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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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    • knitty kitty
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    • trents
      Welcome to the celiac.com community, @McKinleyWY! There currently is no testing for celiac disease that does not require you to have been consuming generous amounts of gluten (at least 10g daily, about the amount in 4-6 slices of wheat bread) for at least two weeks and, to be certain of accurate testing, longer than that. This applies to both phases of testing, the blood antibody tests and the endoscopy with biopsy.  There is the option of genetic testing to see if you have one or both of the two genes known to provide the potential to develop celiac disease. It is not really a diagnostic measure, however, as 30-40% of the general population has one or both of these genes whereas only about 1% of the general population actually develops celiac disease. But genetic testing is valuable as a rule out measure. If you don't have either of the genes, it is highly unlikely that you can have celiac disease. Having said all that, even if you don't have celiac disease you can have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms as celiac disease but does not involve and autoimmune reaction that damages the lining of the small bowel as does celiac disease. Both conditions call for the complete elimination of gluten from the diet. I hope this brings some clarity to your questions.
    • McKinleyWY
      Hello all, I was diagnosed at the age of 2 as being allergic to yeast.  All my life I have avoided bread and most products containing enriched flour as they  contain yeast (when making the man made vitamins to add back in to the flour).  Within the last year or so, we discovered that even whole wheat products bother me but strangely enough I can eat gluten free bread with yeast and have no reactions.  Obviously, we have come to believe the issue is gluten not yeast.  Times continues to reinforce this as we are transitioning to a gluten free home and family.  I become quite ill when I consume even the smallest amount of gluten. How will my not having consumed breads/yeast/gluten for the better part of decades impact a biopsy or blood work?  I would love to know if it is a gluten intolerance or a genetic issue for family members but unsure of the results given my history of limited gluten intake.   I appreciate the input from those who have gone before me in experience and knowledge. Thank you all!
    • trents
      I know what you mean. When I get glutened I have severe gut cramps and throw up for 2-3 hr. and then have diarrhea for another several hours. Avoid eating out if at all possible. It is the number one source of gluten contamination for us celiacs. When you are forced to eat out at a new restaurant that you are not sure is safe, try to order things that you can be sure will not get cross contaminated like a boiled egg, baked potatos, steamed vegies, fresh fruit. Yes, I know that doesn't sound as appetizing as pizza or a burger and fries but your health is at stake. I also realize that as a 14 year old you don't have a lot of control over where you eat out because you are tagging along with others or adults are paying for it. Do you have support from your parents concerning your need to eat gluten free? Do you believe they have a good understanding of the many places gluten can show up in the food supply?
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      Okay went online to check green mountain k cups .It was said that the regular coffees are fine but they couldn’t guarantee cross contamination.with the flavors. im trying to figure out since I eliminated the suyrup so far so good. I’m hoping. thanks it feels good to listen to other people there views.
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