5 ms·

I had a 3-year span where I could not eat gluten, and for 1 year of that I could not eat corn. My level of sensitivity was such that I could not eat gluten-fre

by miek 9y ago

I had a 3-year span where I could not eat gluten, and for 1 year of that I could not eat corn. My level of sensitivity was such that I could not eat gluten-free meals at any restaurant due to cross contamination nor drink instant coffee because the conveyors are sprayed with a corn-based anti-clumping solution. I saw 3 different digestive specialists (I believe all gastrointestinologists, it's been a few years). Their approaches did nothing. Then I searched for digestive disease research centers, went to one, and was "cured" after two visits. The doctor said that my situation is becoming more prevalant, and that the issue is typically one or more of the following: A hostile bacteria in the digestive tract, overgrowth of one or more bacteria in the digestive tract, or a parasite. A round of the following two drugs fixed me within a few days: Alinia and Neomycin. I was drinking beer and eating noodles again without any problems. Now I have to take an antibiotic that targets the digestive tract every 1 - 1.5 years as symptoms return. This indicates that my problem is bacterial rather than parasitic, although the exact cause of my problem hasn't been identified. An interesting side note: I traveled to Japan while affected by gluten (but before corn became problematic), and I ate in restaurants the whole trip with only one problem. I am certain that I was consuming small amounts of gluten with each meal. I learned that Japan and other countries have rejected US wheat shipments over certian GMOs, but I couldn't reliably explain why I was largely unaffected in Japan.

sasas 9y ago
This is incredible. Could you explain what your symptoms were? Thanks for sharing your story.
- miek 9y ago
  Of course. Symptoms: gas, bloating, diarrhea, constipation, mental slowness/fuzziness (I was always saying "sorry, I'm really out of it today"). Symptoms could last anywhere from 12-48 hours, and usually the onset of the symptoms was around 4-8 hours.
  - sasas 9y ago
    Did they do an actual test/sample before prescribing th medication or just take a guess? Congratulations on escaping all those terrible symptoms!
    - miek 9y ago
      Thank you! They guessed; they have seen this many times. They did other tests as well, and all came back negative. It was an "off-label" usage of the prescriptions, meaning that it is an unapproved treatment, so insurance didn't cover it. On that note, anyone purchasing medication should probably check sites like GoodRX.com before doing so, because it saved me a lot on those meds. Also, good pharmacists know several "discount codes" that they can type in at the register similar to those provided by GoodRx.. I don't know the proper terminology for this, but once you give them a code from GoodRX, you can say "do you know of any other good codes to try?" That worked for me.
weddpros 9y ago
miek, I'd really appreciate if you could contact me with more precise information (analysis you did, etc...). I've been struggling with gluten sensitivity for 1.5yrs (been through the gastroenterologist circuit already, with 0 results) so your comment blew my mind. Thank you! My email: chris [à] chris-hartwig.com
- sasas 9y ago
  Hi, I had “gluten sensitivity” for maybe the last decade. Brain fog, fatigue etc. removing gluten helped but did not fix. Then I tried the ketogenic diet and all my problems went. Infact I feel better then I have ever in my life when in a state of ketosis. Not sure of the reason - It could be I’m cutting out a certain foods.. or it’s the anti inflammatory effects of ketone bodies? Still searching for answers on why. But for now it feels like I’ve been given a second chance at life. I’d be happy to provide more details to you if your interested in trialing this path.
  - scarygliders 9y ago
    Not sure why you're being downvoted. If there's one thing I've learned, when researching how diet can affect myself, it's that different humans react to different food types and intake, in different ways. If a ketogenic diet works for you, the same diet may not work for others. Similarly, other types of diet may not work for you. It's for that reason I decided to vote you up again - there is no reason to downvote what you posted. One particularly enlightening book which changed my outlook on diet, raised an eyebrow, and just clicked with me, was "Eat Fat and Grow Slim", written in 1958 by Richard Mackarness, M.B.,B.S.
    - sasas 9y ago
      1958.. The more you dig into th history of nutrition the more you realise there was two parallel tracts. The one that won public opinion (low fat/high carb) has pretty much contributed to an epidemic. Recommend the book “the big fat surprise” by Nina Teicholz on the topic.
  - weddpros 9y ago
m_fayer 9y ago
Out of curiosity, which research center did you end up going to?
- miek 9y ago
  H.H. Chao Comprehensive Digestive Disease Center
shalmanese 9y ago
There's no commercially available GMO wheat. Maybe Japan is rejecting them based on some conventional breeding factor/pesticide use but it's not because of GMOs.
- miek 9y ago
  It's not commercially available in the sense that you can't buy it because it's not approved, but it exists and contaminates existing crops regardless, and it will continue to do so. --2013-- https://www.smithsonianmag.com/smart-news/where-will-japan-get-wheat-now-that-its-rejecting-americas-gmo-tainted-crops-87246219/ https://www.smithsonianmag.com/smart-news/where-will-japan-g... --2016-- http://www.reuters.com/article/us-usa-wheat-gmo-japan/japan-says-resuming-u-s-white-wheat-purchase-idUSKCN11759P http://www.reuters.com/article/us-usa-wheat-gmo-japan/japan-...
uoaei 9y ago
Just curious--do you still have your appendix? I read recently that it keeps a store of the microbiome and replenishes stores as needed.[1] Perhaps the nasty bacteria are hiding in there? [1] http://dujs.dartmouth.edu/2008/04/a-bacterial-safe-house-a-new-role-for-the-appendix/ http://dujs.dartmouth.edu/2008/04/a-bacterial-safe-house-a-n...
- miek 9y ago
  That is fascinating! Thank you for the information. It's certainly possible that bad bacteria are hiding in there.
nezzle 9y ago
Where did you go by any chance?
- miek 9y ago
  H.H. Chao Comprehensive Digestive Disease Center

by miek 9y ago

sasas 9y ago

This is incredible. Could you explain what your symptoms were? Thanks for sharing your story.

miek 9y ago
Of course. Symptoms: gas, bloating, diarrhea, constipation, mental slowness/fuzziness (I was always saying "sorry, I'm really out of it today"). Symptoms could last anywhere from 12-48 hours, and usually the onset of the symptoms was around 4-8 hours.
- sasas 9y ago
  Did they do an actual test/sample before prescribing th medication or just take a guess? Congratulations on escaping all those terrible symptoms!
  - miek 9y ago
    Thank you! They guessed; they have seen this many times. They did other tests as well, and all came back negative. It was an "off-label" usage of the prescriptions, meaning that it is an unapproved treatment, so insurance didn't cover it. On that note, anyone purchasing medication should probably check sites like GoodRX.com before doing so, because it saved me a lot on those meds. Also, good pharmacists know several "discount codes" that they can type in at the register similar to those provided by GoodRx.. I don't know the proper terminology for this, but once you give them a code from GoodRX, you can say "do you know of any other good codes to try?" That worked for me.

weddpros 9y ago

miek, I'd really appreciate if you could contact me with more precise information (analysis you did, etc...). I've been struggling with gluten sensitivity for 1.5yrs (been through the gastroenterologist circuit already, with 0 results) so your comment blew my mind. Thank you! My email: chris [à] chris-hartwig.com

sasas 9y ago
Hi, I had “gluten sensitivity” for maybe the last decade. Brain fog, fatigue etc. removing gluten helped but did not fix. Then I tried the ketogenic diet and all my problems went. Infact I feel better then I have ever in my life when in a state of ketosis. Not sure of the reason - It could be I’m cutting out a certain foods.. or it’s the anti inflammatory effects of ketone bodies? Still searching for answers on why. But for now it feels like I’ve been given a second chance at life. I’d be happy to provide more details to you if your interested in trialing this path.
- scarygliders 9y ago
  Not sure why you're being downvoted. If there's one thing I've learned, when researching how diet can affect myself, it's that different humans react to different food types and intake, in different ways. If a ketogenic diet works for you, the same diet may not work for others. Similarly, other types of diet may not work for you. It's for that reason I decided to vote you up again - there is no reason to downvote what you posted. One particularly enlightening book which changed my outlook on diet, raised an eyebrow, and just clicked with me, was "Eat Fat and Grow Slim", written in 1958 by Richard Mackarness, M.B.,B.S.
  - sasas 9y ago
    1958.. The more you dig into th history of nutrition the more you realise there was two parallel tracts. The one that won public opinion (low fat/high carb) has pretty much contributed to an epidemic. Recommend the book “the big fat surprise” by Nina Teicholz on the topic.
- weddpros 9y ago

m_fayer 9y ago

Out of curiosity, which research center did you end up going to?

miek 9y ago
H.H. Chao Comprehensive Digestive Disease Center

shalmanese 9y ago

There's no commercially available GMO wheat. Maybe Japan is rejecting them based on some conventional breeding factor/pesticide use but it's not because of GMOs.

miek 9y ago
It's not commercially available in the sense that you can't buy it because it's not approved, but it exists and contaminates existing crops regardless, and it will continue to do so. --2013-- https://www.smithsonianmag.com/smart-news/where-will-japan-get-wheat-now-that-its-rejecting-americas-gmo-tainted-crops-87246219/ https://www.smithsonianmag.com/smart-news/where-will-japan-g... --2016-- http://www.reuters.com/article/us-usa-wheat-gmo-japan/japan-says-resuming-u-s-white-wheat-purchase-idUSKCN11759P http://www.reuters.com/article/us-usa-wheat-gmo-japan/japan-...

uoaei 9y ago

Just curious--do you still have your appendix? I read recently that it keeps a store of the microbiome and replenishes stores as needed.[1] Perhaps the nasty bacteria are hiding in there? [1] http://dujs.dartmouth.edu/2008/04/a-bacterial-safe-house-a-new-role-for-the-appendix/ http://dujs.dartmouth.edu/2008/04/a-bacterial-safe-house-a-n...

miek 9y ago
That is fascinating! Thank you for the information. It's certainly possible that bad bacteria are hiding in there.

nezzle 9y ago

Where did you go by any chance?

miek 9y ago
H.H. Chao Comprehensive Digestive Disease Center