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

Pre-Diagnosis Help


jruss86

Recommended Posts

jruss86 Newbie

Hello all,

I am new to the site and was wondering if anyone could help me. I have been suffering from something (I still don't know what) as I have been feeling fatigued everyday, for no apparent reason (I don't have a very physically demanding job at all - I'm a graphic designer and its a two minute walk to work!), having odd reactions to food, bloated most of the time, losing motivation, feeling depressed and ultimately - not gaining any weight. I am 26, male of slim build (I've been skinny my whole life, and thought I'd at least gain size being in my mid-twenties but frustratingly, its not the case). For months, I have been looking malnourished, tired (dark circles and bags under my eyes constantly), and really, losing the will to do anything at all. Did any of you feel this way before being diagnosed with anything?

I have been scanning the web and asking friends what it could be. Some say lactose, gluten, milk protein, celiac. But I'm just not sure. Question is, is there a sure-fire way to diagnose or at least get an idea from home, of what I have? Perhaps just eating rice and water all the time and nothing else? (rice seems to be ok for me) I have tried to go dairy free - but to no avail. I am currently going gluten free but still, not feeling any better. I hear there is a blood test that can reveal some intolerances and allergies. Is this true?

I live all the way out in Dubai, UAE and I am due to see a specialist next month.

Any pointers? Anything I should do before seeing my doctor?

Help appreciated,

Thanks.


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



Celiac.com Sponsor (A8-M):



BabsV Enthusiast

losing motivation, feeling depressed and ultimately - not gaining any weight...For months, I have been looking malnourished, tired (dark circles and bags under my eyes constantly), and really, losing the will to do anything at all. Did any of you feel this way before being diagnosed with anything?

Welcome to the forum.

Your description of your symptoms was me prior to my Celiac diagnosis...plus I had awful GERD symptoms, drastic unexplained weight loss, dizziness and tremors, brain fog, nails that would tear and flake and such severe abdominal pain that I could not function!

If you need a firm medical diagnosis for any reason (work or insurance or peace of mind or whatever) and think your symptoms are gluten relatd you need to be ingesting gluten and then have your doctor run the Celiac panel of blood tests. Depending on the results of those tests you may decide to have a biopsy. My blood tests were really high but I had to go ahead with the biopsy because my husband's job takes us around the world, and I have to have a medical clearance (and they need all the info in my file.) Some people get the positive bloodwork and decide to skip the biopsy and go gluten free. Even if your bloodwork is negative you can try going gluten-free and seeing if that helps your symptoms.

Cara in Boston Enthusiast

Don't change your diet BEFORE you see your doctor - it is important to be eating gluten regularly before you begin the testing process.

It may also be helpful to find out some of your family medical history before the visit. Any autoimmune issues in your extended family? Anyone diagnosed with vague things like IBS, Chronic Fatigue, etc.?

Write a list of all your symptoms - even random ones - and bring it with you.

I had lots of symptoms that all seemed unrelated . . . until I started learning about celiac. Things I thought I would just have to live with (insomnia, frequent headaches,) all went away, along with my GI symptoms.

Good luck - it can be a frustrating process.

After you have been tested, try the diet - even if you test negative. You could still be gluten intolerant and that could be what is causing all your symptoms.

Cara

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,029
    • Most Online (within 30 mins)
      7,748

    Nancy N Rosen
    Newest Member
    Nancy N Rosen
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      Your experience is both shocking and critically important for the community to hear, underscoring the terrifying reality that cross-contamination can extend into the most unexpected and invasive medical devices. It is absolutely devastating that you had to endure six months of sickness and ultimately sustain permanent vision loss because a doctor dismissed your legitimate, life-altering condition. Your relentless research and advocacy, from discovering the gluten in MMA acrylic to finding a compassionate prosthodontist, is a testament to your strength in a system that often fails celiac patients. While the scientific and medical consensus is that gluten cannot be absorbed through the skin or eyes (as the molecules are too large to pass through these barriers), your story highlights a terrifying gray area: what about a substance *permanently implanted inside the body*, where it could potentially shed microparticles or cause a localized immune reaction? Your powerful warning about acrylic lenses and the drastic difference with the silicone alternative is invaluable information. Thank you for sharing your harrowing journey and the specific, severe neurological symptoms you endure; it is a stark reminder that celiac is a systemic disease, and your advocacy is undoubtedly saving others from similar trauma.
    • Scott Adams
      Those are driving distance from me--I will try to check them out, thanks for sharing!
    • Scott Adams
      I am so sorry you're going through this bad experience--it's difficult when your own lived reality of cause and effect is dismissed by the very professionals meant to help you. You are absolutely right—your violent physical reactions are not "what you think," but undeniable data points, and it's a form of medical gaslighting to be told otherwise, especially when you have a positive HLA-DQ2 gene and a clear clinical picture. Since your current "celiac specialist" is not addressing the core issue or your related conditions like SIBO and chronic fatigue, it may be time for a strategic pivot. Instead of trying to "reprove" your celiac disease to unwilling ears, consider seeking out a new gastroenterologist or functional medicine doctor, and frame the conversation around managing the complications of a confirmed gluten-free diet for celiac disease. Go in and say, "I have celiac disease, am strictly gluten-free, but I am still suffering from these specific complications: SIBO, chronic fatigue, dermatological issues, and high blood pressure linked to pain. I need a partner to help me address these related conditions." This shifts the focus from a debate about your diagnosis to a collaborative plan for your current suffering, which is the help you truly need and deserve to work toward bouncing back.
    • NanCel
      Hello, no I had to have them re done and then used a liner over the top.  Many dentists are not aware of the celiac effects.  Best of luck.   There is other material, yet, very expensive.
    • sleuth
      He is not just a psychiatrist.  He is also a neuroscientist.  And yes, I have already read those studies.   I agree with benfotiamine.  This is short term while glutened/inflammation occurs.  As I had already mentioned, these symptoms no longer exist when this phase passes.  And yes, I know that celiac is a disease of malnutrition.  We are working with a naturopath.
×
×
  • 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.