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

Getting Tested

gfpagan

Recommended Posts

gfpagan Apprentice
gfpagan
Posted

If I am going 100% gluten free because of gluten intolerance is getting tested for celiac necessary? Either way I'm going to be gluten free and it's not like they are going to cure me for knowing for sure. Anyone else in the same boat?

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

Celiac.com Sponsor (A8-M):


maile Newbie
maile
Posted
If I am going 100% gluten free because of gluten intolerance is getting tested for celiac necessary? Either way I'm going to be gluten free and it's not like they are going to cure me for knowing for sure. Anyone else in the same boat?

the short answer is No, you don't need to be tested. Some feel it's easier because there is less resistance to having a gluten-free diet if you have an official diagnosis but as many have said you don't need a Dr's permission to go gluten-free.

I'm self diagnosed, my Dr is a wonderful guy but old school and has trouble with the fact that I am not losing tons of weight yet still claim to be gluten intolerant. (he keeps sending me for blood tests even tho I tell him not to bother because I haven't eaten enough gluten for it to register ;) )

there are many self diagnosed on this board and others. given how hard it is to diagnose celiac by conventional testing it's not surprising many have just decided to forgo gluten rather than go through a gluten challenge just to maybe be diagnosed.

gfpagan Apprentice
gfpagan
Posted
  • Author

Great reply! that makes me feel more confident in my decision. I hate the idea of having to go back on gluten to get a test that may or may not tell me something that I'm going to do anyway.

Thank you!

the short answer is No, you don't need to be tested. Some feel it's easier because there is less resistance to having a gluten-free diet if you have an official diagnosis but as many have said you don't need a Dr's permission to go gluten-free.

I'm self diagnosed, my Dr is a wonderful guy but old school and has trouble with the fact that I am not losing tons of weight yet still claim to be gluten intolerant. (he keeps sending me for blood tests even tho I tell him not to bother because I haven't eaten enough gluten for it to register ;) )

there are many self diagnosed on this board and others. given how hard it is to diagnose celiac by conventional testing it's not surprising many have just decided to forgo gluten rather than go through a gluten challenge just to maybe be diagnosed.

Tallforagirl Rookie
Tallforagirl
Posted
If I am going 100% gluten free because of gluten intolerance is getting tested for celiac necessary? Either way I'm going to be gluten free and it's not like they are going to cure me for knowing for sure. Anyone else in the same boat?

You may not need to know, but if you're not going to get tested I'd err on side of caution and get a full blood count and bone density test. Vitamin deficiencies and osteoperosis are very common amongst undiagnosed celiacs, but both treatable if caught early.

rinne Apprentice
rinne
Posted

Hi. :)

I agree, blood work to look at your vitamin and mineral levels is a very good idea, many celiacs are deficient in B and D vitamins and supplementing with them can be very helpful.

I never went the route of testing because I too understood that gluten was a problem for me, in my case though a brother and sister both diagnosed through endoscopy made the decision easy.

gfpagan Apprentice
gfpagan
Posted
  • Author

I wouldn't need to go back on gluten to get these tests done right? Maybe I'll make an appointment with a diet change and talk to them about tests that should be done.

Hi. :)

I agree, blood work to look at your vitamin and mineral levels is a very good idea, many celiacs are deficient in B and D vitamins and supplementing with them can be very helpful.

I never went the route of testing because I too understood that gluten was a problem for me, in my case though a brother and sister both diagnosed through endoscopy made the decision easy.

rinne Apprentice
rinne
Posted
I wouldn't need to go back on gluten to get these tests done right? Maybe I'll make an appointment with a diet change and talk to them about tests that should be done.

Nope, no gluten required for these tests. :)

And congratulations on having the confidence to make a choice for yourself.

I think the gluten challenge is a horrific thing to do to our bodies, somehow being sick enough to feel like you are dying and eating the foods that are making you feel this way in order to do enough damage that they can see it just doesn't work for me. :lol:

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

Celiac.com Sponsor (A8-M):


gfpagan Apprentice
gfpagan
Posted
  • Author

Thank you (-: I feel good knowing I discovered it myself and didn't have the frustration (at least too much) of doctors trying to tell me otherwise.

Nope, no gluten required for these tests. :)

And congratulations on having the confidence to make a choice for yourself.

I think the gluten challenge is a horrific thing to do to our bodies, somehow being sick enough to feel like you are dying and eating the foods that are making you feel this way in order to do enough damage that they can see it just doesn't work for me. :lol:

Leper Messiah Apprentice
Leper Messiah
Posted

I'm in the same boat although I'm weighing up tackling the stoopid gluten challenge just to get a prescription for gluten free food (from the NHS in the UK) - it is literally costing me a fortune. Here's hoping a better way to test and confirm gluten intolerance is not too far away.

one more mile Contributor
one more mile
Posted

There should be a better way to be tested. I have not been tested and can not imagine Eating what I know is poison just to find out officially that it is. In the uk will they accept the DNA test?

ang1e0251 Contributor
ang1e0251
Posted

I think it is barbaric to make you eat gluten for weeks for a test. Come on, do you know any GI dr that would rub poison ivy all over his body every day for 3 months just so it could do a huge amount of damage to skin to dx it?

Archived

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

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


  • Member Statistics

    • Total Members
      131,899
    • Most Online (within 30 mins)
      7,748
    dcarter1682
    Newest Member
    dcarter1682
    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)

  • 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.