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

Can It Hurt?

JustLovely9216

Recommended Posts

JustLovely9216 Rookie
JustLovely9216
Posted

At this point, I am self diagnosed. I feel a million times better without gluten in my diet and when I make a mistake...a pay for it. I know I am either Celiac or gluten intolerant. As all of us know in order for me to get more testing I would need to go back on a gluten diet...I don't think so!!!

So I am wondering...do any negative side effects exist for those of us who chose to Gluten-Free...who (although I DOUBT this is the case) do not have Celiac or gluten intollerance? The only down side I can see by not perusing this is possibly missing a correct diagnosis down the line.

Opinions please?!?!?!

Thanks all!

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

Celiac.com Sponsor (A8-M):


TrillumHunter Enthusiast
TrillumHunter
Posted

There are some potential difficulties. If you get sick with in future and tell drs you are gluten-free without a diagnosis, you may find them reluctant to treat you until you challenge it. You may find yourself doubting your self diagnosis if other health issues come up. Your family and friends may be unwilling to accept your self diagnosis.

I think it's fine to choose not to eat gluten based on how you feel. It's no different than not eating meat or dairy to me. It's a choice.

The diet itself can be healthy or not. There's plenty of crappy gluten-free foods out there. But is you eat a healthy whole foods diet with lots of variety and only occasional indulgences in rich gluten-free treats, you'll be healthier than most.

sandsurfgirl Collaborator
sandsurfgirl
Posted

I'm trying to imagine a scenario where docs wouldn't treat you based on your gluten free diet and I can't think of one. If you get sick down the line, then that will be a new illness and they have to treat it. Celiac disease can cause other things in your digestive system, but those are still diseases in and of themselves. Most of the time the doctors don't make the connection between celiac and other diseases anyway so I can't figure out a time when they would refuse you treatment based on what you are eating. Heck they hardly ask about your diet anyway.

A gluten free diet won't cause illness so a doctor would have no reason to question your judgment about what you choose to eat. If you were a vegetarian they wouldn't tell you to eat meat before they treat an illness. If you were a Muslim they wouldn't make you eat pork.

The fact that you get sick when you eat gluten is your answer right there that you do have celiac or gluten intolerance. People don't get sick from eating gluten unless they have one of those things.

sandsurfgirl Collaborator
sandsurfgirl
Posted

I wanted to add that if I were you I wouldn't tell family and friends you are self diagnosed. Tell them you have celiac disease. They don't need to know all the details.

lizzers Newbie
lizzers
Posted

At this point, I am self diagnosed. I feel a million times better without gluten in my diet and when I make a mistake...a pay for it. I know I am either Celiac or gluten intolerant. As all of us know in order for me to get more testing I would need to go back on a gluten diet...I don't think so!!!

So I am wondering...do any negative side effects exist for those of us who chose to Gluten-Free...who (although I DOUBT this is the case) do not have Celiac or gluten intollerance? The only down side I can see by not perusing this is possibly missing a correct diagnosis down the line.

Opinions please?!?!?!

Thanks all!

I think for me it was important to go back on the gluten-filled diet in order to get some sort of acknowledgment that what I was feeling was real. And it does impact a lot of other health issues as well - you could be anemic, have a low B12, have crappy teeth, etc that are a direct result to the diagnosis, and wouldn't be followed-up upon unless a doc knew you had gluten issues... but more importantly I think it is important to rule out other things as well - are you sure you don't have something more like crohns or colitis? for me I had a bunch of questions, and finally getting a doctor to answer them and have faith in me helps heaps.

And I've seen exactly what sandsurfgirl is talking about with me- because I'm overweight, not the stereotypical 'underweight' all along the way my self-diagnosis was questioned and questioned. it wasn't until i had a positive blood test, and then a funky biopsy that my docs started to believe that OMG someone can be FAT and have celiac.

Also, for Canadians, if you are diagnosed, you can claim the cost of your gluten-free foods on your medical deduction on your taxes, so that is a small benefit, but it is something.

ciavyn Contributor
ciavyn
Posted

I'm undiagnosed, and my doctor didn't question it...of course, I haven't had anything major. Just requested that my medication for an infection be gluten free. I've been glutened twice since getting off of it, and I'm confident I have issues with it. I also have some other intolerances that I knew about before. As TrillumHunter pointed out -- if you eat a healthy diet, and keep the gluten free bad food to a minimum, who's to say it's bad for you? I simply tell those who don't know me that I have issues with gluten -- it most closely mirrors the symptoms of ceiacs, so sometimes I say that -- and immediately, I get a story about someone in the family who is having similar issues and thinks they have celiacs...it's definitely becoming more common.

Should you get a diagnosis? That's up to you. There are certainly benefits to having it! But I'm not wiling to be sick for three months and pay money for someone to tell me what I already know: that I have issues with gluten, when I can take care of it myself. You have to decide what works best for your life.

nmlove Contributor
nmlove
Posted

Though I'm fine with self-diagnosing, there are two things I have trouble with: getting it through to certain family members and follow-up care. The family members are certain people, ones that try for my sons but forget about me (dairy/soy-free too). I can deal with that. It's just annoying. The other thing is the follow-up care. Both my sons, officially diagnosed, have great follow-up care. I had negative blood work but positive diet response. I guess at my annual physical I can request blood work to check on vitamins. I eat pretty darn healthy, take a multi + calcium as back-up but I still wonder.

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

Celiac.com Sponsor (A8-M):


JustLovely9216 Rookie
JustLovely9216
Posted
  • Author

I def. hear what everyone is saying!

I would LOVE to have a diagnosis for my peace of mind...so I had it right there in black & white that I'm not crazy!!

I suppose my hope is that in going Gluten-Free and taking supplements now and eating a mainly whole-foods based diet I will be able to heal myself. I will still do my yearly blood tests and see about checking Vitamin levels...never thought of that!

I just feel so much better...so I figured that unless gluten played some crucial role in a typical (non-celiac or gluten intollerant) persons diet...I would just remove it and live happily ever after! (Untill going to new neighbors house after a 1 hour conversation on my dietary needs and being served "all purpose flour" which is "not wheat right!?!?". And yes...I ate the stupid ball fried in the flour...and yes...I need to learn how to say no...oh boy do I ever!!!)

GFinDC Veteran
GFinDC
Posted

The main thing gluten does is make it easier for bread dough to rise. Or for wall paper paste to be nice and sticky. Gluten does not have to be in anyone's diet for them to be healthy though. There are plenty of other nutritious grains and foods for people to eat.

Your friends may mean well, but it is up to you to manage your diet and health. Most people are just clueless when it comes to gluten and where it can be hidden in foods. I once asked a waiter in an IHOP if they had any gluten free pancakes. He told me all their pancakes are gluten free! Sure, right, I don't think so. :)

VickiLynn Newbie
VickiLynn
Posted

If you know you feel better on a gluten free diet, with or without an official diagnosis and your doctor doesn't acknowledge that fact, then you need a new doctor. This disease is finally getting "out there" and more and more people are realizing that they truly are what they eat, which means that some people may not choose to get a diagnosis or cannot afford to. The bottom line is to eliminate what is causing the problem. My father's doctor did not believe him when he told her he felt he had Celiac and she felt no need to test him. I had been diagnosed 10 years prior to that. I helped him learn to eat to get well and it changed the last 5 years of his life.

sandsurfgirl Collaborator
sandsurfgirl
Posted

The wallpaper paste thing cracked me up! :lol:

There are many cultures in the world who don't have the high gluten diets that we have. And in the past our diets weren't as gluten heavy as they are now because there weren't as many additives in foods. If there weren't so many gluten based additives the diet would be so much easier!!!

capit Newbie
capit
Posted

I would LOVE to have a diagnosis for my peace of mind...so I had it right there in black & white that I'm not crazy!!

I just feel so much better...so I figured that unless gluten played some crucial role in a typical (non-celiac or gluten intollerant) persons diet...I would just remove it and live happily ever after! (Untill going to new neighbors house after a 1 hour conversation on my dietary needs and being served "all purpose flour" which is "not wheat right!?!?". And yes...I ate the stupid ball fried in the flour...and yes...I need to learn how to say no...oh boy do I ever!!!)

I kind of wish I had the official black and white proclamation too, lol...my blood tests were negative, and false negatives apparently aren't uncommon, but eating wheat every day was getting pretty painful, so my nurse practitioner thought it best that I scrap the diagnostic process, stop eating wheat and get better. That's ultimately the goal, right? I was tempted to just go off gluten too when I first realized the connection, and I feel that going on gluten for a few months for the blood tests was somewhat of a painful waste, but I'm glad I brought the subject up with my nurse practitioner and doctor. There might have been some other cause that I wouldn't have known about, and they've recorded that eating wheat makes me ill.

It is hard to turn things down when people offer them, though! Good luck and be strong!

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.