My long Gluten story -just saying

[Laoshi]

hi All,

I had been getting so gradually sick that I don't know when it started, (but I am now assuming 1994).  In 2008, I succumbed to pressure from my insurance rep to get more insurance, and they would even come to my house to test my blood.  I was denied insurance and recommended to see my doctor, who told me I had the liver of a severe alcoholic.  I very rarely drink. I went for tests and the doctor was baffled.  He said I should lose weight.  He said it was likely fatty liver disease.

That was 2008.  For the next few years I got tests, tried to eat healthy, and every so often I would see if it was helping my liver numbers.

I got stomach aches when I ate toast or a sandwich, but didnt link it to the toast except later, in hindsight.  How could toast give me a stomach ache?  Anyway, on the advice of my doctor, I tried very hard to lose weight, so went lo-carb.  One day, I had had no breakfast and at church 'goodie-time' was unable to resist all the carbs.  Later that afternoon, I felt like someone had literally poisoned me.

This was now 2011.  I decided to not eat or drink anything but almonds and organic cold pressed  apple juice in a glass jar, and ate only those things for the next 3-4 days while I looked for symptoms on the Internet. I narrowed it down to celiac disease and went to the doctor.  I refused to eat gluten to get the test.  I decided not to eat gluten and I got better.

I then started a job in China.  I learned how to say things like "no soy sauce" since it's made from wheat.  I got so much better.  I knew what my reactions were to gluten, especially the one that happened first: I would get a shakiness inside, like my blood system was micro-vibrating.

i got the flu and was in bed for three days straight eating only mandarin oranges and water.  After a couple of days, I got that shakiness, suddenly, lying in bed.  I was astounded, cause I had only water and oranges.  Then I remembered that I had taken two Advil, in the gel cap form.  I looked on the Internet, and sure enough, the gel caps contained gluten.  Wow.  Even that small amount in two gel caps set it off.

I was very vigilant.  Then one day, back in Canada, I was making hot dogs for a four-year-old and I had fresh bakery buns.  I couldn't resist.  I guess I thought, well, it's been a couple of years gluten free, let's see what happens.  I ate one and a half huge bakery hot dog buns on impulse.  Big mistake. I got so, so sick.  I was sick for 6 weeks with various symptoms.  Spleen pain, liver pain, kidney pain, migraine headaches, stomach issues, constipation, dizziness, brain fog, irritability, etc.  This was 2013.

After one week of still being sick, I thought it's probably too late, but I should get that celiac test to see if there are detectable antibodies.  I went to the doctor, who didn't think it was necessary and insisted it was fatty liver disease and not celiac.  He humoured me and gave me the requisition anyway.  It wasn't too late!  One week later.

i was shocked to see that my antibody level was 99. ( If you have less than 20 you don't have Celiac. It is called tTg test).  If you have 100, they say you don't really need a biopsy and it's pretty much confirmed celiac.  The doctor was a little bit embarrassed and said, "looks like you've diagnosed yourself". So finally he shut up about fatty liver disease.  

I got so much better living in China.  I occasionally slipped. I  then went back to canada for a year.  I developed DH, as I got these lesions starting on my thumb and then on my fingers and palms.  Finally after 6 months I cut out dairy.  I had heard it was also somehow bad for Celiacs from the Internet but I really didn't want to cut out dairy as it was bad enough without gluten.  I finally did and the DH cleared up.  

Then back to China.  I would go back to Canada twice a year for the time off from spring and summer holidays.  It was really hard to be around western food temptations and I would get "glutened" even though I tried hard. I began to get a strange pain in my leg and the doctor in canada said it was likely arthritis in my hip.  i went for an xray but it didnt show anything.  it really killed me to get that pain in my leg and then in my hip.  i would cry out and have to sit down.  i started riding my bike to work in china cause it was painful to walk very far.  I had started to reintroduce dairy while in China and found that I could eat yogurt, which I love.

I had heard that people blamed their gluten reactions on Roundup, or glyphosate, because they could eat flour products in other countries but not North America.  One day about six months ago I made cookies for my students.  I wore gloves and was very careful.  Before this, I wouldn't even be in the same room with flour.  But nothing happened.  Then I tasted a cookie.  Nothing happened!!  The next day, I ate a whole cookie. Nothing happened!!  I began to think there was something to the theory of North America and roundup.  I still avoided flour in general cause I didn't want to push it, but I started eating soy sauce and relaxed a bit - started going to restaurants in china, etc. instead of micromanaging food in my kitchen, cause I was evidently not reacting to gluten in China.  I then realized that the only episodes of pain I had had were when I was in Canada the previous summer and spring.  Very strange. 

So.  I got back to Canada, last spring, had my usual gluten free meal on the airplane, and then visited my mother.  I ate only organic yogurt.  Nothing else, and a few hours later I was attacked by almost every gluten related pain I had ever had.  My hip was suddenly shooting pain and I cried out and limped to the couch.  My mother asked, what did you eat?  I said, nothing!  Only organic yogurt!  

Of course after any glutening, it takes weeks for these pains to subside, and I endured pain stabs in my spleen for a while.  Then back to China, where I was able to eat normally.  No pains, nothing.  I ate yogurt, made myself with uht milk imported from Germany or Australia, and I was fine.  

 

Until the day when I ate one of the chocolate bars I had brought from Canada as prizes for my students.  Instant reaction! Spleen pain!  I had heard that sugar cane was as bad as flour for being drenched in roundup.  Now I was convinced. It was definitely stuff from Canada that was the culprit.  Only farm products.  Yes, they say the yogurt is organic, but I'm sure they feed the milk cows hay that has been exposed to roundup.   Now I know exactly what I can eat and where.  I love the food here, and it's safe.  There are exceptions.  They use pesticides on fruit, cause I get a stomach ache when I eat certain fruits, but it's a different reaction that the gluten reaction,  I can eat flour products without a huge reaction, but I still have celiac, because I do get reactions even from Chinese flour, just not as bad as I did before.  A mild sick feeling, like something is off, kind of unbalanced, and of course the inevitable shakiness.  I react much worse to Canadian chocolate.  But there is a huge difference between food here and food there.  A very painful difference.  Hard to figure out, but I think I have.

so here's my theory,  roundup actually causes the celiac disease, or whatever disease you might happen to be genetically susceptible to. (My uncle has arthritis in his hip). If you keep ingesting it, you will get gradually sicker and sicker and get some kind of disease.  If you stop eating roundup completely, you will heal with a healthy diet.  If you already have a disease like celiac or DH you can manage it and stay healthy if you are totally roundup free.

My dad died of nonHodgkins lymphoma and he insisted it was the roundup the neighbor had been spraying on his farm, right next to my dads organic hobby farm.  Now I believe him. I wish I'd been able to piece this together a bit earlier.  Since 1994, many diseases have hugely increased.  That's when they started with the roundup and there is a one on one correspondence on the graphs with roundup use and  many diseases.

sorry for the novel but I just can't keep this all to myself,  I'm like the canary in the mine.  But roundup is everywhere so I don't know if you can really avoid it in North America, sadly. My advice is to move elsewhere and figure it out like I did.

i saw a youtube video by an MIT researcher that they are now figuring out that glyphosate actually takes up the place of the essential amino acid glycine in your body.  Because they are molecularly similar, glyphosate gets in there and stops glycine from being able to do it's job in your body.  So it causes all sorts of problems in a gradual way and eventually you will have trouble.

i hope this helps!  Stay away from farm products!  I hope it's not true what the conspiracy theorists say (that they are spraying chemicals, chemtrails etc.  I don't know if they are spraying roundup) but if it is, that's the end of the world as we know it.  I don't really want to go there,  I just know what I know and I'm sharing it.  

this is just the short version  but I've tried to include important info.  Anyone else have a similar story in any way?

[knitty kitty]

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4809873/

Here's an article about glyphosates that explains it well.  

 

[Tin Man]

I was diagnosed with Celiac Disease at age 64. I realize in retrospect that I had misdiagnosed DH my entire life, but it got much worse in later life, and I finally saw a dermatologist who recognized it. I went on a strict gluten-free diet, but the DH persisted for two years nonetheless. I stuck it out with rather ineffectual steroid creams , and refused to go on Dapsone. I realized this past week that the DH is gone. It took two YEARS without gluten for my immune system to quiet down. I'm writing this to give hope to you. DH is very hard to live with. Hang in there, it WILL get better with time.

[squirmingitch]

On 11/18/2019 at 9:30 PM, Tin Man said:

I was diagnosed with Celiac Disease at age 64. I realize in retrospect that I had misdiagnosed DH my entire life, but it got much worse in later life, and I finally saw a dermatologist who recognized it. I went on a strict gluten-free diet, but the DH persisted for two years nonetheless. I stuck it out with rather ineffectual steroid creams , and refused to go on Dapsone. I realized this past week that the DH is gone. It took two YEARS without gluten for my immune system to quiet down. I'm writing this to give hope to you. DH is very hard to live with. Hang in there, it WILL get better with time.

It's wonderful that your dh is finally gone Tin Man!!!!!!! I had a long row to hoe too. Years not months but as you say, it WILL get better with time. 

Thanks for posting this. It will give hope to those who are struggling.