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! Can't Find An Answer!


AshleyE

Recommended Posts

AshleyE Apprentice

I posted this in the testing feed and nobody had an answer, so I thought I would try asking here. I would reall ylike to know the answer.

I have been gluten free for about a year and a half, I never got tested and now I would like to. I know that I need to be eating gluten for at least six weeks befroe getting tested, but my question is how much gluten do I need to eat? I am not super sensitive and don't have any reaction to a little bit of gluten, so if I was to eat say, one crouton a day, would the damage still be enough to show up on the test, or do I have to ingest a lot of it every day?

Just wondering because I would like to be in as little pain as possible! :D

Thanks to anybody who has any ideas!


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



Celiac.com Sponsor (A8-M):



Guest j_mommy

Okay here is what Dr. Peter Green says in his book "Celiac Disease: A Hidden Epidemic"....

1) Gluten Challange shoudl be done for 1-3 months(closer to three months for those who don't have alot of outward Symptoms..He say 3 months for those who tolerate gluten well)

2) Says to eat 4 slices a bread a day(I have read else where that 2 slices is enough)

3) Says in the book that after a gluten challange it is recommended to do a biopsy b/c blood tests still may not be correct.

Hope that helps!!!

gfpaperdoll Rookie

you might not have gotten an answer because some people do not believe that a gluten challenge is a good idea. It is really your choice.

But, during a gluten challenge you run the risk of picking up some damage or another auto immune illness that might not go away as easily when you just stop eating gluten. Also, you could eat gluten for 3 months & still get a negative biobsy & negative blood tests. What are you going to do then? If the answer is to continue eating gluten then a gluten challenge would be okay for you. But if the answer is, not eat gluten any more then why do the test in the first place?

I think the best thing to do is to just get the gene test thru Enterolab.com, well unless you just want to go back to eating gluten.

Why were you gluten free in the first place? & why do you want a diagnosis?

AshleyE Apprentice
you might not have gotten an answer because some people do not believe that a gluten challenge is a good idea. It is really your choice.

But, during a gluten challenge you run the risk of picking up some damage or another auto immune illness that might not go away as easily when you just stop eating gluten. Also, you could eat gluten for 3 months & still get a negative biobsy & negative blood tests. What are you going to do then? If the answer is to continue eating gluten then a gluten challenge would be okay for you. But if the answer is, not eat gluten any more then why do the test in the first place?

I think the best thing to do is to just get the gene test thru Enterolab.com, well unless you just want to go back to eating gluten.

Why were you gluten free in the first place? & why do you want a diagnosis?

Thanks for your responses. I went gluten free originally because I had been catching every virus I came in contact with, had suddenly lost 7 pounds in two weeks (which I couldn't afford to lose, I'm 5'6" and 110lbs), was anemic, and had had poor general health and horrible headaches for ten years with no answers from any doctors... then my boss suggested celiac, and I started the diet prior to doing enough research about getting tested. I felt better immediately and had no desire to get tested.

I suppose my reason for wanting to get tested now is because I don't have a huge reaction and would like to know if it is simply an allergy/intolerance, or if it is actually celiac disease. My husband and I are starting to think about having kids, and I would like to know for their sake as well.

Either way I will stay gluten free for the rest of my life, simply because I feel so much better. After reading the first response though, I don't need to get tested that bad! If it was as easly as eating a tiny bit each day for a few weeks and I wasn't spending every night on the toilet I would do it, but I'm not ready to sacrifice a few months of my life just to have a surefire answer.

I will probably just get the gene test and if I have the gene, I will make my kids gluten-free too.

gfpaperdoll Rookie

I think that you are making a wise decision. It does not matter if you have an allergy, celiac, gluten ataxia or gluten intolerance, the treatment is the same - do not eat gluten.

Also, it does not matter which it is for the future kids, the up side is that if you feed them gluten-free they will eat a healthier diet. & it is a plus not having that dxd on your records, because once the insurance companies catch on to this you are going to exclusions & pre-existing for everything....

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. - knitty kitty replied to Sarah Grace's topic in Related Issues & Disorders
      25

      Headaches / Migraines and Hypoglycaemia

    2. - trents replied to Sarah Grace's topic in Related Issues & Disorders
      25

      Headaches / Migraines and Hypoglycaemia

    3. - Scott Adams replied to Russ H's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      KAN-101 Treatment for Coeliac Disease

    4. - Scott Adams replied to miguel54b's topic in Related Issues & Disorders
      1

      Body dysmorphia experience

    5. - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      2

      Heat intolerant... Yikes


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,151
    • Most Online (within 30 mins)
      7,748

    Travis25
    Newest Member
    Travis25
    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

    • knitty kitty
      Excessive dietary tyrosine can cause problems.  Everything in moderation.   Sulfites can also trigger migraines. Sulfites are found in fermented, pickled and aged foods, like cheese.  Sulfites cause a high histamine release.  High histamine levels are found in migraine.  Following a low histamine diet like the low histamine Autoimmune Protocol diet, a Paleo diet, helps immensely.    Sulfites and other migraine trigger foods can cause changes in the gut microbiome.  These bad bacteria can increase the incidence of migraines, increasing histamine and inflammation leading to increased gut permeability (leaky gut), SIBO, and higher systemic inflammation.   A Ketogenic diet can reduce the incidence of migraine.  A Paleo diet like the AIP diet, that restricts carbohydrates (like from starchy vegetables) becomes a ketogenic diet.  This diet also changes the microbiome, eliminating the bad bacteria and SIBO that cause an increase in histamine, inflammation and migraine.  Fewer bad bacteria reduces inflammation, lowers migraine frequency, and improves leaky gut. Since I started following the low histamine ketogenic AIP paleo diet, I rarely get migraine.  Yes, I do eat carbs occasionally now, rice or potato, but still no migraines.  Feed your body right, feed your intestinal bacteria right, you'll feel better.  Good intestinal bacteria actually make your mental health better, too.  I had to decide to change my diet drastically in order to feel better all the time, not just to satisfy my taste buds.  I chose to eat so I would feel better all the time.  I do like dark chocolate (a migraine trigger), but now I can indulge occasionally without a migraine after.   Microbiota alterations are related to migraine food triggers and inflammatory markers in chronic migraine patients with medication overuse headache https://pmc.ncbi.nlm.nih.gov/articles/PMC11546420/  
    • trents
      Then we would need to cut out all meat and fish as they are richer sources of tyrosine than nuts and cheese. Something else about certain tyrosine rich foods must be the actual culprit. 
    • Scott Adams
      I agree that KAN-101 looks promising, and hope the fast track is approved. From our article below: "KAN-101 shows promise as an immune tolerance therapy aiming to retrain the immune system, potentially allowing safe gluten exposure in the future, but more clinical data is needed to confirm long-term effects."  
    • Scott Adams
      Thank you so much for having the courage to share this incredibly vivid and personal experience; it's a powerful reminder of how physical ailments can disrupt our fundamental sense of self. What you're describing sounds less like a purely psychological body dysmorphia and more like a distinct neurological event, likely triggered by the immense physical stress and inflammation that uncontrolled celiac disease can inflict on the entire body, including the nervous system. It makes complete sense that the specific sensory input—the pressure points of your elbows on your knees—created a temporary, distorted body map in your brain, and the fact that it ceased once you adopted a gluten-free diet is a crucial detail. Your intuition to document this is absolutely right; it's not "crazy" but rather a significant anecdotal data point that underscores the mysterious and far-reaching ways gluten can affect individuals. Your theory about sensory triggers from the feet for others is also a thoughtful insight, and sharing this story could indeed be validating for others who have had similar, unexplainable sensory disturbances, helping them feel less alone in their journey.
    • 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. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.      
×
×
  • 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.