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Salicylates Sensitivity


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#16 Ursa Major

 
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Posted 30 December 2005 - 09:25 PM

This is very interesting. When five years ago I was researching cures and causes of fibromyalgia, I came across a book called 'What your doctor may NOT tell you about fibromyalgia', by R. Paul St. Amand, MD, and Claudia Craig Marek, RN.

Now he claims that ALL people with fibromyalgia can be cured with a natural medicine called guaifenesin. And for that to actually work, you have to avoid ALL salicylates. I tried it for about a year, avoiding all salicylates, as well as everything he said causes hypoglycemia. I felt somewhat better, as the diet cuts out almost all bread, and I also lost some weight. But I never got significantly better, and eventually gave up on it.

I read about a study, where a group of people tried the guaifenesin for a year, also following the no-salicylates diet. None of them got a lot better, so it was declared another quack cure. They didn't follow all the other diet restrictions in the book, if they had other symptoms, so celiacs weren't covered.

This is what I think: The people that got better according to the book (including the good doctor himself) likely were intolerant to the salicylates (or other things he covered), and got better because of avoiding them, not because of taking the guaifenesin.

Also, he said that the people with bowel problems were supposed to avoid a lot more foods, and the ones with ....................you get the picture. Eventually everybody with celiac disease, salicylate intolerance, hypoglycemia and a host of other problems were mostly covered, and felt better. Not due to the guaifenesin, but due to their severely restricted diets.

Now this book, which isn't very expensive, has some very good advice (if you ignore the guaifenesin nonsense). And it has a list of the 1000 (yes, one thousand) most common salicylates to avoid.

They do include a lot of the things I am intolerant to. But if you look at 1000 things, you ought to find your most common intolerances, I think. On the other hand, it also includes a lot of things I don't believe I've ever reacted to (I may be wrong, though).

But my pain never got any better until I eliminated gluten. I hope I am not intolerant to salicylates as well. But I know I can't tolerate gluten at all, I react severely to it.
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I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

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#17 Rachel--24

 
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Posted 31 December 2005 - 08:59 AM

Ursula,

I came accross that info about fibro and guaifenesin while researching salicylates. Sounds a little like quackery to me too. I dont have fibro. but seem to just be intolerant of both salicylates and amines. I printed that list of 1000 ingredients to avoid. I found it really hard to find cosmetics free of salicylates...especially lipstick. I spent a good hour looking over ingredients in the drugstore the other day. I finally found suitable replacements for everything I use. What a a pain though.

Its been about a week since I got serious about this diet and I've noticed alot of improvement which leads me to believe I'm on the right track with this. In the beginning of my illness 3 years ago I had to stop using alot of my everyday skin and cosmetic products because they were burning my skin and causing skin irritations. My lips, tongue, mouth and throat would also burn at times. I was dx'd with rosacea but clearly never had it. It seems obvious to me now that salicylates and amines were playing a BIG part in my health problems. People with these intolerances also have to avoid colorings, preservatives, additives, bonzoates, etc. I did recognize problems with dyes, aspartame, and some other things but I didn't get the full picture until now.

I have never been able to successfully do any type of food challenge because my symptoms have been chronic. I'm hoping in the next few weeks to eliminate symptoms and start doing challenges.

I was having at least one "episode" a week since going gluten-free. I was too careful to have had that many accidental glutenings and everything I eat cant possibly be cross-contaminated. Sooo...since all gluten containing foods in my pre-gluten-free diet also contain either salicylates, amines, dyes, additives...etc....the BIG question is am I gluten intolerant or not?? I plan on staying off gluten regardless because I cant really go back to my old diet anyways due to all the other ingredients in gluten foods. However it would make a difference as to whether I need to continue being fanatical about contamination and crumbs. Also eating pure oats would be an option for me.

I actually have experimented twice in the past week with eating oats (the ones that are supossed to be free of c.c.) I have experienced no noticeable reactions and in fact I've improved greatly. Most of my symptoms pre-gluten-free can also be caused by a salicylate intolerance. The only way to know for sure would be to do a gluten challenge. I never had any severe GI symptoms but I did experience weight loss and malabsorption and I cant find a link between Salicylates and weight loss...I did read that ANY food intolerance can lead to malabsorption though. At this point its still a mystery. I'm looking forward to discussing all this with my new doctor.

I've done alot of baking this week and its amazing that I can eat a whole batch of cookies and feel fine whereas before I couldnt eat even 2 small store bought gluten-free cookies. The only difference is I'm baking totally salicylate free. Its just not possible to find processed gluten-free foods that are also free of salicylates especially since most are sweetened with fruit juice. This explains my reactions to many gluten-free products that I previously posted about like Barbaras Bakery Cereal. It was not an issue of c.c. but an issue of salicylates.

My food diary (whivh I've kept for one year now) never made sense to me. My reactions seemed to have no rhyme or reason....now when I review it....it makes perfect sense. It also explains why I had problems with corn tortillas and corn based cereals. I had problems with every EnviroKidz cereal.....but they were all from corn and sweetened with cane sugar. So maybe gluten isnt my biggest enemy??? :unsure:

Everyone around me has noticed a BIG improvement in my mood since cutting out all the veggies and fruits high in salicylates. I havent had a "crying episode" yet and I've been consistently happy.

I will continue to update on my progress. :)
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#18 Ursa Major

 
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Posted 31 December 2005 - 11:06 AM

I am glad you are finally figuring out what makes you sick. Reading what you've done makes me think I might be intolerant to salicylates, too, though. I am sure about the gluten, it's just too obvious a change just cutting out gluten. But now I seem to be reacting to other things, too. Last night I ate meat with onions and leeks (both high in salicylates), and I'm aching. Gluten causes instant stomach and bowel rumbling, a stomach ache and diarrhea within an hour. So, there can be no doubt about the gluten intolerance. I am not having any of those gastro symptoms right now. Just the aching bones and muscles again!

Maybe I felt so much better for a while because I avoided anything that might cause a problem (including most fruits and juices), and I also didn't eat any grains or starches at all, because I couldn't digest them. I have started just having some treats (gluten-free of course, but buckwheat is one of the ingredients I use, and it's high in salicylates) lately, and I'm back to aches and pains (sigh). I am not happy that you seem to have this problem, but I am happy that you posted and might have given me some clues.
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I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

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#19 Tim Gallant

 
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Posted 31 December 2005 - 11:46 AM

I am glad I found this forum I thaught I was going nuts trying to figure out what I am allergic to. I have sensitivity to Gluten and Dairy and Msg products. Still having problems with my Bowelas well. Having joint pain and having x-rays not showing anything. My joint paint is so bad at times I can not get out of my chair I lost 35 punds inthe last two years and just recently gianed some back this may be do to Salicylates Sensitivity. I never tested positive for anything so I am going to try this diet soon have to waite till payday so I can afford a lot of tese organic meets and fish and so on. Has anyone found a mouthwash with out Salicylates.

I had a major reaction twice this past week the dentist gave me this medicated mouth wash didn't realize that it contained alcohol. I had a craving for sugar and salt If I am sensitivie Salicylates it would explaing a lot ot things i can't eat tomatoes, pinnaple, grapes., apples, apple cider. Would this be in Heinz organic kethup. I don't eat red meat, so I use alot of lamb which taste good too. Also eat a lot of salmon wwhich i didn't know about the color addivate in them. I will have to switch my whoe diet around again it's fustrating not to eat the foods you once loved. Did you say Cocoa is high in Salicylates even orgaic.

My doctor thinks it's fiber mylaga too I'm on Amitryiline and Tramodol to help with multiple systems. Is there anything for breackfast that is Salicylate free. This is why I have a lot of mood swing too. It also doesn't help when you have been in three car acidents. Money is tight until I get my settlement this month than I will be able to try new things.
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#20 Rachel--24

 
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Posted 31 December 2005 - 02:41 PM

Ursula,

From all I've read buckwheat is suppossed to be low in salicylates so maybe you are reacting to something else or maybe you're just sensitive to buckwheat?
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#21 Rachel--24

 
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Posted 31 December 2005 - 02:53 PM

I had a major reaction twice this past week the dentist gave me this medicated mouth wash didn't realize that it contained alcohol. I had a craving for sugar and salt If I am sensitivie Salicylates it would explaing a lot ot things i can't eat tomatoes, pinnaple, grapes., apples, apple cider. Would this be in Heinz organic kethup. I don't eat red meat, so I use alot of lamb which taste good too. Also eat a lot of salmon wwhich i didn't know about the color addivate in them. I will have to switch my whoe diet around again it's fustrating not to eat the foods you once loved. Did you say Cocoa is high in Salicylates even orgaic.



Tim,

Everything you listed I also have bad reactions to...especially grapes and any fruit juice. I couldnt figure out for the life of me why all fruit juices bothered me so much...also wine. I was trying to eat as healthy as possible but in doing so I was eating everything high in salicylates. Cocoa is low in salicylates but its high in amines. I'm still trying to figure out if I'm also sensitive to amines. It does suck having to totally switch your diet around...I know how you feel about that. I cant tell you how much money I've wasted on food that I end up not being able to eat. Hopefully this is the last time I'll have to switch everything around. I dont think there's a mouthwash free of salicytates...at least I havent found any.
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#22 gf4life

 
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Posted 31 December 2005 - 05:06 PM

Hi Rachel. It probably was me who was mentioned earlier. My son Jacob actually is thought to have Aspirin Triad Disease. It is basically an aspirin allergy which in turn causes wheezing-type asthma and recurring nasal polyps. It is hard to test for, so we are just basically treating him as though he has it. He can't have ANY medications that are made with or derived from aspirin, and in turn we limit his food consumption of salicylates. Aspirin is made from salicylic acid and so foods containing high amounts of salicylates can trigger symptoms as well.

The treatment for this type of asthma is Singulair and he has been ont hat for about 3 years. The nasal polyps have to be removed so they don't move up into the upper sinus cavity. They currently are confined to the maxillary sinus. He is about to go in for another CT scan of his sinus to check the growth of the polyps. His ENT did an x-ray a few weeks ago and thinks they might be back. His last surgery was Feb. 2005. He has had 2 sinus surgeries (1 almost every 12 months) in the past 2 years and might need another one.

If he continues to have polyp growth enough to need surgery, I will have to get more strict with his diet. He will have to be on an extremely low salicylate diet. Of course he still needs to be gluten-free also. It doesn't sound fun to me, but there are people out there with much more limiting diets than that, so I know it is possible to have a full life and a very restrictive diet. I feel blessed to only have to watch out for gluten and soy! It is just a matter of having a list of off limit foods and sticking to it.

He has had less stomachaches since limiting his salicylates as well. I think some of his problem was that. He continued having some tummy troubles after going gluten-free, and then it was after that when we found out about salicylates/aspirin...

You have probably been to the same information sites that I have found (many from New Zealand). Here are my links to my favorite sites:

http://www.allergycl.../guides/30.html
http://www.everybody...03e88a6d71.aspx
http://users.bigpond...ian/fi/sal.html
http://users.bigpond...lates-list.html
http://allergies.abo...a/aa040300a.htm
http://www.feingold.org/sas.html
http://www.foodcanma...k/sali/sali.htm
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Mariann, gluten intolerant and mother of 3 gluten intolerant children

#23 Rachel--24

 
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Posted 31 December 2005 - 07:31 PM

Thanks for all the info Mariann. :)

I did visit all those sites already. I pretty much devoured all the info. I could find the first night I read about salicylates. :rolleyes:

I'm sorry to hear about your son. If I remember correctly I think I have the same or similar genes as him...apparantly we share some of the same problems too. :(
I don't know how I would react to aspirin since I havent taken any since before I got sick. I dont think I would ever try it since I read that aspirin contains huge amounts of salicylates in comparison to food. If I react this badly to the foods what would the aspirin do? I dont wanna find out. :unsure:

I'm being super strict about the salicylates for now but this diet is WAY harder than the gluten-free diet. gluten-free seems like a piece of cake to me compared to this but if it works it'll be worth it.

I've been baking and cooking like crazy....its actually kind of fun. The only thing I knew how to make before all this was mac & cheese so I've come a long way. :D

btw....does your son have any other symptoms related to salicylates? I seem to get mood swings, depression, bursts of anger along with brainfog. I had thought this was only due to gluten but I was wrong because just eating the wrong fruits and veggies causes all that for me too. I read about kids having behavioral problems or hyperactivity from salicylates. Its hard to tell whats what since gluten causes those same symptoms.
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#24 Tim Gallant

 
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Posted 31 December 2005 - 08:41 PM

Tim,

Everything you listed I also have bad reactions to...especially grapes and any fruit juice. I couldnt figure out for the life of me why all fruit juices bothered me so much...also wine. I was trying to eat as healthy as possible but in doing so I was eating everything high in salicylates. Cocoa is low in salicylates but its high in amines. I'm still trying to figure out if I'm also sensitive to amines. It does suck having to totally switch your diet around...I know how you feel about that. I cant tell you how much money I've wasted on food that I end up not being able to eat. Hopefully this is the last time I'll have to switch everything around. I dont think there's a mouthwash free of salicytates...at least I havent found any.



Well again I had trouble tonight I guess no more oranges it's high in salicylates I read from someone's web site. I also have visted alot of those sites that are listed and as well I hae problems with sinusis. I have also inchy skin didn't realize the salicylates in shampoo and so on I will have to get better procucts I always used head and shoulders. I live in CT where there is alot of health food stores around. I was born in Prince Edward Island Canada where there seems to be alot more awareness there and alot to choose from. It's hard to go out to a resturant you have to ask alot of questions.
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#25 Ursa Major

 
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Posted 03 January 2006 - 05:16 PM

Thanks, Mariann for the links, I went and read everything, and it makes sooooooooo much sense.

You're right, Rachel, about the buckwheat. I also put ground almonds in, as well as coconut oil (both high in salicylates), which were probably the problem. Lately I had also eaten a lot of oranges, cherries, almonds. I had switched to almond milk and drinking lots of that, my vitamins are full of salicylates, and I was using coconut oil for cooking. I also used quite a bit of black pepper, and drank juice (which I rarely do). I also had fake champagne, made from real red and white grapes, as well as sparkling peach juice. I was sweetening everything with 'healthy' honey, was drinking green tea for getting vitamin K and eating dark green salad. Yikes! And I was convinced I was having all healthy stuff (well, apparently not for me).

I had gained four pounds in two days, my joint, muscle and back pain was getting intolerable again (making me go back on codeine), I was crying for two days, being totally miserable and depressed, and I had asthma.

Yesterday I stopped having any salicylates, bought new shampoo and soap (for the third time in three months switching everything, my family has a lot of expensive stuff to use up :rolleyes: ), and tried to come to terms with the frustration of starting almost from scratch in figuring out my diet, again.

But today the pain has subsided significantly, I am more stable emotionally, the asthma is gone, my back is much better, and I lost (in one day) five pounds! If that isn't confirmation I am on the right track, I don't know what is.
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I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

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#26 Rachel--24

 
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Posted 03 January 2006 - 09:18 PM

Ursula,

I know what you mean about the frusteration in changing everything...again. I had to change all my hair products and cosmetics for about the third time...not to mention a whole new diet. I thought I was doing everything right and eating so healthy but apparantly I was doing everything wrong for my body. I wasnt using coconut oil or honey because in the past I had bad reactions to both of those...especially the coconut oil. I had thought I was allergic to coconut because the reaction was so severe. I had been eating tons of berries, melons, apples, almonds, broccoli, mandarins and a bunch of other veggies and it was taking a toll. I got to being depressed every day again....the joint and muscle pain were back too. Its better now that I've eliminated this stuff but its so difficult to keep changing my diet...I end up throwing alot of food away. :(

Thats great that you are noticing a change for the better already as well. Good luck to you!
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#27 Rachel--24

 
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Posted 07 January 2006 - 08:56 PM

Ok...for anyone who was following this thread, I saw my new doc yesterday and we taked for a long time about my symptoms and then I was given a phsyical. When she checked my nose she was shocked and told me I had huge polyps and that my tissue was swollen and the polyps were back into my cheek or sinus area. I've had pain here for the entire time I've been sick and it didnt clear up after gluten-free like alot of the other symptoms did.

I just left my HMO because they were the WORST doctors ever. I had an MRI of my head and a catscan of the sinuses and I was told everything looked good. I saw the ENT twice and my new doc couldnt believe that they missed these polyps...she said that my nose was completely raw inside. When I last saw the ENT (6 months ago) he told me to see a psychiatrist because there was nothing wrong physically. :blink: My nose LOOKS swollen to me and it definately hurts at the bridge which is where the polyps are. I've been dealing with this for 3 years now.

Now I have to have surgery to remove the polyps...this is much scarier to me than the endoscopy was but I'm hoping it will finally relieve the pain and pressure in my head.

I asked her what could cause the polyps and she said aspirin/salicylates could do it. I guess I was definately on to something when I wrote about salicylates a couple weeks ago. I havent taken aspirin since the first few months of my illness...I was taking aspirin to relieve headaches caused by my Graves Disease but the aspirin only worsened my pain and I've been sick since. I think the aspirin triggered the sensitivity and now I react to ALL salicylates.

I'm still not sure about the gluten sensitivity and how much that factors in...if at all. The new doctors specialize in GS so hopefully we'll be able to figure everything out. Its looking like I probably have both conditions because of the malabsorption, weight loss and bloating. I'll have to wait for Dr. Fine's studies to get published to know more about the significance of those tests. I did get ALOT better going gluten-free but for now I wonder if it was gluten or the food dyes, preservatives and salicylates causing the symptoms. I react to those ingredients in gluten-free processed foods so a normal diet would definately make me sick regardless of whether I was gluten intolerant or not. Staying gluten-free is really not a big deal anyway....Salicylate free is much harder so far....especially since it gets absorbed into the skin unlike gluten. Bummer. :(
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#28 Ursa Major

 
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Posted 09 January 2006 - 08:13 AM

Rachel, I am sorry you have to have surgery for polyps, but glad that at least your nose and sinus problems have been figured out. Hopefully you'll feel much better after the surgery.

Hearing that the polyps made your nose raw makes me think. My nose is always crusted on the inside, and I get nosebleeds. And I always have a headache. I had polyps removed once as a child, maybe I should have that checked out myself.
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I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

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#29 Nancym

 
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Posted 09 January 2006 - 09:15 AM

Rachel, do you have any links to this sensitivity? I'm still trying to get to the bottom of my aches and pains, perhaps this could help.
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#30 Rachel--24

 
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Posted 09 January 2006 - 09:51 AM

Rachel, do you have any links to this sensitivity? I'm still trying to get to the bottom of my aches and pains, perhaps this could help.


Hi Nancy :)

There are some links posted a little further up on this thread. They were posted by gf4life. I also posted some links on the first page...some of the links might be the same as what she posted.

Ursulsa, Did you read gf4life's post? Here son also has problems with nasal polyps. Apparantly they are very common with salicylate sensitivity. I read that most people who are sensitive to aspirin have polyps.

I'm going back to see the nutritionalist later today. We'll talk about my diet. Hopefully he knows something about salicylates but he mainly specializes in gluten sensitivity. I'll post about how that goes on another thread. :)
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