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DJTonkovich

Newbie Seeking Similar Personal Experience?

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First off, I am so happy that I was referred to ths forum via my web search.   I'm newly damnned gluten & nightshade intolerant male 47 years of age whom has a very healthy lifestyle and have consumed nothing but organic, all natural.food & beverage for years now.

Unfortunately my road to discovering the reason for my persistent health conditions has been long (5 years long) and tiresome rendoring my life unmanageable untill recent months with no help from Western Medical practitioners whom loved cramming antibiotics down my throat as a cure all (3 rounds of Azithromiacin backed by Prednisone within a 3 year time span).

A year ago I was misdiagnosed by a nutritional therapiist for leaky gut, althouugh he was getting closer to the true culprit.  Within 6 months of marginal improvement due to dietary changes it was discovered that I was gluten intolerant.  No big deal.  Fine, no more wheat, rye, barley, yeast.  I do sadly miss my occassional pint of Guiness.  As for bakery products I can take em or leave em and thanks to Trader Joe's & Sprouts markets, going gluten-free is all too easy.  Still don't enjoy the occasional Hard Cider.  I drink Braggs infused with water at home and there's too much taste similarity to truly enjoy a pint of cider.

So I had a good handle on the gluten-free thing for months untill about 2 months ago I consumed a homemade plate of gluten-free penne pasta in a organic red sauce wiith sausage, peppers, onion, garlic, garnished with basil and chili pepper flakes.  Woke up the next morning to a swollen face that looked like a Rocky movie opponent.  WTH?!

Last week, I recreated this scenario thinking the prior was a fluke incident.  Monday had the homemade sausage pepper penne with mild side effects the following day.  The next night I cooked up heavily spiced grilled chicken tacos topped with organic diced jalepenos and tomatoes.  Holy hell!! Wenesday morning, full on bloated face with the full gammit of Flu like symtoms.

I have recently had to stop consuming, due to milder but simular reactions, Almonds (I have since cut out all nuts jus to be safe), and wildflower honey (my reaction to this one is best descibed described as deathly ill for 24 hours from adding it to my smoothies & green or black tea).  All the above were daily diet items in whole or home preppped form.

Now it's nightshades?!  No more tomatoes?!  Eh pasta sauce no big.  No more peppers?!  I am a huge foodie and former restaurantuer with a love for Thai, Creole, Mexican, and have cut out my former weekly fave due to gluten - sushi.

This is out of control!  I live in an area in San Diego with many awesome farm to table restaurants within walking distance.

So many questions.  I wonder:  What came first the chicken or the egg?  Was I GI before NS intolerant?  Did the annual barrage of antibiotics cause my current health issues?  By switching to organic tomatoes are they higher in lycopene (sp?) than non organic?  Should I be fearful of NS cross contamination alike my fear of Gluten contamination?  What's next?  There's just so much more and I am reaching out due to the fact that every single doctor/nurse assistant  that I have dealt with over the years hasn't a clue about Gluten Intolerance

Just reaching out for other's similar Gluten & nightshade intolerance experience.  This last purdging of the fridge and cupboards was a hard one for sure.  Good bye tomatoes chili peppers, hot sauces, bbq sauces, ketchup, salsas, civeches, red sauces, it's okay, just breathe.  Today I feel healthier than I have in 5 years although, at a cost for the love of great cuisine. 
 

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Who made this food? If it was a restauruant, then who knows wht was really in it. Before you completely eliminate these things, maybe try eating just some tomato sauce you make at home? Try the single ingredient and see if it bothers you. I would hate for you to eliminate so many foods because a restaurant forgot and made gluten-free pasta in gluteny pasta water, or something like that.


 

 

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Who made this food? If it was a restauruant, then who knows wht was really in it. Before you completely eliminate these things, maybe try eating just some tomato sauce you make at home? Try the single ingredient and see if it bothers you. I would hate for you to eliminate so many foods because a restaurant forgot and made gluten-free pasta in gluteny pasta water, or something like that.

Hello kareng and thanks for your reply.  Sad to say I made both dishes for myself for dinner before pinpointing through my own consumption awareness, research, and self diagnosis, as has been my whole venture into discovering that my diet has been making me sick over the past 5 years.  The pasta was gluten-free cert Brown Rice penne, and the corn tortillas were certified gluten-free organic corn, water, and lime juice. 

Nightshades was this week's finding.  Wildflower honey was the previous weeks finding and the week prior, almonds or to be safe nuts in general.  I have read that this would be 1 of the 2 courses of action, the other being having a food allergen blood panel test which will be discussed with my doctor during a follow up appointment on the 14th. 

Till then it's trial & error.  I did let one food item, organic mayonnaise, stay undetected in my fridge for a course of time before noticing on the label, in very small print mind you, processed on shared equipment with wheat.  That explains my mild gastro issues following mayo based homemade sauces.  Just alike many other life expereinces, everyday can be a new lesson learned. 

As for dining out I know that even if they claim to be focused on dietary requirements that you are always at risk of cross contamination.due to lack of proper storage, shared utensils, prep and cooking equipment, or general employee lack of training or concern.  I should know, I spent 12 years in restuarant management. 

Thanks again and be well kareng

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Hi DJ,

 

I feel your suffering. I'm newly on the wheat-free path myself, and in the process of working out what else to cut from my diet.

 

I agree with kareng, if you can try each of those foods individually you may find that some are still okay for you to eat. Some foods are also bad in combination, but okay separately. For example, a former housemate of mine had dairy issues if she ate dairy with tomatoes, because the acidity of the tomatoes aggrevated the minor dairy intolerance she had. It's extremely frustrating, I know. :/

 

Also, maybe look at the pasta? I cut out wheat just over a month ago, but this week I was almost incapacitated by eating brown rice every day. White rice is fine, but the brown seems to cause issues with me. I actually found this forum by seaching for other people who have issues with brown rice, as innocuous as it seems.

 

All I can say is I hope you find something that works for you. :)

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I agree with kareng -- go slow and try to eliminate things one at a time. No need to eliminate more than you have to!

 

Something else you might consider experimenting with is reducing high histamine foods. If you do a quick google search, you can find lots of info on this. In addition to celiac, I have a histamine intolerance. At first, I thought it was nightshades causing my additional problems, but it turned out to be histamines. 

 

PS: I'm really sorry for what you're going through. It's not easy at all -- especially when you have multiple food intolerances.

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Hi DJ,

 

I feel your suffering. I'm newly on the wheat-free path myself, and in the process of working out what else to cut from my diet.

 

I agree with kareng, if you can try each of those foods individually you may find that some are still okay for you to eat. Some foods are also bad in combination, but okay separately. For example, a former housemate of mine had dairy issues if she ate dairy with tomatoes, because the acidity of the tomatoes aggrevated the minor dairy intolerance she had. It's extremely frustrating, I know. :/

 

Also, maybe look at the pasta? I cut out wheat just over a month ago, but this week I was almost incapacitated by eating brown rice every day. White rice is fine, but the brown seems to cause issues with me. I actually found this forum by seaching for other people who have issues with brown rice, as innocuous as it seems.

 

All I can say is I hope you find something that works for you. :)

Morning Soraetal and thanks for your reply.  Sorry for the delay in response. 

I find your input regaurding dailry with tomatoes very interesting due to the fact that after my consumption of the sausage pepper penne, I had one of the worst full blown reactions experienced with feeling sick within hours and major facial swelling the morning after.  I make the sauce a pink sauce by adding organic lowfat milk till lightened.

 

As for the brown rice, I find that I have no reaction to this yet although have read that when going gluten-free, you need to be aware of the amount of Brown rice bakery items consumed on a daily basis due to concern of detectable traces of arsenic in brown rice used by food product manufactures.  The only brown rice bakery item that I am consuming at the moment, on a regular basis, is Trader Joe's Multi Grain gluten-free bread.  Don't seem to be reacting to it at all.

 

This week I am questioning Hummus.  A couple of weeks ago prior to the nightshade discovery, I had bought some spicy hummus that contained diced jalapenos.  Bad reaction.  Yesterday, I purchased traditional organic hummus and still felt pretty crappy last night.  This could be a new mystery although rather just cut that one out too.  I am so sick and tired of being sick and tired. 

 

At this point I really look forward to the allergen blood test panel so I can hopefully cut to the chase as apposed to quessing and eliminating dietary differences that are followed by bad reactions.

 

It would be so difficult for me, to cut the diet down to a bare minimum with the occasional adding an item to wait for a positive or negative outcome.  I have a neighbor whom has taken it to the extreme by cutting her diet down to nothing but chicken, brown rice, greens, and supplements.  She has stuck to this for years now.  That is definitly a nightmarish way to approach it and so not appealing at all.

 

Again thatnks for your input and be well

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I agree with kareng -- go slow and try to eliminate things one at a time. No need to eliminate more than you have to!

 

Something else you might consider experimenting with is reducing high histamine foods. If you do a quick google search, you can find lots of info on this. In addition to celiac, I have a histamine intolerance. At first, I thought it was nightshades causing my additional problems, but it turned out to be histamines. 

 

PS: I'm really sorry for what you're going through. It's not easy at all -- especially when you have multiple food intolerances.

Morning Across and thank you to for your advice.  I apprecate it for sure.

 

As for histamines for me highly doubtful in my case.  The top ten histamines except for the occassional sausage on flat bread pizza or as previously mentioned penne pasta and canned Skip Jack Tuna, are not in my diet (Champagne, Sauerkraut, Tofu, Paresan, BeerBlue Cheese, Red Wine, Eggplant). 

 

I noticed the the pins and needle effect within my mouth immediatly while consuming eggplant, so that was eliminated years ago.  Not to mention that eggplant is within the nightshade family in addition to several others not mentioned including tomatoes/tomato sauces.  Not to mention tha anti histamines have zero effect on my symptoms. 

 

Food Items that stimulate histimines that are a part of my regular diet that I have noticed zero reaction to: bananas, strawberries, shellfish, eggs, and chocolate.

 

Highly doubtful but hell, anything possible.  Look forward to the food allergen blood panel test.  Have to cut to the chase.  As previously mentioned sick & tired of being sick & tired.

 

Again thanks for your input & be well

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I have had similar reactions to many foods. I believe the doctor who diagnosed you with leaky gut was onto something. You may find the following articles fascinating.

 

"Leaky Gut: Can This Be Destroying Your Health?"

 

"Zonulin & Leaky Gut: A discovery that changed the way we view inflammation, autoimmune disease, and cancer."
 
I follow Dr. John Trowbridge's yeast-free diet (author of "The Yeast Syndrome"). It works for me. I'd be glad to email it as an attachment should it be of interest.
 
The following web site may also be of interest: www.pecanbread.com (helps understand digestive problems as described in a book called "Breakding the Vicious Cycle). It outlines a specific carbohydrate diet (SCD) consisting of monosaccharide foods that need no enzymatic digestion to enter the bloodstream (because celiacs are often deficient in other enzymes besides what digests gluten) vs. disaccharide & polysaccharide foods (sugars, starches) that need enzymatic action to enter the bloodstream. 
 
An interesting conundrum is which came first, yeast or celiac disease? The molecular structure of gluten & yeast (candida) are almost identical, and they cross-react. Gluten cross-reacts with other things as well. A web search will yield more info.
 
I don't take anyone's word about something being gluten-free. It's gluten-free when I decide it is. Beware of food items processed on shared equipment, for example. Ingredients can be gluten-free but contaminated in processing. I've been on a gluten-free for 26 years. I remember getting very sick on occasion when I first went gluten-free. It's hard to think it all through. I avoid dinnerware, glassware, and silverware that has been washed by hand (plates with metallic rings on the edges, stemware, sterling silver), for example - too many gluten molecules in too little water. One has to admire the body's ability to cope with a gluten onslaught for as long as it has before diagnosis. My experience is one of zero tolerance once I went on a gluten-free diet.
 
Although many can tolerate grain-derived alcohols, vinegars, and flavorings, the celiacs in my family cannot. Same with vegetable gums.
 
My daughter is a bar tender and put together some gluten-free cautions regarding same if you're interested.
 
Dianne Sharr

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Wow!  That is alot to take in Dianne & I appreciate your personal experience advice for sure.  The person whom was working with me that was closest to my health issue was actually not a doctor but an Oriental Nutritional Therapist. 

 

I was one of those whom was not eligible for health insurance until this year and I relied upon nurse practioners for 3 years prior to being referred to my ONT.  All the NP & doctor's assistants that I had been seen by prior to would run me through the typical blood tests which always resulted in "well according to our tests you are perfectly healthy" and send me packing with yet another prescript for Azithromiacin backed by Prednisone to fight the skin & sinus infections which would clear during the course of taking them but come back double fold after a couple of weeks time.

 

As for the leaky gut, it was a close diagnosis although the results of a couple sessions beyond LG diagnosis my issues definitly mirrored Gluten Intolerance.to the finest detail.

 

As for gluten-free adjustments within my diet was an easy transition for myself especailly with the quality certified gluten-free products that I find at my local Sprouts market and Trader Joe's and the results of my diet adjustments were pretty instantanious.  As for dining out yes, there were several instances where even though I had ordered off a gluten-free menu within a restaurant I quickly realized the seriousness of being aware of cross contamination.

 

Too top it all off the my recent nightshade diagnosis beyond the gluten-free was a personal lesson learned and a major restructure of my already restructured diet.  A lot of the gluten-free bakery products contained the now evil potato starch culprit.  Yet another purdging of the fridge and cupboards and yet even more concerns to be aware of when dinning out or grocery shopping for that matter.  As for dining out with this combo, I have not ventured there as of yet, and have come to terms that sushi, and a majority of my fave cuisines of creole, thai, and mexican are pretty much a thing of my past which I have come to terms with and the benefits of avoidance far out weigh the results of accidental cross contamination or misrepresentation.

 

I have been NS free for just over a week now and I can say that I ame feeling 100% as of today but with all the gluten-free related forums that I have visited has me bracing for what's going to rear it's ugly head next?  But today I am grateful for how I feel, 100% healthy for the first time in 5 years with absolutely no help from Western Medical practitioners. 

 

No offense but with my new insurance provider I met with for the first time my assigned, not the doctor that I selected, primary care physician.  She was of the stubborn self righteous sort.  Won't be seeing her again and will be contacting my HI provider to switch PCP.  It seems as if she was offended that my correct diagnosis came from an Oriental Nutritional Therapist and not a Western Medical practitioner.  Throughout our appointment yesterday she scoffed at my 5 year struggle experience story, my resulting diagnosis and the battle plan that I and my ONT came up with.  She sharply replied, "Nothing you have told me makes any sense".  "According to your blood tests you are in exceptional health."  Heard that one several times before and obviously she is not open to the fact that I can heal myself with a simple change in diet as apposed to cramming more meds down my throat.  I hae just about lost any respect for anyone that is a self righteous, close minded WMP.

 

Here's the kicker ...... I specifically set up my appointment with my new PCP yesterday to cut to the chase so I could avoid the process of elimination diet strategy by requesting allergen testing focused on food & beverage.  She quickly replied "there are no such tests".  She obviously thinks I am some delusional idiot.  Thanks for nothing and wastting my time.  Obviously we're not going to get along and she is not willing to work with me.  Eh.....no love but lots of potential respect lost

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Hi DJ, I can relate, as I am going through pretty much the same thing myself at the moment.
 
I went Gluten and  Dairy free last year, and I have felt fine for quite some time, and then recently  I began to notice problems with certain foods.  I kept a food diary, writing in it every day, noting down every single thing that passed by my lips.  To date I have found that I cannot tolerate Soy, Corn, Oats, Eggs, Coffee, Tea, Nuts, High Fructose Corn Syrup, many of which I have only recently discovered!  For example, I am now having to drink hot water with a tiny bit of raw honey since recently discovering I cannot take tea anymore, this did make me feel sad, I am English, and I was brought up drinking tea from an early age, my reaction to tea is bad, with strong rapid palpitations in my chest, and  a feeling of acute exhaustion.
 
 
I went on the SCD diet for a while, to enable me to pinpoint foods in a controlled manner, foods that were not working for me anymore.  What I found from this experience is that there are some fruits and vegetables that can be very difficult to digest (namely foods high in Salicylates) especially if you already have problems with your gut, and I also discovered that although you might be eating cleanly, how you cook your food is incredibly important, this was an eye opener for me, and I have had to learn to cook meat and vegetables in a different way, a way in which my body can  digest food better.  Unfortunately, I could not remain on the SCD diet,  it was tough going  not being able to eat Eggs, Dairy and Nuts, which are key for the SCD diet, and so I could not maintain weight on it, I think I lost about a stone in weight, that being said, I do think it is an excellent diet for some people, and I learned some valuable information,  I discovered digestive enzymes, which I now take with every meal, and they have made a big difference to me.
 
I have now come to the conclusion that my stomach is super sensitive, and that if I do not cook certain foods correctly, I will have problems, which normally means a  bloated stomach, acid reflux and just generally feeling tired and unwell (it feels almost like being glutened, but not quite as severe) and so every meal has to be cooked with care, sometimes I even mash up some vegetables before eating.. I think over time my stomach will heal, but I really need to be careful now as it is not simply a case of watching out for Gluten and Dairy, and food intolerances, but a case of watching what I cook, and how I cook it.

Diagnosed Ulcerative Colitis Feb 2014 (in remission)

Diagnosed Lichen Schlerosus May 2014

Diagnosed GERD Aug 2014  

Gluten free from Sept 2014

Dairy free from Dec 2014

Sulfite free from Sept 2015

 

 

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DJ.  With the food you said you reacted too, it was all very spicy.  Have you considered taking it easy on the peppers and such?  Also, have you been tested for Celiac or have you just settled on intolerance?  If you actually have celiac you are doing yourself no favors in eating the food that you mentioned.


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Your doctor is right about the food allergy testing to a certain extent. Here is some info about food allergies. This does not have anything to do with some other type of intolerance to a food.

http://www.webmd.com/allergies/guide/food-allergy-testing

I have seen quite a few people who are eliminating a food for some dubious reason or another - and not really have an issue with the food. I know this because I hear things like this a lot " I can't have wheat so now I make little cakes everyday with kamut (a type of wheat)". " I have a peanut allergy", said while munching on plain M & Ms ( very cc'd with peanut and not for people with true peanut allergies. " I can't have gluten so we have switched to Rye bread at our house and we feel better".


 

 

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