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A Follow Up On My Situation


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#1 Renegade

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Posted 20 October 2013 - 11:30 AM

Hello here, I figured I should post an update on my situation for those still interested, I know I must have annoyed more then one here so, feel free to skip this thread if you were one of those I might have annoyed.

 

Well it turns out I am not celiac but I still need to avoid gluten, I been asking myself questions on and on for months now and tried so, so many diets and analyzing everything that goes inside my mouth since no one yet and no doctor were able to tell me what was causing my symptoms, to this day it is still all hypothesis yet those hypothesis have worked to a degree at least.

 

Back in early August was the bottom line of the worst, I had so many spasms of all kinds and literally thought my intestine would explode from just a slip of water, at the time I knew celiac was officially not my symptom, I got tested. so I was eating chicken, rice, oats,barley, wheat(for celiac diagnosis) for the most part. This clearly was doing no good as I was in a state of crisis, I had to do something NOW or I would not live up for my next exam. Btw the reaction I was getting from eating wheat was no more harmful then any other grain, it gave me spasms and inflammation, no puking or anything a celiac gets.

 

This is when I changed my diet drastically. eating the same soup full of veggies made of barley and fondu sauce that contain soy, I started to feel SO much better, my constipation was gone and I had regular bowel movements, I been having bowel movements ever since and most of my spasms were gone, I was still in much pain but it was SUCH a relief.

 

So I started to build myself a diet plan that I would follow, I came to think back and realize that ANY meat gave me symptoms ALL different symptoms, chicken made my stomach feel inflamed for 4hours, beef made my intestine cry in pain, egg just made me feel bad overall sort of bloated. But then I discover fish, sole fish and I had no problems with it. I also discovered sunflower nuts and pumpkin seed with dried raisins and I was eating buckwheat too as it is not a grain but a fruit supposedly, anyway it was working great.

 

So for a a whole 2 weeks I was eating nuts for breakfast, fish and soup with buckwheat and I was getting better and better and btw at that time I wasn't smoking hash (weed) either. Then I decided to buy some hash again and boom, brain fogs, MASSIVE cramps and I felt so sick instantly so I thought maybe it was the hash all along. I would get FIVE second brain fogs after smoking hash and cramps lasting 5 to 6 hours way after the effects of the drug were out I could still feel the pain. That was back at the end of August so I thought it might have been the hash that damaged by whole body, I took a picture, I looked SO dang sick, my veins , my belly I looked PREGNANT and still do, pregnant from my intestine being SO INFLAMED, not from fat, remember. I lost weight.

 

So I quit the hash I threw it away swearing to never smoke that ever again but then I tried weed the next day and i felt good so I thought hash was the cause of all of this so I started to eat normal(grains,chocolate,etc) again and I felt good, no brain fogs and I had energy, I felt sorta normal. Only a day later my intestines would hurt again, not from the weed but from the food, So I went back to my strict diet of nuts,soup and fish and was getting back there while still smoking weed, but it gave me cramps back and I felt sick the same sickness that I had on hash only 5 times lesser yet bad enough to annoy me. Tells you how bad the hash would make me feel.

 

So fast forward 2 weeks of no weed and strict diet, I get better but then ANY time I try to eat anything else that is either a grain a meat substitute I feel bad, meat is instant and grain takes a few hours. Throughout that time I also found I couldn't have fish anymore, it was fine at first but it made me feel worse and worse, now I have again a bunch of frozen food I can't eat.

 

I also tried to eat soy in it's pure form (tofu) to see if I react and felt bad just like when I eat eggs just way worse so now I am cutting soy too.

I was doing very good 3 days ago until I try new grains amaranth, teff, quinoa and god fo I feel bad again. I also wonder if buckwheat wouldnt be bad too as it's the only (grain) that has yet to give me symptoms, I wasn't able to reintroduce any food, I can't have meat, or grain so I am stuck with veggies and nuts and wondering if I should cut buckwheat too.

 

So here I am not knowing what to eat anymore. I was doing very good yet I am intolerant to just about everything out there. I have to be on a meat-free/gluten-free/grain free diet/soy-free/dairy-free/ diet, so what's left? Celery and nuts?

 

I posting this to give you guys an update and ask if this is even possible? I tried to google all those intolerance and really is it possible to be intolerant to ALL meat and their substitute as well as ALL grains and soy, will I just be left eating veggies for the rest of my life?

 

What is your thought on buckwheat , do you think it should be okay, could it be the only grain like that I can have?

 

I have 3 weeks left before I can see a gastroenterologist for free but since the last 3 doctors I saw were all clueless I am expecting the same response from the specialist. Seems like those are the things you always gotta figure out on your own.

 

I could add a lot more info but it would be way too long thanks for your inputs.

 

Edit: To make this easier "Weed Free/Grain Free(Consume Buckwheat) Meat Free / Dairy Free"


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#2 Marilyn R

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Posted 20 October 2013 - 12:02 PM

Hello here, I figured I should post an update on my situation for those still interested, I know I must have annoyed more then one here so, feel free to skip this thread if you were one of those I might have annoyed.
 
Well it turns out I am not celiac but I still need to avoid gluten, I been asking myself questions on and on for months now and tried so, so many diets and analyzing everything that goes inside my mouth since no one yet and no doctor were able to tell me what was causing my symptoms, to this day it is still all hypothesis yet those hypothesis have worked to a degree at least.
 
Back in early August was the bottom line of the worst, I had so many spasms of all kinds and literally thought my intestine would explode from just a slip of water, at the time I knew celiac was officially not my symptom, I got tested. so I was eating chicken, rice, oats,barley, wheat(for celiac diagnosis) for the most part. This clearly was doing no good as I was in a state of crisis, I had to do something NOW or I would not live up for my next exam. Btw the reaction I was getting from eating wheat was no more harmful then any other grain, it gave me spasms and inflammation, no puking or anything a celiac gets.
 
This is when I changed my diet drastically. eating the same soup full of veggies made of barley and fondu sauce that contain soy, I started to feel SO much better, my constipation was gone and I had regular bowel movements, I been having bowel movements ever since and most of my spasms were gone, I was still in much pain but it was SUCH a relief.
 
So I started to build myself a diet plan that I would follow, I came to think back and realize that ANY meat gave me symptoms ALL different symptoms, chicken made my stomach feel inflamed for 4hours, beef made my intestine cry in pain, egg just made me feel bad overall sort of bloated. But then I discover fish, sole fish and I had no problems with it. I also discovered sunflower nuts and pumpkin seed with dried raisins and I was eating buckwheat too as it is not a grain but a fruit supposedly, anyway it was working great.
 
So for a a whole 2 weeks I was eating nuts for breakfast, fish and soup with buckwheat and I was getting better and better and btw at that time I wasn't smoking hash (weed) either. Then I decided to buy some hash again and boom, brain fogs, MASSIVE cramps and I felt so sick instantly so I thought maybe it was the hash all along. I would get FIVE second brain fogs after smoking hash and cramps lasting 5 to 6 hours way after the effects of the drug were out I could still feel the pain. That was back at the end of August so I thought it might have been the hash that damaged by whole body, I took a picture, I looked SO dang sick, my veins , my belly I looked PREGNANT and still do, pregnant from my intestine being SO INFLAMED, not from fat, remember. I lost weight.
 
So I quit the hash I threw it away swearing to never smoke that ever again but then I tried weed the next day and i felt good so I thought hash was the cause of all of this so I started to eat normal(grains,chocolate,etc) again and I felt good, no brain fogs and I had energy, I felt sorta normal. Only a day later my intestines would hurt again, not from the weed but from the food, So I went back to my strict diet of nuts,soup and fish and was getting back there while still smoking weed, but it gave me cramps back and I felt sick the same sickness that I had on hash only 5 times lesser yet bad enough to annoy me. Tells you how bad the hash would make me feel.
 
So fast forward 2 weeks of no weed and strict diet, I get better but then ANY time I try to eat anything else that is either a grain a meat substitute I feel bad, meat is instant and grain takes a few hours. Throughout that time I also found I couldn't have fish anymore, it was fine at first but it made me feel worse and worse, now I have again a bunch of frozen food I can't eat.
 
I also tried to eat soy in it's pure form (tofu) to see if I react and felt bad just like when I eat eggs just way worse so now I am cutting soy too.
I was doing very good 3 days ago until I try new grains amaranth, teff, quinoa and god fo I feel bad again. I also wonder if buckwheat wouldnt be bad too as it's the only (grain) that has yet to give me symptoms, I wasn't able to reintroduce any food, I can't have meat, or grain so I am stuck with veggies and nuts and wondering if I should cut buckwheat too.
 
So here I am not knowing what to eat anymore. I was doing very good yet I am intolerant to just about everything out there. I have to be on a meat-free/gluten-free/grain free diet/soy-free/dairy-free/ diet, so what's left? Celery and nuts?
 
I posting this to give you guys an update and ask if this is even possible? I tried to google all those intolerance and really is it possible to be intolerant to ALL meat and their substitute as well as ALL grains and soy, will I just be left eating veggies for the rest of my life?
 
What is your thought on buckwheat , do you think it should be okay, could it be the only grain like that I can have?
 
I have 3 weeks left before I can see a gastroenterologist for free but since the last 3 doctors I saw were all clueless I am expecting the same response from the specialist. Seems like those are the things you always gotta figure out on your own.
 
I could add a lot more info but it would be way too long thanks for your inputs.

 
My thoughts:  Buckwheat should be ok.  Marahoochee probably ok.  Soy may have been the culprit if you were using it on the new grains you tried.  Whole foods should all be ok on your diet (meat, veggies, fruits).  Have you searched the forum about cross contamination?  That might be something you'd like to look into.  Good luck.
 
I had a reaction to quinoa too.  Good luck.


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Positive improvement from elimination diet. Mother dx'd by Mayo Clinic in late 1980s. Negative blood tests and Upper & Lower GI biopsy. Parathyroidectomy 12/09. Recurring high calcium level 4/10. Gluten-free 4/10. Soy & Dairy Free 6/10. Corn free 7/10. Grain free except rice 8/10. Legume free 6/11. Fighting the battle of the battle within myself, and I'm going to win!

As of 2/12, tolerating dairy, corn, legumes and some soy, but I limit soy to tamari sauce or modest soy additives. Won't ever try quinoa again!

Discoid Lupus from skin biopsy 2011, discovered 2/12 when picking up medical records. Systemic Lupus Dx 6/12. Shingles 10/12.

#3 IrishHeart

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Posted 20 October 2013 - 01:43 PM

okay, here's a radical thought. Instead of trying to figure out what FOOD is the problem, consider that you keep irritating your GI tract with

things you are smoking?

 

STOP SPENDING YOUR MONEY ON WEED 

Yeah, I know how much it costs and it's not as cheap as it was when I was your age so unless

you are growing superior buds in a hydroponic garden you are spending enough to have seen a doctor by now.

(don't argue--- you know I speak the truth!) 

 

Why are you surprised that hash can give you brain fog? that's the point of smoking it. At least it was in 1980.

 

Also, those things can irritate the gut just like anything else.

 

The fundamental thing here is: if your gut is inflamed, ANYTHING can seem like it's "intolerable".

 

Also, I hate to say this again, but if you suspect you are a celiac and wish to be properly tested, you need to be consuming gluten.


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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#4 kareng

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Posted 20 October 2013 - 01:45 PM

Just going to say that I know a couple of people who appear to be allergic to tobacco & marijuana. It is possible you are too. Glad you found at least part of your problem.
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#5 Renegade

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Posted 20 October 2013 - 02:18 PM

okay, here's a radical thought. Instead of trying to figure out what FOOD is the problem, consider that you keep irritating your GI tract with

things you are smoking?

 

STOP SPENDING YOUR MONEY ON WEED 

Yeah, I know how much it costs and it's not as cheap as it was when I was your age so unless

you are growing superior buds in a hydroponic garden you are spending enough to have seen a doctor by now.

(don't argue--- you know I speak the truth!) 

 

Why are you surprised that hash can give you brain fog? that's the point of smoking it. At least it was in 1980.

 

Also, those things can irritate the gut just like anything else.

 

The fundamental thing here is: if your gut is inflamed, ANYTHING can seem like it's "intolerable".

 

Also, I hate to say this again, but if you suspect you are a celiac and wish to be properly tested, you need to be consuming gluten.

 

*sigh* at the risk of repeating the same thing here and making everyone irritated I will ask, did you not read my thread? I was eating gluten to get tested and I did, I also stopped smoking. No I do not suspect gluten, I suspect grains though.


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#6 IrishHeart

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Posted 20 October 2013 - 02:22 PM

*sigh* at the risk of repeating the same thing here and making everyone irritated I will ask, did you not read my thread? I was eating gluten to get tested and I did, I also stopped smoking. No I do not suspect gluten, I suspect grains though.

 

 

*sigh" well, I did read your whole post and my answer is the same.

 

It's only been two weeks, but you were smoking and eating gluten until that time, so why wouldn't your gut be irritated still?

 

My point is, it may not be a particular food, but your gut.

 

See what the Gi doctor says.

 

If you need to eliminate grains, check out the Paleo websites. They provide good info on getting started diets.. 


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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#7 Renegade

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Posted 20 October 2013 - 02:41 PM

*sigh" well, I did read your whole post and my answer is the same.

 

It's only been two weeks, but you were smoking and eating gluten until that time, so why wouldn't your gut be irritated still?

 

My point is, it may not be a particular food, but your gut.

 

See what the Gi doctor says.

 

If you need to eliminate grains, check out the Paleo websites. They provide good info on getting started diets.. 

Well I was getting a lot better throughout these 2-3weeks until I tried quinoa teff and amaranth in the last 3 days. And I thought since ALL grains or grainlike seems to give problems I was wondering what was you guys thought on buckwheat, and also how likely you guys think it is that I could have an intolerance to literally almost everything but veggies seeds and some nuts? It seems as if some nuts agree with me and some don't as well as veggies, I find all this extremely limiting and rather then being able to reintroduce foods it seems that for some foods the more I eat it the more I become intolerant, Just like I could have rice, fish, beef,chicken sweet potatoes back then, no more.

 

I'm just hoping that I don't become intolerant to everything out there as I eat the same thing every day.

 

I guess I was looking for a 2nd opinion since googling nuts/meat/grain intolerance(not allergy) seems to not even be a thing and I seem to have both and more.


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#8 GottaSki

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Posted 20 October 2013 - 02:52 PM

I agree. It sounds like your gut is inflammed and can react to anything. Eat what was working for 2-3 weeks and wait for your gastro appt.

Cant recall if you are taking probiotics and/or digestive enzumes - if not give think about starting and do give it more than a couple weeks to help.

Once you get your system to settle...wait another month then introduce new foods...but never more frequently than one food item at a time with at least three days between trials.
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#9 Renegade

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Posted 20 October 2013 - 02:56 PM

I agree. It sounds like your gut is inflammed and can react to anything. Eat what was working for 2-3 weeks and wait for your gastro appt.

Cant recall if you are taking probiotics and/or digestive enzumes - if not give think about starting and do give it more than a couple weeks to help.

Once you get your system to settle...wait another month then introduce new foods...but never more frequently than one food item at a time with at least three days between trials.

I been taking probiotic for 2 weeks and was wondering if I should stop, I did start taking my digestive enzymes again as of the last 2 days and I wondered if I should stop as who knows what else could cause a reaction? I feel digestive enzymes they help with gas though.


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#10 GottaSki

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Posted 20 October 2013 - 03:02 PM

I been taking probiotic for 2 weeks and was wondering if I should stop, I did start taking my digestive enzymes again as of the last 2 days and I wondered if I should stop as who knows what else could cause a reaction? I feel digestive enzymes they help with gas though.


Just my opinion but keep taking both, drink lots of water, eat what bothers you the least, continue to lay off the weed and give it time without changing things -- along with checking in with gastro.
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#11 IrishHeart

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Posted 20 October 2013 - 03:03 PM

Just my opinion but keep taking both, drink lots of water, eat what bothers you the least, continue to lay off the weed and give it time without changing things -- along with checking in with gastro.

 

I concur, IMHO.


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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#12 moosemalibu

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Posted 20 October 2013 - 03:45 PM

Just my opinion but keep taking both, drink lots of water, eat what bothers you the least, continue to lay off the weed and give it time without changing things -- along with checking in with gastro.

 

I agree. Your stress alone can make things worse. I know it is hard not to be right now but try to do what works until your appointment and try to lower your stress level. Try controlled breathing/meditation/yoga. Stress makes my symptoms much worse. Just a thought...

 


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Jamie


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#13 mommida

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Posted 20 October 2013 - 06:42 PM

You do know that barley is also gluten, right?

 

There are plenty of things that could be the potential problem.  A lot of the potential issues can be ruled out by an endoscopy with biopsy.  This is the really crappy part, you have to eat the crap that bothers you so the testing can pick up on the damage and diagnose your problem. :wacko:   Grrrr.  You are stuck between a rocak and a hard place.

 

With out preachin' like yo mamma, but I have to say it, Stop pissing your money away on weed and hash and pay a damn doctor! :)

 

You haven't given a clear description of your gut pain.  Like stabbing pain in your right lower rib cage that radiates to your back. ~ probably gallbladder  Lower right pain that spasms. ~spastic colon

 

Continue paying attention to details about your diet (and habits), BM's, symptoms, all daily activities and locations you have been to.  (realized a local building keeps wrecking havoc with my allergies and must have some kind of mold issue)

 

When did these symptoms start?  Where you are located the season is?


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