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

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
      131,083
    • Most Online (within 30 mins)
      7,748

    Terry norris
    Newest Member
    Terry norris
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)

    • There are no registered users currently online

  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Wheatwacked
      With all the bloodwork, have they checked your vitamin D?  What is it?  Celiac Disease causes malabsorption, so vitamin deficiencies are common.  Doctors rarely mention this. B1 Gastrointestinal beriberi, a severe thiamine deficiency, is characterized by symptoms including anorexia (loss of appetite), abdominal discomfort and pain, nausea, and vomiting. Other potential symptoms like abdominal fullness, indigestion, and constipation can also occur. These gastrointestinal issues may resist standard treatments, signaling a need to consider thiamine deficiency.  It is commonly believed that thiamine deficiency is not an issue in the western cultures, so rarely address by doctors. Doses of thiamine above 100 mg several times a day will quickly show improvement.  Borderline deficiency will come and go depending on what your eat.  Carbs use it up faster, so for example if you eat a lot of carbs today, tomorrow you may have symptoms.  Thiamine (Benfothiamine is a synthetic fat soluable thiamine) is water soluable, we only store maybe a weeks worth, and there is no upper limit on how much you consume.  Excess is stored or peed away.   For them it isn't a oroblem.  LOL.  They just say some people are like that and see the next patient.  
    • sillyac58
      I used the cream for 4 days as prescribed 3 years ago. While I cannot be sure it triggered these problems, the timing is very suspicious. Yes, the oats are gluten free, and while I knew some celiacs have a problem with oats, I only just thought to eliminate them.  I just read about corn on this website, which I do eat plenty of. I do eat dairy, and would be so terrible sad to give it up, but..... Thank you for the diary suggestions. I'll start one today. Thanks for responding!
    • trents
      Welcome to the forum, @sillyac58! Are you still using this topical medication for this precancerous spot on your lip? If not, are you saying you used it for a limited time and believe it triggered additional ongoing immune system reactions with unpleasant symptoms? I'm not clear on this. Are the oats you use certified gluten free? You may know this already, but even if they are certified gluten free, the oat protein avenin is similar enough to gluten to cause reactions in some celiacs. The development of other food intolerances is also common in the celiac community. Common offenders in addition to oats are dairy, eggs corn and soy. Dairy and oats are the most common, however. You might do well to keep a food diary and check for patterns.
    • sillyac58
      I was diagnosed about 10 yrs ago with Celiac by presenting with dermatitis herpetiformis rash. I had no stomach or intestinal discomfort, but of course showed intestinal damage. The dermatitis herpetiformis eventually went away and I've been religiously gluten free ever since. About 3 years ago I was given a topical drug by a dermatologist for pre cancerous spot on my lip. The drug is called Imiquimod/Aldara, and works by stimulating your immune system. ? The package insert and many releable online sources warn to use caution using this drug if one has an auto immune disease, I hace since found out. One of the side effects is flu like symtoms, which I had at the 10 day mark as warned. But these symptoms have been recurring regularly ever since. Low grade nausea (no vomiting), extreme fatique (sleeping in daytime) and often a migraine headache on day one or two. The bouts last around 5 days or more, usually the nausea being the persistent symptom. My dermatologist, and another I went to for second opinion say this isn't a problem. I have been ill about a third of my life ever since. I have had extensive bloodwork, been to numerous specialists, but cannot figure out what is making me sick. I have become neurotic about gluten at home, using separate cutting boards, pans, sponges, dish towels, etc. I rarely eat out, and usually only because I am traveling. I have begun taking my own food to peoples homes for dinners etc. The only thing I haven't done, until now, is to eliminated oats, which I eat fairly regularly, and are known to sometimes be a trigger. And I have to say, in my defense, that it took me a very long time to suspect gluten because my only original symtom was rash/dermatitis herpetiformis. So I didn't associate the nausea/headache/fatique with gluten for a long time. Nor did any one of the many doctors I saw suspect it. I finally had a couple of dermatitis herpetiformis spots (and severe migraine) when traveling and probably eating cross contaminated food. I've never been on one of these sights but I am desperate. I'm praying it's as simple as eliminating oats. But I am angry that I was given this drug that I truly believe set this off to begin with. Anyone?
    • Wheatwacked
      Just switching to gluten free diet will answer your question without involving anyone else.  Your sister was diagnosed, that puts you at 40% risk of having it also as a first degree relative.  If you improve on a trial gluten free diet, you either have Celiac Disease (autoimmune) or Non Celiac Gluten Sensitivity (not autoimmune).  In any case it is important to address nutritional deficiencies like vitamin D.  Gluten free processed foods are not required to fortify.  The reason gluten foods are fortified is our western diet is deficient in them to the point where the government had to step in and require fortification.   Once you start GFD you'll realize it was the gluten you were afraid of all along, but nobody told you.
×
×
  • Create New...