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Thanks for your reply!
Since this "issue" has been going on so long i am gradually just eating stuff. i am stubborn about the cream in my morning coffee, but have made several realizations.
1. ICE CREAM makes me fall asleep. The Breyers All Natural Vanilla Kind, i don't venture far from it, but I'm out like 30 minutes later.
2. This is an Either-OR. Either Paprika OR Beef is problematic.
3. Almond Thins (Sea Salt) Are bothersome in an itchy-mouth kinda way.
4. Potatoes(?) When I wasn't eating potatoes I wasn't experiencing the burning mouth and face feeling, but i ate some potato chips yesterday, and BAM its back.
So, where I am now is:
Celiac- NO GLUTEN
Corn allergy(?) Fritos make me itch.
Potential Lactose intolerance
Sulphite Sensitivity (slight?)
Problems with tree nuts? or just almonds?
and Possible night shade issues.
Someone let me know if they think I'm just missing the mark completely! Because I kinda think I might be. Is this what MCAS is? I read a blog by "The Patient Celiac" (google it) and she says that NSAIDS (aleve***** see my original post) can bring on MCAS. It would certainly be an explanation as to why my body is so out of whack.
I even broke out in hives on one arm this weekend after petting a horse.
surely i can't be allergic to EVERYTHING!~
hey shendler---- thanks for posting! i've been tested for latex allergies….. its negative. I'm not IGE allergic to tomatoes or bananas. i had a big hive for green pepper, a 1/4 for potato and avocado….
i've been able to determine that i am slightly sensitive to sulfites, but that doesn't seem like its my main issue. still feel horrible, and am reacting to basically everything. i thought i had turkey on my good list, but i reacted to that the other day too.
i definitely react to:
dark chocolate- not ige
potatoes 1/4 on scratch test
corn*4/4 on scratch test
bananas*- not ige ( wondering if my current reaction is OAS to Ragweed since i have seasonal ragweed and other allergies)
pears*- not ige
i think i react to rice (1/4) too.
** mouth itching. with the dark chocolate and potatoes its more of a whole body misery MY FEET HURT SO BAD-?!?!. i decided to try some enjoy life crunchy chocolate chip cookies. and it was a really bad choice. my head is throbbing.
part of my problem is that i am also a hypochondriac. so i think i have everything i read about. and i jump from theory to theory too quickly. but i am thinking of investigating either phenols or oxalates next.
this food allergy stuff is a special kind of misery….. been at it since june and still haven't gotten far, other than ruling out anything that would show up on a standard blood test, i guess. the drs don't seem to have much to offer, so it looks like I'm going this one alone (well, with you guys too). i am having a scope to check for eosinophilic esoph. in november. they will also biopsy small intestine.
ok, lets fast forward a few days. i think sulfites are part of my problem , but not sure they are the main issue. i feel wheezy when i eat potato chips (kettle) and unless I'm allergic to potatoes themselves, or something else in the potatoes, this is perhaps a sign. i tried 1 glass of white wine and was able to drink it but didn't feel great afterwards. i also tried 4 dried pears 1 morning and felt a little wheezy, but nothing over the top. the potatoes were by far the worst. i have had pork several times though, and there does not seem to be a strong reaction from pork ingestion, so i am wondering if I'm completely missing something. hmmmm. i've read often salicylates and sulfites go hand in hand. wondering if that is another part of my equation. thanks again for the tip, green beanie. still inconclusive but I'm leaning toward "yes," at least mildly problematic.
That's crazy that you were able to heal! And awesome! I am in such a whirlwind of confusion right now that I don't even know which direction to go in . Since I don't know which foods I'm allergic to, I guess that us what I'm trying to figure out first. I have a long list of potential allergens, but have been avoiding for 2 weeks and my throat is still sore - some mouth itching when eating, mostly fruit. Not eating grains dairy eggs soy and so many others right now so it's hard for me to tell if these would make my mouth itch also. I have been 2 weeks without most of my potentiL allergens so I think I may start adding them back in and see how it goes- 1 at a time.
Did you have any throat issues with your allergies, throat and mouth issues are my only allergy symptoms (left?). I'm really thinking I have eoe.
I will keep your suggestions in mind as I think they may prove very helpful in a little while when I can pinpoint the cause, or when I give up trying.
Did you have any of these throat/mouth/acid symptoms with your allergies? With the eoe - it runs in my family and I feel pretty sure that is part of my problem....
Thanks so much for taking the time to post and try to help me! I appreciate everyone who is putting in their advice and experiences. I really hope these vitamins etc would help.
My potato experiment wasn't exactly conclusive, as, I had pork with dinner last night. I will redo the potato experiment on a different night without pork.
I have get terrible all day, although i have avoided all of the allergies on my list 100%. This morning i made corn-free( hard to find) bacon, and had motte applesauce. My throat itched with the applesauce but then got sore with the bacon. It remained sore the rest of the day. When I had strawberries at lunch my throat seemed worse too. Idk why other than they are a high histamine food. I will try ground turkey as the only meat for the rest of the week and get rid of pork for a while, in case the sulphites in pork cause issues. Once the two weeks is up I will re-evaluate. I think I will try to stick with blueberries too , since i reacted to applesauce and strawberries today.
I've been drinking the whole foods bottled water, anyone know about the sulfite content of that??
I'm hoping nothing, but i think i head somewhere that bottled water can contain sulfites.
ps. i don't want you to think I'm careless about the food allergies. i just don't see how any progress can be made without a little experimentation. My new allergist, (the best one around here) said he thinks I'm at low risk for anaphylaxis because nearly all of my symptoms are oral. I have not had an anaphylactic episode, knock on wood, and the closest i came was when i took the Aleve and had the reaction that started all of this nonsense. I have had some random skin itching. There are no visible marks on my skin as far as I can tell though- just the random itching. It was really bad the night I ate the potato chips…..
i do have an Auvi-Q (epipen) , prescribed my the first allergist who had me convinced that i could react to any airborne particle at any minute. i keep that on hand, just in case, and i pray that i don't have to use it.
after i figure out what in the world is going on, i am going to try to do the pale autoimmune protocol and see if i can get my gut to heal. i will be way more strict about gluten (i already am, since these issues came up).
Thanks for the link!
I was able to look through it all this morning.
I am having plain coffee (something from archer farms-target) and i can feel some tightening in my throat. thats pretty typical for me, and I'm not sure if its the coffee itself, the corn that ultimately gets put on the coffee in the manufacturing process, or some sort of chemical in the coffee, that I'm reacting to.
Since I saw your post, i decided to try the Stretch Island fruit leather strawberry strips. The only potential allergen in them for me was lemon juice concentrate, which came back level 1/4 on my scratch test. Curiosity got the best of me, and i figured i would do it anyways. I figured something like this might contain some sulfites. the ingredients were something like , apple puree concentrate, strawberry puree concentrate, pear puree concentrate, and lemon joule concentrate. My mouth itched, just a little, but pretty immediately.
I bought some potatoes at a farmers market locally yesterday. They are a level 1/4 potential allergy on my scratch test, but something like this should, in theory be free of sulfites. Since today is already a loss on my strict elimination diet, i may try to cook some of them this afternoon at home. If I tolerate them, I will further suspect a sulfite issue. Since I had trouble with bagged potato chips with only sea salt and safflower oil, then, tolerating regular potatoes may be a clue.
I will update as to how it goes. Thanks for cluing me in to the sulfites. I had read about them, but much of the literature focuses on asthma and wine, and since I don't have much asthma or drink much at all (maybe one time every quarter) I might not have never noticed this as a potential issue. You've actually got me wondering if my mom has a sulfite issue. She has EoE which she stubbornly refuses to treat, even though she knows she has it. 3 of her siblings also have it, and one of them is a doctor. I have watched her get up from the dinner table many times (while drinking wine) gagging….
i did a little research on it. had another reaction to chocolate tonight, that was supposed to be corn free. its lindt baking chocolate 70% or something like that. (chocolate did not show up on my scratch tests.) am thinking about histamine intolerance, specifically.
i don't want to deviate from my corn-free (and free of the 1000000000 other possible allergies) diet for the next two weeks,( to see if i get better), but, i do want to experiment with histamines to see if high- histamine foods set me off. Also want to experiment with sulfites.
I do have severe seasonal allergies, especially right now, but normally do not have trouble with asthma unless i am exercising or it is very very cold outside. from what i've read on sulfites, looks like asthma is a huge contributing factor. i'm not sure if my exercised induced asthma would necessarily count.
i am thinking there are probably some true allergies on the food allergy scratch test results, and also some negative ones. I would like to be able to find the true ones, and eliminate them, and see if i feel better. That being said, I kind of don't think that will be the end of the story. I did get results back on CBC, ANA and Metabolic Profile blood tests. All were normal. I have been eliminating 95% of the positive scratch test results for over a week now, and am still reacting. The couple things i had not completely eliminated, i have eliminated as of yesterday (salmon and potatoes- both scores of 1/4 on the scratch tests). the only other thing i have not completely eliminated from the scratch tests is the corn. i have really tried to though. I know that the turkey i eat is probably sometimes corn- fed, or, the packaging is made of corn derivatives. Also, i think the USDA requires the animals to be sprayed with some sort of corn-spray to prevent decay or something like that, so unless your in contact with a local organic farmer, it is very hard to get 100% corn free meat.
Im going to give the full elimination diet 2 weeks, and REALLY REALLY try hard not to get contaminated. If by the end of the two weeks I am still feeling crummy, I will believe that my issue is likely something else. Idea's on how to test out histamine sensitivity while adhering to the elimination diet would be helpful! That way I can still kind of gage any reactions to histamine. i've read that histamine intolerance can be caused by leaky gut. as can food allergies. which doesn't surprise me since i was foolishly flippant many times about cross-contamination^^^. I guess i figured if i didn't have GI symptoms my gut was in good health.
It really stinks, my birthday is this week and I would very much like a date night out away from my sweet 1 year old! I guess we will be cooking at home. Maybe I will have something figured out by next month and we can celebrate later….
In positive news, the strange neuropathic feelings I was having have decreased significantly since i have been starting the elimination diet. I think that means I've cut out something my body did not like. The worst bout of those feelings I had after eating McDonald's french fries… ( I know, not very gluten-free friendly, and not very friendly…period). I literally could not move my arms the right way and couldn't feel much of one of them. Not sure what part of those fries caused such a serious reaction. I guess it could be gluten ataxia or something like that, but to be honest, I'm not a well-behaved celiac and have had more gluten than that in numerous instances with out much trouble…I've never been super sensitive to cross-contamination issues, the way some are.
Thanks, everyone, for the suggestions. I am looking into each of them.
I have considered sulfites, but haven't seriously had time to figure out whether they could be causing issues. As you might have seen above, I am working through a pretty intense elimination diet. But, i don't seem to be getting any better. so, its a thought.
I too, (until the past few months) ate tons of gluten-free Bread (mostly Udi's) and gluten-free processed foods. Also ate lots of chocolate, and the occasional glass of wine.
Right now, I am pretty much only eating ground turkey and organic applesauce. Some pork too. My concentration is on avoiding the following foods primarily, for the next two weeks and to see about an improvement. My allergy symptoms now are basically just trouble with swallowing and a sore throat. I have not been diagnosed with EoE yet, but it runs in my family, and I anticipate a diagnosis when i see my gastroenterologist in October.
Scratch test level 4 foods-
Corn is the hardest to avoid for sure. I thought maybe my symptoms were persisting because i was not avoiding corn well enough. IN the past couple of days, i have had reactions to: Potato Chips with only sea salt, potatoes, and safflower oil. Also to Enjoy Life Coco Loco bars. (They have chocolate.)
Do you think it may be sulfites?
Would a sulfite allergy cause foods high in sulfites to show up on an IGE test? I tested negative for chocolate, etc.
Thanks for your help!
well. i guess the issue is i am having some sort of reaction in that my throat is constantly sore and that I'm having reflux. and treating the reflux with nexium didn't work -- its still there. apparently food allergies can cause reflux which is why they went ahead and tested me, except that, it brought back a long list of potential culprits. the dr did tell me that the chance of being allergic to foods based on the back scratch test is anywhere from 1-7 to 1-2. but there are 20 foods in the "4" category alone, meaning, the largest wheels on my back. there are an additional 44 that caused a "1" or "2" reaction. meaning less likely to be allergic to them, but still could be. The severity of any allergy is not read by these numbers, just the likelihood of being allergic.
The doctor told me to eliminate the set that i was most likely to be allergic to first- which was all of the "4"s. THats the first 20 foods. Because these didn't come back on the blood test which was done by the first dr- i was actually eating a lot of the foods including chicken, beef, peas, corn, etc. i actually do think i may be starting to feel better after just cutting these foods out for a day. the funny thing is, i was eating SO much of these foods, just a few months ago. It really makes me a believer in "leaky gut". It seems like the leaky gut likely caused by my celiac led for particles of the foods i ate a lot of to slip into my body. I think them my body started getting sensitized to these foods, and maybe started causing reaction with some of them.
Anyway, the detective work continues today. Nexium contains a corn filler, and i was taking that every day. The doctor told me to stop.
It makes me wonder if corn is one of the main issues, and if there would be a difference in sensitization between corn fed beef/chicken and 100% grass fed. Just some food for thought…. (HA)!
went through ski allergy testing. the results came back somewhat different than the blood test. i am starting a new elimination diet to see if i can find the allergen(s). I'm putting money on corn. Does anyone know if celiacs are more likely to have other food allergies to certain things specifically??
i am starting to consider leaky gut … i guess this is apparently the cause of histamine issues and ultimately most allergy issues. although my diet is already pretty severe i guess i will attempt to go on a leaky gut diet for a while just to see if my symptoms improve….(and take the allergy meds prescribed) UGH! I always thought "leaky gut" would present with gastro issues. but i guess it doesn't have to! I thought after i had a handle on celiac for 10 yrs that I would be done with all of this stuff( and wouldn't be susceptible to a leaky gut…))…HERE WE GO AGAIN!
I went to the allergist today and the confirmed I have horrible inhalant allergies too. They said that this could be causing the food allergies? I itch whenever i eat anything just about. doesn't matter what it is. I can only eat meat without itching. Anyways… got rx'd for singular, zyrtec otc, and an inhaler with a steroid in it. these should supposedly help my seasonal allergies calm down so that i can tolerate some of my lesser food allergies, maybe. These are all Ige-type allergies.
i feel sorry for everyone else who has this issue too. What the heck are we supposed to eat! I almost am starting to feel like I took "just being celiac" for granted. (heh).
I'm starting to look into leaky gut, as i have considered that i might have an issue with that for a while. Also looking into salicylate intolerance to see if that has anything to do with it. I will post if i find out anything useful. I was hoping someone would have figured out what causes this :(
Hello, I am new here and looking to see if any other celiac's have had a similar experience.
About 2 months ago after taking an Aleve, I had an allergic reaction where my mouth felt like it was on fire, I started itching, etc. I Took some benedryl and the issue somewhat subsided, however, I still have a sore throat and trouble swallowing. Have also developed neuro-type symptoms (tingling, pins and needles) in arms, legs, hands, and feet. Muscle pain is also bad and I feel weak as if i have the flu. i did have chest pain, but that has subsided.
I have been to my primary care physician 3 times, and after ensuring it wasn't a blod clot, she referred me to an ENT. The ENT stuck something down my throat where he could see that I had mild relfux, and which prompted him to test for food allergies. Up to this point I didn't have any food allergies, only gluten intolerance.
The allergy tests came back positive for about 20 different foods, including all of the grains I am used to eating as a celiac (corn, soy, rice,) and the celiac grains came back positive too (bakers yeast, wheat, rye,barley, oats). Also, lots of nuts, fruits and vegetables came back positive (hazelnuts, peanuts, almonds, carrots, celery, onions, garlic, apples, peaches, bananas, kiwi, pineapple, white potatoes, etc.
The doctor was surprised that so many things came back positive, and is having me do skin-prick testing for inhalant allergies soon because he believes that often there is an underlying allergy that causes multiple other issues. I have remained gluten-free, so I'm not sure that celiac would be causing all of this. I have been celiac for 10 years and have never experienced anything like this.
I am starting to think that there might be something else underlying that could be causing all of this as well. I am frustrated because my diet is so severely limited at this point, and because I feel like I am reacting to foods not on my allergy list, and am not getting any better despite removing those foods.
Any thoughts and ideas are appreciated.!