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

How Much Gluten To Test Yourself?

Mopsiehoney

Recommended Posts

Mopsiehoney Newbie
Mopsiehoney
Posted

Hi -- I'm new to the site. I've been cruising around and finding so much helpful information.

I have a question about "self-testing" regarding celiac.

Background: For about 6 weeks I was having diarrhea on and off. It was green in color despite the fact that I wasn't eating very many vegetables. When the diarrhea began I started eating more cheese and bread trying to "even things out." After 6 weeks I went to see my doctor. After examining me she said she thought I had celiac. She put me on a gluten-free diet for two weeks.

After eating gluten-free for about 5 days I felt better and the diarrhea disappeared. Also my stool was back to being brown in color. When I saw my doctor again she said that I would need to eat gluten-free the rest of my life. I asked her about testing. I had already read up on that some from this site. She was going to look into it to decide whether she should refer me to a GI specialist or not.

Then my doctor went on medical leave unexpectedly. SO -- I'm getting frustrated because I want to know for certain one way or the other. I had some regular cake at a bridal shower the other day. I thought I would use that as a "test" to see if I really have celiac or whether it could be something else -- especially since my stress level has been high lately. (From work)

Nothing happened. No diarrhea, no change in stool color, nothing. Since then I've continued to eat gluten-free because I wasn't sure how much gluten I would need to eat to "prove" that I do or do not have celiac disease.

So my question is how much gluten I would need to eat to be sure in this "self test." I figured since you have to eat gluten for six months before getting the biopsy that maybe I would just put myself back on gluten so that once I get my biopsy I would be ready. Either that or I would know that I was celiac without having to get the biopsy.

Any thoughts you have would help....

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

Celiac.com Sponsor (A8-M):


Guhlia Rising Star
Guhlia
Posted

If you want a diagnosis I would recommend going through Enterolab. It's not cheap, but at least then you'll know AND so long as you don't give the results to your doctor or try to get insurance reimbursement, it will stay off your medical record. Plus, you don't need to eat any gluten before the testing. It will still be accurate so long as you haven't been gluten free for too long. They told me that it could be accurate possibly up to two years after going gluten free.

Mopsiehoney Newbie
Mopsiehoney
Posted
  • Author
If you want a diagnosis I would recommend going through Enterolab. It's not cheap, but at least then you'll know AND so long as you don't give the results to your doctor or try to get insurance reimbursement, it will stay off your medical record. Plus, you don't need to eat any gluten before the testing. It will still be accurate so long as you haven't been gluten free for too long. They told me that it could be accurate possibly up to two years after going gluten free.

I've seen that word Enterolab on here often -- but I'm not clear on what it is -- how would I go through them to get the testing done?

Also -- is it important to keep it off your medical record? Does it make insurance increase or something?

Thanks for the reply! :)

marciab Enthusiast
marciab
Posted

I can't afford Enterolab at this point, so I did a couple of wheat challenges. And I just ate as much wheat as I wanted since it was probably going to be the last time I ate wheat, I figured I might as well enjoy it. :)

I had different reactions to wheat when I did my wheat challenges. One of the challenges I got "D" right away and sharp abdominal pains like I had swallowed glass. And during the other challenge, I got "C" for about 3 days, cramping, gas, bloating, sharp pains in my abdomen and then non stop "D" for a day or two.

All in all the last attempt took me about 10 - 14 days to recover from.

Hope this helps. Marcia

Mopsiehoney Newbie
Mopsiehoney
Posted
  • Author
I can't afford Enterolab at this point, so I did a couple of wheat challenges. And I just ate as much wheat as I wanted since it was probably going to be the last time I ate wheat, I figured I might as well enjoy it. :)

I had different reactions to wheat when I did my wheat challenges. One of the challenges I got "D" right away and sharp abdominal pains like I had swallowed glass. And during the other challenge, I got "C" for about 3 days, cramping, gas, bloating, sharp pains in my abdomen and then non stop "D" for a day or two.

All in all the last attempt took me about 10 - 14 days to recover from.

Hope this helps. Marcia

Thank you Marcia -- it does help!

I'm going to check into the Enterolab thing but since money is tight right now I might not be able to afford it either -- maybe I will go ahead and try a "wheat challenge" on myself.

I'm crossing my fingers -- I just want to know more certainly one way or the other.

Guhlia Rising Star
Guhlia
Posted
I've seen that word Enterolab on here often -- but I'm not clear on what it is -- how would I go through them to get the testing done?

Also -- is it important to keep it off your medical record? Does it make insurance increase or something?

Thanks for the reply! :)

www.enterolab.com If you have private insurance, or may need to get private insurance in the future, you probably DO NOT want celiac on the record books. Many, many people are denied private insurance because of things much less than celiac. I was denied insurance because I had ear infections as a child (26 years ago). Insurance companies are really funny about pre-existing conditions.

If you can't afford the enterolab, i would do a gluten challenge. Go gluten free for 8 weeks, then reintroduce it and see what happens. Make sure that you're not introducing anything else new at the same time. You will also likely want to avoid dairy because most celiacs have a short period of time where they cannot handle dairy. I can't remember if it's casein or lactose that you have to avoid. I'm sure someone else will post it for you.

Mopsiehoney Newbie
Mopsiehoney
Posted
  • Author
www.enterolab.com If you have private insurance, or may need to get private insurance in the future, you probably DO NOT want celiac on the record books. Many, many people are denied private insurance because of things much less than celiac. I was denied insurance because I had ear infections as a child (26 years ago). Insurance companies are really funny about pre-existing conditions.

If you can't afford the enterolab, i would do a gluten challenge. Go gluten free for 8 weeks, then reintroduce it and see what happens. Make sure that you're not introducing anything else new at the same time. You will also likely want to avoid dairy because most celiacs have a short period of time where they cannot handle dairy. I can't remember if it's casein or lactose that you have to avoid. I'm sure someone else will post it for you.

Thanks for the link -- I checked it out -- and it seems a bit too much for my budget right now. So I think I will try my own "gluten challenge." I'm going to check on when I started gluten-free so I can make sure I wait the 8 weeks. Also it's good to know to avoid the dairy because I LOVE dairy and wouldn't have thought to leave it out while doing the gluten challenge.

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.

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


  • Member Statistics

    • Total Members
      131,900
    • Most Online (within 30 mins)
      7,748
    tessycork47
    Newest Member
    tessycork47
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

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



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • trents
      New (possible) celiac diagnosis

      By trents · Posted

      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      New (possible) celiac diagnosis

      By Judy M · Posted

      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      Patiently Waiting to See Results

      By Scott Adams · Posted

      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      Gluten free beer ?

      By Scott Adams · Posted

      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
    • trents
      Patiently Waiting to See Results

      By trents · Posted

      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
×
×
  • 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.