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

To Test Or Not To Test?


boho*mama

Recommended Posts

boho*mama Apprentice

Due to the inaccuracy of the blood test, I was never convinced that I'd have my son (22 months) tested and knew I'd never do a biopsy. His Dr. ordered other blood work so we did do the blood test, it came back negitive and my doc seems to think that's reason enough to go back on gluten. I know that's rediculous so we trudge on.

I was excited about genetic testing but then read that most people will have the gene so it means nothing and that others have been diagnosed with Celiac and then don't ahve the gene, this is crazy.

What's the point of getting my symptomatic son tested? What's the point of getting my asymtomatic children tested? Are there any tests taht can be done while gluten free? HOw important is it that we do other tests to address any other intolerances/allergies??


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



Celiac.com Sponsor (A8-M):



happygirl Collaborator
I was excited about genetic testing but then read that most people will have the gene so it means nothing

Incorrect. Only about 30% of the American population has one or both of the Celiac genes, HLA DQ2 or HLA DQ8. About 98% of all Celiacs has one or both of these genes. That is the latest research.

Nancym Enthusiast

There's a lot of us that *know* with certainty that gluten makes us sick that don't have positive tests. We experimented on ourselves with dietary trials or used Enterolab to figure it out. As far as I'm concerned.... the blood tests are fairly worthless.

I don't find a gluten free diet difficult or limiting, instead I relish the fact my health is much, much better!

ravenwoodglass Mentor
What's the point of getting my symptomatic son tested? What's the point of getting my asymtomatic children tested? Are there any tests taht can be done while gluten free? HOw important is it that we do other tests to address any other intolerances/allergies??

If your symptomatic son is better on the gluten-free diet and when you reintroduce gluten it makes him sick that is IMHO the proof you need. The Enterolab tests mentioned can be done gluten free and seem to be quite reliable.

As to the kids that are asymptomatic, gluten intolerance can be quite insideous. For some of us there are definate problems with learning and moods that can show up long before it becomes obvious that gluten might be the problem. For this reason alone you may want to do gene testing so you can be prepared, but you have to bear in mind that it is quite possible that not all genes for gluten intolrance and celiac have been found.

As to other intolerance testing, if you are going to do enterolab then I would add those on also. If you are going with dietary response you will want to cut out dairy for a bit to let him heal and then reintroduce cautiously. If he is still having a lot of problems after a couple months gluten-free and DF then you may want to try cutting out some of the other more common allergins like soy and corn or do more testing then.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      126,852
    • Most Online (within 30 mins)
      7,748

    ToriN
    Newest Member
    ToriN
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.7k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      The intestinal tract can be as long as twenty-two feet long, so intestinal damage may be out of the reach of endoscopy tools.  Some people have had more success with capsule endoscopy, but this method cannot take biopsies.  
    • knitty kitty
      @Jack Common, It's possible that your antibiotic for giardiasis has caused thiamine deficiency.   https://hormonesmatter.com/metronidazole-toxicity-thiamine-deficiency-wernickes-encephalopathy/ And... Thiamine and benfotiamine: Focus on their therapeutic potential https://pmc.ncbi.nlm.nih.gov/articles/PMC10682628/ For clarification, the weight of your slice of bread is not equal to the amount of gluten in it.   Gluten helps form those big holes in breads, so breads like thick chewy pizza crust and artisan breads contain more gluten than cakes and cookies.  
    • knitty kitty
      Sorry about that link.  It was meant for a different post.   Do consider taking high dose Vitamin D in order to get your level up to around 80 nm/l quickly.   This is the level where Vitamin D can properly work like a hormone and can improve the immune system and lower inflammation.  It makes a big difference.   I took high dose Vitamin D and really improved quickly.  I ate Vitamin D supplements throughout the day like m&ms.  My body craved them.  Very strange, I know, but it worked.   Before you have surgery, you really need to improve your vitamins and minerals.  Vitamins A and D, Vitamin C and Niacin are extremely important to skin health and repair.  Without these, the body does not repair itself neatly.  I've got a scar worthy of a horror movie.  My doctors were clueless about nutritional deficiencies. A sublingual Vitamin B12 supplement will work better for boosting levels.  Tablets or liquid drops in the mouth are easily absorbed directly into the blood stream.   Do bear in mind that about half of Celiac people react to the protein in dairy, Casein, the same as they react to gluten because segments of the protein in Casein resembles segments of the protein Gluten.  Some people lose the ability to produce lactase, the enzyme that digests Lactose, the sugar in dairy, as they age.  Others lose the ability to produce lactase because the intestinal Villi become damaged during the autoimmune response against gluten, and damaged chili can't produce lactase.   Do try Benfotiamine.  It has been shown to improve gastrointestinal health and neuropathy. Keep us posted on your progress!
    • ABP2025
      Thanks sending me additional links including how to test for thiamine deficiency. With regards to your first link, I wasn't diagnosed with giardiasis and I didn't take antibiotic for it. I try to generally stay away from antibiotic unless absolutely necessary as it might affect gut health. For treating phimosis, the doctor didn't give me antibiotics. I need to have a circumcision surgery which I haven't got around to schedule it.
    • ABP2025
      I'm not vegan, just vegetarian. I consume dairy but not egg. So I have started including some Vitamin D fortified milk as well as a multivitamin with 2000 IU daily. For Vitamin B12, like you said it's very difficult to get it from just vegetarian sources and have started consuming Vitamin B Complex daily. My PCP was worried when my Vitamin D result came out as It was 3.7 ng/ml last year. He said that being low for a lengthy time could have done some damage to the body over the years. Now, though Vitamin D level has improved after the supplements, I'm not sure if the neurological damage has already been done. I'll continue including the supplements and see if my symptoms improve. I'll also get tested for celiac to see if I need to be in gluten-free diet.
×
×
  • Create New...