Jump to content
  • You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

Salicylate Sensitive Celiacs


tailz

Recommended Posts

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.

Open Original Shared Link


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



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
Open Original Shared Link

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Scott Adams replied to Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      34

      Pain in the right side of abdomen

    2. - knitty kitty replied to Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      34

      Pain in the right side of abdomen

    3. - Aretaeus Cappadocia replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      7

      1 Year Elimination Diet journey

    4. - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      7

      1 Year Elimination Diet journey

    5. - Aretaeus Cappadocia replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      7

      1 Year Elimination Diet journey

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      134,056
    • Most Online (within 30 mins)
      10,442

    Faiga
    Newest Member
    Faiga
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Scott Adams
      Celiac disease can have neurological associations, but the better-described ones include gluten ataxia, peripheral neuropathy, headaches or migraine, seizures, cognitive symptoms, and, rarely, cerebral calcifications or white-matter changes. Some studies and case reports describe brain white-matter lesions in people with celiac disease, but these are not specific to celiac disease and can have many other explanations. A frontal lobe lesion could mean many different things depending on the exact wording of the report: a white-matter spot, inflammation, demyelination, a small old stroke, migraine-related change, infection, trauma, vascular change, seizure-related change, tumor-like lesion, artifact, or something that resolved on repeat imaging. The word “transient” usually means it changed or disappeared, which can happen with some inflammatory, seizure-related, migraine-related, vascular, or imaging-artifact situations.  Hopefully they will find nothing serious.
    • knitty kitty
      @Heatherisle, I would feel much less worried if you would insist that the doctors administer high dose thiamine hydrochloride (500mg x 3 daily) for several days, with a banana bag (all eight B vitamins, riboflavin makes it yellow like bananas).  Electrolytes may become unbalanced, so monitoring is needed as well.  Just to rule out Thiamine deficiency, high dose thiamine should be administered for several days.  If no health improvement, look for something else. The symptoms your daughter is showing are seen in Wernickes Encephalopathy caused by Thiamine deficiency.  White spots in the brain including on the frontal lobe are seen in Wernickes Encephalopathy.  Blurred vision, balance problems, changed gait (wider stance to compensate for imbalance), tingling in hands and feet, ascending neuropathy, lower back pain, kidney pain, abdominal pain are all symptoms I have experienced when I had Wernickes.  The damage becomes permanent if not corrected quickly.  Korsakoff Syndrome follows with brain damage that cannot be reversed, and death following.   Doctors are not trained in Nutrition.  Doctors are taught Wernickes Encephalopathy only happens in Alcoholism.  My doctors did not recognize Wernickes Encephalopathy because I did not drink alcohol.  If it walks like a duck... Doctors do not realize that Malabsorption from Celiac Disease can result in severe nutritional deficiency diseases, including Wernickes.  Malabsorption of Celiac Disease affects all the essential nutrients, vitamins and minerals, our bodies need to function properly.  It's rare to have a deficiency in just one vitamin.  B12 Deficiency and Thiamine deficiency go hand in hand.   I had symptoms of deficiencies in many vitamins and minerals because my Celiac Disease was still undiagnosed at that time.  They laughed when I asked to be checked for Celiac Disease.  I was overweight (high calorie malnutrition).  I didn't match their " in the box" thinking.  I didn't match their concept of the wasting away, skin and bones stereotype of Celiac Disease.  My doctors wrote me off as "depressed".  I could feel myself dying.  I trusted what I learned at university about how vitamins work inside the body.  I recognized the symptoms of Wernickes and other nutritional deficiency diseases.  At home, I took 500 mg over the counter thiamine hydrochloride and had health improvement within twenty minutes.  I continued supplementing for months, with thiamine and B vitamins and electrolytes.  I continued to have health improvements.  I did suffer some permanent brain damage.  I have permanent vision problems and optic nerve damage.  Computer screens cause migraines.  I struggle through them to help others.   Ask for Thiamine and an Erythrocyte Transketolace Activity Assay.  This test is more accurate than a blood test for Thiamine level, but both tests take time, during which time permanent damage can be done.  The World Health Organization recommends thiamine administration before test results come back in order to prevent permanent damage.   Trying thiamine hydrochloride is simple and cheap and safe and nontoxic.  If high dose thiamine doesn't work, there's no harm done.  Try thiamine supplementation if only to rule out Thiamine deficiency....while there's still time. References: Thiamine Deficiency and Brain Injury: Neuroanatomical Changes in the Wernicke-Korsakoff Syndrome https://pmc.ncbi.nlm.nih.gov/articles/PMC12535404/ Concomitant Vitamin B1 and Vitamin B12 Deficiency Mimicking Thrombotic Thrombocytopenic Purpura https://pmc.ncbi.nlm.nih.gov/articles/PMC9887457/ Please have ears to hear.
    • Aretaeus Cappadocia
      I don't know about this. Here's how I make kasha: boil water in a pot add the kasha, stir to mix, turn heat down to a gentle simmer for ~10 min, maybe 15, until tender remove from heat and serve There are lots of variations if you wish, like adding salt and butter. One variation that is really tasty, but kind of a pain, is to mix the dry kasha with a beaten raw egg, heat the dry kasha/egg mixture in the pot for a couple of minutes (to coat the kasha and cook the egg), then add boiling water and finish like the "basic" recipe above. I seldom have the patience to do all of that, though.
    • xxnonamexx
      What's the reasoning of washing and rinsing kasha buckwheat for 12 hrs
    • Aretaeus Cappadocia
      I don't clean the kasha. It does take more than a minute but less than half an hour. However I understand the need for efficiency in the morning routine. I am not familiar with the lemon thing. Another one to consider is quinoa (I buy Kirkland, labeled gluten free). It is probably better to rinse the quinoa before cooking. I don't notice it myself but a lot of people don't like unwashed quinoa because of saponins that are removed by a rinse. All of these are reheatable if you want to make a larger amount ahead of time. Also, it may be possible to use the "overnight oats" strategy with some or all of these, but I have to say I never even thought about it until writing this response.
×
×
  • Create New...