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.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to BelleDeJour's topic in Dermatitis Herpetiformis
      26

      Dermatitis Herpetiformis - follow up dermatology appointment coming up

    2. - Prom363 replied to Ginger38's topic in Coping with Celiac Disease
      1

      The Struggle Has Overtaken Me

    3. - Ginger38 posted a topic in Coping with Celiac Disease
      1

      The Struggle Has Overtaken Me

    4. - suek54 replied to BelleDeJour's topic in Dermatitis Herpetiformis
      26

      Dermatitis Herpetiformis - follow up dermatology appointment coming up

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

    • Total Members
      134,163
    • Most Online (within 30 mins)
      10,442

    Prom363
    Newest Member
    Prom363
    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

    • trents
      @BelleDeJour, why did the dermatologist not take a punch biopsy to confirm or eliminate dermatitis herpetiformis? Were you not in an active outbreak stage?
    • Prom363
      I know it's really hard to be gluten free. When I first started out, IT WAS SO HARD. I eventually had to start telling myself that I was "allergic". Even though I'm not, gluten affects my body negatively. If you're allergic, you stay completely away. I always have my "safe" foods. Options that I always know where I can eat or what I can make that are easy and delicious. If I don't plan ahead, that's when I'm super tempted to go off track. Texas roadhouse rolls used to ALWAYS make me chance it and then they would make me so sick. I eventually had to tell myself, you are allergic. That is something you cannot have. It really helped me. I hope this helps! Have you ever tried baking with almond flour? It may take some trial and error but I've had some great muffins and banana bread from almond flour that may help with your blood sugar. 
    • Ginger38
      I don't know how to even begin this or what topic to post this under, so feel free to move it if need be, but I just need a place where I can be honest and I need to vent to people who can relate and who can hopefully inspire me to get back on the right track with my life. This whole gluten / celiac/ testing etc has been nothing but an uphill battle and struggle for me since it began. When I went gluten free years back, it was the hardest thing I ever did, and I did it on my own without much help or guidance aside from this group. I am a foodie and a carb lover and a baker and having to give up so many foods that brought me so much happiness was so incredibly hard for me, but I eventually did it. Even when people encouraged me to have just a little or cheat here and there I didn't give in.  I have since developed uncontrolled diabetes which has complicated all this to say the very least, because none of the breads, flours or replacement foods, that actually taste semi good are diabetic friendly (at least not for me). So I have struggled with eating gluten off and on in the form of crackers and breads and low carb keto foods, even though I know I shouldn't. I do good for a while and then I completely lose control again and somehow justify it in my mind.  Inevitably because of my struggles, I was really concerned about going back on gluten (full time) for the gluten challenge, I mean it gave me an excuse to party hard, and be miserable while doing so, but I was afraid once I did that challenge for 8-10 weeks that I would never be able to give the gluten back up again. And that is exactly where I am sitting at as we speak. It has been an on again off again roller coaster ride of no gluten, gluten, little gluten, no gluten, lots of gluten etc.  I go from buying small loaves of bread and keto tortillas and buns to whole wheat buns and pasta - justifying it somewhat because it is better for my blood sugar issues and that is what is most important. I binge eat some of the foods and then I feel horribly guilty for eating it and then I end up throwing all the gluten food away in a desperate attempt to stop the madness. Then I restart the process all over again at some point.  My joints ache. My stomach is constantly sour. I walk around like I have terrible arthritis or something. My hands are swelling terribly, sometimes I can't even make a fist. I am experiencing numbness and tingling in my hands and weird things with numbness and tightness in my face as well. I am dropping things constantly. I am forgetting lots of things and struggle to recall things. I can't focus on my work. I am having nightmares. I am wanting to sleep all the time. I am bloated and sometimes have diarrhea and nausea, but then other times I am horribly constipated. My  post herpetic neuralgia issues from shingles are much worse now and overall I am just so irritable and angry and emotionally numb.   I know for some it is a simple choice, but I can't be alone in this struggle. Thanks for letting me getting all this out there. I hope someone can scare or encourage some sense into me. It is kind of insane what I do to myself. And I am just tired of dealing with all the food issues and health issues   
    • suek54
      Hi Belle, well done for advocating brilliantly for yourself. Looks like you have a good dermatologist on board now to help you go forward. Hope your elimination diet continues to keep you itch free. Sue
    • BelleDeJour
      Hi everyone I have just come out of the Dermatology appointment on a bit of a high! Derm said that she does not see dermatitis herpetiformis often but believes everything I said about thinking that I have it. She said it is either that or a wheat allergy - either way, the answer is the same, no gluten. She said that she spends her working life advising people to trial eliminating wheat and diary etc. but they don't do so (I did say that I am equally as guilty and it really got to the point of desperation with me before I tried eliminating gluten. Plus I knew it was not an eczema flare when the little bumps appeared on my skin. She will do a blood and a FIT test for Coeliac but expects both to be negative. I said that I would refuse to do a 'gluten challenge' if she recommended one and she smiled and said she admired me for that, it is not necessary as my evidence was very clear. She did not think a biopsy would be worth doing but did see the bumps on my feet and said that yes, they do suggest gluten/Coeliac/what allergy.  She said that she would like me to be her 'case study' for investigating this so thoroughly myself - and for trying the elimination diet! She does not see dermatitis herpetiformis often. All my bloods that were taken when I was at my lowest point after seeing her were (surprisingly to me) normal. Iron was just a bit low but I have since increased all my vitamin and mineral intake. I did not mention Dapsone because I think I can do this with diet alone now that I appear to have cut out everything that was irritating me (thanks to you guys here). She will give me a repeat prescription of Elocon to use to clear the final areas of sore skin up. I will stay here with you all as we all progress through this.   
×
×
  • Create New...