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My Frustration Level Is At An All Time High


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#1 RonSchon

 
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Posted 07 September 2012 - 07:42 AM

I have no idea how I can go forward.

I'm eating almost nothing, and came up poisoned by something.

Since I'm only eating about 4 things, the one thing that seems most logical since I don't have it every day would have been the banana I had.

When I was in deep fog and pain over the rest of yesterday, I totally forgot I ate one, but last night I remembered that I did eat a banana.

So I google'd banana intolerance and came up with this whole "histamine" class of food that I had no idea even existed.

When I look at the list of foods - many of them are things I have known I was intolerant of - this is the first time I've ever had a problem with a banana.

My reaction to the banana was the same as my reaction to gluten - brain/vision fog, severe joint pain, very tired, bloat, constipation.

I had an allergy test about a month ago - in that test I was pricked for about 40 food items. Non-reactive to all of them, and many on the list are on the histamine "avoid" lists.

I don't know what to do with this new issue.

I read some posts that suggest my intestinal system could recover and these foods might become tolerable once again.

I don't know what bothers me more, just being poisoned again or having another full set of items I have to avoid.
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#2 IrishHeart

 
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Posted 07 September 2012 - 08:19 AM

Ron,

I understand your frustration, I really do.
Allergen-specific IgE antibody tests are usually ordered when a person has signs or symptoms that suggest an allergy to one or more substances. Signs and symptoms may include:

Hives
Dermatitis
Eczema
Red itchy eyes
Coughing, nasal congestion, sneezing
Asthma
Itching and tingling in the mouth
Abdominal pain, or vomiting and diarrhea

Are these your symptoms?

If not, then, it is likely that the reactions you are having is coming from gluten CC. IMHO

I do not know how long you have been gluten-free nor do I know if you live with GEs (gluten eaters) or if you have made your home safe from CC or how often you eat out or any other number of factors that may be at play for why you are feeling "poisoned".

I honestly do not believe a banana is causing your problem right now, but who knows?

Here is what I do know and maybe it will help in some way.

If you are newly diagnosed, you may feel crappy for a long time.

Sorry, but it takes some celiacs anywhere from 6 months to 2 years or LONGER to stop feeling lousy.

I hate this idea myself, but it is the truth, especially if you are DXed at a later age. There's a lot of damage to repair in there and the one thing my doctor stresses (and what I tell anyone else who will listen) is you need PATIENCE, and tons of it.

Healing takes time.

My gut instinct suggests you are being CCed regularly, as I saw where you ate out recently and felt this same way.

Until you can stop CC from sneaking in, you are not going to get the inflammatory response from the gluten to calm down and in turn, stop feeling neurological symptoms like brain fog, etc.

Go through your home and see where you may have overlooked gluten- containing foods or CCed utensils, toaster, etc. Avoid dining out for a bit. Eat plain, whole, nutritious foods and drink water.

Hope this helps.
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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


#3 RonSchon

 
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Posted 07 September 2012 - 09:04 AM

Thanks for the response, IrishHeart.

I haven't eaten out since that post of many weeks ago.

Since then, I have eaten ONLY steamed, unseasoned, broccoli & cauliflower, fresh unseasoned beef, chicken, and pork, and Applegate organic, grass-fed beef hot dogs that are labeled as gluten-free, as well as casein free, Ocean Spray Cranapple juice, in addition to water.

I have an incredibly small possibility of CC. I have my own cooking utensils, dishes, and flatware. My roommate uses the kitchen almost not at all - but when he does he is respectful of my space.

Out of the blue, last week, I suddenly was getting symptoms from my daily latte made with 3 ounces of whole milk. I cut that out and recovered. Since cutting that out last Friday I have been back on track until yesterday when I had a banana and my body reacted as if I'd eaten a gluten pizza.

My reaction was just what I listed - brain/vision fog, severe joint pain, very tired, bloat, constipation. In the research I did last night, I noticed the list that you mention - I'm not having those symptoms.

That is my frustration, I guess, I am very confident that there is not a possibility of gluten contact, yet my reaction (in a very very limited diet)is in line with a gluten contact.
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#4 IrishHeart

 
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Posted 07 September 2012 - 09:27 AM

That is perplexing, Ron and I am not sure what to make of it.

No shared colanders or toasters, so that's not it.

Did you have your vitamin levels checked? perhaps it is not the food at all but a deficiency? Low folate had me pretty goofy and extremely tired.
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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


#5 luckyme2

 
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Posted 07 September 2012 - 09:32 AM

RonSchon---->
I've gone through similar thing,I've been reacting to buckwheat,potatoes and bananas. Nobody could tell me what's the matter. So I put aside all containing starch and that was done! I have very good imagination what I need. It was protein in a clean way-chicken filee without skin and gluten-free fish oil plus steamed cabbages,tomatoes and onions (much). Sometimes boiled eggs. I got each day better and better. I didn't use any other supplements,just let my body to recure naturally. Now after 8 months since I started,I have got rid of different skin rashes,itches,migraines and lack of stamina. Glass of wine helps :) time by time. Sorry if my English not so good,think You will get better ,too.
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Anete

#6 jerseyangel

 
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Posted 07 September 2012 - 09:46 AM

Thanks for the response, IrishHeart.

I haven't eaten out since that post of many weeks ago.

Since then, I have eaten ONLY steamed, unseasoned, broccoli & cauliflower, fresh unseasoned beef, chicken, and pork, and Applegate organic, grass-fed beef hot dogs that are labeled as gluten-free, as well as casein free, Ocean Spray Cranapple juice, in addition to water.

I have an incredibly small possibility of CC. I have my own cooking utensils, dishes, and flatware. My roommate uses the kitchen almost not at all - but when he does he is respectful of my space.

Out of the blue, last week, I suddenly was getting symptoms from my daily latte made with 3 ounces of whole milk. I cut that out and recovered. Since cutting that out last Friday I have been back on track until yesterday when I had a banana and my body reacted as if I'd eaten a gluten pizza.

My reaction was just what I listed - brain/vision fog, severe joint pain, very tired, bloat, constipation. In the research I did last night, I noticed the list that you mention - I'm not having those symptoms.

That is my frustration, I guess, I am very confident that there is not a possibility of gluten contact, yet my reaction (in a very very limited diet)is in line with a gluten contact.

Hi Ron, I understand. I had an awful time at the beginning--I was so careful and still had reactions where I couldn't pin down the cause. I even sought the help of an allergist and asked him to run food intolerance testing but he refused, saying an elimination was really the best way to figure things out. He told me that the tests can produce a lot of false positives, and that people at that point have to do an elimination diet of the positive foods. Anyway, that's my experience with that. I did do an elimination diet and discovered that at the time I couldn't tolerate corn, soy, dairy, legumes, coconut, eggs, and tapioca :( .

It is 7 years later, and I have been able to add about half of these back. It gets easier, really. :)

In looking over your present diet, I wonder if possibly the few (albeit safe) processed foods might be contributing. I know I would not have gotten away with the hot dogs or, believe it or not, the juice. Again, not saying they are not safe, but anything processed would put me right back to my classic symptoms as I was still healing.

I had to go down to fresh meats/poultry, potatoes, olive oil, fruits (except citrus), veggies (except legumes), spring water, and tea. Salt only for seasoning. I stayed there until things settled down and then added one new thing at a time--like rice, eggs,etc. Some of us have to go very slowly.

Another thing that made a difference for me was going to unscented personal care products, unscented laundry products, and basic Castile soaps.

It's a pain in the patoot, but you will get it figured out. A simple food journal can be invaluable in tracking your symptoms and how they relate to your diet.

Best of luck!
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Patti


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#7 IrishHeart

 
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Posted 07 September 2012 - 09:58 AM

I agree with Patti--whole, plain, simple foods.

I gave up dairy, soy, high acidic foods --like coffee and juices (had no choice, my GI tract was raw) -- for the first 10 months.

By 18 months, I got most back.

Hope you feel better soon, Ron.

Most of us can really relate to your struggles here.
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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


#8 RonSchon

 
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Posted 07 September 2012 - 09:58 AM

Anete,

You have hit on several items that "out of the blue" just started affecting me.

It all started on a post i did several weeks back where I thought I was CC'd, but I wasn't - it was the french fries. I figured that out several days later when I made a baked potato at home - no CC possibility - but I did put ground black pepper on it. When I balanced my experience at a couple of restaurants and the baked potato from home, the only thing all 3 experiences had was potato (one of the places didn't have any pepper involved with the food or fries).

I haven't tried buckwheat, but potatoes and bananas I am completely sure are causing me all of the symptoms that gluten causes for me.

IrishHeart,

Yes - no shared anything. My own fridge, even. My vitamin levels are fine - I've checked them through 2 blood tests in the last 10 months.

I would love to take a multivitamin, but I've had so many reactions from them over the years (before gluten was a known issue for me), that I try not to take the MV's. I have been thinking of trying one again for the obvious reason of how limited my intake has become. I was all giddy when I was able to take a sublingual B-12 and actually realize the kick, but that was short lived as B12 is now instantly bringing on gout. If I take one tab, I have gout within 4 hours. I take a vitamin C, gluten-free, and probably only take one 3 times a week.

I'm perplexed, and have spent so much money on Dr's with no results.
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#9 Bubba's Mom

 
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Posted 07 September 2012 - 11:25 AM

I'm wondering if salicylates might be bothering you since you got glutened recently? That's what happened to me.
There were so many foods I couldn't tolerate at all when I was first DXed, but allergy testing showed they fall into the "intolerance" category rather than allergy.
As I healed I was able to add some things, but salicylates can accumulate and cause symptoms, so you have to take it slow. I got to where I only had problems if I ate too many SAL foods.

I recently got glutened and had an immediate reaction to all SALS. They're like pouring salt into a wound. My finger joints hurt so bad I couldn't open my medicine bottles.

Wanna take a look?
http://salicylatesensitivity.com/
I hope you can get this sorted out. It sure is tough...
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#10 RonSchon

 
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Posted 07 September 2012 - 11:50 AM

Wanna take a look?
http://salicylatesensitivity.com/
I hope you can get this sorted out. It sure is tough...
[/quote]

I took a look, the things that set me off are mostly in the negligible category, and there are things I can have that are in the high category.

Thanks a lot for taking the time to throw it out there for me though, I appreciate it.

I'm a bit of an overachiever, so I must be having a hard time with the patience required to heal.

JerseyAngel - I can't lose the Applegate organic dogs - you will see a grown man cry if that has to happen. It is the only quick/easy thing I have.

But I hear what you are saying - it can be a great product and a great company, but it has an unknown element to it.

I'm keeping that 1 thing for the moment, but if I know what has to go next if I don't clear up from this weeks drama.

Thanks all of you, I needed a group hug.
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#11 Lolli

 
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Posted 07 September 2012 - 12:30 PM

Oh boy. Yeah.
My mom asked me just yesterday, if other celiacs were hungry.
And because I've been here, I can tell her, "yes!"
I'm just like all of you, whitling away all the foods and down to nothing until my body calms down.
I've lost half of the weight I gained at first. Oh well. It'll come back.
I can FEEL my system calming down.
PRICELESS !!!
Yeah, I'm ravinous.
I just eat a pound of a tested food. So what there's no flavor.
Now, I've built up a stockpile of them and can actually have 3 different foods on my plate for supper. Yay!
It's still pretty much twigs and berries during the day.
I might test egg whites this weekend. Maybe. I'd have to notify some people I'm accountable to before I do that. They know what's going on.
WE CAN DO THIS !!!
OTHERS HAVE GONE BEFORE US !!!
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#12 IrishHeart

 
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Posted 07 September 2012 - 01:04 PM

Just to put this in perspective a little?

As careful as I am (I mean I conduct the Spanish Inquisition when I go out :lol: ), I was glutened at a restaurant on Sunday, August 19.

What's today? Sept. 7.

Only today have I begun to feel the "level of normalcy" that it took me over 21 months to achieve.

Some people underestimate what a speck of gluten can do to us.
I don't.

It does not take much to make me suffer, which is why I always suggest figuring out sources of CC first.

If you were glutened even a month ago, your system is still recovering and any food may be bothering you right now.

I could not eat anything without stomach pain, nausea and all of my symptoms including brain fog and severe joint, muscle and tendon pain came roaring back as well as vertigo. Not fun.

Gluten--she is a sneaky bugger.

Stay the course. Eat plainly and hang in there.
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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


#13 JNBunnie1

 
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Posted 07 September 2012 - 03:37 PM

Gluten is a she, isn't it? Underhanded, shows up with no warning, COMPLETELY dangerous on the road! :lol: :lol:
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If you're going through hell, keep going. ~Winston Churchill

#14 IrishHeart

 
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Posted 07 September 2012 - 05:19 PM

I referred to gluten as a "she", but I am not sure why. :lol: Maybe I was thinking along on the lines of a bulldozing loudmouth mother- in- law type? Vulgar, loud and pushy, barging in on you when you are not expecting her (and had planned on a quiet weekend), bullying you and giving you a migraine and making you ill-tempered and ready to swan dive off a cliff, overstaying her welcome by a week or more and constantly reminding you why you wish you had never met her in the first place.
  • 0

"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


#15 1desperateladysaved

 
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Posted 07 September 2012 - 06:33 PM

Yeah, aren't hotdogs convenient? I just wanted to let you know that I thought I reacted to hotdogs lately. Nothing in the ingredient list, or the nice e-mail I got from the company seemed suspicious. At any rate they were not Applegate hotdogs.

But I keep thinking I am reacting to this or that; I don't really know. One thing is clear my body is working hard and my mind too.
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