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

Newby To Forum And Gluten Free

klynnk

Recommended Posts

klynnk Newbie
klynnk
Posted

I haven't been tested yet and can't get into see a gi doctor for a couple of weeks. I've been gluten-free for three days now. My first day I was feeling good, second day better but today not great. Maybe too much cheese?

My story goes way back. I can remember as a child having stomach aches and headaches. I grew up on Meat, potatoes, vegetable and a desert. Once a week or so we would eat out at McDonalds which was considered a huge treat. Everyone in my family was tall and thin including myself. I could eat anything and not really gain weight. I was told i was lucky. Tired and depressed pretty much sums up many years. Infertility, tired and more depressed. I would push myself every day to work, work out and function. Friends would say I did more by noon then most people.. probably because they didn't see me finding a place to clothes my eyes any chance I got. I had random pain in my arms and legs, migraines, runny nose, strange itching..blah blah blah. Doctors loved me. NOT. The list of medications was insane. Pain, headache, sleep, depression and then finally a doctor gave me something for energy, That was the death of me. I was 110 lbs and all of the above medication. I stopped approximately 8 months ago and still felt like crap. I was ready to give up.

Dizzy/Foggy

No memory

Pain

Itching

TIRED

Runny Nose

Headaches

Some stomach pain (not tons0

Bloated

Thirsty

Constant Yawning

Depression

I was eating a Starbucks oatmeal raisin cookie and water wandering around Barnes & Noble looking for a place to sit because I was exhausted at 1:00 in the afternoon. Picked up a book by the place I chose to sit and it was about gluten free. I read some, went home and googled more and the next day I started. Three days and I really do feel less foggy. Should I give up dairy too? This afternoon I didn't feel so great but still not as bad.

Thanks

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

Celiac.com Sponsor (A8-M):


GFinDC Veteran
GFinDC
Posted

Hi K,

Sounds like you could be on to something with the gluten-free diet. If you are going to get tested though you need to keep eating gluten until the testing is done. Otherwise the tests won't do any good. So you might wan to just keep chowing down all the remaining gluten in the house for a few weeks until the testing is over. Do try the diet for half year even if the tests say you are not making antibodies. The tests are not 100% accurate so the only thing to do to be sure is try the diet.

Welcome to th3 site! :D

klynnk Newbie
klynnk
Posted
  • Author

Hi K,

Sounds like you could be on to something with the gluten-free diet. If you are going to get tested though you need to keep eating gluten until the testing is done. Otherwise the tests won't do any good. So you might wan to just keep chowing down all the remaining gluten in the house for a few weeks until the testing is over. Do try the diet for half year even if the tests say you are not making antibodies. The tests are not 100% accurate so the only thing to do to be sure is try the diet.

Welcome to th3 site! :D

Thanks for the welcome. I've read that I should keep eating gluten for the test .. BUT and I can't believe I'm saying this..I'm feeling too good not eating it. Feeling bad for so long and getting a taste of what I've always assumed was other peoples norm. I use to say that I wish I could get inside someone else's body to see how they felt. Again I know I'm only a couple days in but my clarity is so much better. Nose didn't run at all today. Barely yawned. Little fatigue. I know these sound small to most but it is life changing for me. I'm not going to get overly excited yet...

Thanks again

ravenwoodglass Mentor
ravenwoodglass
Posted

There are quite a few folks here that are selfdiagnosed. If you feel you can stick to the diet for life without a diagnosis then go ahead keep on the diet. If you think you need a diagnosis then do keep eating gluten and get tested but keep in mind that up to 20% of us have false negatives on testing. Glad to hear the diet is helping and the choice to test or not is yours but sometimes it can be helpful to have that diagnosis. If you are celiac then there is the need to check all your first degree relatives and it can be easier to get them to test if you have a formal diagnosis.

Archived

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

Go to topic listing
  • 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):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Testing

      By trents · Posted

      Did your symptoms improve after going on a gluten-free diet?
    • Scott Adams
      Testing

      By Scott Adams · Posted

      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
      Celiac or Addison's complications? Can someone share their experience?

      By Scott Adams · Posted

      @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
      Testing

      By Kj44 · Posted

      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
      Celiac or Addison's complications? Can someone share their experience?

      By cvz · Posted

      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...