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    • CommentAuthorLesleyG
    • CommentTimeDec 19th 2007
     
    Hi another Aussie here

    Is anyone else Gluten and Salicylate sensitive? I'm breaking out in what I believe are called granulomas even though I've been on the elimination diet for a few months. Any hints gratefully accepted. Lesley
    • CommentAuthorRita
    • CommentTimeDec 20th 2007 edited
     
    LesleyG, are you sure they are granulomas and not just hives? Many people who are ss also find themselves sensive to gluten. It is probably because salicylates are a subgroup of phenols, and though most food contains some amount of phenols, others contain higher amounts. Although wheat is not on the high list, it does contain phenol, and it contains higher levels if it is whole wheat, since the phenol is concentrated in the hull. We have found it best to lay off wheat in the elimination/healing phase, then, later on, you might be able to enjoy some white flour on occasions, because it's not really good for you in the first place. If I eat too much wheat, it slows down my digestion.
    • CommentAuthorLesleyG
    • CommentTimeDec 30th 2007
     
    Hi Rita

    The gluten intolerance actually showed up as antibodies in my blood (originally they thought I had coeliac disease). I'm fairly certain the doctor said they are granulomas - definitely not the sort of hives one gets from an allergic reaction.

    I've been reading up on the salicylate free diets - what does everyone drink for a hot drink? I used to be a coffee addict - maybe that's what did the damage.

    Regards Lesley
    • CommentAuthorTEDDY
    • CommentTimeDec 30th 2007
     
    Hi Lesley G

    I manage to drink decaf coffee but only have one a day and I get on okay with that. I used to always drink tea before finding out I was sals intolerant so just one coffee and decaf gets me by in a day. Everyone reacts differently so best to do what suits you. Hope you find a suitable hot drink. I tried a hot chocolate one evening as I felt cold and fluish but I ended up with hives so didnt suit me - not yet anyway.

    Take care
    Teddy
    • CommentAuthorRita
    • CommentTimeDec 30th 2007 edited
     
    Hi Lesley. I tested postive for wheat allergy also. Are you keeping a food diary to be able to track what might be causing your granulomas? This would be the best course. I mostly do without hot drink and drink lots of water, water, water. It's really a lifestyle change. But one you need to make for the betterment of your health.
    • CommentAuthorLesleyG
    • CommentTimeJan 2nd 2008
     
    Thanks Rita and Teddy

    I wonder if drinking 8 - 10 cups coffee over the years actually caused this problem in the first place. I'm trying to drink only a couple of decaf coffees a day - I read in a book on autoimmune diseases that over 4 cups of decaf has been linked to rheumatoid arthritis. If its not one thing its another. I can't relate the granulomas to anything as yet. On another note what does everyone have for breakfast? I'd like to lose some weight but find I'm getting hungry. I'm having brown rice at the moment for breakfast.

    Cheers

    Lesley
  1.  
    Hi Lesley,
    Breakfast is something I have difficulty with also. I'm one who doesn't really care for much first thing in the a.m., but because of the meds I take I need to eat at least a little something. This morning I had a banana and milk. I know Rita and some others stay away from dairy, but I don't seem to have a problem with it that I can tell. I also have canned pears and a slice of white cheese (mozzarella or jack). Some mornings I scramble an egg or have oatmeal. If I don't have at least a little protein in the morning I get hungry well before lunch time. During the elimination diet I had rice for breakfast most days. Gets very boring, I know. But then so does a low sal diet! I, too, would like to lose some weight, but I'm taking one thing at a time. I'm still experimenting with which supplements work best for me and that's my battle right now. When I have that settled, then I'll think about the weight. I'm just trying to think of myself as a work in progress. Hope you can get your health in check soon.

    BTW, did you realize that even decaf coffee has some caffiene in it, also? Not sure how much 2 cups a day may add up to, but might want to look at that, too. Yeah, I know, big downer! I so miss anything to drink with some flavor!

    Wishing you success,
    Cindy
    • CommentAuthorTEDDY
    • CommentTimeJan 2nd 2008
     
    Hi Pruittmama

    Happy New Year to you. Thanks for letting us know that decaf contains caffiene - I didn't know that I was led to believe it was totally cafeinne free. You learn something new every day so thanks for passing that on.

    Hope all is well for you
    Teddy
    • CommentAuthorRita
    • CommentTimeJan 3rd 2008 edited
     
    Cindy, I didn't know that either, although I am not a coffee drinker. Good info. You know, I did not think that dairy was effecting me either, at first, but since I have drastically lowered my intake, (I still have some ice cream and cocoa now and then) my sal allowance has increased and I still continue to get better every day.
    Today I ate some Chinese orange chicken and even had some chocolate cake from the box and did not have an immediate reaction which I normally would. I did however take a no-phenol and soaked my feet as a precautionary measure. But I did not have to pop an antihistamine. If you are still having congestive problems, you might look closer at dairy.

    Les, you should pay really close attention to this, as people like us can be extremely senstive to caffeine. Just the little you are receiving from your daily intake of decaf could be causing your high blood pressure and facial pain, along with the meds. But you will never know until you stop. Here is a website that discusses caffeine and high blood pressure.

    http://www.mayoclinic.com/health/blood-pressure/AN00792

    Lesley, coffee is also high in phenol which is the chemical "parent" of salicylates. People who are ss can also be sensitive to phenols. I am. They would cause the same symptoms as salicylates.
    • CommentAuthorTEDDY
    • CommentTimeJan 3rd 2008
     
    Hi Rita

    Thanks for the info I will stop taking it right now. I assumed as it was decaf it was okay. Will let you know if in time I notice a difference in blood pressure.

    Hope you all had a lovely New Year. We have snow here and I am glad to be back in the safety of my own home. Hubby has to go and pick daughter up from work and roads are treacherous. Snow is lovely to look at from indoors!

    Teddy
    • CommentAuthorLesleyG
    • CommentTimeJan 4th 2008
     
    Dear Cindy, Rita and Teddy

    Thanks for your comments regarding breakfast - I might try the cheese as I think its the lack of protein which is making me hungry.

    Yes I was beginning to suspect that even though it was decaf I still might be doing the wrong thing. My symptoms don't seem to be as dramatic as others although today I am suffering from what can only be described as a 'hangover'. I took my nephew to a funpark yesterday and don't know if it was the exertion or eating a few wrong things (in desperation).

    Cheers "Aunty Lesley"
    • CommentAuthorTEDDY
    • CommentTimeJan 4th 2008
     
    Hi LesleyG

    Hangover is exactly the word I would use to describe how I feel and obviously we have not been out drinking! Hope you feel better soon.

    Teddy
    • CommentAuthorLesleyG
    • CommentTimeJan 7th 2008
     
    Hi Teddy et al

    Its nice to be able to have a whinge. I went to a friend's place and ended up staying for a meal on Saturday. I swear all I did was eat a couple of slices of tomato, but had an even worse 'hangover' on Sunday. Does anyone else find that it only takes a small amount to bring on symptoms?

    Beggar for punishment - Lesley
    • CommentAuthorRita
    • CommentTimeJan 8th 2008
     
    Lesley, if I choose to eat the wrong thing, even one bite can set me off. One bite of marshmellow, or hot dog, or VERY fresh, just picked fruit causes me heaps of trouble and into the next day or so. You might had already had a high sal level before you ate the tomatoes, then they pushed you over your edge. I find I'm twice as sensitive right before and during my period.
    • CommentAuthorTEDDY
    • CommentTimeJan 8th 2008
     
    Hi LesleyG and Rita

    Rita is so right. I have been ill as I couldn't get my bowels to move and ended up my husband suggested I eat an orange obviously high in saliclyates but I was in such pain with my bowels packed up and blocked I ate the orange. Big Mistake I know have I suffered for it. I have been ill for two days vomitting and diorreah rash etc the most horrible thing is that I know I was responsible for becoming so ill just by eating an orange so it really is not worth it.

    Rita is so right if we dont stick to our low sals and know that by sticking to what we finds suits us individually it really isnt worth it.

    Every time I try to introduce something new into my low sal diet it doesnt work for me personally so I am happy to stick to what I can have for the time being knowing that I feel better sals wise anyway. Everything else causing me problems at moment but not sals until trying to eat an orange. My own silly mistake and guess what - you all guessed it - I won't be doing it again!!!!!!!

    Take care
    Teddy
    • CommentAuthorRita
    • CommentTimeJan 8th 2008
     
    Les, before I began my low sal diet, I was ALWAYS BLOATED. I just thought is was a way of life. My bowel movements came every third day. I found that mixing wheat and dairy caused my bloating. Are you still eating these things? You should try to begin again with the meat/rice elimination diet to find out what the problem is. As far as I can remember, you never did this. If you did, did your bloating subside when you began the elimination diet? From what I've read from you, you probably have a phenol sensitivity too, and this could make you sensitive to wheat, dairy and coffee. Even though they would not cause symptoms like hives, they could cause you to become constipated and bloated.
    • CommentAuthorLesleyG
    • CommentTimeJan 10th 2008
     
    Hi Rita and Teddy

    I've been on the elimination diet for about six months. So far the only things picked up are gluten and salicylates. Is there a website on phenol sensitivity? (This hasn't been mentioned by the dietician). Also, I notice you can't eat marshmallow. Not that I've eaten a lot but that is one sweet that is allowed by the dietician - do you know which ingredient doesn't agree with your?

    Overall I would have to say I am 50% better.

    Regards

    Lesley
    • CommentAuthorTEDDY
    • CommentTimeJan 11th 2008
     
    Hi LesleyG

    At least 50% better is an improvement so at least you know it is working for you. Sorry I don't know anything about a phenol sensitivity website but if there is one I am sure Rita would have put it up. Hope that you keep improving. Take care Teddy

    Rita Hi

    I did the elimination diet and still have not really added too much in other than what is in the low section. I tried to add in carrots but I reacted. I dont eat any processed foods as I have my sodium metabisulphite allergy to contend with so my diet is not allowing me to add anything in. I have my appointment next week so see how I get on then. Strangly enough when I was really ill on Sunday and my bowel felt as if it had exploded and vomiting etc my stomach is not so bloated as it was so will be interesting to see what doctor has to say. The weight never changed but tummy has gone done still bloated compared to a normal tummy but nothing like it was.

    Hope you are well Rita.

    Take care
    Teddy x

    WT - where are you - hope that you are doing well - been thinking about you lately and noticed you are not on the forum at the moment. Take care WT
    Teddy x
    • CommentAuthorpruittmama
    • CommentTimeJan 12th 2008
     
    Teddy,
    Been thinking about your issues with the bloated tummy. First of all, sorry you've not found answers yet. But I was wondering, you said you only eat from the low sal items, do you eat a lot of the beans, cabbage, sprouts or onions? All these foods are notorius for causing excessive gas. Might that have anything to do with it?

    I was looking at the following website: http://ibdcrohns.about.com/cs/relatedconditions/a/abdominalbloat.htm
    Don't know if it will have any helpful info, but anything is worth a try. Forgive me if this has already been discussed and I missed it.

    Hope to hear better news of your health soon.
    Cindy
    • CommentAuthorTEDDY
    • CommentTimeJan 13th 2008
     
    Hi Cindy

    Nice to hear from you and hope you are well. Thanks for this website which I will go and have a look at. I appreciate this. I don't eat a loat of cabbage I have it once a week and I dont like sprouts or onions. I take shallots but only once in a blue moon. I don't cook with beans and I am looking into having some bean recipies to introduce beans to my diet so the answer at the moment is no. I am not eating well at all at the moment and I will try to speak to my consultant about this on Wednesday as Hubby is worried I am not having a good balanced diet at the moment and I know he is right and that this does not help.
    Thanks Cindy will have a look at the website.
    Take care
    Teddy x
    • CommentAuthorJo Freeman
    • CommentTimeJan 13th 2008
     
    Hi Lesley,

    I'm from Adelaide, anotehr Aussie finding this website absolutely invaluable.

    I used to be an 8-10 cups of (black) tea with milk per day person. That has gone out on both counts - sals for the black tea and dairy for the milk.

    My replacement hot drink is green tea with some soy milk. It is a bit of a taste adjustment but I am now used to it after a couple of months and quite enjoy having a good old cuppa again. One of life's pleasures.

    Jo
    • CommentAuthorRita
    • CommentTimeJan 14th 2008 edited
     
    LesleyG. The marshmellows where I live contain mostly junk.... corn syrup, artificial colors and flavors, all of which I react to.
    Hi LesleyG Here is some information on phenols. Salicylates are chemically related to them. They are a sort of "parent" and some ss people can also be sensitive to them.
    http://www.danasview.net/phenol.htm
    http://www.enzymestuff.com/nofenolfile.htm
    • CommentAuthorLesleyG
    • CommentTimeJan 24th 2008
     
    Hi Jo and Rita

    Have been tied up with work and other commitments so haven't had time to check the website. Does anyone go red in the face from imbibing salicylates? I thought I have been very careful other than decaf. coffee but seem to go very red regularly.

    Also Jo - I'm looking for a hot drink - I thought all teas were out?

    Cheers

    Lesley
    • CommentAuthorpruittmama
    • CommentTimeJan 24th 2008
     
    Lesley,
    Funny you mention going red in the face. Recently I was out with friends and ate as I pleased. The probiotics control the digestion issues enough that I can do that. During the meal a friend who is familiar with my intolerance asked how it was going. I told her the success I've had with probiotics, but that I still have 'quirky' symptoms sometimes. She said, "Like getting a red nose?" My nose had turned beet red! It doesn't happen every time I eat a high sal meal, but occasionally it happens. Doesn't seem to cover my whole face, just gives me a clown nose! Weird, huh?
    Cindy
    • CommentAuthorMarie
    • CommentTimeJan 24th 2008
     
    Lesley,
    I turn red from most amounts of salicylates, usually starting with my ears and/or nose and progressing to my whole face and chest if I had a lot or a very strong reaction. I think that amines may also cause me to redden. Typically the reddening happens about 5-60 minutes before other symptoms (hives, trouble breathing, phlemy throat, coughing, etc.).

    I seem to have no trouble with chamomile tea, so long as it's just chamomile (no rose hips or other tea things) if it's only a cup or two a day.
    • CommentAuthorRita
    • CommentTimeJan 24th 2008
     
    LesleyG, my face never turns red, but if I overdo the sals, my neck and lately my arms will turn red and hot.
    • CommentAuthorLesleyG
    • CommentTimeJan 28th 2008
     
    Thanks Marie and Rita

    With the redness I don't seem to have any other immediate symptoms.

    I have very deep sores on parts of my body - at the moment my legs but I haven't been able to connect an outbreak to anything definite yet.

    The dietician is still trying to find out what is causing these.

    I'm a bit suspicious of amines, but am still including them in my diet - the effect is not so dramatic as salicylates.

    Lesley
  2.  
    I regularly drink Rooibos (or redbush) tea. I am wondering if anyone knows if this has salicylates in it. I too was drinking a cup of caffiene free coffee every day.

    Wendy
    • CommentAuthorRita
    • CommentTimeFeb 8th 2008
     
    Hi Wendy. Unless the tea is chamomile, (can't spell it and too tired to look it up) is most likely contains sals. If you tell us the ingredients, maybe we can help you with more info.
    • CommentAuthorWendy
    • CommentTimeFeb 8th 2008
     
    Hi Rita,
    Rooibos is a bush which grows in the mountains of the Cape in South Africa. It is similar in looks to the tea tree bush. Rooibos or Redbush has been popular with Afrikaans people for generations and contains no caffiene etc. It has a mild taste (quite similar to tea) and also is rich in vitamin C. It makes a great alternative to ordinary tea (an acquired taste), but I do know some Australians who now prefer it. I intoduced friends to it while I was there last year. I do drink it a couple of times a day, but have suffered with giant urticaria (or hives) for thirty years and about six months ago came across what I think is the reason Salicylates.
    Still taking antihistamines every second day and now have adjusted my diet to be as salicylate free as possible. I also wonder if amines or phenols may be a problem for me. My urticaria appears to be linked to the cold weather rather than hot, but suspect that my system does not like extremes of temperature.
    It is great to find a forum with so much help.
    • CommentAuthorgodiver
    • CommentTimeMar 14th 2008
     
    Hi Lesley
    Can i recommend the website www.doctorgluten.com
    The author is also helpful at answering email questions, certainly he would add weight to the gluten and salicylate intolerance link.
    Cheers
    Diane (Hobart)
    • CommentAuthorLesleyG
    • CommentTimeMar 17th 2008
     
    Thanks Diane - I'll look it up.

    Does anyone have a recipe for a cough lolly. I have a good toffee recipe but would like it salicylate free.

    Regards Lesley
    • CommentAuthorednashedna
    • CommentTimeMay 27th 2008
     
    To Rita - really interested in the phenols thing. Our toddler is coming off his "baseline" diet slowly and he reacted to Quinoa and Buckwheat but not white pasta - it seemed really odd to me. Do Buckwheat and Quinoa have lots of Phenols in it? Could that be why?
    • CommentAuthorRita
    • CommentTimeMay 27th 2008 edited
     
    Ednashedna, from the information I can gather, buckwheat does contain phenols, although I don't really know if if is a high amount. Quinoa contains oxalates and so does buckwheat, and oxalates are a chemical found in foods that are very high sal like berries and foods that contain high amounts of phenol like cocoa, so without doing more research, I would guess that they both contain amounts that could cause reactions in the phenol sensitive person. Here are two websites that contain info on phenols, and don't forget to access the other websites that I posted on the earlier threads for a better understanding.
    http://www.patentstorm.us/patents/6753312/description.html
    http://www.nourishinghope.com/nourishing_hope_blog/2007/02/index.html
    • CommentAuthorRita
    • CommentTimeMay 27th 2008
     
    Edna, after closer examination, I found out that both buckwheat and quinoa contain a phytonutrient called lignan which is part of the phenol family. Salicylate sensitivity occurs when the body has trouble making the phenol-sulfa-transferese enzyme which helps to detox salicylates, phenols, estrogens and other toxins.
    Information on the phenol family. http://www.theamericanchiropractor.com/articledetail.asp?articleid=695&category=18
    • CommentAuthorednashedna
    • CommentTimeMay 28th 2008
     
    Rita - you are amazing! Have just printed this off to show my husband who is not quite getting his head around it all. Thank you so much.
    • CommentAuthorraven
    • CommentTimeOct 22nd 2011
     
    About hot drinks: I know this is an old post, but I just stumbled across it and thought I'd pass on my experience with red bush tea (also known as rooiboos tea). I think it must be a pretty high salicylate cos I get a bad reaction from it - bodywide pain that lasts many hours. The only safe tea I have found is chamomile tea, I'm definitely fine when I have just one cup, but start to feel a bit off if I have a second cup. I sometimes get away with weak black tea, I dunk a teabag for the count of 4 then discard the bag. I don't like coffee. I've tried weak black carob tea but I get sick from it - don't know if that's because it is high in oxalates, or if it's just part of my generalised food sensitivities. I've also tried a vanilla pod in hot water but don't like the taste. I can't use caro or any of the offer coffee substitutes cos I'm intolerant of all grains except rice, and dandelion coffee for some reason makes me really ill. If anyone out there has found a decent hot drink that people like us can tolerate I'd love to hear about it.
    • CommentAuthorsylviaann
    • CommentTimeOct 23rd 2011
     
    Raven,
    Which flavor of Red Bush (or rooiboos) did you drinK?
    • CommentAuthorKiwi
    • CommentTimeOct 23rd 2011
     
    Tea is high in histamine and many of these food intolerances go hand in hand. As SS is caused by damage to the ileum, it stands to reason that it is probably caused by gluten damage and/or drugs, but drug damage usually heals as soon as the offending drug is removed as far as I understand it. For instance, aspirin and the like cause lesions in the ileum, but heal once aspirin and NSAIDs are stopped. However, it's a different story with gluten damage which can take years to heal. Once the small intestine is damaged, various digestive enzymes are no longer produced there and intolerances develop. I have long standing gluten damage which may take a few years to heal. In the meantime, as well as gluten intolerance, I have lactose intolerance, fructose malabsorption, histamine intolerance and SS, IBS and pancreatic insufficiency. All caused by gluten.
    • CommentAuthorraven
    • CommentTimeOct 23rd 2011
     
    Sylvia, I've never come across different flavours of rooiboos. Just your standard old rooiboos tea, unflavoured, imported from south africa - I think it grows naturally in the Cape province.
    • CommentAuthorPossum
    • CommentTimeJan 30th 2012
     
    I had reactions to rooibos tea much as I loved it (craving it now as I write) but I would get skin inflammation & breakouts...

    I researched, forgetting about sals & found also it was related to the soy bean plant which I am highly allergic to also!! Hearing also the connection to histamines etc makes sense..

    Kiwi - I too have lactose intolerance, fructose malabsorption, histamine intolerance and SS, IBS and pancreatic insufficiency. All caused I also suspect by gluten...;-).
    • CommentAuthorKiwi
    • CommentTimeJan 31st 2012
     
    Possum! How long have you been on a gluten free diet?
    • CommentAuthorPossum
    • CommentTimeJan 31st 2012
     
    Oh for ages... Stated out with Atkins in the 90's as I knew wheat bloated me My daughter has even worse problems with wheat & we both don't tolerate soy as well... As does my Mum but she won't acknowledge it...
    Can you do gluten free foods at all? I find they have gums & potato flour in that I have to avoid as well ;-)
    • CommentAuthorKiwi
    • CommentTimeJan 31st 2012
     
    Possum.........I eat very little GF processed foods, the only ones being rice flakes for brekkie, and GF bread but I'm currently seriously considering going totally grain free as it seems some people who are GS can also be grain sensitive. My diet is pretty pathetic and I'm fairly certain that my nutritional status is not up to much, but I'm in the process of cutting out the rice flakes, bread and rice milk. I have bought some buckwheat flour, buckwheat being ground seeds rather than a grain and have made biscuits with it, quite nice actually. I'm going to try puffed amaranth for breakfast and maybe hemp milk or goats' milk, haven't quite decided yet. Lunch and tea are potatoes, green breans and meat. Sometimes for lunch I make buckwheat pikelets without sugar and eat them with meat. Every second day I add bok choy or sweet potato and that's about it. I can tolerate only small amounts of potato flour so don't bother with it at all now. I find it hard to get unbleached tapioca flour, so don't bother with that either. I live in hope of one day being normal again!
    • CommentAuthorPossum
    • CommentTimeJan 31st 2012 edited
     
    Kiwi - Sounds like you are on the right path... Buckwheat flour is so nice & makes great pikelets - quite light ;-) Sadly I can't tolerate it as it makes me gain :-( Actually most carbs do that, although I can eat all the butter, meat & (low sals) vegs I want & not gain at all!! Even dark chocolate *rolls eyes* Go figure??!!
    With a name like that, where are you living?!
    • CommentAuthorJtoz54
    • CommentTimeJan 31st 2012
     
    Hi I always have a pot of rice or quinoa on hand. I might put peas , cauliflower , string beans, cabbage or beans on it. Then in the morning I might poach 2 eggs and put them on top of a big spoonful of the rice. You dont even miss the bread as the yolk is absorbed by the rice. And I drink hot water when I want something hot. Joan