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 Celiac.com!
    eNewsletter
    Donate

i have issue


maxbale

Recommended Posts

maxbale Newbie

hi everyone

I read an old thread on this topic, but many responders did not understand that ELISA/ACT is different from other blood tests for delayed food sensitivities.

This is a specific type of testing for delayed (food and other) allergies that supposedly is more accurate, with fewer false positives and greater sensitivity, but the vast majority of the reviews and articles about it online are by the person/company that does the testing.  Unlike typical food allergy (IgE) or food intolerance (IgG4) testing, this tests for lymphocyte response (LRA).

I've had blood tests over the years for over 80 foods and have delayed allergies (aka intolerances) to dozens of foods (all IgE responses were negative, but many IgG4 were positive).  I try to avoid those foods - or, if impossible to avoid, rotate so that I eat them no more often than every 5 days. But avoiding so many foods means I am eating other foods more frequently and so am likely to have become sensitive to those foods.  I can't take the years to experiment starting with an elimination diet because I have a family to feed and a limited energy budget (I have ME/CFS and that comes with super-sensitivity to light, noise, and apparently foods, too).

I've been making all meals from scratch - with many ingredients coming from my own, organic garden - for decades.  I'm even trying to improve my gut flora and fauna with homemade kefir (water kefir cuz I'm allergic to dairy), raw fermented vegetables and inulin (in my homegrown sunchokes; the powdered inulin you can buy didn't have the same effectiveness).  I've been journaling daily, foods and MANY other things that can affect symptoms for 10 years, but have so many sensitivities that journaling alone is not helping.

The ELISA/ACT testing is expensive, but I'm certain I've spent more than the $1,700.00max over the years on buying and growing the few foods left that I CAN eat.  I'd sure like to have a more accurate test of which foods are causing the many delayed symptoms I am experiencing.

Please let me know if you have had the testing and whether it seemed it really was more accurate.

thanks

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      120,993
    • Most Online (within 30 mins)
      7,748

    Celiac Family
    Newest Member
    Celiac Family
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • GardeningForHealth
      As a side note, it seems that medical science has evolved in the past 5-6 years regarding Celiac Disease, and I am now catching up. It seems that anything that disrupts the microbiome sufficiently enough can--in genetically susceptible individuals--lead to Celiac Disease. I have been reading now that antibiotics, excessive simple carbohydrates such as refined sugars and starches, the manner of birth such as C-section vs vaginal delivery, the diversity of one's diet, the presence of certain bacteria or viruses, can all contribute to microbiome dysbiosis, which can lead to Celiac. This is fascinating research.
    • GardeningForHealth
      I mostly eat healthy. My diet has varied over the past 10 years but mostly consisted of meals I cooked at home made from scratch. Ingredients I used over the years include (not in order): non-wheat grains such as teff, sorghum, millet, and eggs, butter, cheese, some milk, meat (poultry, red meat, but very little processed meat), gluten-free baked bread (mostly Canyon Bakehouse brand), vegetables, fruits, nuts, legumes, peanuts, chocolate (not in the past 6 months). However, the mistakes I made in my diet are that I consumed too much sugar and carbohydrates from gluten-free baked goods that I baked myself at home such as gluten-free dessert items, and also I ate pretty much the same exact meals over and over, so a great lack of diversity in what I ate. I got lazy. I think this messed up my microbiome. The meals I ate were mostly healthy though. I always made sure to eat vegetables and fruits on a daily basis.  I have checked for nutrient deficiencies over the years and I am sometimes low in Vitamin D. I started supplementing it after that. What concerns me is the progressive nature of the food intolerances, which indicates the gut is not healing and has been leaking all along. 
    • TessaBaker
      It sounds like you're dealing with a complex situation, and I can understand how frustrating it must be not to have a clear answer. Gut health can indeed play a significant role in various aspects of our well-being, including hair health.
    • Celiac16
      I have found similar benefits from thiamine. I was diagnosed with celiac at 16 and never really recovered despite strict gluten and dairy free diet and no detectable antibodies on checkup bloodworks. I’ve tried stopping the b1 but start to feel bad again- I wanted my doctors to do more extensive testing for the different thiamine transporters and enzymes which would be a better indication if I was deficient or dependent on it but everyone dismisses it (there are know genetic mutations where you need to take it daily for life). I have looked into Thiamine Responsive Megablast Anemia and I have a lot of the more mild symptoms of the disease that manifest when thiamine isn’t given to the patient such as optic neuritis… I just find the parallels interesting. i think that celiacs could be a side issue of inflammation that resulted from vitamin deficiencies. I was eating a lot of sugar leading up to my diagnosis and since eating gluten free didn’t make me feel much better, I’m wondering if this was more the underlying issue (sugar heavily depletes b1). I usually take 1.5g thiamine a day.
    • Fluka66
      Thank you for your welcome and reply.  Yes I've been carefully reading labels looking for everything in bold and have been amazed by what I have seen. However Heinz tomato and basil soup is wheat free so I m thinking I already have ulcers?  The acid could be causing the pain . My pain always starts in one place then follows the same route through me . GP confirmed that is the route of our digestive system.  So much pain from stabbing to tearing. If I throw in milk with lactose it's horrific.  Many years of it now, won't go into details but been seeing a consultant for a supposedly different problem . Wondering what damage has been done over the years. Many thanks for your reply. Wishing you the very best.    
×
×
  • Create New...