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

Am I The Only One Who Has Doubts?

StormyWen

Recommended Posts

StormyWen Rookie
StormyWen
Posted

Recently my sister-in-law (who is a physical therapist) mentioned that I might try going gluten free to see if it helped me with my joint pain/inflammation.  I was completely gluten free for 12 days and wasn't really sure if it helped with the joint pain but what I did notice was that I had more energy, no headaches, no nausea, no stomach aches and I stopped taking my prescription acid reflux pill for the last half of that time and didn't experience any symptoms.   

 

History:    My brother probably has celiac disease.  He has been gluten free for over 5 years.  If he ingests the tiniest amount of gluten by accident he gets severe joint pain, heart burn and is extremely sick.  He's mentioned to me many times that I should try going gluten free because of my GERD and migraine headaches.....but I never did.

        Almost every morning I wake up with stomach cramps or nausea.  I call this "my digestive system waking up".  I've always figured it was from an empty stomach or too much stomach acid.  I thought everyone felt this way.  I do experience extreme fatigue some days but I have always attributed that to "being a mom".  My GERD is because I'm overweight and I get migraines because they run in my family.  I have a reason for every single one of my celiac symptoms.....and it is possible that those are the reasons for them.

      

     When I was off gluten I was pretty sure I had a gluten problem, when I first went back on gluten so I could be accurately tested I was feeling yucky within 24 with heartburn and headache and actually had liquid diarrhea in my pants.  At that point I was sure I had a gluten problem.  Now I'm on day 6 of eating gluten and the symptoms are not as severe (I am taking my acid reflux prescription again) so now I'm starting to doubt there was a problem.  Maybe I'm just imagining that I don't feel good.  I just want to do the test and get it over with.  Anyone else ever doubt how lousy they are actually feeling?

    

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

Celiac.com Sponsor (A8-M):


pricklypear1971 Community Regular
pricklypear1971
Posted

I think we could fill a book with doubts.

And a second with things we thought were "normal".

Do what you need to do to figure out your health issues. Sounds like you're on the right track.

1desperateladysaved Proficient
1desperateladysaved
Posted

I keep trying to make my physicians tell me this really isn't happening to me.  Is that expressing enough doubt?  But 3 of them affirm that it is so.  I guess I need to stop doubting.

 

Maybe your body is too overwhelmed to keep sounding the alarm?  It sounds pretty clear to me that you have a gluten problem, Stormy.  You stay on board and figure it out.  Sorry, you are going through a challenge.  I hope you find definitive answers.

 

Diana

nvsmom Community Regular
nvsmom
Posted

I blew off my symptoms for my entire life after doctors told me that it was normal for me. They were wrong. Pain and discomfort is NOT normal. Try not to doubt yourself. You have definitely discovered that you have a gluten intolerance, now you just need to get blood tests to determine if it is celiac disease or the more common non-celiac gluten intolerance (NCGI).

Best wishes.

  • 2 weeks later...
NotMollyRingwald Apprentice
NotMollyRingwald
Posted

I go back and forth everyday...one minute thinking, "gluten is absolutely, without a doubt, 100%, poison to my system," and then an hour later, I'm thinking, "it's all in my head, I'm making things out worse than they are..." Blah blah blah blah blah. Ive always been a "innocent until proven guilty" kinda girl, so maybe this is my brain giving gluten the benefit of the doubt until I have more tests? Or maybe it's just good old fashioned denial. ;)

Hope you get answers soon!

Celiac Mindwarp Community Regular
Celiac Mindwarp
Posted

I wasted 9 years 'mostly wheat free'. I had a hunch it might be gluten, but didn't research it or try the diet because it looked hard.

I still even get the odd stray thought maybe it's not gluten, despite a gluten challenge where I thought I might die, and a life totally transformed by being gluten-free.

All my doctors told me I was tired because I have young children. Except my current one, who tested me.

Gluten can affect the brain and moods too, so that may be affecting you. Does brain fog sound familiar?

The fact your brother is affected makes it more likely that you are too.

It's not so bad, honestly. My joints are way better now, and all kinds of symptoms have vanished.

Stick around and ask questions

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,171
    • Most Online (within 30 mins)
      7,748
    kyle68j
    Newest Member
    kyle68j
    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

    • DAR girl
      Celiac and allergic to common subs and adds in prepared foods

      By DAR girl · Posted

      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
      Disregarded

      By Scott Adams · Posted

      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
      Paying for my own Celiac screening at WalkInLab so a positive result doesn’t become part of my medical history

      By Oldturdle · Posted

      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
      Paying for my own Celiac screening at WalkInLab so a positive result doesn’t become part of my medical history

      By plumbago · Posted

      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.
    • Scott Adams
      Does Dailymed.nlm.nih.gov site have filters for gluten?

      By Scott Adams · Posted

      PS - I think you meant this site, but I don't believe it has been updated in years: http://glutenfreedrugs.com/ so it is best to use: You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
×
×
  • Create New...