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spirit_walk

Just Got Back From The Mayo Clinic In Minnesota - Is This Familiar To Anyone Else?

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Spirit Walk!!!!!   Is there any chance you are still available out there to give an update on your status.  My wife is going though something very similar and was wondering what you found out and what has happened in the past few years.   I hope this reaches you.   

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13 hours ago, Schochon said:

Spirit Walk!!!!!   Is there any chance you are still available out there to give an update on your status.  My wife is going though something very similar and was wondering what you found out and what has happened in the past few years.   I hope this reaches you.   

Last on July 16, 2014. Just click on a name and it'll take you to their page with info.

feel free to make your own post and people will be happy to try to help.

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I HAVE THE SAME ISSUES!!!

The past 7 years, I have been plagued with fatigue, mouth blisters, numbness/tingling all over, joint pain, poor circulation, etc. from an immediate response to eating certain foods.  I also get migraines, rashes, gut pain, muscle twitching, popping joints, dry mouth, and dizziness/fainting.  "Luckily" all of my tests come back perfectly normal...

I do not have Celiac disease, although I apparently have the genetics.  No auto-immune as ruled out by ANA and other blood tests.  So many scans, nerve, and MRI tests and nothing comes back as abnormal.  My original allergy tests came back normal, so I was told to stop eating anything that made me sick, which is a LOT.

Through learning the hard way, I gave up all grains (ALL), soft dairy, preservatives, artificial ingredients, broccoli, eggplant, pomegranate, pineapple, beans, and probably more.  Had to catch all-natural things derived from corn and that everything has vinegar (rice) in it.  This diet leaves meat, fish, eggs, some cheese, fruit, and veggies.  I somehow trained myself to tolerate chocolate so I could gain weight back (lost 25 lbs), but any sugar used to make me pass out.  Seemed like if you could eat super clean for a while, your system would be less aggravated towards items you are on the fence about.

Also, I had to switch all of my body and cleaning products to all natural and grainfree items.  This helped a lot too.  Shampoos and lotions give me tons if pain if they have intolerable ingredients.

I did find a naturalistic doctor in Connecticut, which is a relief as I'm sure you have been tormented by regular doctors like I have.  Current theory is that I have a combination of allergies, POTS disease (affects your nerves and circulation - remedy is to eat salt, which helps my migraines), and we are looking into testing for leaky gut.  This seems to fit my symptoms well, but I'm disappointed to learn that it is just a "weird, just stop eating bad stuff and let us know if you figure it out" malady. 

The gut test is a special kit blood test called "Advanced Intestinal Barrier Assessment" by Dunwoody Labs.  Code 5150.  DAO, Histamine, Zonulin, LPS - I am assuming these words on the box are what levels they will test for.

I wish I had more intel to pass along, sorry!  You guys are not suffering your mystery illnesses alone though!  I know exactly how hard it is to be a person while trying to balance awful symptoms that have no "acceptable" or even a rational explanation.  Good luck to you all and keep fighting for answers!  I will do the same and let you know!

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On 6/28/2013 at 9:14 PM, spirit_walk said:

Hello,

 

I finally made the trip I've been looking forward to for quite some time. I'd been to 7 different doctors, and none could tell me what is wrong with me or what is causing my symptoms. I thought the Mayo Clinic might finally provide the answer, but once again, no answers.

 

A brief history:

 

Two years ago, I ate whatever I wanted (very poor diet consisting of fast food, sodas, and a lot of sugar) and never experience an allergy to anything. I had a hemorrhoid issue that was causing stress to life, but that was my only real health issue. In March of 2012, I had a banding procedure to remove internal hemorrhoids, and suddenly my health changed. Within a week, my hands began to hurt to the point that washing dishes, turning a door knob, or picking up my 18 month old daughter was almost unbearable. I initially thought I had RA, but after seeing four rheumatologists (including one at Mayo), I'm pretty much convinced I don't have RA or Lupus. The hand pain eventually migrated to my wrists, knees, hips, and finally jaw. Over time, I began getting popping in my wrists and shoulders. I know have considerable popping in those two areas as well as my jaw. In September of 2012, I saw a nutritionist who did IGG/IGE bloodwork for food sensitivities. She told me I was intolerant to 30 foods tested: Egg, carrot, coffee, lemon, green peas, rye, tuna, yeast, asparagus, cashew, crab, lobster, peanuts, safflower, walnut, yogurt, barley, cauliflower, gluten, malt, black pepper, sesame, watermelon, cantaloupe, cheese, grape, milk (cows), pineapple, tomato, wheat.

 

Because I was willing to do anything to feel better, I tried to cut out all foods on the list. I noticed that the change in diet began to make the joint pain better (although it didn't go away). However, this diet has caused me to go from 156 pounds to about 130, give or take a few pounds depending on the day. My metabolism is just too high to maintain weight with this diet. From March of 2012 to February 2013, I went from my GP an orthopedic surgeon, to a nerve specialist, to 3 different rheumatologists. I also saw an allergist who told me I didn't have food allergies. After the third rheumatologist told me to come back and see him when I was in more pain, I gave up and started planning to make the trip to Rochester for the Mayo Clinic. I've never had any SWELLING in my joints even on my worst days, but they do get warm.

 

So here I am today. I've had numerous blood tests done and just finished a battery of them at the Mayo Clinic. I also had a joint scan done and urine/stool tests. I've previously had a bone scan as well. All results are normal. I've spent thousands on tests, MRI's, X-Rays, bone scans, joint scans, and consultations only to be told I'm a healthy person according to all the doctors. I was also told at Mayo that the IGG/IGE tests done by the nutritionist were a scam and I need to go back to eating more foods. He told me there was no such thing as "leaky gut," that it was a hoax.

 

The problem is that food is tied to the joint pain and the POPPING! If I eat things high in sugar or off my list, my joint pain gets worse almost immediately. I can tell a difference in the popping within 10 minutes of swallowing some foods.

 

I'm now having stomach/gut pain (started about 2 months ago). It comes and goes, and the real problems are the joint pain and the popping. I can't go 10 minutes without my shoulders popping, and it's frightening. My wrists begin to feel tight like they're going to lock up, and then they pop when I move them.

 

While I'm not certain I'm intolerant to the 30 foods listed, I am certain that I am to ones I've tried. And food is tied directly to my joint pain and popping.

 

I am having my first colonoscopy and endoscopy done this week (mainly to rule out anything crazy like a tumor or something). I haven't eaten gluten for 9 months though, so they won't be able to do a biopsy for Celiac. Mayo did a gene test for Celiac and I do not carry the genes, but they told me that doesn't completely rule it out (confused).

 

Has anyone had popping in their joints or joint pain without real stomach issues? Even if I don't have Celiac's disease, I know I've become intolerant to many of these foods. I've never had any bleeding even with the hemorrhoid issues.

 

I'm very frustrated. I feel like I'm on an island with no help in sight. But, I'm still looking for answers. I thought maybe someone on this board could provide some insight or clues to my issues.

 

 

Do not eat corn.  Take a good omega 3- Goat milk, yogurt, keifer is extremely good for you. Bone broth with 100% grass fed beef.  Bison is very nutritious and tastes great. Northstar Bison sells 100% grass fed and finished bison.  A little spendy, but well worth it.  Wishing you all the best

 

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You might want to look into relaxation techniques. Holistic Doctor.  Read about the microbiome in your gut. No sugar, caffeine, nightshade veggies.  Check out mind and body healing.  Maybe you are allergic to the banding material?  Is the band in your body for a while?  If it was, that may be what started this.  Examine what is going on in your life?  Stress, anger, etc etc.  Wish you all the best

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On 6/28/2013 at 10:14 PM, spirit_walk said:

Hello,

 

I finally made the trip I've been looking forward to for quite some time. I'd been to 7 different doctors, and none could tell me what is wrong with me or what is causing my symptoms. I thought the Mayo Clinic might finally provide the answer, but once again, no answers.

 

A brief history:

 

Two years ago, I ate whatever I wanted (very poor diet consisting of fast food, sodas, and a lot of sugar) and never experience an allergy to anything. I had a hemorrhoid issue that was causing stress to life, but that was my only real health issue. In March of 2012, I had a banding procedure to remove internal hemorrhoids, and suddenly my health changed. Within a week, my hands began to hurt to the point that washing dishes, turning a door knob, or picking up my 18 month old daughter was almost unbearable. I initially thought I had RA, but after seeing four rheumatologists (including one at Mayo), I'm pretty much convinced I don't have RA or Lupus. The hand pain eventually migrated to my wrists, knees, hips, and finally jaw. Over time, I began getting popping in my wrists and shoulders. I know have considerable popping in those two areas as well as my jaw. In September of 2012, I saw a nutritionist who did IGG/IGE bloodwork for food sensitivities. She told me I was intolerant to 30 foods tested: Egg, carrot, coffee, lemon, green peas, rye, tuna, yeast, asparagus, cashew, crab, lobster, peanuts, safflower, walnut, yogurt, barley, cauliflower, gluten, malt, black pepper, sesame, watermelon, cantaloupe, cheese, grape, milk (cows), pineapple, tomato, wheat.

 

Because I was willing to do anything to feel better, I tried to cut out all foods on the list. I noticed that the change in diet began to make the joint pain better (although it didn't go away). However, this diet has caused me to go from 156 pounds to about 130, give or take a few pounds depending on the day. My metabolism is just too high to maintain weight with this diet. From March of 2012 to February 2013, I went from my GP an orthopedic surgeon, to a nerve specialist, to 3 different rheumatologists. I also saw an allergist who told me I didn't have food allergies. After the third rheumatologist told me to come back and see him when I was in more pain, I gave up and started planning to make the trip to Rochester for the Mayo Clinic. I've never had any SWELLING in my joints even on my worst days, but they do get warm.

 

So here I am today. I've had numerous blood tests done and just finished a battery of them at the Mayo Clinic. I also had a joint scan done and urine/stool tests. I've previously had a bone scan as well. All results are normal. I've spent thousands on tests, MRI's, X-Rays, bone scans, joint scans, and consultations only to be told I'm a healthy person according to all the doctors. I was also told at Mayo that the IGG/IGE tests done by the nutritionist were a scam and I need to go back to eating more foods. He told me there was no such thing as "leaky gut," that it was a hoax.

 

The problem is that food is tied to the joint pain and the POPPING! If I eat things high in sugar or off my list, my joint pain gets worse almost immediately. I can tell a difference in the popping within 10 minutes of swallowing some foods.

 

I'm now having stomach/gut pain (started about 2 months ago). It comes and goes, and the real problems are the joint pain and the popping. I can't go 10 minutes without my shoulders popping, and it's frightening. My wrists begin to feel tight like they're going to lock up, and then they pop when I move them.

 

While I'm not certain I'm intolerant to the 30 foods listed, I am certain that I am to ones I've tried. And food is tied directly to my joint pain and popping.

 

I am having my first colonoscopy and endoscopy done this week (mainly to rule out anything crazy like a tumor or something). I haven't eaten gluten for 9 months though, so they won't be able to do a biopsy for Celiac. Mayo did a gene test for Celiac and I do not carry the genes, but they told me that doesn't completely rule it out (confused).

 

Has anyone had popping in their joints or joint pain without real stomach issues? Even if I don't have Celiac's disease, I know I've become intolerant to many of these foods. I've never had any bleeding even with the hemorrhoid issues.

 

I'm very frustrated. I feel like I'm on an island with no help in sight. But, I'm still looking for answers. I thought maybe someone on this board could provide some insight or clues to my issues.

 

 

I have what I believe is or are hemorrhoids and my chronic joint pain seemed to come about at around the same time. These symptoms all came about immediately after the birth of my daughter. Because my son started experiencing major health concerns our family made a decision to trial a 100% gluten free diet. I'll be damned, my joint pain entirely disappeared. Then I noticed that this chronic that I had for 11 years went away. I no longer felt tired all the time. I no longer experienced boughts of dizziness. 

Here's what I recommend. Do an elimination diet and start with Paleo.  If you're anything like me you may benefit from adding a non dairy kefir to your daily diet. I feel more like a normal person if I avoid gluten, but I feel like a million bucks when I drink my daily kefir. Look for a brand called Forager Project. It contains ten live active probiotic cultures. I stick to a simple whole food diet. I've eliminated all grains, soy, dairy, nightshades and drastically reduced iodine intake. Best of luck on your journey towards healing!

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Vomiting, passing out, abdominal pain that occurs as soon as my stomach empties into the small intestine (I consume mushy, well-cooked foods then), hives, allergic reactions are way more severe, indigestion, anxiety, irrtability, fatigue, achy body, tingling, become lactose intolerant, constipation, diarrhea.  Yep, many things.  Symptoms can change too.  Celiac disease is like a chameleon.  Symptoms for me can last for about six months.  Most severe the first week and gradually getting better.  
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