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

Please Help/not Sure What To Do


Sickandtiredandtingling

Recommended Posts

Sickandtiredandtingling Newbie

Hello,

I am so tired... I am at the end of my rope and need some suggestions from anyone with celiac disease problems. I have had abdominal pain for the last year and a half. I had a tissue transglut test 6 months ago that was 8.5 (week positive) and the doctor said labs were fine>I have had a recent tTG with a result of 12.(I feel more sick then ever) The doctor (GI) I went to today wants to do a biopsy 14 days from today. These are my symptoms that I can no longer tolerate: right upper abdominal pain, tingling in my legs 24/7. Bone Pain and weakness, b12 and vit. d def., joint pain, depression and bouts of crying ( I am losing my mind, plus my hair) I have had thyroid tests which are within normal limits but numbers increase and decrease..Low cortisol level and darkening of my armpits. oh I almost forgot my armpits and back of knees are sore and I think my lymph nodes are swollen.

This doctor wants me to increase gluten (which I have not started to restrict) for 2 wks so he could do a biopsy.-Well I say forget it. I want to start the gluten free diet and hope that my symptoms elevate. I though doctors are suppose to help you? If I increase the gluten and have celiac won't I be damaging my intestine even more???? and why isn't anyone concerned about the pain, I push myself out of bed to go to work and school and fight the urge to run off the road.

I hope someone can advise.

Thank you


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

You have had positive blood work. The choice to endo is up to you not the doctor. If you go gluten free before the endo the results will be a false negative most likley. There are false negatives seen for some even with a full gluten diet. If you can stay compliant with the diet without the endo then go gluten free. If you need an official diagnosis then stay on the gluten and wait till the day of the endo to start the diet.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      128,159
    • Most Online (within 30 mins)
      7,748

    Elaine Gilbert
    Newest Member
    Elaine Gilbert
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.7k

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)


  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Did your symptoms improve after going on a gluten-free diet?
    • Scott Adams
      Thank you for sharing your genetic test results and background. Your results indicate you carry one half of the DQ2 heterodimer (DQA1*05), which is associated with a very low celiac disease risk (0.05%). While most celiac patients have either DQ2 or DQ8, these genes are also present in people without celiac disease, so the test alone doesn’t confirm a diagnosis. Since you’ve been gluten-free for 10 years, traditional diagnostic methods (like endoscopy or blood tests) would not be reliable now. If an official diagnosis is important to you, consider discussing a gluten challenge with your doctor, where you reintroduce gluten for a period before testing. Alternatively, you could focus on symptom management and dietary adherence, as your gluten-free diet seems to be helping. Consulting a gastroenterologist or celiac specialist could provide further clarity.  Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
    • Scott Adams
      @cvz Thank you for sharing your daughter’s story. It sounds like she is managing multiple complex conditions with great care and diligence. It’s encouraging to hear that she is compliant with her gluten-free diet and that her Addison’s disease symptoms are under control. The addition of electrolytes seems like a thoughtful suggestion, especially given her fluid intake. It’s also reassuring that she hasn’t shown noticeable symptoms from accidental gluten exposure, though it’s understandable how challenging it can be to monitor for such incidents. The unexplained high lipase levels are intriguing—perhaps further investigation or consultation with a specialist could provide more clarity. Wishing you both continued strength and success in managing her health. Please keep us updated on her progress!
    • Kj44
      Hello I received this in a genetic lab test I requested from my provider.    The patient is positive for DQA1*05, one half of the DQ2 heterodimer. The celiac disease risk from the HLA DQA/DQB genotype is approximately 1:1842 (0.05%). This is less than the 1% risk in the general population. Allele interpretation for all loci based on IMGT/HLA database version 3.55 HLA Lab CLIA ID Number 34D0954530 Greater than 95% of celiac patients are positive for either DQ2 or DQ8 (Sollid and Thorsby, (1993) Gastroenterology 105:910-922). However these antigens may also be present in patients who do not have Celiac disease.   Some background, I have been eating gluten free for about 10 years now. I have never had an official celiac diagnosis due to endoscopy and labs tested after I had already been eating gluten free for over 1 year. I was constantly sick and told you slowly remove foods and see what effects my symptoms. I have also come to realize that I have other symptoms of celiacs and recently requested the genetic testing shown above.    I am looking to see if anyone has other recommendations for testing or just to clarify the results for me as I feel the official diagnosis could be helpful but I am not positive that it is even true for me. 
    • cvz
      My daughter, age 48, has Down syndrome, hypothyroidism, Addison's disease, and Celiac disease, which was diagnosed based on blood tests last July.  After a small intestine biopsy last fall, we were told that she has severe celiac disease.  She is taking both levothyroxine and leothyronine for her hypothyroidism and both hydrocortisone and fludrocortisone for Addison's disease.  She also takes Folic acid, magnesium, vitamin B-12, DHEA (DAGA), and a multivitamin.  In July, she started on a gluten-free diet and is very compliant.  She has had constipation and diarrhea issues all her life and now controls the constipation with Miralax, prunes, and apricots.  Shel has only very occasional syncopes or vasovagal events and muscle aches in her upper back and neck.  She drinks 4-6 or more 12 oz bottles or of liquid per day.  Her doctor has just suggested adding electrolytes to one of those bottles daily.   We are sorry to learn about the issues you are having and would like to stay in touch.  We do not know anyone else with both Addison's disease and celiac disease.  So far, she has no recognizable symptoms.  We are doing our best to keep her gluten-free, but have no way of knowing if she has had an exposure to it unless we catch it ourselves.  For example, a few weeks ago, a restaurant mistakenly breaded her fish, and I did not notice it until she had eaten most of it.  She had no identifiable symptoms of the exposure then or days later. By the way, the reason she was screened for Celiac disease was that her blood lipase levels were unexplainably high.  They still are.  We have no idea why.    
×
×
  • Create New...