Patterson California and would love for a few of us to go to mayors office and make this disease heard
    • Midwesteaglesfan
      Back home after the scope.  Dr said as soon as he got in there it was clear signs of celiacs.  Must be a decent amount of damage.  I don’t remember the post procedure conversation as the anesthesia was still wearing off but that’s what my wife says anyway.  Still the biopsy results to come back but pretty definitive and now I get to learn to live gluten free
×
×
  • 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.