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

Frustration and worry


joeycass123

Recommended Posts

joeycass123 Newbie

Getting really a bit concerned now and feel very lost as to what to do . Been having lots of symptoms but my GP is putting it all down to anxiety but I feel there is more to it . My symptoms are developing all the time for about 6 months now (had really bad flu back in November) all seems to have kicked off from then .........

- very tired 

- thinning legs (chicken legs) 

- losing mass (back / neck / face / legs / arms)

- hair thinning and falling out 

- undigested food in stool

- feeling depressed / very low 

- Shakiness 

- Sleeping disturbances 

- Headache 

- increased urination 

- stomach bloating 

I don’t know what to do , can anyone else relate ? I don’t know why the doctors just dismiss this so easily ..... Should I just start a gluten - free diet see if that helps? 
 

I really am feeling very lost now :( 

 


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



Celiac.com Sponsor (A8-M):



cyclinglady Grand Master

If you really suspect celiac disease as the culprit, get tested.  If your GP refuses, maybe it is time to get another GP’s opinion.  You can also see if there are over-the-counter tests where you live or a walk in lab.  

rt-116 Explorer
9 hours ago, joeycass123 said:

Getting really a bit concerned now and feel very lost as to what to do . Been having lots of symptoms but my GP is putting it all down to anxiety but I feel there is more to it . My symptoms are developing all the time for about 6 months now (had really bad flu back in November) all seems to have kicked off from then .........

- very tired 

- thinning legs (chicken legs) 

- losing mass (back / neck / face / legs / arms)

- hair thinning and falling out 

- undigested food in stool

- feeling depressed / very low 

- Shakiness 

- Sleeping disturbances 

- Headache 

- increased urination 

- stomach bloating 

I don’t know what to do , can anyone else relate ? I don’t know why the doctors just dismiss this so easily ..... Should I just start a gluten - free diet see if that helps? 
 

I really am feeling very lost now :( 

 

Hi there :)

Sorry you're feeling so lost at the moment. I have been exactly where you are. I also had ALL of the symptoms you had.

I myself thought it was anxiety and so did my friends and family whenever I voiced my concerns. I also thought maybe ibs, or my imagination. However, I finally went to the doctors after a few months of this and it was actually my very lovely doctor who encouraged I have a blood test, including a ttg test for coeliac. Turned out I was anemic and also had a ttg level of more than 128 (I think up to 7 is normal) so this was very indicative of coeliac. 

A few months later I had an endoscopy and my coeliac diagnosis was confirmed. 

I'm now 4 months into the gluten free diet and it's been gradual, but starting to feel alot of positive changes in this fourth month. 

As for you, I think you should try and get these tests before changing your diet. Of course it is very difficult at the moment with the covid situation, and I don't know where you're from, however I know my local surgery is still doing blood tests, and have a very safe system so you are not in contact with anyone except the nurse. 

As for cutting out gluten, if you do this prior to a test, any indicator of coeliac might not show up, because you haven't been eating gluten and causing the anti bodies. (I'm sure this can be phrased more scientifically, sorry!) So I'd try your gp again and see if you could get a test before changing. 

Hope this helps a little, sorry I can't offer more. There are some real experts on here who have so much more knowledge so hopefully theyll chip in too! 

As a final point, I've really really been where you are. Thought I was going mad, couldn't understand what was going on with me. But it got better and I hope it does for you too. 

Wish you all the best. 

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,576
    • Most Online (within 30 mins)
      7,748

    brp9821
    Newest Member
    brp9821
    Joined

  • Celiac.com Sponsor (A20):



  • Celiac.com Sponsor (A22):




  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Jmartes71
      Shingles is dormant and related to chicken pox when one has had in the past.Shingles comes out when stress is heightened.I had my 3rd Shingles in 2023.
    • knitty kitty
      Here's one more that shows Lysine also helps alleviate pain! Exploring the Analgesic Potential of L-Lysine: Molecular Mechanisms, Preclinical Evidence, and Implications for Pharmaceutical Pain Therapy https://pmc.ncbi.nlm.nih.gov/articles/PMC12114920/
    • Flash1970
      Thank you for the links to the articles.  Interesting reading. I'll be telling my brother in law because he has a lot of pain
    • Scott Adams
      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this category, and eliminating them is the best way to figure this out. Some people substitute gluten-free quinoa flakes for oats if they want a hot cereal substitute. If you are interested in summaries of scientific publications on the topic of oats and celiac disease, we have an entire category dedicated to it which is here: https://www.celiac.com/celiac-disease/oats-and-celiac-disease-are-they-gluten-free/   
    • knitty kitty
×
×
  • 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.