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

New To Gluten Free Lifestyle

Ramfan

By Ramfan
in Coping with Celiac Disease

Recommended Posts

Ramfan Newbie
Ramfan
Posted

I am new to gluten free lifestyle but not new to the discomfort I have been dealing with for the past 10 years +. Just a brief history, had surgery for GERD and still had issues with my stomach afterwards. A few months after my surgery, I went to see my GI because not all my symptoms were alleviated, was told I had IBS and I changed my diet but saw no change, actually thought my problem increased. The last time I saw the GI was early this summer and was told that I might have an emptying issue and had a test performed but was told that I just needed to stay away from foods that caused bloating and the other issues I have been dealing with for years. Finally my primary informed me that I might be one of those individuals who tests negative and we tried another test in which I tested positive. As a side note, that week ran into an individual who told me they knew what I was going through because they had the same problem 10 years ago. Since starting a gluten-free diet, there is a major difference but when I ingest something with hidden gluten; sometimes reaction time happens within an hour, while other times it can take hours but the end results are the same. I have so many questions but first I would like to know if there is a relationship with food dyes. If there is a relationship, which food dyes should one avoid.

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

Celiac.com Sponsor (A8-M):


Ramfan Newbie
Ramfan
Posted
  • Author

Forgot to add that three years ago was diagnosed with tumid lupus.

eatmeat4good Enthusiast
eatmeat4good
Posted

I have not heard of those with just Celiac being sensitive to food dyes.

However, there are some of us who are also Salicylate sensitive or allergic.

If this applies to you then you would also have a problem with food dyes.

Especially yellow and red dyes.

Preservatives are also a source of salicylates.

Benzoates are notoriously reactive for those with salicylate sensitivity.

Annatto, Tartrazine and Yellow #5 and #6 are especially problematic.

Unless you suspect you are reacting to food colorings or preservatives, you should be able to eat them.

Something like 1/100 are sensitive to Salicylates. But it is an extremely limiting diet and since you are just learning to be gluten free, you might focus on that and keep salicylates in mind as a secondary intolerance.

here is a site if you are interested.

It lists a lot of chemical names for salicylates that have to be watched for if they are a problem for you.

Open Original Shared Link

Ramfan Newbie
Ramfan
Posted
  • Author

Thank you for responding and I should have clarified my situation better. Since going gluten free and shopping for gluten free items, my stomach issues have resolved but I am wondering about other things that can trigger the same reactions that I have been dealing with : bloated stomach, gurgling, gas, constipation, diarrhea, fatigue, what I like to refer to as brain fog. This past weekend attended a volleyball match and decided to have popcorn from the concession stand,what a mistake. On Sunday was at the local farmer's market and decided to have grape flavored snow cone; again another big mistake. Before each of these bad choices, I had a healthy gluten free breakfast and lunch, felt fine but afterwards here comes the bloating and the rest of the night was miserable. As for today, I am no better off and have not eaten because of the discomfort.

I will look into salicylates as my third intolerance, I also have major issues with MGS that can last up to 48 hours.

Thank you again.

Jenniferxgfx Contributor
Jenniferxgfx
Posted

Dairy can cause these problems too and a lot of celiacs can't (at least temporarily) digest dairy until they heal up.

Dairy makes me all kindsa miserable though. Lactose, casein, and whey, no part of milk is safe for me and they sneak it into all kinds of foods.

It could definitely be dye though. Too much colored food makes me feel BLEH. But who really needs dye anyway??

Welcome to the group!

Ramfan Newbie
Ramfan
Posted
  • Author

Thank you eatmeat4good and Jenniferxgfx, your suggestions makes a great deal of sense and looking at the websites on salicylates and gluten, I have my work cut out for me. Makes me wonder how we can make ourselves ill by all the additives in our foods.

Bubba's Mom Enthusiast
Bubba's Mom
Posted

It's possible you have a secondary intollerance? I found soy bothers me.

We went to an outdoor festival this past weekend. I thought I could get the kettle corn, but when I asked what kind of oil they were using it was soy. :( So I couldn't have it.

Since both of the foods you mentioned bothering you contained corn ingredients, that might be a problem for you?

Figuring out all of this can be tricky. Try keeping a log of what you eat and note any symptoms you get. The hard part is that sometimes a reaction is right away, and sometimes a day or two later.

There aren't any good tests for some of these sensitivities, other than your own detective work. :(

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

Celiac.com Sponsor (A8-M):


Ramfan Newbie
Ramfan
Posted
  • Author

Bubba's Mom,

Your suggestion of keeping a log is an excellent idea and I will start my log tomorrow. Today I cannot eat anything because of the bad choices over the weekend. I will need to find inner strength to overcome years of slowly contaminating myself and as a friend mentioned earlier, "if you can get past the first 21 days, you will succeed."

Thank you all and I am so glad I found this website.

pricklypear1971 Community Regular
pricklypear1971
Posted

Salicylates. Made me break out in a DH rash, neuro symptoms for 2 weeks. I don't typically get stomach issues, but have experienced a few intermittent ones after going gluten-free.

I'm never quite sure why or what but I know sals like colorings, preservatives literally make me nuts, break out in a rash, and have anxiety and brain fog. In short, sick sick sick.

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
      133,329
    • Most Online (within 30 mins)
      7,748
    klkarius
    Newest Member
    klkarius
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

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

  • Who's Online (See full list)

    • There are no registered users currently online

  • 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.