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

Question Re Testing & Being Gluten Free...

buttonburger

Recommended Posts

buttonburger Rookie
buttonburger
Posted

Hi all

From what I have read it would seem that being gluten free (or at least gluten light!) would have a bearing on the result of the tests for Celiac... just wondering if there are *any* tests that dont require you to be eating gluten at the time of being tested as my youngest DS is pretty much everything free right now lol & still has some symptoms - I would hate to have to put him through a few months of misery in order to get a diagnosis...

TIA

Julie :)

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

Celiac.com Sponsor (A8-M):


CarlaB Enthusiast
CarlaB
Posted

Open Original Shared Link is the only test I know of that can be done while gluten-free.

Are you sure that ALL the gluten is out of his diet? What about your body lotions? Small things like that matter ... when he cuddles or kisses you, or when you prepare his food. Even a small amount of gluten will cause symptoms. I don't know if he's gluten-free or gluten-lite, but it needs to be gluten-free. I'd keep the diet simple for some time till he's better -- meat, eggs, veggies, fruit, rice, potatoes. I would also avoid restaurant food for him, too much of a chance of contamination.

It does take time to heal, so even if you do have all the gluten out of his diet, it still could take time.

Is he off dairy, too? Sometimes that makes a difference in the beginning.

buttonburger Rookie
buttonburger
Posted
  • Author
Open Original Shared Link is the only test I know of that can be done while gluten-free.

Are you sure that ALL the gluten is out of his diet? What about your body lotions? Small things like that matter ... when he cuddles or kisses you, or when you prepare his food. Even a small amount of gluten will cause symptoms. I don't know if he's gluten-free or gluten-lite, but it needs to be gluten-free. I'd keep the diet simple for some time till he's better -- meat, eggs, veggies, fruit, rice, potatoes. I would also avoid restaurant food for him, too much of a chance of contamination.

It does take time to heal, so even if you do have all the gluten out of his diet, it still could take time.

Is he off dairy, too? Sometimes that makes a difference in the beginning.

Many thanks for your reply :)

Yep, my youngest son is off dairy - basically all he eats right now is rice (or rice pasta/bread/milk), 5 fruits, 5 veg, chicken & beef & arrowroot (for making custard/white sauce)... he has multiple food allergies so his diet is v restricted. I suppose he could be getting gluten from elsewhere though - from me like you say, or bath products etc. It wasnt til I found this site (about 2 days ago) that I realized how easily he could be CC

We are in the UK though and I assume that enterolabs is in the US?

I will speak to the allergy specialist next week but I would much rather go with all the right info - for-warned is for-eamed as they say.

Thanks again

Juliex

CarlaB Enthusiast
CarlaB
Posted

I don't know whether they can test from the UK or not. You can look at their website ... they are in the States.

CC can be a big problem. Even toasters, cutting boards, wooden spoons, body care products (shampoo, etc.). Plus, it takes time to heal ... it doesn't happen overnight.

I hope you get some answers soon.

buttonburger Rookie
buttonburger
Posted
  • Author
I don't know whether they can test from the UK or not. You can look at their website ... they are in the States.

CC can be a big problem. Even toasters, cutting boards, wooden spoons, body care products (shampoo, etc.). Plus, it takes time to heal ... it doesn't happen overnight.

I hope you get some answers soon.

Thanks for getting back to me again Carla

What should I be looking our for in body care products then? I assume the culprit isnt actually listed as gluten in shampoo etc?? I did see a list of 'safe' toiletries on the site but with being in the UK I imagine I'll be using alot of different brands.

Also, is there any link between low levels of B6 & B12 & celiac? (I ask only because when I was told of my wheat intolerance/allergy last week I was also told I was lacking in both & have seen other posters mention one or other...)

Finally... (sorry!) I take it the gene test simply shows if you have the Celiac gene and not if you are Celiac? I just wonder if I should ask for this & the blood tests for DS1 & 2 when I see the consultant on Friday as a starting point...

Many thanks in advance once again

Julie :o)

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,342
    • Most Online (within 30 mins)
      7,748
    Setb1210
    Newest Member
    Setb1210
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Gluten exposure when trying to conceive

      By trents · Posted

      My reaction to a gluten bolus exposure is similar to yours, with 2-3 hours of severe abdominal cramps and intractable emesis followed by several hours of diarrhea. I don't necessarily equate that one large exposure to gluten with significant intestinal lining damage, however. I think it's just a violent reaction to a what the body perceives to be a somewhat toxic substance that I am no longer tolerant of because I have quit exposing myself to it regularly. It's just the body purging itself of it rather than an expression of significant damage. Before diagnosis, when I was consuming gluten daily, I had little to no GI distress. I was, for the most part, a "silent celiac". The damage to my small bowel lining didn't happen all at once but was slow and insidious, accumulating over a period of years. The last time I got a big shot of gluten was about three years ago when I got my wife's wheat biscuits mixed up with my gluten-free ones. There was this acute reaction after about two hours of ingestion as I described above. I felt washed out for a few days and fully recovered within a week or so.  Now, I'm a 74-year-old male. So, I'm not worried about being pregnant. And I don't want to contradict your physicians advice. But I just don't think you have done significant damage to your small bowel lining by one episode of significant gluten ingestion. I just don't think it works that way.
    • Skydawg
      Gluten exposure when trying to conceive

      By Skydawg · Posted

      Wondering about some thoughts on how long to wait to try to get pregnant after a gluten exposure?  I have been diagnosed for 10 years and have followed the diet strictly. I have been cross contaminated before, but have never had a full on gluten exposure. I went to a restaurant recently, and the waiter messed up and gave me regular bread and told me it was gluten free. 2 hours later I was throwing up for the whole evening. I have never had that kind of reaction before as I have never had such a big exposure. My husband and I were planning to start trying to get pregnant this month. My dr did blood work to check for electrolytes and white blood cells, but did not do a full nutritional panel. Most of my GI symptoms have resolved in the past 2 weeks, but I am definitely still dealing with brain fog, fatigue and headaches. My dr has recommended I wait 3 months before I start to try to get pregnant.   I have read else where about how long it can take for the intestine to fully heal, and the impacts gluten exposure can have on pregnancy. I guess I am really wondering if anyone has had a similar experience? How long does it take to heal after 1 exposure like that, after following the diet so well for 10 years? Is 3 months an okay amount of time to wait? Is there anything I can do in the meantime to reduce my symptoms? 
    • ShadowLoom
      Gluten Free Cannabis Edibles

      By ShadowLoom · Posted

      I’ve used tinctures and made my own edibles with gluten-free ingredients to stay safe. Dispensary staff don’t always know about gluten, so I double-check labels or just make my own.
    • Scott Adams
      Damage after 13 years gluten free

      By Scott Adams · Posted

      It's great to hear that there are some good doctors out there, and this is an example of why having a formal diagnosis can definitely be helpful.
    • RMJ
      Damage after 13 years gluten free

      By RMJ · Posted

      Update: I have a wonderful new gastroenterologist. She wants to be sure there’s nothing more serious, like refractory celiac, going on. She ordered various tests including some micronutrient tests that no one has ever ordered before.  I’m deficient in folate and zinc and starting supplements for both. I’m so glad I decided to go to a new GI!
×
×
  • Create New...