Jump to content
  • You are not alone. Join Celiac.com for trusted gluten-free answers and forum support.



  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

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.

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

    • Total Members
      134,199
    • Most Online (within 30 mins)
      10,442

    Tricia01
    Newest Member
    Tricia01
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • cristiana
      I just thought I'd update this post. My father has had some issues with his heart rythym and we found giving him an electrolyte drink plus a vitamin D supplement with extra calcium containing food (yoghurt) made a big difference, and very quickly. My own problems with ectopic heartbeats started up again with warmer weather so I thought I'd take a leaf out of his book, and now, for the second time, after just one Phizz Electrolyte Drink, and a dose of vitamin D (Fultium D 800 x 4) with a milkshake, my ectopics disappeared within the hour.   Probably the Phizz drink rather than the D with calcium, but maybe it all helped?  Just mentioning this in case anyone is looking for answers.
    • Russ H
      Do you have the standard range for the test results you received? A level of anti-tTG2 antibodies at least 10x the standard range is almost certainly (>98%) due to coeliac disease. Moderately raised levels can be caused by other conditions as well as coeliac disease. Accuracy of the No-Biopsy Approach for the Diagnosis of Celiac Disease in Adults: A Systematic Review and Meta-Analysis It is possible to have latent or early stage coeliac disease without histological changes visible by microscope. As has been suggest in this thread, if the repeat test comes up negative and serology is high, request an HLA genetic test from your specialist. Only 40 % of the population carries an HLA gene variant enabling the development of coeliac disease - if you test negative for this, it is quite unlikely that you have coeliac disease.  
    • Wheatwacked
      Hi @Ginger38, By now you know that these things improve without gluten. I once saw an interview with a corporation executive where he proudly declared that his wheat products are more addictive than potato chips. Dr Fuhrman (Eat to Live) said find foods that are friendly to you to be friends with.  
    • cristiana
      Hi @CC90 Ah... that is very interesting.  Although it is very annoying for you to have to go through it all again, I would say that almost sounds like an admission that they didn't look far enough last time?   I could be wrong, but I would not be at all surprised if they find something on the next attempt.  Coeliac damage can be very patchy, as I understand it, so that's why my own gastroenterologist always likes to point out that he's taken lots of samples!  In the kindest possible way (you don't want to upset the person doing the procedure!) I'd be inclined to tell them what happened last time and to ask them in person to take samples lower down, as  if your health system is anything like the one in my country, communication between GPs, consultants and hospitals isn't always very good.  You don't want the same mistake to be made again. You say that your first endoscopy was traumatic?  May I ask, looking at your spelling of coeliac, was this done at an NHS hospital in England?  The reason for the question is that one of my NHS diagnosed friends was not automatically offered a sedative and managed without one.  Inspired by her, I tried to have an endoscopy one time, in a private setting, without one, so that I could recover quicker, but I had to request sedative in the end it was so uncomfortable.    I am sorry that you will have to go through a gluten challenge again but to make things easier, ensure you eat things containing gluten that you will miss should you have to go gluten free one day. 😂 I was told to eat 2 slices of normal wholemeal bread or the equivalent every day in the weeks before , but I also opted for Weetabix and dozens of Penguin chocolate biscuits.  (I had a very tight headache across my temple for days before the procedure, which I thought was interesting as I had that frequently growing up. - must have been a coeliac symptom!)  Anyway, I do hope you soon get the answers you are looking for and do keep us posted. Cristiana  
    • CC90
      Hi Cristiana   Yes I've had the biopsy results showing normal villi and intestinal mucosa.  The repeat endoscopy (requested by the gastro doc) would be to take samples from further into the intestine than the previous endoscopy reached.      
×
×
  • Create New...