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

I'm Done

Razzle Dazzle Brazell

Recommended Posts

Juliebove Rising Star
Juliebove
Posted

Razzle,

Have you had any luck with digestive enzymes? (I really liked Enzymedica Digest Spectrum or Digest Gold.) The reason I ask is because fat malabsorption can be caused by pancreatic insufficiency. You might wanna give them a try if you haven't!

Hugs!

Laura

But do be careful what you take. I was taking PDA and it was fine but have since switched to Swanson's HCL. Same thing but just not quite as strong. Much cheaper though and so far so good. I have to avoid anything with Bromelain because that gives me horrible gas and stomach pains. And I foolishly tried Pancreatin which is something one might need with pancreas problems. Aside from the diabetes, I don't think I have pancreas problems and that stuff left me in horrible pain. I think it made me vomit as well but can't remember. Then I looked it up and discovered that it should only be taken if one has a known pancreas problem.

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

Celiac.com Sponsor (A8-M):


Lady Eowyn Apprentice
Lady Eowyn
Posted

Hi Razzle

Just a small comment ( and yes, I do understand how you feel) - I have in the last week discovered coconut water, sold in health stores. Read a mention of it on this forum.

It's fabulous :) and really seems to knock out cravings with a small glass. I find it quite sweet as well and very hydrating.

Nutrient rich and probably anti-candida too - worth a try.

Marc49 Explorer
Marc49
Posted

Wow Marc49. I find your post totally useless and disrespectful. Perhaps the fact that five days a week I spend a third of my day at work means I am a workaholic. The word obsession implies that I give unrelenting and undeserved attention to what is going on in my body. I only have one body, one life and when what is going on with my body impairs my ability to suffer this life, then it is 100% deserved attention. When what is going on in my body makes it impossible to provide myself safely with mmy most basic neccessity to survive (nutrients), it is gonna get my attention.

And not that it is truly a point worth discussing but I will humor you: there were plenty of times I decided that I would just pretend like nothing was wrong and it just resulted in a lot of pain and suffering and a cascade of torturous symptoms that sapped my ability to function or even breathe or remmemmber what day it was or spend time with my family. Maybe you're right, if I quit dwelling on it and instead decide to starve myself rather thhan think about how to feed myself I will feel better for a day or two.

Obviously you are looking to take offense at what I said when it was not meant in that way.

First off YOU start a thread titled "I'm Done."

Sounds quite positive to me.

Secondarily, I tried to show you what one test was about that you claimed to be unaware of, and then I went on to say what I HAVE seen in a few folks before.

One of my best friends almost drove himself insane looking at medical info.

Best wishes, and you will never see another response from me, so no worries. :)

Razzle Dazzle Brazell Enthusiast
Razzle Dazzle Brazell
Posted
  • Author

Marc49

First off the fact that the thread was entitled Im Done bears no significance to whether it was appropriate to come on a thread with someone who feels as if they want to give up saying that they are obsessed and implying that they were sick because they were obsessive about their health.

I already know what ANA is by the way.

Obviously you typed what you meant and posted it. I doubt the keyboard took over and forced you to type the words "when ANYONE obsesses on a health issue..." You then go on to express that if I do not think about it I might feel better.

I hope you did not mean to be offensive but you ought to be more careful with the words you type because I know for certain that I am not the only one on this forum who would take offense at someone implying that their sickness is in any way in their head or that they could think or unthink themselves to no longer being ill with the things they put in their mouth.

I started this thread to express how I felt like giving up trying to avoid all the things that make me sick not because I had decided to quit making myself sick in my mind.

love2travel Mentor
love2travel
Posted

I kinda know what Marc is saying in a way. Just bear with me. I have had severe back pain for years and it was nearly all I thought about. I became obsessed and allowed it to control me. Not a good place to be. Believe me - I am a researcher to the nth degree, nothing wrong with it. But I took it to extremes. Now I refuse to let it control my life. Not saying you are at all. Just relating my own experience. :) Though I continue to suffer daily, I feel liberated from the firm grip it had on me.

ETA: That said, I strongly believe we must be our own advocates and learn as much as we can about celiac and other things that plague us. This can be as much a mental game as physical. At least for me. When I am preoccupied and busy with interesting things, my pain lessen. Distraction really helps me. So, I make sure there are tons of (good) distractions in my life. ^_^

Razzle Dazzle Brazell Enthusiast
Razzle Dazzle Brazell
Posted
  • Author

What brand coconut water do you use Lady? I tried some one time and it was disgusting. Maybe it is because I used to live in Hawaii and know what fresh coconut off the tree tastes like idk

Lady Eowyn Apprentice
Lady Eowyn
Posted

Hi Razzell

I have Vitacoco and Cocofina.

Have never had it before and when I first tasted it thought Eeww! - slightly odd and rather sweet :blink:.

It must be an acquired taste because 24 hours later it was Yum! - give me more :D .

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

Celiac.com Sponsor (A8-M):


Chaff Explorer
Chaff
Posted

Did someone mention fructose intolerance? Could be that. It's a common thing for us within 2 years of going gluten-free while everything heals. A total mind game to suss out, though, since its in, like, everything.

Try plain white rice as your only carb, no sweet things at all, and see if it helps. If it does, PM me and I can suggest some low fructose stuff and dextrose sources that would be safe. Sounds like you're close to that diet already, too.

kareng Grand Master
kareng
Posted

Did someone mention fructose intolerance? Could be that. It's a common thing for us within 2 years of going gluten-free while everything heals.

I haven't seen any info on that.

Chaff Explorer
Chaff
Posted

Just do a search on the boards here. A lot of people say fructose gave them problems initially. But not most people for sure.

kareng Grand Master
kareng
Posted

Just do a search on the boards here. A lot of people say fructose gave them problems initially. But not most people for sure.

I think we sometimes forget that these boards do not represent the majority of Celiacs. Most of them are not on forums and boards.

So I think to state as a fact that "It's a common thing for us within 2 years of going gluten-free" is a bit misleading.

If you have read a good article about that, then we would love a link to it.

Chaff Explorer
Chaff
Posted

Well, I'm not a doctor. And most folks go off gluten and do just fine. But if you want robust studies on food intolerances connected to leaky gut, I would also love very much to see them. I'm desperate for serious medical research into the subject. Until then, we have outlier anecdotal evidence. It's not ideal.

The fact is that fructose malabsorption issues are still not well understood, and their connection to the increased intestinal permeability brought on by damage due to gluten in undiagnosed celiacs has never been a direct subject of scientific research. I do wish they'd get in the ball with it, honestly. Until then we celiacs with odd problems like this are left to look to each other for hunches and advice yo go to our doctors with.

I'm taking my hunches to the Mayo Clinic next month for testing, and have sent away for genetic testing as well to look for other possible causes, since what I have is unusually severe (though two others here have told me they had the same going gluten-free). But I wouldn't have known where to start without folks here passing along their ideas and experiences.

All of which is to say, yes, I totally agree with you.

1desperateladysaved Proficient
1desperateladysaved
Posted

What brand coconut water do you use Lady? I tried some one time and it was disgusting. Maybe it is because I used to live in Hawaii and know what fresh coconut off the tree tastes like idk

I like Amy and Brian Coconut Juice brand the best. Blue Monkey is second. If you consider it tastes like water, it is wonderfully sweet. However, if you are expecting soda like flavor, it will be a big disappointment!

Chaff Explorer
Chaff
Posted

I think we sometimes forget that these boards do not represent the majority of Celiacs. Most of them are not on forums and boards.

So I think to state as a fact that "It's a common thing for us within 2 years of going gluten-free" is a bit misleading.

If you have read a good article about that, then we would love a link to it.

OK, started a new thread on that here: https://www.celiac.com/forums/topic/99944-fructose-intolerances-what-does-the-medical-literature-say/

  • 2 weeks later...
cavernio Enthusiast
cavernio
Posted

If you have a dry mouth your food won't have as much taste, and dry mouth can be caused by vitamin deficiencies in a few of the B's and A. Vitamins take a long time to build back up if you're low, especially if you have damaged intestines.

Also, I could only find a local gluten-free buckwheat flour, everything else had cc.

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.