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Celiac/gluten Intolerant And Salicylate Sensitivity


Alison2

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Alison2 Newbie

Hi, I'm pretty new to the Forums, and something recently caught my eye -- the question of being celiac or gluten intolerant AND having a salicylate sensitivity. I've read some of the older posts, and I'd like to see if there are any current members who have these two issues.

I've been gluten-free for about two years, I think carefully, and although I felt better at first, I've been feeling pretty sick these past four months. I'm struggling with all foods causing reactions, except a small handful that are low sal. Both moderate and high sal foods cause problems (and maybe even some low sal?). I'm worried about getting the right nutrients on my limited diet, plus I'm completely bored by it.

My reactions include frequent migraine pain, constant fatigue, intermittent abdominal pain, bloating, brain sluggishness, joint pain, closed/sore/burning throat, itchy eyes and ears, swollen hands, ringing in my ears.

Do other people experience similar symptoms?

How do other people who have a sal sensitivity make sure that they are getting enough vitamins and minerals?

How do you get rid of symptoms when ALL fruits and vegetables have some level of salicylate in them?

Thanks in advance for sharing your experiences!

Alison


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IrishHeart Veteran

I have most of these symptoms too and am trying a no sal diet for 2 weeks.....I'll keep you posted.

It DOES limit the intake of a LOT of foods, so I am reluctant to do this for long.

I was using a TON of supplements, herbals, etc and I think that made it worse....

I am not sure if it is SA or just me--I am only gluten-free 2+ months, but since you have been gluten-free for so long, I am not sure....

YOLO was very helpful to me on here....perhaps she can help you?

cahill Collaborator

I am interested in finding out more about SA intolerance,

Obviously I am not going to be able to totally eliminate SA,, as you said it is in all fruits and veggies to some degree. I wonder if it a matter of finding what my daily limit / tolerance is??

The list of reactions you listed are very similar to mine,,, the "ringing in the ears " is what caught my attention most. I also have a white film on my tongue,,,I am still not sure wither that is due to Candidia or not (( seeing my doc this week))

IrishHeart Veteran

I am interested in finding out more about SA intolerance,

Obviously I am not going to be able to totally eliminate SA,, as you said it is in all fruits and veggies to some degree. I wonder if it a matter of finding what my daily limit / tolerance is??

Hold on you guys, I'm going to find the link to the site that I found helpful....be right back...

Got it!

Open Original Shared Link

IrishHeart Veteran

Chill,

I had a white film on my tongue too--and it BURNS...I do not have yeast (tested many times). the film is starting to disappear since I went gluten-free. I still have the burning mouth though.

Another member on here told me hers cleared up after a while being gluten-free and to hang in there. She did not mention having to eliminate SA foods.

I see you have been gluten-free for a while, though...hmm...it is puzzling.

I had awful head buzzing for a long time, but it is less now...

I cannot tolerate raw veggies. We tried juicing veggies and fruits for me--and it was like drinking battery acid.. and now, I am thinking I know why....SA content too high?? At the time, I was also taking a number of supplements--and they are HIGH in SA.

Aloe vera juice, peppermint tea, even pepto bismal?...which is supposed to calm the GI tract--??burned me like mad..so go figure.

Hope this helps. There are other such lists--just google away! :)

cahill Collaborator

Chill,

I had a white film on my tongue too--and it BURNS...I do not have yeast (tested many times). the film is starting to disappear since I went gluten-free. I still have the burning mouth though.

Another member on here told me hers cleared up after a while being gluten-free and to hang in there. She did not mention having to eliminate SA foods.

I see you have been gluten-free for a while, though...hmm...it is puzzling.

I had awful head buzzing for a long time, but it is less now...

I cannot tolerate raw veggies. We tried juicing veggies and fruits for me--and it was like drinking battery acid.. and now, I am thinking I know why....SA content too high?? At the time, I was also taking a number of supplements--and they are HIGH in SA.

Aloe vera juice, peppermint tea, even pepto bismal?...which is supposed to calm the GI tract--??burned me like mad..so go figure.

Hope this helps. There are other such lists--just google away! :)

I just recently developed the white film on my tongue, which is why I assumed it was Candidia ,,but now that I am reading more about SA and looking back over my food journals I am starting to wonder ,,, I will get tested for Candidia and in the meantime I will research SA intolerance

** I Did not eat very many fruits and I NEVER ate veggies before going gluten free,,, makes me wonder**

IrishHeart Veteran

here's another one...

Open Original Shared Link


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IrishHeart Veteran

This whole bizarreness makes me wonder...I have so many symptoms, I just cannot believe it sometimes...sigh

IrishHeart Veteran

Geesh, chill...I just looked at your sig....you have eliminated a LOT of food groups...what the heck is left for you, hon???

You must be down to meats/fish/vegs/fruits?.

(I see you are nut free--those are high in SA)

gosh, I thought I had a limited food selection!

cahill Collaborator

Geesh, chill...I just looked at your sig....you have eliminated a LOT of food groups...what the heck is left for you, hon???

You must be down to meats/fish/vegs/fruits?.

(I see you are nut free--those are high in SA)

gosh, I thought I had a limited food selection!

pretty much meats,fruits and veggies and a little rice now and then,, I am hoping to be able to add some / most of them back after my gut has healed .

IrishHeart Veteran

pretty much meats,fruits and veggies and a little rice now and then,, I am hoping to be able to add some / most of them back after my gut has healed .

Sounds like you're doing the "paleo diet" minus nuts plus rice, basically... :) good for you!

I wonder if I should be more strict. I tried that and felt extremely hungry and deprived. I do eat alternative grains and nuts, but then this possible SA thing arose...I have a "histamine" response going on and I am not sure what the heck is causing it.... I hope you figure out what's still giving you grief.

I am still playing detective, despite my food diary and an elimination diet last year....ah well, we press on!!

cahill Collaborator

Sounds like you're doing the "paleo diet" minus nuts plus rice, basically... :) good for you!

I wonder if I should be more strict. I tried that and felt extremely hungry and deprived. I do eat alternative grains and nuts, but then this possible SA thing arose...I have a "histamine" response going on and I am not sure what the heck is causing it.... I hope you figure out what's still giving you grief.

I am still playing detective, despite my food diary and an elimination diet last year....ah well, we press on!!

I also am still playing detective,, we do press on, at least we are not alone in this any more, we have people who understand. For me that makes all the difference in the world :)

IrishHeart Veteran

I also am still playing detective,, we do press on, at least we are not alone in this any more, we have people who understand. For me that makes all the difference in the world :)

Amen to that , chill! :D :D :D I would be lost without this forum. I have been googling my symptoms for two years and it always landed right here!!

Looking for answers Contributor

Recently I went to a GI who said if you are reacting to a lot of food you should be tested for SIBO (small intestinal bacteria overgrowth)...just another thing to read about and see if it may apply. Hope you find relief soon.

Tyson Holly MD Newbie

I had two small bowel aspirated while in the hospital. Both fine. It's an uneducated GI doctors go to diagnosis for celiac symptoms. The burning and white tongue are glossitis, which is well known in celiac. Make sure NOTHING is getting thru the diet. Maybe try allergy testing. It seems like you're still reacting. My tongue cleared up almost immediately and is one of my first clues when something slips through.

  • 2 weeks later...
color-me-confused Explorer

Hi, I'm pretty new to the Forums, and something recently caught my eye -- the question of being celiac or gluten intolerant AND having a salicylate sensitivity. I've read some of the older posts, and I'd like to see if there are any current members who have these two issues.

I went into anaphylaxis from exposure to wintergreen oil (methyl salicylate) 18 months ago. Looking back, I'm wondering if that when I started to have a lot of digestive upset issues...hard to say. I don't avoid salicylate foods but I do avoid aspirin, Pepto-Bismol, and Listerine.

gf-soph Apprentice

I also am still playing detective,, we do press on, at least we are not alone in this any more, we have people who understand. For me that makes all the difference in the world :)

I know how you feel - I am currently on low FODMAPs, low sals/amines, vegetarian, and not eating any grains. Thank god I can tolerate dairy and soy, or I would die. It's kinds of nuts how long this elimination diet is taking for me, but when I hit the good days I know it's worth it.

I'm yet to do enough food challenges to be sure about the salicylate sensitivity, as the sal challenge foods were almost all high in fructose, so i can't tell which one i reacted to. A big clue for me was that realised i was reacting to pears with bloating and itching, and they are the only very low sal fruit, but high in fructose.

Do you have the RPA booklet that lists the sal levels of foods, including fruits and veggies? It is hard, but there are low sal options out there, it is important to get enough nutrients or you will feel bad anyway.

Your salicylate tolerance can be dynamic over time. When you do the rpa elimination diet you cut down to a lower level, then do a challenge of lots of high sal foods to see if you provoke a reaction. If you do get one, you go back to the low diet until your symptoms clear, then introduce a small amount of sal foods and gradually increase the amount.

The expectation is that you will get some symptoms, you stay at that amount of sals for 2 weeks, but which time the symptoms should have decreased. If they do, you increase the amount slightly, and wait out another 2 weeks. Once you hit the point where your symptoms don't decrease, you drop down to the previous amount, and that's your tolerance.

Are you thoroughly controlling your non-dietary salicylate intake? When you are on the rpa strict phase you avoid all perfumes and chemical cleaning products, as this also contributes to your salicylate load.

  • 1 month later...
vesperfly Newbie

Hi, I'm pretty new to the Forums, and something recently caught my eye -- the question of being celiac or gluten intolerant AND having a salicylate sensitivity. I've read some of the older posts, and I'd like to see if there are any current members who have these two issues.

I've been gluten-free for about two years, I think carefully, and although I felt better at first, I've been feeling pretty sick these past four months. I'm struggling with all foods causing reactions, except a small handful that are low sal. Both moderate and high sal foods cause problems (and maybe even some low sal?). I'm worried about getting the right nutrients on my limited diet, plus I'm completely bored by it.

My reactions include frequent migraine pain, constant fatigue, intermittent abdominal pain, bloating, brain sluggishness, joint pain, closed/sore/burning throat, itchy eyes and ears, swollen hands, ringing in my ears.

Do other people experience similar symptoms?

How do other people who have a sal sensitivity make sure that they are getting enough vitamins and minerals?

How do you get rid of symptoms when ALL fruits and vegetables have some level of salicylate in them?

Thanks in advance for sharing your experiences!

Alison

Hi Alison,

I've experienced almost the same thing. I was diagnosed with celiac in 2008 and went gluten-free. I felt so much better at first, and then in 2010 strange symptoms began returning...a bit different than with celiac, but some overlapping/similar symptoms. I finally discovered my salicylate sensitivity. I then also discovered that I'm histamine intolerant, which is often seen alongside salicylate sensitivity. You can read more about that here: Open Original Shared Link

My main reactions with SS are: hives, rashes, burning skin and joints, aching everywhere, severe fatigue, swelling face, severe bloating, gastritis, red and swollen eyes, digestive problems, sluggish, clumsy, antisocial, depression, etc.

My diet seemed extremely limited at first, but I've gotten used to it, and have figured out exactly what I react to and what I do not react to. I've had to get rid of a lot of toiletry and cosmetic items, too, and I feel much better. I still have reactions from time to time, but ultimately I'm on the mend.

I recommend taking vitamin D and vitamin C. There are likely many other things to take, but I am still learning. Do not take a multivitamin, as they often have dyes and salicylate fillers. I use pure maple syrup in my brown rice hot cereal and on french toast made with yeast-free, gluten-free guinoa bread, etc. Maple syrup contains many minerals.

Epsom salt baths are very helpful (and relaxing) because of the magnesium content, which is believed to help rid the body of salicylates.

Hope you're doing well and feel free to ask me any specific questions.

Best,

vesper

  • 1 month later...
Leli Newbie

Hi guys,

I'm new here, and not really sure how it works. I don't know if you'll be notified of a new post on an old thread? I think this info is worth seeing, though, so here it is.

I've been off gluten since 2004 (no diagnosis, but gut, brain and skin problems all resolved following gluten-free diet. My dr wouldn't test - she said the diet was too hard. Not half as hard as the disease, however). I had increasing problems with salicylates, and then IBS (the FODMAPS diet works), and have been so restricted in what I could eat that eventually I was reduced to meat, rice and lettuce. Bananas, too, but I can't afford them at the moment. Then I stumbled upon this item in Pubmed:

Open Original Shared Link

Basically, if you correct your omega 3/6 levels by taking appropriate doses of fish oils, you can desensitize yourself to salicylates.

With the addition of veges and some fruit to my diet I've been experimenting with paleo nutritional ideas, and feeling better and better. Thinking about paleo, I'm wondering if the inflammatory properties of "heart-smart" vegetable oils has anything to do with it all.

Good luck.

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