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Salicylate Sensitive Celiacs


tailz

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tailz Apprentice

I found this link that takes some of the guesswork out of screening vitamins for salicylates. Be careful though with glutens and other trigger ingredients.

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Ursa Major Collaborator

Tailz, don't use the info on that site. It's all about using guaifenesin, which is supposed to fix fibromyalgia (as long as you take it indefinitely), and claims that salicylates block it's effectiveness. Guaifenesin, in my own experience (and I used it for nearly two years), is utterly useless for fibro. Cutting out the gluten and salicylates is the REAL treatment.

A lot of the advice on salicylates is just PLAIN WRONG. Period. ALL teas, other than chamomile tea, are bad. ESPECIALLY natural ingredients are terrible (but the other ones, like mint flavouring, are awful, too). Topical salicylates, like the ones in toothpaste, shampoo and soap are no good, either.

Guaifenesin DOES thin mucus, that's why it is in cough medicines. It has it's uses. But I found that while I cut out all salicylates and bread (as it tells you to do at the beginning) 'it was working great' (yeah, right). Once I started eating some bread again, I was really sick again. So, I stopped using it.

Now I just cut out the lectins (gluten being one of them) and the salicylates, and the pain and the digestive problems are gone. NO guaifenesin needed.

So, since in this site the underlying reasoning for eliminating salicylates is faulty, why would you trust the rest of the information? The problem is, that there is some truth mixed with lies. It would be hard to distinguish the two, and find the useful information here.

I just read that they encourage using TUMS for your calcium. What an awful idea! NOBODY should EVER take antacids as a calcium supplement. That's about the worst way of getting calcium (besides the fact that Tums aren't proven gluten-free). That advice alone would tell me that whoever is giving the advice on this site is not to be trusted.

Also, they say if the salicylates are part of the inactive ingredients, they are fine. Actually, they are NOT fine. Also, they say that flax seed oil is okay. It is not. In fact, the only oil that is okay is cold pressed sunflower oil.

So, their info on which vitamins are safe and which are not is useless. Don't follow it, in fact, forget about this website.

Please, just get your info from the one on salicylates I link to, this lady really, really knows what she is talking about, and has done her 'homework'. Also, buy her 'Salicylate Handbook' (on C D), it has invaluable information, and is very reasonably priced (she really hardly makes any money on it, she just doesn't want to lose money).

Following her guidelines and advice has helped me more than you can imagine.

And no, (in case anybody thinks I am somehow connected to this lady) I am NOT helping her promote her site and her Salicylate Handbook, I don't know her personally, she is in England, and I am in Canada.

Edit: Oops, I forgot that when you put the c and the d together, it always shows up as celiac disease. I was saying the salicylate handbook was on C D, but it said that it was on celiac disease, because I didn't separate the letters. I hope I didn't cause any confusion.

  • 4 years later...
stef-the-kicking-cuty Enthusiast

Now my question is, is there a website or post somewhere like a list that lists most of the Salicylate free foods you can have? I'm using myself as a guinea pig right now and I think, I'm on to something. No insurance for doctors, but want to try this diet as an exclusion diet and see what happens.

Thanks for all the info!

eatmeat4good Enthusiast
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      @Aretaeus Cappadocia and @Russ H thank you both for your helpful advice and information. I haven't seen a GI in years. They never helped me aside from my inital diagnosis. All other help has come from my own research, which is why I came here. I will be even more careful in the future. 
    • Aretaeus Cappadocia
      @nancydrewandtheceliacclue, you are welcome. After looking at this thread again, I would like to suggest that some of the other comments from @Russ H are worth following up on. The bird-bread may or may not be contributing to what you are experiencing, but it seems unlikely to be the whole story. If you have access to decent healthcare, I would write down your experiences and questions in outline form and bring this to your Dr. I suggest writing it down so you don't get distracted from telling the Dr everything you want to say while you have their attention.
    • Aretaeus Cappadocia
      @Russ H, I partly agree and partly disagree with you. After looking at it again, I would say that the slick graphic I posted overestimates the risk. Your math is solid, although I find estimates of gluten in white bread at 10-12% rather than the 8% you use. Somewhat contradicting what I wrote before, I agree with you that it would be difficult to ingest 10 mg from flinging bread.  However, I would still suggest that @nancydrewandtheceliacclue take precautions against exposure in this activity. I'm not an expert, I could easily be wrong, but if someone is experiencing symptoms and has a known exposure route, it's possible that they are susceptible to less than 10 mg / day, or it is possible that there is/are other undetected sources of exposure that together with this one are causing problems. At any rate, I would want to eliminate any exposure until symptoms are under control before I started testing the safety of potentially risky activities. Here is another representation of what 10 mg of bread would look like. https://www.glutenfreewatchdog.org/news/wp-content/uploads/2019/10/10mgGlutenCrumbsJules.jpg Full article that image came from: https://www.glutenfreewatchdog.org/news/what-does-10-mg-of-gluten-look-like/
    • nancydrewandtheceliacclue
      @Aretaeus Cappadocia thank you for your reply and the link, that is very helpful to get a visual of just how small of an amount can cause a reaction. I know I am not consuming gluten or coming into contact with gluten from any other source. I will stop touching/tossing bread outside! My diet has not changed, and I do not have reactions to the things I am currently eating, which are few in number. My auto immune reaction just seems so severe. The abdominal pain is extreme. It takes a lot out of me. I guess I will be this way for the rest of my life if I ever happen to come into contact with gluten? I appreciate the help. 
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