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

Not Feeling Better


sfamor

Recommended Posts

sfamor Rookie

I hate to post something so negative, but I am just in a terrible mood today. I am coming up on a year mark from being diagnosed with Celiac's and going gluten free. I have been EXTREMELY careful with the diet and doubt that I am getting gluten from any hidden sources. I just had my bloodwork redone and my IgG and IgG numbers are back within normal ranges which is promising, BUT I don't feel any better and in some ways actually feel worse. I am still just as exhausted as I used to be, but then no matter how tired I am, I have trouble sleeping and never wake up feeling rested. My brain fog is still ever present and I seem to have some neuro symptoms (unsteadiness at times, little muscle jerks). I used to have awful GERD and it got better for a little while after going gluten free, but now it's nearly as bad as it used to be. I also developed an awful new symptom after going gluten free which is that I started feeling nousceas and vomiting in the evenings a couple times a week. It feels like food is not moving through my stomach to the point of where it gets "backed up", but I actually had a stomach emptying test a few weeks ago that show the opposite- food is moving through my stomach too QUICKLY (doctor couldn't explain why this was happening and isn't worried).

I do have a b-12 and iron deficiency for which I've been getting b-12 shots and taking iron supplements so my numbers should be going up. I've been tested for diabetes and sleep apnea and thyroid issues with all negative results. Endoscopy was normal other than the Celiac's. I've also recently was tested for over 200 common allergy's (skin prick test) at the doctors and all negative. Am I missing something? Why do I still feel SO bad??


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

Have you tried eliminating soy and casien? Intolerances would not show up on allergy testing so even if you didn't show postive to them on allergy testing they may still be an issue. Also are you taking any meds or supplements? Supplement labels need to be read throughly because some contain barley or wheat grass which isn't safe for us even though the label will say gluten free. Script meds need to be checked through the maker and generics should be checked at each refill. Do you eat out frequently or at others houses that are not gluten free? Do you have a significant other who eats gluten or others who eat gluten in the home and if you do are they being careful not to CC you? Even a kiss from someone who has had a gluten beverage and food can get us if they haven't brushed their teeth. Do you have pets that eat gluten food or are you doing any repair or remodeling work at your home? There are home repair products that contain gluten and can get us through the dust.

Happyw5 Explorer

I am not much help, I just wanted you to know I understand the frustration. I have only been gluten free for 2 months, and I am feeling much better...However, I have the exhaustion and insomnia as well. I have been having many other symptoms (can't catch my breath..etc ) I have been to dr after dr and they now have me on anxiety medicine and told me to get off the internet...I know that it is my throid I am just waiting for my tsh number to get bad enough for them to treat me. ( I have all the symptoms-and family history) I think its funny though, they had no problem throwing me on anxiety meds-but they won't even try thyroid meds... Don't give up, and maybe try avoiding aspartame... I have even stopped buying chemicals to clean my house with-I really just want to get as chemical free as possible...Good Luck

Kris68876 Newbie

I am in the same boat. Diagnosed 1 year plus 3 months. I am diabetic (type I, 20 years) I also have the feeling of a full stomach late at night and when I get up in the a.m., after little or nothing to eat. Still bad diarrha and bloating every day. I believe I have been following the diet pretty well... ?maybe not, though,with hidden sources. Also wondering about maltodextrin and caramel coloring.

I am wondering if I have other allergies or intolerances. Also have had Graves Disease, so on thyroid replacement. All meds are gluten free.

Wondering if I am getting problems with gastroparesis?

Lots of questions and no answers.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,163
    • Most Online (within 30 mins)
      7,748

    Estee
    Newest Member
    Estee
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)


  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • 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.
    • Scott Adams
      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...