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

Questions


red345

On average, how many cups/soda/teas of caffeinated coffee caffeinated soda/tea per day were you consuming at the time of your diagnosis?  

20 members have voted

You do not have permission to vote in this poll, or see the poll results. Please sign in or register to vote in this poll.

Recommended Posts

red345 Apprentice

With two weeks to go until my final report, I was wondering if any of you would be willing to do me the favor of answering a series of five different questions that I will be posting over the coming 10 days. Thank you very much.


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



Celiac.com Sponsor (A8-M):



debmidge Rising Star

Red,

Please clarify: time of diagnosis even if it's years after manifest of symptoms or at the exact time the celiac disease started?

red345 Apprentice

Hello, Deb. I must apologize to you and everyone else here for the double post. If any of the mods could ever remove the other double posting I would appreciate it. This particular one I made an error with on my grammar, obviously, but I guess we'll have to go with this one.

Deb, I guess what I'm looking for is that period leading up to your diagnosis. Specifically, when you first believe that you were experiencing symptoms consistent with Celiac Sprue, how much caffeinated coffee or soda were you drinking at that time, if anything. Thanks.

PS-Now I see that we've had people vote on both of them. Add one 3-5 and one 1-3 to this pole. I have the national average #, so I want to compare that to those vote totals here, that's my purpose with this one.

celiac3270 Collaborator

I voted in both spots as 1-3, so you might want to eliminate one 1-3 vote from your tally. Oh, also, moderators can't remove the post, but if you or a mod. or whoever reports it, it will get sent to him and Scott can take care of it.

Just out of curiosity--what correlation do you expect to see between caffeine and celiac disease?

red345 Apprentice

Great. Thanks for the info celiac3270. My apologies to everyone again for the double post.

Regarding the question, celiac3270, I'm trying to backdoor one specific angle on some of the variables I'll have to work with here when asking the final four questions. I was only looking into a specific pattern w/ this question, not much of which has anything at all to do with a direct relationship between Celiac and caffeine consumption. I'll pull all of it together for you in the end, promise you that, buddy. Thanks again for the info.

flagbabyds Collaborator

I would like to say 0 because I was under 2 years old and wasn't drinking cefenated

red345 Apprentice

Open Original Shared Link

While I do believe that caffeine may be the trigger source for a limited few of you that are having an issue w/ Catecholamines, I think everyone here is smart enough to know that caffeine intake could never be implemented as the direct cause of Celiac Sprue.

As you can see, the average American would have chosen "3-5." But here, 69% of you said that you were consuming no caffeine to speak of at the time of the onset of your symptoms.

This discrepancy could mean one of many things. Perhaps those that voted were children at the time of being diagnosed. Or perhaps you have been a health conscious person along the way through life. Or maybe this poll is more accurate than one conducted by Johns Hopkins~.

Or perhaps it is that I've managed to irritate 69% of you along the way to such a degree that a limited few will do anything in their power to prove whatever it is that I intend to prove to be wrong~. Maybe one or two sub consciously want to have Celiac Sprue and/or feel the desire within to guard the current ideology to such a degree because it has worked for them, so they will deliberately do anything to throw off any hint at any other possibility.

I'm not accussing anyone of anything here. Not a bit. There's a 95% chance that this poll of 13 total votes is accurate to the surroundings. My only point is that 75% of adult Americans would have clicked 3-5 or 1-3.

If one is to judge words I have written on this forum to be representative of my true character, which would be a false belief, but if that's what you believe, I would again offer to you that of my apologies for some of those tactics along the way.

All I would ask at this point is if anyone may have deliberately voted the wrong way due to personal frustrations with me along the way, than please don't participate in the series of Yes/No questions that I will put up next week. Whether or not one person votes next week is irrelevant. As promised, I am done here in two weeks and that final report will be sent in, regardless. Than I'm done here for good, rest assured.

In the meantime, any information that I can obtain through those questions that I will be putting up next week would come as a benefit to everyone here. Whether you find my information to be credible or not, please do understand that I see something here, something big. If it all falls into place the right way, the way I suspect it to, it would help every single person here. And that's my goal, it is what I have been after all along.

To the staunch gluten free supporters, please do understand that I applaud you for your hard work, and I agree with everything you are doing. For those that have returned to full health by doing what you have, you have yourself to credit for that.

Yet, to you folks in particular, we have people that have done exactly what you have been doing for well over a year, but they are not getting better. Rather, a few are getting worse by following this diet, as it is written. What works for some does not always work for others-if we know anything at all about medicine, it should be that much, right?

You have my assurances that I will in no way ever support a conclusion that says, "Do this, do that and you can eat gluten again." I'm not the doctor, I wouldn't dare to ever recommend such a concept to anyone, you know that.

So all I ask is that for anyone that chooses to participate in the last survey I will put up next week is that you be honest w/ the answers you give. That's all I ask. And if you can't do that, than please don't take the poll. I'm going through with my paper in either case, I already have done what I've been after. But anything that can added to support any of it would be of great help, we all know that here. Thanks.


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



Celiac.com Sponsor (A8-M):



celiac3270 Collaborator

Oh, that was interesting to read--particularly about the withdrawl effects. I couldn't read it really carefully now, but I'll read it through more carefully later. I know that caffeine can be addictive, but I don't think that I consume enough for it to affect me too much. Thanks for posting, though :)

plantime Contributor

I voted 0 because I am a water drinker. I have dehydration issues, and the only way of dealing with it is to drink lots and lots of water.

red345 Apprentice

It's interesting you say that, Plantime. Have you ever been given a reason for what may be behind your dehydration? Just curious. In any sense, I thank you so much for your willingness to have voted, as well as your honesty.

One suggestion would be to request a tear test and SSA antibody if you haven't already done so just to rule out the unlikely possibility that Sjogren's may be active in your case. Take a look at those meds, too. Good luck to you.

tarnalberry Community Regular

As someone trained in research, intentionally falsifying data (by someone answering incorrectly on purpose) is pretty much anathem to me. It's just all wrong. I hope no one is doing that in this case, because even though I may not think your approach is entirely logical, you have every right not to have your data messed with. Unfortunately, your data is already skewed because this message board is not representative of celiacs, so there isn't any way to get a truely random sampling out of this board. If you're looking for a particular subset, however....

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. - 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.

    2. - 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.

    3. - 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.

    4. 0

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

    5. - 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.

  • 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)

  • Upcoming Events

  • Posts

    • knitty kitty
      @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
      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
      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
      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
×
×
  • 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.