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
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,667
    • Most Online (within 30 mins)
      7,748
    AubreyMBSMartin
    Newest Member
    AubreyMBSMartin
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Inkie
      Tea Bags and Gluten

      By Inkie · Posted

      Thank you for the information ill will definitely bring it into practice .
    • Scott Adams
      Tea Bags and Gluten

      By Scott Adams · Posted

      While plain, pure tea leaves (black, green, or white) are naturally gluten-free, the issue often lies not with the tea itself but with other ingredients or processing. Many flavored teas use barley malt or other gluten-containing grains as a flavoring agent, which would be clearly listed on the ingredient label. Cross-contamination is another possibility, either in the facility where the tea is processed or, surprisingly, from the tea bag material itself—some tea bags are sealed with a wheat-based glue. Furthermore, it's important to consider that your reaction could be to other substances in tea, such as high levels of tannins, which can be hard on the stomach, or to natural histamines or other compounds that can cause a non-celiac immune response. The best way to investigate is to carefully read labels for hidden ingredients, try switching to a certified gluten-free tea brand that uses whole leaf or pyramid-style bags, and see if the reaction persists.
    • Scott Adams
      Inconclusive results

      By Scott Adams · Posted

      This is a challenging and confusing situation. The combination of a positive EMA—which is a highly specific marker rarely yielding false positives—alongside strongly elevated TTG on two separate occasions, years apart, is profoundly suggestive of celiac disease, even in the absence of biopsy damage. This pattern strongly aligns with what is known as "potential celiac disease," where the immune system is clearly activated, but intestinal damage has not yet become visible under the microscope. Your concern about the long-term risk of continued gluten consumption is valid, especially given your family's experience with the consequences of delayed diagnosis. Since your daughter is now at an age where her buy-in is essential for a gluten-free lifestyle, obtaining a definitive answer is crucial for her long-term adherence and health. Given that she is asymptomatic yet serologically positive, a third biopsy now, after a proper 12-week challenge, offers the best chance to capture any microscopic damage that may have developed, providing the concrete evidence needed to justify the dietary change. This isn't about wanting her to have celiac; it's about wanting to prevent the insidious damage that can occur while waiting for symptoms to appear, and ultimately giving her the unambiguous "why" she needs to accept and commit to the necessary treatment. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
    • Scott Adams
      Medication

      By Scott Adams · Posted

      Welcome to the community! Generally, for a gluten challenge before celiac disease blood tests, Tylenol (acetaminophen) is considered safe and should not interfere with your antibody results. The medications you typically need to avoid are those like ibuprofen (Advil, Motrin) or naproxen (Aleve) that can cause intestinal irritation, which could potentially complicate the interpretation of an endoscopy if you were to have one. However, it is absolutely crucial that you confirm this with either your gastroenterologist or your surgeon before your procedure. They know the specifics of your case and can give you the definitive green light, ensuring your surgery is comfortable and your celiac testing remains accurate. Best of luck with your surgery tomorrow
    • Xravith
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By Xravith · Posted

      Thank you for the advice. I’ve actually never checked for nutritional deficiencies, but for as long as I can remember, I’ve always taken vitamin and mineral supplements — otherwise my symptoms get worse. This week I stopped eating gluten to confirm whether my symptoms are really caused by it. Starting next week, I’ll reintroduce gluten — it’s sad to go back to how I was before — but at least I’ll be able to take the necessary tests properly. I think the diagnostic process will be long, but at least I’m happy that I finally decided to address this doubt I’ve had for years.
×
×
  • 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.