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

Help...too Much Going On


widget

Recommended Posts

widget Newbie

I am feeling very, very overwhelmed. I have been gluten-free for over a year, as well as dairy and egg-free, and I am extremely vigilant about my diet. However, I am having stomach aches at least every other day, and I am so fatigued that I could just sleep for days...in fact, I find that I start a project and then just sit on my bed for hours. I don't know who to see. I saw another gastoenterologist recently and he ran a CBC and basic blood panel on me, plus a celiac disease blood workup (his response was, "what do you think we should do? Can you afford to have me scope you to check for cancer?". And I specifically asked him, will the blood test be accurate for celiac disease since, one, it costs $300 and I have no insurance, and two, the last test I had was negative, and three, I understand that if you've been off gluten, it will not be correct. As expected, it came back negative. However, my CBC was off the charts - I've had ITP for years, so it was not a shock, but it still very worrisome: platelets 37k, WBC 3, Hemo 33.4. He immediately passed me back to my hematologist, who had done a bone marrow aspiration last year - and told me to have a liver and spleen ultrasound once again. I am also going to see a nutritionist next week but frankly, don't expect much - she is not well-versed in gluten intolerance or celiac disease. I've been having a hard time keeping my weight up. I am 53 and over the years have dealt with depression, anemia, thinness, rashes, headaches, stomachaches, bruising & pettechia, brain fog, clumsiness, difficulty conceiving (and a miscarriage), early onset menopause, and very dark circles under my eyes. In addition, I have asthma and allergies (both food and environmental). I've also had 2 right breast lumpectomies (benign) and my current mammo shows 5 "suspicious spots" on my left breast.

I am at my wit's end. WHO do I see??? I wonder if I should try someone in the homeopathic realm instead of "normal" doctors (who have been of no help whatsover). I don't know which way to turn. I hope someone can give me some advice or reassurance, or recommend a good doctor in the Gainesville, FL area (I had asked for recommendations on the "doctor" forum, but the one who was recommended has not been of any help).

Thank you in advance.


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



Celiac.com Sponsor (A8-M):



Lisa Mentor

I am sorry that you are going thought such difficulties. Most of us are not doctors, and I would encourage your to continue in your search with medical professionals.

It's not necessary for a doctor to recommend the gluten free diet. It might be something that you might want to try to see if you can get some relief.

Here is some support information:

Open Original Shared Link

widget Newbie

Thanks for your response. Yes, I've been gluten-free for almost 2 years - I eat organically as much as possible, and avoid all processed foods. I also have to avoid all dairy, eggs, nuts, citrus, melon, turkey, corn and more. I have asked 2 different doctors to prescribe a comprehensive food allergy panel and they both said they wouldn't - so I will need to find an allergist in addition to everyone else...more money, of course, which is one reason I need to figure out who can help me the most and actually understand the correlation of celiac disease, ITP, etc. and not treat just one symptom.

I feel like I can't eat without reacting, can't sleep without a sleeping aid, and feel like crap every single day. I jog but it makes me cough (I cough all the time, actually), I try to take care of myself and avoid stress, and I attempt to research/read everything I can - this site has been very helpful..if nothing else, just to know that I'm not alone!

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,202
    • Most Online (within 30 mins)
      7,748

    PatBurnham
    Newest Member
    PatBurnham
    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

    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
    • Xravith
      I'm very confused... My blood test came out negative, I checked all antibodies. I suppose my Total IgA levels are normal (132 mg/dl), so the test should be reliable. Still, I'm not relieved as I can't tolerate even a single biscuit. I need to talk to my doctor about whether a duodenal biopsy is necessary. But it is really possible to have intestinal damage despite having a seronegative results? I have really strong symptoms, and I don't want to keep skipping university lectures or being bedridden at home.
    • Scott Adams
      They may want to also eliminate other possible causes for your symptoms/issues and are doing additional tests.  Here is info about blood tests for celiac disease--if positive an endoscopy where biopsies of your intestinal villi are taken to confirm is the typical follow up.    
    • Scott Adams
      In the Europe the new protocol for making a celiac disease diagnosis in children is if their tTg-IgA (tissue transglutaminase IgA) levels are 10 times or above the positive level for celiac disease--and you are above that level. According to the latest research, if the blood test results are at certain high levels that range between 5-10 times the reference range for a positive celiac disease diagnosis, it may not be necessary to confirm the results using an endoscopy/biopsy: Blood Test Alone Can Diagnose Celiac Disease in Most Children and Adults TGA-IgA at or Above Five Times Normal Limit in Kids Indicates Celiac Disease in Nearly All Cases No More Biopsies to Diagnose Celiac Disease in Children! May I ask why you've had so many past tTg-IgA tests done, and many of them seem to have been done 3 times during short time intervals?    
×
×
  • 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.