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

In A Bit Of A Dilemma...

holiday16

By holiday16
in Coping with Celiac Disease

Recommended Posts

holiday16 Enthusiast
holiday16
Posted

I see people asking all the time for feedback on what you do that helps get over glutenings and would really like to answer this, but not sure how because with what I take that I have found to work for me are products of a company that I am associated with. Any good way to approach this because I'm not here to "troll" for people, but at the same time would love to share what has worked for me as it may help others?

It really hit home the other night how much I would love to share this here because there is one product I take that really helps calm me down with gluten assocated anger. What happened was we were planning to go to the fair with our youngest daugher. That day the school had called because her stomach hurt really bad so we picked her up and concluded that she must have gotten a small amount gluten at the school the day before as it takes 24 hours before she gets pain. By the time we were ready to leave her stomach was better, but she went into a horrendous outburst which is what happens when she has gluten. She overreacts to every little thing, yells and cries uncontrollably and nothing will calm her down.

I aked dh to give her half of one of these tablets that I take (we had our cardiologist check the bottle before we gave it to our son so we're comfortable giving it to our kids) and told her we would not go until she took it. Left for the fair and actually had a great time with no uncontrollable emotions. On the way home I asked her if she had taken her pill since I didn't see for sure since dh gave it to her and she said she did. Then she added that it was really weird, but before she took the pill she couldn't stop crying, but after she had it she didn't want to cry anymore. That really hit home because that's how I feel when I take it for gluten associated anger. We also give it to our oldest daughter when she goes into the same thing although hers is more depression related. We used it for her before we even knew she had trouble with gluten. It's certainly not a solution for everyone as I know my sister used it for her daughter and didn't have the same success we had, but for us it's been invaluable. We don't go on any trips without it anymore :o)

So, I think you can see why I would love to share this here, but at the same time this board is very important to me and I don't want to be seen as trying to promote what I do. I also have to walk the line of following company rules and guidelines so just naming products isn't a good option either. Any advice? I feel so excited we found something that worked so well for us, but I don't want to violate rules by sharing it!

BTW, totally off topic the highlight of the night was our daughter won one of those huge prizes at the fair which has never happened in all our years of going there. She was so excited she talked for about an hour non-stop, LOL! Very cute and she's been sleeping with this huge cheetah ever since :o)

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

Celiac.com Sponsor (A8-M):


mamaw Community Regular
mamaw
Posted

Okay, now please e-mail by private message the name of the pill? Is it a drug or something natural? We also have one that gets very nasty when gluten has been bestowed near him>>>>... He also cries & becomes very negative ...........

I could use your help..

thanks

mamaw

Lisa Mentor
Lisa
Posted

Perhaps those who are interested could get that information from your website, listed on your personal profile page.

Generic Apprentice
Generic
Posted

The only website I saw on her page had to do with a a boy and a heart procedure. Am I missing something? I would love to know what this product is also.

Lisa Mentor
Lisa
Posted
The only website I saw on her page had to do with a a boy and a heart procedure. Am I missing something? I would love to know what this product is also.

I see that now. The only other thing I would suggest is direct contact.

gfpaperdoll Rookie
gfpaperdoll
Posted

a pill??? oh come on, this post sounds a little too scripted for me...

holiday16 Enthusiast
holiday16
Posted
  • Author

Momma Goose, thank you for the suggestion. I added the product page for the supplement I was talking about to my profile as my website. I guess I could leave it there for a while so people can see what I'm talking about. I just really hesitated to link a business page to a site like this as that's really not why I joined the forum.

Like I said in my original post this supplement has been invaluable to us and we can't do without it, but my sister tried it with her daughter and didn't get the same results we did. Personally, there are other things I take as well when I find I've accidentally had gluten. Certainly not a cure, but it seems to make it more bearable and give me a bit more energy. Still very miserable though as I'm sure others can relate.

The site that I had linked in my profile before I changed it was about my son. He was born with a rare heart condition and we use the internet to reach other parents that are getting ready to have a child with the same condition. When our son was born I wanted more than anything to see an example of a successful outcome and give me some hope. I didn't have that and so we decided we would share our sons story to give people hope of what the outcome could be. I was sick for so long (I'm sure others can relate!) that the page is terribly outdated, but as I'm getting better I'm getting more involved again and it's on my to do list to fix up his site. My husband added new pictures, but I haven't done any work on it since I became sick which is why it looks so disjointed.

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

Celiac.com Sponsor (A8-M):


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
      133,327
    • Most Online (within 30 mins)
      7,748
    dnamutant
    Newest Member
    dnamutant
    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.