Jump to content

  • Welcome to Celiac.com!

    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):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Salicylate Sensitivity--Help?

Strawberry-Jam

Recommended Posts

Strawberry-Jam Enthusiast
Strawberry-Jam
Posted

Okay, so. I am suspecting a salicylate sensitivity because it is the one thing I have not cut out thru elimination diet testing (I had tea every morning, olive oil with every meal) thus far. Also, I had a severe reaction to some tahini, I think, and unless it is specifically a sesame intolerance I can't think of what the other problem could be.

I want to test for it, so I have bought only foods that are on the low or negligible lists of sal. content. Brussels sprouts, white potatoes, peeled pears, cashews, sunflower seed butter, rice, meat, eggs, and so forth. I know I cannot have gluten, soy, or dairy, and am currently avoiding all maize and legumes as well until I feel better and can test them properly.

My questions follow: salicylate sensitivity is obviously different from coeliac in that trace amounts can't hurt you, since it is impossible to cut out completely. There is some kind of threshold. How do you find out what your threshold is? I have some carrots and parsnips here and read that they are on the "moderate" amounts of sal. list. I also have some mushrooms because I had a craving and they were on sale. How often can you have something in the "moderate" list and still be eating low sal? once every few days? once a week? Can you ever have something high in salicylates--if, for example, I wanted a cashew butter sandwich with strawberry jam (on gluten-free bread, of course), could I have one, as long as I ate really low sal for several weeks beforehand and/or afterwards?

Also, how long should I eat extremely low-sal before I should start feeling better, and how do you suggest I test for salicylate sensitivity once I do feel better, in case I feel better for another unrelated reason? Lots of olive oil for a few days? Tea and tahini again?

Any help or advice from salicylate-sensitivity sufferers would be much appreciated!

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

Celiac.com Sponsor (A8-M):


AVR1962 Collaborator
AVR1962
Posted

I am also sensative to salicylates. By going off I felt better in just a few days. Personally, I was having an itching reaction.....no bumps, just itchy everywhere. What I did may or may not work for you, I do not think I am as sensative as some. I eliminated the high sal group plus canned green olives (something I was eating a bit of), olive oil (again eating regularly), and coconut products (which I had been eating). All my itching went away so I tried cucumbers without skins and had no reaction. I have been able to eat pears with the skins. However, I am only trying one thing at a time, once a week. I did have a reaction to tomato juice so I will just stay away from all tomatoes. I like the organic canola oil even better than the olive oil I was using before so that has been replaced. I drink a mango tea which doesn't bother me but have not tried my peppermint tea since the elimination.

Strawberry-Jam Enthusiast
Strawberry-Jam
Posted
  • Author

My reactions are primarily neurological: fatigue, headaches (esp. in the face & eyes), weird vision, insomnia, depression/crying spells. On top of that I have muscle aches in my biceps & calves, intermittent neck/shoulder pain, and gastro symptoms like gas (burping a lot, but some intestinal gas as well), soft stools, nausea, and very intense and impossible to get rid of acid reflux. (I will have reflux even during a day of fasting--eating NOTHING and drinking only water in small amounts at a time.) The reflux would get better and worse, but never go away.

I've had weird days where everything itches and it won't stop in the past, but not recently.

Unfortunately my list of symptoms is the symptoms for EVERY SINGLE FOOD INTOLERANCE. So it is hard to figure out which intolerances I actually have and which ones I don't.

Thanks for the input though... I have made a few mistakes recently with possible gluten and dairy CC so it may take longer than a few days to recover, but I am sticking to meat and rice for now. Might have eggs for breakfast tomorrow.

I am also having rooibos (redbush) tea, but have read that it is low-sal because it is naturally decaf and not technically a tea but just a bush that they make tea from.

pricklypear1971 Community Regular
pricklypear1971
Posted

It is enough for me to stay away from preservatives and food colors. I think coconut bothers me a bit.

I get stomach upset, used to get a DH flare, and neuro upset from them. Something in commercial bakery icing (filling) gives me the worst stomach cramps and D -the kind that makes you want to crawl in a hole and die.

RollingAlong Explorer
RollingAlong
Posted

You might want to check out the salicylate sensitivity forum here:

Open Original Shared Link

They suggest some supplements and strategies that may be helpful.

MarciaD Newbie
MarciaD
Posted

You might also want to check out Open Original Shared Link

AVR1962 Collaborator
AVR1962
Posted

My reactions are primarily neurological: fatigue, headaches (esp. in the face & eyes), weird vision, insomnia, depression/crying spells. On top of that I have muscle aches in my biceps & calves, intermittent neck/shoulder pain, and gastro symptoms like gas (burping a lot, but some intestinal gas as well), soft stools, nausea, and very intense and impossible to get rid of acid reflux. (I will have reflux even during a day of fasting--eating NOTHING and drinking only water in small amounts at a time.) The reflux would get better and worse, but never go away.

I've had weird days where everything itches and it won't stop in the past, but not recently.

Unfortunately my list of symptoms is the symptoms for EVERY SINGLE FOOD INTOLERANCE. So it is hard to figure out which intolerances I actually have and which ones I don't.

Thanks for the input though... I have made a few mistakes recently with possible gluten and dairy CC so it may take longer than a few days to recover, but I am sticking to meat and rice for now. Might have eggs for breakfast tomorrow.

I am also having rooibos (redbush) tea, but have read that it is low-sal because it is naturally decaf and not technically a tea but just a bush that they make tea from.

This is all very confusing at first trying to figure which symptoms is linked to what, what is safe and what is not. I hear you loud and clear on that one. Here is a link that might help you relate the symptoms Open Original Shared Link jump down to the symptoms.

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

Celiac.com Sponsor (A8-M):


Strawberry-Jam Enthusiast
Strawberry-Jam
Posted
  • Author

new symptoms?

when I took off my shirt today I found I had bled under the skin where my bra strap was. only on one arm, but it was a little alarming.

I have the urgency to pass water thing sometimes. I don't have all the symptoms but a cherrypicked list.

Anyone else have advice or experiences to share?

Archived

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

Go to topic listing

  • 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. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      @Jane02, I hear you about the kale and collard greens. I don't do dairy and must eat green leafies, too, to get sufficient calcium. I must be very careful because some calcium supplements are made from ground up crustacean shells. When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly. This is safe...
    2. Jane02
      - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency. I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently...
    3. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Hello, @Jane02, I take Naturewise D 3. It contains olive oil. Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets. Fractionated coconut oil is not the same as coconut oil used for cooking. Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the...
    4. Scott Adams
      0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

      until
      Hello! Join me and treat yourself to a four-day, three-night restorative gluten-free retreat in a peaceful, private coastal retreat setting near Penobscot Bay in Maine. Dates: April 10-13, 2026 Enjoy engaging classes...
    5. Scott Adams
      - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,331
    • Most Online (within 30 mins)
      7,748
    Kristy2026
    Newest Member
    Kristy2026
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Scott Adams · Posted

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By trents · Posted

      Contact them.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.