My Frustration Level Is At An All Time High

[RonSchon]

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.

[IrishHeart]

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.

[RonSchon]

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.

[IrishHeart]

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.

[luckyme2]

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.

[jerseyangel]

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!

[IrishHeart]

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.

[RonSchon]

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.

[Bubba's Mom]

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?

Open Original Shared Link

I hope you can get this sorted out. It sure is tough...

[RonSchon]

Wanna take a look?

Open Original Shared Link

I hope you can get this sorted out. It sure is tough...

[Lolli]

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 !!!

[IrishHeart]

Just to put this in perspective a little?

As careful as I am (I mean I conduct the Spanish Inquisition when I go out ), 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.

[JNBunnie1]

Gluten is a she, isn't it? Underhanded, shows up with no warning, COMPLETELY dangerous on the road! :lol:

[IrishHeart]

I referred to gluten as a "she", but I am not sure why. 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.

[1desperateladysaved]

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.

[RonSchon]

If you haven't tried the Applegate Organic Grass Fed beef hot dogs, I highly recommend them... They are pretty unbelievable for a hot dog...

ingredients: Organic Grass-Fed Beef, Water. Contains Less Than 2% Of The Following: Sea Salt, Organic Spices, Organic Dehydrated Garlic, Organic Dehydrated Onion, Organic Paprika, Celery Powder.

[eatmeat4good]

I've been considering trying them, ever since you posted that if they were taken away from you we would see a grown man cry. I took that as a pretty good Hot Dog recommendation. I haven't had a hot dog in a long time but seeing your raving about them sure makes me want one, and since I'm Paleo/Primal they would be on my list!

They prolly cost $95 a package though.

[IrishHeart]

I bought some Applegate dogs for my mother when she was here visiting. I had one. Not bad--except I found them rather salty.

Could just be my taste buds, though.

She liked them a lot. I have wrapped and baked them in CHEBE dough (no grains in that mix, just tap starch) --as JNBUNNIE suggested--and Hubs liked them.

[Bubba's Mom]

If you haven't tried the Applegate Organic Grass Fed beef hot dogs, I highly recommend them... They are pretty unbelievable for a hot dog...

ingredients: Organic Grass-Fed Beef, Water. Contains Less Than 2% Of The Following: Sea Salt, Organic Spices, Organic Dehydrated Garlic, Organic Dehydrated Onion, Organic Paprika, Celery Powder.

Hmmm..could the paprika be bothering you? I think it's a nightshade? When I was first DXed I couldn't tolerate it at all, but can now.

[eatmeat4good]

A couple of others have reported paprika problems recently. Nightshades were the cause for one, and only paprika was the intolerance for the other who could eat potatoes.

[T.H.]

If the banana was what got you and you don't believe it's gluten, I can think of a couple possibilities you could check out, although neither seems perfect.

If you react to corn or to sulfites, the bananas can make you sick. Numerous people with either of these conditions report reacting to bananas (I'll say why in a sec). I react to gluten and sulfites and my reactions to both include brain fog and exhaustion. I don't have gastro reactions, but they are fairly common to sulfite reactions, as is joint pain. Some sulfite allergic folks I know report vision problems.

The two processed foods you eat don't have any major corn or sulfite ingredients, it looks like:

The hot dogs don't contain any corn based ingredients, but the sulfites in hot dogsmight not track as well, because the many (although not all) of sulfite sensitive folks can have trouble with garlic and/or onions.

The Ocean Spray Cranapple juice labels I've seen lately list sugar rather than corn syrup, so that would track with not having corn, but the citric acid and vitamin C might be on the 'iffy' side for corn problems - it depends on whether they are corn contaminated. For sulfites, it would be the same potential ingredients that might not match up.

Oh, I suppose it depends on where you are, too! :-)

In the USA, both organic and conventional bananas are gassed with ethylene gas. This penetrates the peel and into the flesh, so it can't be washed off. The production of this gas seems to make it problematic for those with corn and/or sulfite issues.

A good forum for checking out corn issues is this one: Open Original Shared Link

A blogger who has a ton of information on sulfite issues is this one: Open Original Shared Link

A couple things that would be major problems for the sulfites would be wine and molasses.

The main thing that would be an issue for corn sensitive folks would be, well, corn, yeah? ;-)

Don't know if this would jive with the food you have trouble with or not, but thought it might be worth checking out.

Much sympathy from over here. About 2 years ago I was in the same place, eating about 6 foods, if you include my sea salt, and unable to figure out why it seemed like freaking everything made me react. Mine turned out to be super sensitivity to gluten, food allergies, and a reaction to sulfites. It took me about 3 years to figure it all out, but it keeps getting better now. :-)

[anti-soprano]

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.

Have you considered yeast overgrowth, especially with the reaction you had to starch in the potatoes and sugar in the bananas? I came across this blog when I was first researching Celiac a few weeks ago. I hope it proves helpful to you!

Open Original Shared Link

Best of luck!!!

[Free-form07]

You may look into fungal candida. You will usually find fungal candida present with celiac disease, esp if you have ever taken an antibiotic in your life.

I suffered a full year, gluten free, not knowing why eating fruit, etc was causing brain fog, etc. Fungal candida feeds off of sugars and spreads. When the yeast eat the carbs we consume, we become more malnourished and they simply multiply. There waste is actually alcohol, which contributes to the feeling of brain fog or even being drunk. Fungal candida also is responsible for joint pains, etc. Candida and celiac disease symptoms are so similar, it's easy to get confused.

[New Community Member]

Have you tried looking into other 'diets'? I started the specific carbohydrate diet 6 days ago and I have noticed major changes, already. From 5 or 6 BM's a day to 1 or 2. Basically, you introduce one different type of food every 3-4 days to see what your GI system can or cannot tolerate. The SCDiet allows you to slowly introduce foods, thereby allowing your digestive system to rest so it's not working so hard digesting.

Bananas area really sweet. That could be causing the reaction. I don't react well to them, either.

Anyways, that's my two cents. You've got a lot of opinions of what it could be on here based on others' experiences. Hope you figure out what works for you soon.

[RonSchon]

Just an update....

Another thing from the short food list is now on the long list of things I can't have...

Ocean Spray (as well as every store knockoff brand) CranApple switched from HFCS to Cane Sugar.

I was totally getting reactions from Hansens All Natural Cane Soda, and thought it must be the natural flavors or caramel coloring.

I've drank Ocean Spray with no problem for 25 years, the change to Cane Sugar was just recently and that an immediate poison to me.

After the Ocean Spray got me, and I saw the cane sugar on the ingredient list I searched on cane sugar intolerance and found a plethora of sites discussing this. Evidently cane sugar is very similar to wheat.

Slowly I'm getting a good definition of all of the things besides gluten that affect me.

I checked the website "LabelWatch" for Ocean Spray and they still listed them all as HFCS, when in fact they are all now Cane. I sent them an email about the change but they never responded.