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

Are There Less Expensive Ways Of Getting Tested?


sneaky-flute

Recommended Posts

sneaky-flute Rookie

I suspect I have celiac disease and would like to have it confirmed before committing to a lifelong diet. The problem is that the blood test and biopsy cost thousands. Is there a way to get a definitive diagnosis without paying an arm and a leg? 


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



Celiac.com Sponsor (A8-M):



bartfull Rising Star

The only thing you could do would be to go completely and strictly gluten-free for a few months and see if your symptoms improve. Then go back to eating gluten for a while and see if your symptoms get worse.

 

If you see and improvement on a gluten-free diet and find your symptoms getting worse again when you challenge, you won't have a diagnosis but you will know you either have celiac or NCGI. The treatment for both is the same - strictly gluten-free for life.

kareng Grand Master

Knot sure where you live. Some of the Celiac Centers have free blood testing. You could also see if you qualify for any help? State? County? Public hospital?

LauraTX Rising Star

If you are trying to do it and can't afford the whole diagnostic workup, Karen's suggestions of a public clinic or research hospital are good.  If you can't find something like that, you could do one blood test at a time to let the results trickle in, and you may get something indicative enough of Celiac disease that you are comfortable calling it that without an endoscopy.  However, if you can manage any way to get the full diagnostic workup and endoscopy, that really can help you know if other things are going on, especially if it turns out to not be Celiac disease.

 

You could also just trial a gluten-free diet now like Bartfull said.  If you are really itching to know and your financial situation allows in the future, it will be a 12 week period of eating gluten.  There are a good number of people here on the forum that did that, and feel no need to go get formally diagnosed.  Just try to weigh the benefits and decide what is best for yourself.

sneaky-flute Rookie

What is this "new" celiac test and how do I request it? 

kareng Grand Master

What is this "new" celiac test and how do I request it?

What are you referring to?

mamaw Community Regular

No "new" celiac test.. I'm guessing you have no insurance? But if you have symptoms you can go to a free clinic like Bartful said...some states provide a GP doctor for people with needing medical help....Public welfare also has medical programs ...


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



Celiac.com Sponsor (A8-M):



sneaky-flute Rookie

I have insurance but from my understanding, these tests can set a person back a grand or two even with insurance. 

 

This test I'm referring to can identify celiac markers with greater specificity and you don't have to eat gluten before undergoing the process. Maybe it's not publicly available yet. 

kareng Grand Master

I have insurance but from my understanding, these tests can set a person back a grand or two even with insurance.

This test I'm referring to can identify celiac markers with greater specificity and you don't have to eat gluten before undergoing the process. Maybe it's not publicly available yet.

You can get a genetic test for about $300. It will tell you if you have a possibility of having Celiac. but 30% of people have a gene for Celiac and only about 1% actually develope Celiac. so just having the gene does not mean you have Celiac.

If you just want a basic Celiac panel, call Quest diagnostics and ask for the cost.

Edited to add: I am talking about legitimate, currently available medical testing.

LauraTX Rising Star

There are no scientifically valid tests (aside from the genetic test) that are accurate when one is not consuming gluten.  Getting something like that is a top priority for Celiac researchers but they are not there yet.  While I understand it is easy to assume something is not affordable, why don't you contact your lab of choice and ask about pricing before you assume as such?  Any money you spend on a diagnosis is an investment in your health for the rest of your life and well worth it in my opinion.  Also, unless your insurance plan has a stacked deductible, you are not going to be paying 100% out of pocket for lab costs.  You can get information on what your portion would be from your insurance company so you can estimate costs and save up to get them done if that is needed.

Archived

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

  • 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. - TheDHhurts posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Prana Organics no longer GFCO-certified

    2. - cristiana replied to Dizzyma's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Newly diagnosed mam to coeliac 11 year old

    3. - trents replied to Dizzyma's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Newly diagnosed mam to coeliac 11 year old

    4. - Dizzyma posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Newly diagnosed mam to coeliac 11 year old

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,925
    • Most Online (within 30 mins)
      7,748

    Jimlock
    Newest Member
    Jimlock
    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

    • TheDHhurts
      I've been buying my seeds and nuts from Prana Organics for a number of years because the products have been GFCO-certified. I just got a new order delivered of their flax and sunflower seeds, and it turns out that they are no longer GFCO-certified. Instead, it just has a generic "Gluten Free" symbol on the package. I reached out to them to ask what protocols/standards/testing they have in place. The person that wrote back said that they are now certifying their gluten free status in-house, but that she couldn't answer my questions related to standards because the person with that info was on vacation. Not very impressed, especially since it still says on their website that they are GFCO-certified. Buyer beware!
    • cristiana
      Hi @Dizzyma I note what @trents has commented about you possibly posting from the UK.  Just to let you know that am a coeliac based in the UK, so if that is the case, do let me know if can help you with any questions on the NHS provision for coeliacs.    If you are indeed based in the UK, and coeliac disease is confirmed, I would thoroughly recommend you join Coeliac UK, as they provide a printed food and drink guide and also a phone app which you can take shopping with you so you can find out if a product is gluten free or not. But one thing I would like to say to you, no matter where you live, is you mention that your daughter is anxious.  I was always a bit of a nervous, anxious child but before my diagnosis in mid-life my anxiety levels were through the roof.   My anxiety got steadily better when I followed the gluten-free diet and vitamin and mineral deficiencies were addressed.  Anxiety is very common at diagnosis, you may well find that her anxiety will improve once your daughter follows a strict gluten-free diet. Cristiana 
    • trents
      Welcome to the celic.com community @Dizzyma! I'm assuming you are in the U.K. since you speak of your daughter's celiac disease blood tests as "her bloods".  Has her physician officially diagnosed her has having celiac disease on the results of her blood tests alone? Normally, if the ttg-iga blood test results are positive, a follow-up endoscopy with biopsy of the small bowel lining to check for damage would be ordered to confirm the results of "the bloods". However if the ttg-iga test score is 10x normal or greater, some physicians, particularly in the U.K., will dispense with the endoscopy/biopsy. If there is to be an endoscopy/biopsy, your daughter should not yet begin the gluten free diet as doing so would allow healing of the small bowel lining to commence which may result in a biopsy finding having results that conflict with the blood work. Do you know if an endoscopy/biopsy is planned? Celiac disease can have onset at any stage of life, from infancy to old age. It has a genetic base but the genes remain dormant until and unless triggered by some stress event. The stress event can be many things but it is often a viral infection. About 40% of the general population have the genetic potential to develop celiac disease but only about 1% actually develop celiac disease. So, for most, the genes remain dormant.  Celiac disease is by nature an autoimmune disorder. That is to say, gluten ingestion triggers an immune response that causes the body to attack its own tissues. In this case, the attack happens in he lining of the small bowel, at least classically, though we now know there are other body systems that can sometimes be affected. So, for a person with celiac disease, when they ingest gluten, the body sends attacking cells to battle the gluten which causes inflammation as the gluten is being absorbed into the cells that make up the lining of the small bowel. This causes damage to the cells and over time, wears them down. This lining is composed of billions of tiny finger-like projections and which creates a tremendous surface area for absorbing nutrients from the food we eat. This area of the intestinal track is where all of our nutrition is absorbed. As these finger-like projections get worn down by the constant inflammation from continued gluten consumption before diagnosis (or after diagnosis in the case of those who are noncompliant) the efficiency of nutrient absorption from what we eat can be drastically reduced. This is why iron deficiency anemia and other nutrient deficiency related medical problems are so common in the celiac population. So, to answer your question about the wisdom of allowing your daughter to consume gluten on a limited basis to retain some tolerance to it, that would not be a sound approach because it would prevent healing of the lining of her small bowel. It would keep the fires of inflammation smoldering. The only wise course is strict adherence to a gluten free diet, once all tests to confirm celiac disease are complete.
    • Dizzyma
      Hi all, I have so many questions and feel like google is giving me very different information. Hoping I may get some more definite answers here. ok, my daughter has been diagnosed as a coeliac as her bloods show anti TTG antibodies are over 128. We have started her  on a full gluten free diet. my concerns are that she wasn’t actually physically sick on her regular diet, she had tummy issues and skin sores. My fear is that she will build up a complete intolerance to gluten and become physically sick if she has gluten. Is there anything to be said for keeping a small bit of gluten in the diet to stop her from developing a total intolerance?  also, she would be an anxious type of person, is it possible that stress is the reason she has become coeliac? I read that diagnosis later in childhood could be following a sickness or stress. How can she have been fine for the first 10 years and then become coeliac? sorry, I’m just very confused and really want to do right by her. I know a coeliac and she has a terrible time after she gets gluttened so just want to make sure going down a total gluten free road is the right choice. thank you for any help or advise xx 
    • xxnonamexx
      very interesting thanks for the info  
×
×
  • 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.