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

New To Forum


bk-63

Recommended Posts

bk-63 Newbie

Well, I guess for starters I should introduce myself. I'm a 22 year old grad student in Missouri and have been gluten free for right at about a year. I discovered this site and forum a few weeks ago while trying to research different products and have looked at it almost daily since then, so I joined! I self diagnosed myself last year after have no luck with various doctors and diets, and having a discussion with a friend who had recently found out she was gluten intolerant. I have no doubt that gluten was the problem, as every irritating, confusing, and embarrassing symptom has since cleared up, but I still think it would be nice to know for sure. I know what the doctors say about the different tests and how accurate they are, but I guess I'm wondering whether its really worth doing? Thanks!


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



Celiac.com Sponsor (A8-M):



Kay DH Apprentice

Since you have been gluten-free for a year, the celiac panel or other blood tests would likely be normal. The endoscopy/biopsy and blood tests require +3 weeks of eating lots of gluten if a person has been gluten-free. My celiac panel was run after going gluten-free, and was normal (my GP has since learned about celiac). My GI only had me on the gluten challenge for a week and only took one endoscopy biopsy, which was normal. You could have the genetic test for HLA-DQ2 and DQ8, which don't require being on gluten. Even lack of these genes does not exclude celiac or gluten sensitivity, because researchers are finding more genetic markers. Best test for leaky got and inflammatory response to gluten is how you feel when off the nasty compound molecule, and how you feel when reintroduced. There is an estimated 5% diagnosis of people with celiac. I suspect many of the remaining 95% have diagnosed themselves, including me. If you are in a country that give tax breaks or other benefits to a celiac/DH diagnosis, then that is a contributing factor. This is not true of the US.

bk-63 Newbie

Thank you for the information! I'd definitely rather stay self diagnosed and not have to eat gluten again for a test :(

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,247
    • Most Online (within 30 mins)
      7,748

    Jbamf8791
    Newest Member
    Jbamf8791
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      @Zuma888, The antibodies produced in response to gluten are made in the intestines.  When the body is provoked sufficiently, the antibodies overflow out of the intestines and into the blood stream.  Once in the blood stream, the antibodies can be measured with tTg IgA tests.  Three grams of gluten per day for two weeks minimum is enough gluten to make you feel the symptoms of having been glutened, but the antibodies are not in sufficient quantity to be measured in the blood. Ten grams of gluten per day for a minimum of two weeks is required to get the anti gluten antibodies at a high enough level in the blood stream to be measured by tTg IgA tests. So, no, occasional cross contamination or (heaven forbid) intentional cheat days will not be sufficient for tTg IgA testing.  You will still be making antibodies which will still be causing inflammation and damage to the intestines and body.  Histamine is released as part of the immune response to gluten.  High histamine levels lead to food sensitivities, brain fog, and body aches.   The damage done to the gastrointestinal tract affects the absorption of essential vitamins and minerals.  Malabsorption of fats can cause changes in stools.  Insufficient absorption of vitamins and minerals can cause damage to other organs like the thyroid if it can't get enough Selenium, iodine, iron, zinc, and Thiamine.  Brain fog and fatigue can be caused by low Thiamine and other B Complex vitamins.  Vitamin D is needed to regulate the immune system.  One gene is all that's needed to develop Celiac disease.  I know a Celiac diagnosis is a change that can be difficult to get your head around.  Many people go through the five stages of grief.  One stage is "bargaining".  Sounds like you're stuck there.  Every little cheat counts to your detriment.  But sticking to a gluten free diet, makes every meal a success.   Read the comments below the article... Best wishes!  Keep us posted on your progress!
    • Scott Adams
      No, I would not say this at all. If you were diagnosed with celiac disease and were gluten-free for a while, you could have gone into remission. Everyone's body is different, and some celiacs may be able to get regular contamination and not end up with damaged villi and positive antibody tests, while others who ingest tiny amounts will relapse and have full blown symptoms and flattened villi.  Only a full gluten challenge would reveal where you are at this point. 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
      The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs.      
    • Pablohoyasaxa
      Great  post. The skin issue can be intolerable. I have been taking niacinamide for the past month and have improved with respect to the blistering lesions. 
    • knitty kitty
      I've found taking Niacin Vitamin B 3 in the form that causes flushing (nicotinic acid) helps immensely to clear my skin.  The flushing is harmless and goes away the longer Niacin is taken.  The flushing (vasodilation in the skin) helps the body get rid of the tTg 3 IgA antibodies that cause the blisters.  TTg 2 IgA antibodies are found in the blood and are measured in diagnostic testing for Celiac.  People with Dermatitis Herpetiformis make tTg 3 as well as tTg 2 antibodies.  Niacin Vitamin B3 in the non flushing form niacinamide also works without the flushing, but takes a bit longer.   I also avoid foods containing high levels of iodine because iodine activates the tTg 3 IgA antibodies to become more active and make more blisters.  I avoid kelp (nori, seaweed) and crustaceans,  eggs, dairy products, and iodized table salt.   Niacinamide and Nicotinic acid are water soluble and harmless.  I'd much rather take Niacin than Dapsone with scary side effects.  
×
×
  • Create New...