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

Newbie Question

lonewolf

Recommended Posts

lonewolf Collaborator
lonewolf
Posted

I've been mostly wheat/gluten free for about 9-1/2 years now, as well as dairy-free, egg-free and soy-free. I have never had any testing done for celiac disease, but am starting to wonder if I am more than just "allergic" to gluten. I have not been good about eliminating all the "hidden" glutens lurking around and every once in a while slip up and eat a spelt pancake or something. I never have immediate problems, but enough to tell me that it's a mistake.

I am REALLY tired of going to doctors and being tested for stuff. I've had almost 2 years of pretty good health (hmmm, corresponding to being more careful about gluten) and have enjoyed no blood tests for anything. I'm surprised my naturopath hasn't recommended being tested for celiac disease, although I think she figures I already don't eat gluten, so it's not a problem.

My question is, do I have to eat a bunch of gluten for all the tests to be accurate? I don't know if I could handle that. I would almost rather assume that I have celiac disease and do a better job monitoring my diet. On the other hand, it would be nice to know for sure so I don't deprive myself uneccessarily.

Thanks for the help.

Liz

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

Celiac.com Sponsor (A8-M):


Jnkmnky Collaborator
Jnkmnky
Posted

When you slip up, you notice you don't feel well?? So why try and prove it with a test? You don't even want to hear that you have to eat lots of gluten prior to testing...sooooo......

Hey, you can't eat gluten. :P Now that you've found this site, work on being 100% gluten free and see how that makes you feel!

KaitiUSA Enthusiast
KaitiUSA
Posted

Yes, you need to be on gluten for tests to be accurate. They usually say you need to eat equal to 2-3 pieces of bread a day for 3 months prior.

However, if you have been gluten free for so long why are you trying to get tested now? Are you still sick? If you are then maybe you need to look at if any gluten is slipping in through products like makeups or anything. Getting tested for celiac while being gluten free is worthless though.

Have you got intolerance and allergy testing? There may be something else contributing if you have been 100% gluten free and that could not be it.

lonewolf Collaborator
lonewolf
Posted
  • Author

Thanks for your responses. I had food allergy testing done several years ago, which is why I am gluten-free, egg-free, soy-free and dairy-free. I KNOW that I need to avoid all these things. I just wonder sometimes if it's all in my head that I have to be super careful, especially with gluten. Those of you with spouse/children (I have 4) who can eat anything know how hard it can be to cook separately. I make mostly gluten free everything for all of us, even though it's more expensive, just because I don't want to have to cook 2 separate meals all the time.

The thought of having to eat gluten for 3 months is enough to make me forget about the idea of testing. I'm not "sick" right now, but I have a kidney disease that is in remission (going on 2 years now) and I have psoriasis that I can't seem to control unless I completely fast for long periods or take prednisone.

I think I'll just stick to gluten-free and be more diligent.

Liz

RiceGuy Collaborator
RiceGuy
Posted

Simply put, gluten intolerance means absolutely zero gluten in your diet. Being just sorta gluten-free isn't enough. An allergy is a different thing altogether.

Heck, anyone who goes gluten-free knows how tough it is, but at the same time knows how bad they felt beforehand. I'll never touch the stuff again - NEVER!

Having said that, I just found out my all natural shampoo has barley malt and wheat something-or-other in it! I'm so disappointed. I really liked that stuff, but now I have to switch :( Maybe that's what has been giving me certain mysterious reactions, which I've been unable to pinpoint.

jerseyangel Proficient
jerseyangel
Posted

The barley malt ingred. in your shampoo can cause you to have symptoms! Early on in my quest to be completely gluten-free, I was still getting D every afternoon after feeling ok when I woke up. Anyway, I read that the hair gel I was using had wheat in it. I threw it away, along with most of what I had under the sink (wheat in almost everything!!!) That did the trick. I'm as careful with products as I am with my food.

Archived

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

Go to topic listing

  • 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. trents
      - trents replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified...
    2. trents
      - trents replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Disaccharide deficient, confusing biopsy results, no blood test

      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you...
    3. Paulaannefthimiou
      - Paulaannefthimiou posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

      Are Bobresmill gluten free oats ok for sensitive celiacs?
    4. jenniber
      - jenniber replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Disaccharide deficient, confusing biopsy results, no blood test

      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks! i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me b...
    5. trents
      - trents replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      High TTG-IgG and Normal TTG-IgA

      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,847
    • Most Online (within 30 mins)
      7,748
    L.Garcia24
    Newest Member
    L.Garcia24
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • trents
      Bob red mill gluten free oats

      By trents · Posted

      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
    • trents
      Disaccharide deficient, confusing biopsy results, no blood test

      By trents · Posted

      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Bob red mill gluten free oats

      By Paulaannefthimiou · Posted

      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
      Disaccharide deficient, confusing biopsy results, no blood test

      By jenniber · Posted

      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
    • trents
      High TTG-IgG and Normal TTG-IgA

      By trents · Posted

      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
×
×
  • 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.