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This Is Extremely Bizarre.. Any Ideas? Help!


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#1 Waitingindreams

 
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Posted 16 July 2014 - 11:03 AM

Okay so...about a month or so ago, I was on a very strict candida regimen. I avoided sugar, dairy, yeast, fruit, etc...and I was taking digestive enzymes, a probiotic, and antifungal pills. I dealt with the normal die off symptoms (pain in left side, fatigue, nausea, etc etc) but I also noticed that my food allergies were getting worse...foods that I didn't normally react to (but that i tested slightly positive for allergies) were suddenly making me react. (By this I mean itchy, tight throat) I assumed it was due to the candida dying off...I had read that it could exacerbate existing food allergies.

 

Well, one morning...I had paleo coconut bread with coconut oil spread on top. (I used coconut oil instead of butter because it's an antifungal, it's a healthy fat, etc etc...and I did this all the time. I was taking a tablespoon of it every morning) and all of a sudden my mouth started burning. And I don't mean burning like when you put food in your mouth that was just cooked in the oven...or even burning like you just ate a spicy pepper. It burned like I had acid in my mouth. I spit the food out into a napkin, very startled - and after a few moments went to go brush my teeth. The roof of my mouth, as well as the surrounding area by my tongue (but not my tongue) was raw and sore. All I could taste was blood. I went to work as normal, my mouth was sore but not itchy or tingly...but it hurt to even drink water. Concerned, I called my doctor and left him a message. I got a call back about 30 minutes later, asking me to come into his office. When he checked my mouth, he told me it was all cut up inside. What?! So he gave me this homeopathic phosphorous mixture to mix in my water and swish around in my mouth (it worked, I felt better immediately and by the end of the next day it was pretty much 100% better)

 

He isn't sure what caused this reaction. He advised me to stay away from coconut, which I have been. Before this, I ate coconut wraps, coconut oil, coconut macaroons, coconut yogurt, coconut ice cream, and drank coconut milk/water with no adverse reactions. Does anyone have ANY idea what would cause such a bizarre reaction? I've had allergic reactions to food before and that was nothing like I've ever experienced...

 

Note: Here are all of the ingredients in the bread:

 

Purified Water, Organic Coconut Flour, Egg Whites, Psyllium Seed Powder, Organic Apple Cider Vinegar, Potassium Bi-Carbonate (Potassium), Salt.


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Diagnosed via blood test: July 2013

Digestive Issues: Lactose Intolerance, Candidiasis, recurring hiatal hernia, possible SIBO

Skin Issues: Rosacea, Seborrheic Dermatitis, Tinea Versicolor

Sleeping Issues: Idiopathic Central Nervous System Hypersomnia, Sleep Paralysis

Allergies: Severe Seasonal allergies,histamine intolerance (under control) sulpha drugs, Oral Allergy Syndrome

Other: TMJ, Gallstones, Orthostatic Hypotension, Dysmennorhea, possible Adrenal Fatigue

Gluten Free - 07/13, Soy Free 05/14, Legume Free 05/14, Dairy Free 09/14, Grain Free 10/14

"I am in control of my own health" - working on crossing everything off this list.

 


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#2 greenbeanie

 
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Posted 16 July 2014 - 11:34 AM

Are you allergic to sulfites? I see from your singature that you're allergic to sulfa drugs, and though sulfites aren't quite the same, some people have trouble with both. I know that dried coconut and many coconut flours are sulfited, and my understanding is that sulfites don't have to be listed in the ingredients list if they're part of how an individual ingredient is processed rather than added as an actual ingredient (in the U.S., at least). I'm not sure if the regulations are different for organic ingredients.

My tongue swelled up and got incredibly inflamed and painful for months after my gluten challenge, until I finally figured out it was sulfites. It hurt when I ate anything, but especially anything fermented (like vinegar) or anything with potato starch flour (sulfited in processing to prevent browning, which you can't tell from labels). I wasn't eating anything at all with preservatives at the time, thank goodness, or the reaction might have been even more severe. In retrospect I'm pretty sure I had the sulfite problem for a very long time, but it didn't become clear until after I'd eliminated gluten and my digestion was calming down more. Figuring this our explained many long-standing mysteries, like why I often got sick from mashed potatoes at restaurants but not when homemade, and why I reacted badly to anything with lemon juice from concentrate but was fine with fresh lemon juice.
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Me: Diagnosis still unclear after extensive testing: Atypical wheat allergy, severe NCGI, or false negative celiac tests? Doctors disagree.Gluten challenge caused acute gastritis, esophagitis, and angioedema that lasted 4 months and was eventually determined to be a sulfite allergy. Gluten light for 15 years, then gluten free since June 2013.
Long history of eczema, chronic diarrhea, steatorrhea, ataxia, peripheral neuropathy, infertility, chronic insomnia, low cholesterol, vitamin deficiencies, and joint pain. Improved greatly within six months of going gluten-free.


#3 Waitingindreams

 
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Posted 16 July 2014 - 11:43 AM

Hmm! That is definitely an idea. To my knowledge, no I am not allergic to sulfites. I did some quick searching and I saw the list of foods that contain/may contain sulfites and I don't react to any of them. For example, I've never had a problem with cooked potatoes (in any form, fries, mashed potatoes, etc) - but if I peel raw potatoes, my hands will get all itchy and red. The list I found also says to watch out for canned fruits/vegetables but I normally just buy frozen and steam them in the microwave...so I'm not sure if I react to them or not. I can't have fresh fruits/veggies (for the most part) due to the oral allergy syndrome...and canned fruits/veggies were against the rules on most of the diets I was trying to follow (SCD, candida diet) so I didn't even bother. 

 

I have noticed an issue with vinegar: it makes my rosacea flare up, but I think that's due to the yeast. I think apple cider vinegar is the exception to this rule, but I don't (normally) ingest it...if anything I just apply it topically. I've tried it in salads before because I read it was a good antifungal, but i didn't really like the taste. 

 

Thank you for offering some insight! I don't think it's a sulfite allergy, but I will definitely keep that in mind. 


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Diagnosed via blood test: July 2013

Digestive Issues: Lactose Intolerance, Candidiasis, recurring hiatal hernia, possible SIBO

Skin Issues: Rosacea, Seborrheic Dermatitis, Tinea Versicolor

Sleeping Issues: Idiopathic Central Nervous System Hypersomnia, Sleep Paralysis

Allergies: Severe Seasonal allergies,histamine intolerance (under control) sulpha drugs, Oral Allergy Syndrome

Other: TMJ, Gallstones, Orthostatic Hypotension, Dysmennorhea, possible Adrenal Fatigue

Gluten Free - 07/13, Soy Free 05/14, Legume Free 05/14, Dairy Free 09/14, Grain Free 10/14

"I am in control of my own health" - working on crossing everything off this list.

 


#4 cyclinglady

 
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Posted 16 July 2014 - 12:40 PM

Too much coconut! Moderation is key. Perhaps you should loosely rotate your foods? It might help prevent allergies or intolerances from developing. I offer no scientific evidence though....

BTW, I have a coconut intolerance.....used to be able eat coconut, but developed an intolerance after buying coconut milk and consuming it everyday. Now I avoid it completely.
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#5 Waitingindreams

 
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Posted 17 July 2014 - 09:09 AM

Hm...I mean, I admit I did eat the coconut oil every day to help with fighting the candida, but I didn't eat anything else with coconut every day! I can completely see how eating a lot of a certain kind of food could make you develop an intolerance (I've read enough about it, ugh!) but even so, isn't that a strange reaction? I had no GI symptoms, not the normal tickle in my throat either, just...my mouth literally burned and got all cut up. Do you think it's because of the antifungal properties, maybe the candida was basically fighting back? I'm also wondering if I have a histamine intolerance, but from what I've read on it I don't see anything related to coconut. Ugh!


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Diagnosed via blood test: July 2013

Digestive Issues: Lactose Intolerance, Candidiasis, recurring hiatal hernia, possible SIBO

Skin Issues: Rosacea, Seborrheic Dermatitis, Tinea Versicolor

Sleeping Issues: Idiopathic Central Nervous System Hypersomnia, Sleep Paralysis

Allergies: Severe Seasonal allergies,histamine intolerance (under control) sulpha drugs, Oral Allergy Syndrome

Other: TMJ, Gallstones, Orthostatic Hypotension, Dysmennorhea, possible Adrenal Fatigue

Gluten Free - 07/13, Soy Free 05/14, Legume Free 05/14, Dairy Free 09/14, Grain Free 10/14

"I am in control of my own health" - working on crossing everything off this list.

 


#6 dilettantesteph

 
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Posted 18 July 2014 - 06:01 AM

What kind of doctor are you seeing?  Did a MD give you homeopathic treatment?  Homeopathy is the theory that water mixed with something and then diluted so much that there can be none left retains the essence of the thing.  There is no science behind it.  I'm very surprised that a doctor would give that to you.  http://en.wikipedia....wiki/Homeopathy

 

Was he perhaps just humoring you and not taking your concerns seriously?  You should perhaps see someone who will help you. 


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#7 Waitingindreams

 
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Posted 18 July 2014 - 07:55 AM

I see an MD, along with a naturopath. (separate practices) I started seeing the naturopath earlier this year at the recommendation of a close friend, who has been seeing him for years. Since seeing him, I have improved tremendously...I've discovered more food intolerances and I feel a lot healthier in general. For example, I had some GERD issues..my primary care physician (MD) prescribed me prilosec. It made me worse...GAVE me heartburn and stomach aches. We switched to pepcid - same thing. The naturopath discovered my GERD symptoms were caused by a hiatal hernia. My MD gives me OTC medications for stomach issues...(For example: Gas-X for bloating, which actually made my bloating/gas MUCH, much worse..it was awful) whereas the naturopath gives me supplements and digestive enzymes to try. My doctor also pushed me to take a drug called Nuvigil for my hypersomnia...a very expensive, strong drug that is given to people with narcolepsy..and I'd have to be on it every day for the rest of my life. My naturopath is helping me regulate my minerals/vitamins...and in doing so my energy levels have improved tremendously.

 

No, he was actually very concerned! I got a call within 20 minutes asking me to come to his office immediately, I had to rush out of work. He listened to my concerns, asked a bunch of questions, and then gave me the mixture. It was some kind of phosphorous solution...that is apparently used to help ease bleeding gums, etc etc. Whatever it was, it worked almost immediately. I had a sore, raw mouth...tasted blood, and literally had all cuts in my mouth...and by the end of the next day I felt loads better...so there definitely was no placebo effect either. I'm sure it was diluted, but it definitely didn't taste like it was watered down that much, blech. Lol. He did help me though! I haven't had a recurrence of this issue, thankfully. He had no choice but to take me seriously, he could actually see what I was dealing with.

 

I know there is a huge stigma about natural medicine vs. standard medicine...but I am living proof that natural medicine can and does work sometimes. I would definitely never tell anyone to drop their MD in favor of natural medicine - which is why I see both- but I think (providing your insurance covers it - which mine does, at least for this specific office) that it is worth looking into. Personally, I would much rather be put on supplements, vitamins, and enzymes than expensive drugs, if I can help it...but I can understand why people think it's weird or non effective. All I know is I've felt a lot better since switching to more natural treatment methods. I also verify everything he gives me before I take it by researching it and reading reviews, and everything he's given me has a high satisfaction rating. 


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Diagnosed via blood test: July 2013

Digestive Issues: Lactose Intolerance, Candidiasis, recurring hiatal hernia, possible SIBO

Skin Issues: Rosacea, Seborrheic Dermatitis, Tinea Versicolor

Sleeping Issues: Idiopathic Central Nervous System Hypersomnia, Sleep Paralysis

Allergies: Severe Seasonal allergies,histamine intolerance (under control) sulpha drugs, Oral Allergy Syndrome

Other: TMJ, Gallstones, Orthostatic Hypotension, Dysmennorhea, possible Adrenal Fatigue

Gluten Free - 07/13, Soy Free 05/14, Legume Free 05/14, Dairy Free 09/14, Grain Free 10/14

"I am in control of my own health" - working on crossing everything off this list.

 


#8 dilettantesteph

 
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Posted 19 July 2014 - 06:09 AM

I wasn't referring to natural medicine. Just homeopathy.


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#9 Waitingindreams

 
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Posted 19 July 2014 - 11:45 AM

I didn't mean that just to you, I was just talking from my own experience. I have seen a lot of people against natural medicine. I don't know all that much about homeopathy in general...I just know that the mixture he gave me worked, thankfully. I still think it was a very strange reaction though, even if it was due to a coconut intolerance. I don't know if I'l ever find an answer. 


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Diagnosed via blood test: July 2013

Digestive Issues: Lactose Intolerance, Candidiasis, recurring hiatal hernia, possible SIBO

Skin Issues: Rosacea, Seborrheic Dermatitis, Tinea Versicolor

Sleeping Issues: Idiopathic Central Nervous System Hypersomnia, Sleep Paralysis

Allergies: Severe Seasonal allergies,histamine intolerance (under control) sulpha drugs, Oral Allergy Syndrome

Other: TMJ, Gallstones, Orthostatic Hypotension, Dysmennorhea, possible Adrenal Fatigue

Gluten Free - 07/13, Soy Free 05/14, Legume Free 05/14, Dairy Free 09/14, Grain Free 10/14

"I am in control of my own health" - working on crossing everything off this list.

 


#10 dilettantesteph

 
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Posted 20 July 2014 - 06:21 AM

No worries.  As a chemist it drives me crazy that someone would think that something would work which is diluted so much that they can't be more than one molecule of active ingredient left, if that.  I can't help myself from speaking up.  Sometimes things are labelled and called homeopathy that aren't based on that rediculous principle though.  I'm glad you feel better.


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#11 Waitingindreams

 
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Posted 20 July 2014 - 06:48 PM

Yeah, I agree with you there. That doesn't sound like something that would be efficient in healing any ailments. Maybe by "homeopathic remedy" he just meant it was a natural solution? Usually I do research everything I take from them (enzymes, Concentrace trace minerals, etc) But this time he literally gave it to me in a little dixie cup to see if it would help, and then sent some home with me in a little dropper. It did work but it was pretty gross, it definitely gave my water a chalky taste and, after sipping on it all day, I felt slightly nauseated...but it did what it was supposed to do.

 

Thank you! Jeeze, I really was so happy when I found out I had celiac disease. I thought that once I gave up gluten, all of my issues would be over. Not even remotely true :| I'll keep trying though!


  • 0

Diagnosed via blood test: July 2013

Digestive Issues: Lactose Intolerance, Candidiasis, recurring hiatal hernia, possible SIBO

Skin Issues: Rosacea, Seborrheic Dermatitis, Tinea Versicolor

Sleeping Issues: Idiopathic Central Nervous System Hypersomnia, Sleep Paralysis

Allergies: Severe Seasonal allergies,histamine intolerance (under control) sulpha drugs, Oral Allergy Syndrome

Other: TMJ, Gallstones, Orthostatic Hypotension, Dysmennorhea, possible Adrenal Fatigue

Gluten Free - 07/13, Soy Free 05/14, Legume Free 05/14, Dairy Free 09/14, Grain Free 10/14

"I am in control of my own health" - working on crossing everything off this list.

 


#12 dilettantesteph

 
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Posted 21 July 2014 - 05:53 AM

It took me awhile to get it figured out.  Be patient with yourself. 


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#13 rrmac

 
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Posted 10 August 2014 - 12:24 PM

Okay so...about a month or so ago, I was on a very strict candida regimen. I avoided sugar, dairy, yeast, fruit, etc...and I was taking digestive enzymes, a probiotic, and antifungal pills. I dealt with the normal die off symptoms (pain in left side, fatigue, nausea, etc etc) but I also noticed that my food allergies were getting worse...foods that I didn't normally react to (but that i tested slightly positive for allergies) were suddenly making me react. (By this I mean itchy, tight throat) I assumed it was due to the candida dying off...I had read that it could exacerbate existing food allergies.

 

Well, one morning...I had paleo coconut bread with coconut oil spread on top. (I used coconut oil instead of butter because it's an antifungal, it's a healthy fat, etc etc...and I did this all the time. I was taking a tablespoon of it every morning) and all of a sudden my mouth started burning. And I don't mean burning like when you put food in your mouth that was just cooked in the oven...or even burning like you just ate a spicy pepper. It burned like I had acid in my mouth. I spit the food out into a napkin, very startled - and after a few moments went to go brush my teeth. The roof of my mouth, as well as the surrounding area by my tongue (but not my tongue) was raw and sore. All I could taste was blood. I went to work as normal, my mouth was sore but not itchy or tingly...but it hurt to even drink water. Concerned, I called my doctor and left him a message. I got a call back about 30 minutes later, asking me to come into his office. When he checked my mouth, he told me it was all cut up inside. What?! So he gave me this homeopathic phosphorous mixture to mix in my water and swish around in my mouth (it worked, I felt better immediately and by the end of the next day it was pretty much 100% better)

 

He isn't sure what caused this reaction. He advised me to stay away from coconut, which I have been. Before this, I ate coconut wraps, coconut oil, coconut macaroons, coconut yogurt, coconut ice cream, and drank coconut milk/water with no adverse reactions. Does anyone have ANY idea what would cause such a bizarre reaction? I've had allergic reactions to food before and that was nothing like I've ever experienced...

 

Note: Here are all of the ingredients in the bread:

 

Purified Water, Organic Coconut Flour, Egg Whites, Psyllium Seed Powder, Organic Apple Cider Vinegar, Potassium Bi-Carbonate (Potassium), Salt.

HI I see you have OAS so you are aware of cross reactivity with pollen and foods but its not always just the itch I get sever stomach pains and gastritis, mouth sores ect… when I eat certain food at times when different pollens are about. I am newly diagnosed with Celiac but I've dealing with it for years with symptoms waxing and waning as I tried different diets to help my symptoms and one thing I've realized looking back is that as my digestion healed and by proxy my immune system became stronger my reactions happened faster and stronger.

Good Luck Diane


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#14 icelandgirl

 
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Posted 10 August 2014 - 12:59 PM

HI I see you have OAS so you are aware of cross reactivity with pollen and foods but its not always just the itch I get sever stomach pains and gastritis, mouth sores ect… when I eat certain food at times when different pollens are about. I am newly diagnosed with Celiac but I've dealing with it for years with symptoms waxing and waning as I tried different diets to help my symptoms and one thing I've realized looking back is that as my digestion healed and by proxy my immune system became stronger my reactions happened faster and stronger.
Good Luck Diane

Hi Diane...I just wanted to see if you could share more on the OAS. I was just with my allergist this week talking about my allergy shots. I have allergies to just about every everything it seems. We did talk about OAS but not about it causing GI effects. Can you tell me what foods cause this for you? Thanks
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#15 rrmac

 
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Posted 10 August 2014 - 01:35 PM

Hi Diane...I just wanted to see if you could share more on the OAS. I was just with my allergist this week talking about my allergy shots. I have allergies to just about every everything it seems. We did talk about OAS but not about it causing GI effects. Can you tell me what foods cause this for you? Thanks

Sure Like I said I am new to Celiac and am hoping to figure this out but I cannot eat nuts when the trees are blooming I get systemic itching, digestive issues mouth sores, face swelling ect… I cannot eat melons during ragweed season and I think I cannot have sunflower seeds or oil during ragweed as I can eat popcorn but corn chips with sunflower seed oil caused sever gastro bloating and pain. 

I am only a few months diagnosed but have done the SCD diet in the past and learned a lot from that before knowing I was celiac.

Oh and celery and chamomile tea are a no go during ragweed all of these give me major gastro attacks and if I continue to eat them it gets worse with skin reactions and facial swelling and heart palps, PPI's always makes it worse but I have found that Allegra will often relieve the stomach pain where most antacids do nothing.

If you google allergy cross reactions you can get a list of POSSIBLE cross reactions, just happened to mention to my allergist that I can eat melons some times an other times it have a reactions "bing" lightbulb moment. Cooking reduces this reaction but not apparently for sunflowers my first symptom is usually reflux.

 

hope this helps Diane


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