Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Newbie With A Question...


jukie

Recommended Posts

jukie Rookie

I’ve been lurking for the last few weeks and just wanted to say how much I appreciate all the information that’s here. I’ve not yet been formally dx’d, but a positive antigliadin AB along with an extensive personal and family history led me to the possibility of gluten sensitivity and/or celiac disease.

As I am desperate for answers and relief, I’m ready to try anything that might help including a gluten-free diet. But since the diet interferes with test results, I’m doing all that first – cuz if the gluten-free diet works, I’m never going back…not even for a challenge!

Anyway, I’m still awaiting biopsy results but am planning to go gluten free either way. My (possibly stupid) question is why does every medical professional freak out when I mention going gluten free? Since the testing isn’t perfect and can’t definitely rule anything out, what possible harm could a gluten-free diet do once the testing is complete? Is there some horrible consequence to the diet that I’m missing??? :huh:

TIA…you all are awesome!


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



Celiac.com Sponsor (A8-M):



kbtoyssni Contributor

I can't think of a reason not to go gluten-free. Maybe your doctors are trying to spare you the "pain" of eating gluten-free if you don't have to. But if it makes you feel better, go for it! The pros of the diet GREATLY outweigh the cons.

eKatherine Apprentice
My (possibly stupid) question is why does every medical professional freak out when I mention going gluten free?

Actually, being doctors means they have spent many years working such long hours that they have no choice but to eat the sorts of foods available in vending machines, fast food joints, and hospital coffeeshops. They probably have no idea what the lifestyle of a person who consumes whole foods, freshly prepared might be. They can't even imagine it being possible.

Plus, they've had the "whole grains good" thing hammered into their heads as much as if not more than we have. They're typical Americans in many ways, so it's gotten to the "whole grains good, more whole grains better" point, and the record is broken, you can't break in and stop it without actually making them think.

Making people think is a hard thing to do. Good luck.

Ursa Major Collaborator

Since you have had the biopsy done, and are determined to try the diet regardless of results, why wait for the results to come in? There is no good reason, in my opinion, to not go gluten-free RIGHT NOW!

The gluten-free diet is extremely healthy and will not lead to negative health consequences, unless you start eating a whole lot of gluten-free junk food, which is high in starch and sugars (like other junk food, of course).

No doctor has the authority to forbid you to go on a gluten-free diet, it's entirely your choice and none of their business.

I hope being gluten-free will make you feel better!

ravenwoodglass Mentor
My (possibly stupid) question is why does every medical professional freak out when I mention going gluten free?

Because you won't be giving them any more money after you go gluten free, you won't need them. :ph34r::rolleyes::D

jerseyangel Proficient

Another reason is that a lot of doctors think that the gluten-free diet is impossibly hard and therefore, won't even suggest it. Clueless <_<

nettiebeads Apprentice

No horrible consequences. Could be all positive. I don't understand their thinking - There lots of medical conditions regulated by diet - not just diabetes. And believe it or not, I read where the newest thinking is that if your body responds positively to the gluten-free diet, then do it. I personally wouldn't wait until you got the results. Go gluten-free now as of this minute. See what happens. It sure couldn't hurt!

Annette


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



Celiac.com Sponsor (A8-M):



jkmunchkin Rising Star

I can't think of a single reason why you shouldn't go gluten-free if you feel better eating that way regardless of what the tests say.

Like some of the others said, it sounds like your doctors are just trying to "spare you the pain of eating gluten free."

I think for people who don't require a gluten free diet the thought of having to alter your diet the way we do is unthinkable. I know when I was diagnosed the thought of a life without Chinese food, donuts, cupcakes, etc. sent me into tears, but I quickly learned that for starters I can still have all those things - just sometimes with a little extra planning or effort. But above all no food is worth going back to the way I used to feel. People just don't seem to understand that.

Matilda Enthusiast

..

Guest nini

the gluten free diet, when done right, can be extremely healthy. There is no negative reason I can think of to keep you from going gluten-free right now.

You can still eat all your favorite foods (gluten-free versions of course), it just takes a little more planning and preparation and finding the products that you like the best. As more and more people CHOOSE to go gluten-free, the market will reflect that and we will have even more great choices for food.

Lisa Mentor
Because you won't be giving them any more money after you go gluten free, you won't need them. :ph34r::rolleyes::D

I 100% agree with Tiffany, there is no money in drugs that may kick back to the doctors and the phar. companied...which hinders research on Celiac Disease. It is 100% controlled by diet... no drugs, therefore, no research.

Pitts, ain't it.

Lisa

jukie Rookie

Okay, that’s kinda what I thought…all good reasons for them, but not for me.

1) So right, Katherine! It’s what they’ve been taught (and they don’t really understand nutrition anyway).

2) I won’t need them and give them anymore $$$. Definitely a good one, ravenwoodglass!

3) They think it’s too hard like Patti said. But I’m with you, Jillian…I can/will do anything that makes me feel better, and the fact that it doesn’t involve drugs or surgery is a bonus!

4) Very true, Matilda – they might think I’m a hypochondriac. Of course, some of them already do since so few have been able to help me in 20+ years.

5) And of course Lisa is so right that there’s no money in drugs. Like Nisla’s sig says, “It's sad that M.D. has come to mean "More Drugs" and not Better Health.”

The ONLY reason I haven’t gone gluten free already is that I expect the doc to order the complete celiac blood panel if I do. In the meantime I’m reading and learning everything I can while restocking the pantry and planning some new meals. There could be a little bit of denial involved, but the reality is that I’d be relieved to finally have an answer and/or start feeling better. Either way, thanks to each and every one of you who responded. I appreciate the encouragement and support. Wish me luck – if not with the doctor them hopefully with the diet!

Thanks again!

tiffjake Enthusiast
I’ve been lurking for the last few weeks and just wanted to say how much I appreciate all the information that’s here. I’ve not yet been formally dx’d, but a positive antigliadin AB along with an extensive personal and family history led me to the possibility of gluten sensitivity and/or celiac disease.

As I am desperate for answers and relief, I’m ready to try anything that might help including a gluten-free diet. But since the diet interferes with test results, I’m doing all that first – cuz if the gluten-free diet works, I’m never going back…not even for a challenge!

Anyway, I’m still awaiting biopsy results but am planning to go gluten free either way. My (possibly stupid) question is why does every medical professional freak out when I mention going gluten free? Since the testing isn’t perfect and can’t definitely rule anything out, what possible harm could a gluten-free diet do once the testing is complete? Is there some horrible consequence to the diet that I’m missing??? :huh:

TIA…you all are awesome!

If you have already had the biopsy, then I say "go for it!". I haven't had the biopsy (because an Lame Advertisement test told me to avoid gluten LONG before I knew what Celiac was and so I had already been gluten-free at that point) and when I try to eat gluten again I am too sick to handle it, so I quit after a few days. I wish I would have known to wait until the biopsy.

About the docs, that is a good question. I have never heard a doc say "Oh no, don't cut out meat!" or "Oh no, don't cut out sugar!" but when it comes to wheat (oat, barley, malt, rye) they act like we are missing a vital part of a healthy diet! I think it is because they were taught that wheat is good for you and healthy, and also that they know that it would be SOOOOOOOO hard for you to give up. Geez, if my doc felt like I did when I had wheat, he would said "Girl! You will feel sooo much better!!!!!!"

queenofhearts Explorer
If you have already had the biopsy, then I say "go for it!". I haven't had the biopsy (because an Lame Advertisement test told me to avoid gluten LONG before I knew what Celiac was and so I had already been gluten-free at that point) and when I try to eat gluten again I am too sick to handle it, so I quit after a few days. I wish I would have known to wait until the biopsy.

About the docs, that is a good question. I have never heard a doc say "Oh no, don't cut out meat!" or "Oh no, don't cut out sugar!" but when it comes to wheat (oat, barley, malt, rye) they act like we are missing a vital part of a healthy diet! I think it is because they were taught that wheat is good for you and healthy, and also that they know that it would be SOOOOOOOO hard for you to give up. Geez, if my doc felt like I did when I had wheat, he would said "Girl! You will feel sooo much better!!!!!!"

I HAVE heard doctors say not to cut out meat... when I went veggie about 35 years ago... but I think they know better now. Maybe in 35 years or so they'll have learned that gluten is not a necessary food either!

Leah

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,175
    • Most Online (within 30 mins)
      7,748

    Chels22
    Newest Member
    Chels22
    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

    • Heatherisle
      Daughter has started gluten free diet this week as per gastroenterologists suggestion. However says she feels more tired and like she’s been hit by a train. I suggested it could be the change to gluten free or just stress from the endoscopy last week catching up with her. Just wondering if feeling more tired is a normal reaction at this stage. I suppose it’s possible some gluten might have been present without realising. Have tried to reassure her it’s not going to resolve symptoms overnight
    • DAR girl
      Looking for help sourcing gluten-free products that do not contain potato or corn derived ingredients. I have other autoimmune conditions (Psoriatic Arthritis and Sjogrens) so I’m looking for prepared foods as I have fatigue and cannot devote a lot of time to baking my own treats. 
    • Scott Adams
      I am so sorry you're going through this. It's completely understandable to feel frustrated, stressed, and disregarded after such a long and difficult health journey. It's exhausting to constantly advocate for yourself, especially when you're dealing with so many symptoms and positive diagnoses like SIBO, while still feeling unwell. The fact that you have been diligently following the diet without relief is a clear sign that something else is going on, and your doctors should be investigating other causes or complications, not dismissing your very real suffering. 
    • Oldturdle
      It is just so sad that health care in the United States has come to this.  Health insurance should be available to everyone, not just the healthy or the rich.  My heart goes out to you.  I would not hesitate to have the test and pay for it myself.  My big concern would be how you could keep the results truly private.  I am sure that ultimately, you could not.  A.I. is getting more and more pervasive, and all data is available somewhere.  I don't know if you could give a fake name, or pay for your test with cash.  I certainly would not disclose any positive results on a private insurance application.  As I understand it, for an official diagnosis, an MD needs to review your labs and make the call.  If you end up in the ER, or some other situation, just request a gluten free diet, and say it is because you feel better when you don't eat gluten.      Hang in there, though.  Medicare is not that far away for you, and it will remove a lot of stress from your health care concerns.  You will even be able to "come out of the closet" about being Celiac!
    • plumbago
      Yes, I've posted a few times about two companies: Request a Test and Ulta Labs. Also, pretty much we can all request any test we want (with the possible exception of the N protein Covid test and I'm sure a couple of others) with Lab Corp (or Pixel by Lab Corp) and Quest. I much prefer Lab Corp for their professionalism, ease of service and having it together administratively, at least in DC. And just so you know, Request a Test uses Lab Corp and Quest anyway, while Ulta Labs uses only Quest. Ulta Labs is cheaper than Request a Test, but I am tired of dealing with Quest, so I don't use them so much.
×
×
  • Create New...