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

Finally Getting Tested...do I Need To Eat Gluten Prior ?


SarahJ

Recommended Posts

SarahJ Newbie

I'm new here. I've basically been eating gluten free for about two years, with the occassional slip-ups and "accidents" along the way. It all started about two and a half years ago, when I started to notice that when I ate gluten, I had stomach bloating, upset, and my scalp and face would break out in the most nasty pustule-type things. It's very yucky. So, I tried an elimination diet, and it seemed to do the trick. Recently, I finally got health insurance and my doctor has ordered the Ig A, Ig G, and Ig A endomysial tests at my request, but now I need to know if I will need to purposefully ingest some gluten prior to testing, and if so how much prior to the testing, and could it just be one piece of bread? I really want to know definitively, but eating gluten long-term is soo hard on me. Plus, if I do test positive, what's the next step? I have my healthcare thru Kaiser and they tend to do the absolute minimum, so I need to know what I should be requesting from them next if it is positve. Thanks in advance. BTW, does anybody else get the pustule-things I mentioned? All I need to do is have one small slip-up and within 24 hours they are starting to pop up.

Thanks in advance,

Sarah


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



Celiac.com Sponsor (A8-M):



Lisa Mentor

Sarah:

I am curious, after being gluten free for over two years and feeling better, why you want to be tested? It would seem to me that positive dietary response, it would be clear that you either have Celiac or and intolerance.

But, yes, to get the blood panel, you should eat the equal amount to three pieces of bread a day for a period of time, I can't recall. Your panel will not be accurate if you have been gluten free for so long.

And then you will feel crappy again.

I am sure other will post soon.

Lisa

Jestgar Rising Star

For 1-3 months. Is it worth it? What would change if you had the results?

CarlaB Enthusiast

I've heard it's 3-4 months ...

tarnalberry Community Regular

three slices of bread a day for three months is what I've heard (for adults).

Rachel--24 Collaborator
Plus, if I do test positive, what's the next step?

Hi Sarah....welcome to the board. :)

To answer your question if you test positive the next step would be the gluten-free diet....which you are already on.

Kaiser wont do much for you. They sent me to their dietician who knew next to nothing about Celiac and was frantically trying to print stuff off the computer. At that point I'd already spent time on this board, visited all the sites she was printing info from....and just knew alot more than she did about the diet.

If you need a definate diagnosis through testing you would need to eat gluten (and plenty of it) for at least 3 months prior to testing. It takes a long time for antibodies to show up in the blood...unfortunately one slice of bread wont do it.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      results from 13 day gluten challenge - does this mean I can't have celiac?

    2. - Wheatwacked replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      13

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    3. - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      My journey is it gluten or fiber?

    4. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      results from 13 day gluten challenge - does this mean I can't have celiac?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,368
    • Most Online (within 30 mins)
      7,748

    Klairep
    Newest Member
    Klairep
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • catnapt
      oops my gluten challenge was only 12 days It started Jan 21s and ended Feb 1st   worst 12 days of my life   Does not help that I also started on a thiazide-like drug for rule in/out renal calcium leak at the exact same time No clue if that could have been symptoms worse 🤔
    • Wheatwacked
      Welcome to the forum @Known1, What reaction were you expecting? Pipingrock.com High Potency Vitamin D3, 2000 IU, 250 Quick Release Softgels $6.89 I've have been taking the 10,000 IU for close to 10 years. When I started with vitamin D I worked my way up to 10000 over several weeks.  Even at 8000 I felt no noticeable difference.  Then after a few days at 10000 it hit Whoa, sunshine in a bottle.  celiac disease causes malabsorption of dietary D and you've poor UV access.  It took me from 2015 to 2019 to get my 25(OH)D just to 47 ng/ml.  Another two years to get to 80.  70 to 100 ng/ml seems to be the body's natural upper homeostasis  based on lifeguard studies.  Dr. Holick has observed the average lifeguard population usually has a vitamin D 3 level of around 100 ng/ml. Could it be that our normal range is too low given the fact that ¾ or more of the American population is vitamin D deficient? Your Calcium will increase with the vitamin D so don't supplement calcium unless you really need it.  Monitor with PTH  and 25(OH)D tests. Because of your Marsh 3 damage you need to ingest way more than the RDA of any supplement to undo your specific deficiencies. I believe you are in the goiter belt.  Unless you have reason not to, I recommend pipingrock's Liquid Iodine for price and quality.  The RDA is 150 to 1100 mcg.  In Japan the safe upper level is set at 3000 mcg.  Start with one drop 50 mcg to test for adverse response and build up.  I found 600 mcg (12 drops) a day is helping repair my body.  Iodine is necessary to healing.  90% of daily iodine intake is excreted in urine.  A Urine Iodine Concentration (UIC) can tell how much Iodine you got that day.  The thyroid TSH test will not show iodine deficiency unless it is really bad.  
    • xxnonamexx
      I don't know if I am getting sufficient Omega Threes. I read about  phosphotidyl choline may cause heart issues. I will have o do further research on heathy Omega 3 supplements or from foods. Is there a blood test that can tell you everything level in your system such as Thiamine, Benfotiamine levels etc? Thanks
    • catnapt
      If lectins were my problem, I would react to wheat germ (the highest source of wheat lectins) and beans. I don't. I only react to bread and pasta, which are the highest sources of gluten. Therefore, my issue is wheat-specific (Gluten/ATIs), not a general lectin issue.   I have eaten a supposedly high lectin diet (I say supposedly because lectin content in these foods is greatly reduced by proper cooking and I eat very few of those foods raw, and even then, rarely!!) for years. My health has improved greatly on my whole foods plant forward diet. I have asked all my drs and a registered dietician about my diet, asked if eating such a high amnt of fiber might interfere with the digestion of any other nutrients and the answer has always been NO.     while doing the gluten challenge I did not eat ANY wheat germ (since it doesn't have hardly any gluten, and I was too sick from the bread and pasta to want to eat much anyway) I will NOT put that poison in my body again. That was a horrific experience and if this is what most celiac patients have to deal with, I am very sorry for them I don't care if I have celiac or NCGS I won't intentionally cause myself that much pain and suffering it's not worth it.  
    • knitty kitty
      @catnapt,  Wheat germ contains high amounts of lectins which are really hard to digest and can be irritating to the digestive tract.  They can stimulate IgG antibody production as your blood test shows.   Even beans have lectins.  You've simply eaten too many lectins and irritated your digestive tract.   You may want to allow your digestive tract to rest for a week, then start on gluten in "normal" food, not in concentrated vital wheat gluten. This explains it well: Lectins, agglutinins, and their roles in autoimmune reactivities https://pubmed.ncbi.nlm.nih.gov/25599185/
×
×
  • 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.