Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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 Celiac.com!
    eNewsletter
    Donate

What Would You Do?


Jrg

Recommended Posts

Jrg Newbie

I have an endoscopy scheduled for this Wednesday but was just told that my insurance won't cover it. It's going to set us back probably more than $700 in the end. I'm so completely nervous that I'll spend the money only to get negative biopsy results, which would just frustrate me even more. I already tested positive on the deamiated (sp) gliadin iGa blood test, negative on the others. So I know there's a chance the biopsy could go either way. My question is, what would you do? Just assume you have celiacs, go gluten free & cancel the test, or fork over the money just to know for sure?

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



kareng Grand Master

Have your GI contest that by giving the insurance company more info? It might delay it a couple of weeks but that is what most doctors offices do.

Link to comment
Share on other sites
Jrg Newbie

Have your GI contest that by giving the insurance company more info? It might delay it a couple of weeks but that is what most doctors offices do.

They said it was because I hadn't reached my deductible for this year yet. I thought an endoscopy would fall under a different category but it doesn't so I'm not sure if contesting it will do any good.

Link to comment
Share on other sites
kareng Grand Master

They said it was because I hadn't reached my deductible for this year yet. I thought an endoscopy would fall under a different category but it doesn't so I'm not sure if contesting it will do any good.

That's not the same as your insurance won't pay for it. So an appeal wouldn't make any sense.

Link to comment
Share on other sites
Jrg Newbie

That's not the same as your insurance won't pay for it. So an appeal wouldn't make any sense.

Well I didn't suggest an appeal. I said that my insurance wasn't going to cover it. I was originally told that it wouldn't be a problem & I would just have to pay a copay, so now that I found out I will have to cover the full amount I'm just wondering what people would do. I'm torn as to whether I should go through w/it or just take my blood results & vitamin/iron deficiencies & just assume to go gluten free to see what happens.

Link to comment
Share on other sites
Lock Newbie

If it were me, I would go through with the endoscopy IF I trusted the GI doctor to be very thorough and to use the latest techniques to find any villous damage, if the damage exists. If the doctor is not up to speed with diagnosing celiac then a negative result will only confuse you more. But if he is very good, a negative result will assure you that your intestine is healthy. So my answer as to whether you should pay for this and go ahead with the procedure depends on the quality of the doctor.

Link to comment
Share on other sites
cyclinglady Grand Master

I'm self-employed and pay for our health insurance policy.  When you have a policy that has a deductible, you need to set aside money to cover that deductible.  Seven hundred dollars seems like a lot, but in perspective, it's not really.  Not when it involves your health.  

 

In my opinion, this is an "emergency".  The long term side effects of not treating celiac disease are far more costly.  Would you balk if you thought you had cancer?  If you were in a car accident and needed surgery?

 

That said, if you really can't afford the endoscopy, you can always go gluten free based on your blood test.    My hubby did just that.  Docs suggested that he give up gluten and he did.  He strictly adheres to the diet.  I got scoped only because I didn't have a tummy issues and had a hard time believing that both of us have gluten issues.  

 

Hope this helps!

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



kareng Grand Master

Well I didn't suggest an appeal. I said that my insurance wasn't going to cover it. I was originally told that it wouldn't be a problem & I would just have to pay a copay, so now that I found out I will have to cover the full amount I'm just wondering what people would do. I'm torn as to whether I should go through w/it or just take my blood results & vitamin/iron deficiencies & just assume to go gluten free to see what happens.

 

 

I suggested it because I couldn't tell why they wouldn't cover it.  Thought it might help.

 

Myself - I would and did pay for my colonoscopy and endo with the deductible.  It cost a lot more than $700 but I had the colonoscopy portion and anesthesia, too.  I thought it was worth it to see the amount of damage and make sure nothing else was wrong.  We put money aside in a health reimbursement account but its too late for you for this year.  If you are young and haven't had anything medical to pay out before, its not something you would want to do.

 

If you decide to pay yourself. I would find out how much deductible you have to meet.  So you know how much your limit will be.  Also, will you have to pay the pathology company for looking at the biopsy?  Pay any additional for sedation?  Does the doctor bill separately from the center where you are getting the procedure done?  Just some additional costs to consider.   

Link to comment
Share on other sites
nvsmom Community Regular

It depends on you. Would a positive endoscopy help you stay gluten-free? What if the endoscopy is negative (there are a few around here with positive blood tests and negative scope - it's not uncommon), will that affect your dedication to the gluten-free diet?

 

I personally think a scope can be useful if you continue to have long term problems (which would be useful if you get re-scoped in the future for comparisson) or there is another un-idenified health issue in play that needs to be found.

 

I personally did not do the scope and just went gluten-free based on a couple of blood tests. I figured that if I continued to have problems, I could always get the scope done in the future to look for other problems.

 

You have to do what you feel comfortable with.  :) Aren't I helpful?  LOL ;) Good luck with what ever you decide to do.

Link to comment
Share on other sites
Jrg Newbie

Thank you everyone. I went ahead with the endoscopy today, so now I'll just wait for my biopsy results

Link to comment
Share on other sites

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 Fluka66's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Waiting for urgent referral.

    2. - Zackery Brian replied to rsvtwin6's topic in Food Intolerance & Leaky Gut
      6

      Gluten and 30 other Items causing me Severe Muscle Inflamation Pain

    3. - Fluka66 replied to Fluka66's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Waiting for urgent referral.

    4. - Moodiefoodie replied to Moodiefoodie's topic in Related Issues & Disorders
      9

      Joint swelling when ill even on gluten-free diet

    5. - knitty kitty replied to Moodiefoodie's topic in Related Issues & Disorders
      9

      Joint swelling when ill even on gluten-free diet


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      121,063
    • Most Online (within 30 mins)
      7,748

    Nacina
    Newest Member
    Nacina
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      But if you have been off of wheat for a period of weeks/months leading up to the testing it will likely turn out to be negative for celiac disease, even if you actually have celiac disease. Given your symptoms when consuming gluten, we certainly understand your reluctance to undergo  the "gluten challenge" before testing but you need to understand that the testing may be a waste of time if you don't. What are you going to do if it is negative for celiac disease? Are you going to go back to merrily eating wheat/barley/rye products while living in pain and destroying your health? You will be in a conundrum. Do I or do I not? And you will likely have a difficult time being consistent with your diet. Celiac disease causes inflammation to the small bowel villous lining when gluten containing grains are consumed. This inflammation produces certain antibodies that can be detected in the blood after they reach a certain level, which takes weeks or months after the onset of the disease. If gluten is stopped or drastically reduced, the inflammation begins to decrease and so do the antibodies. Before long, their low levels are not detectable by testing and the antibody blood tests done for diagnosing celiac disease will be negative. Over time, this inflammation wears down the billions of microscopic, finger-like projections that make up the lining and form the nutrient absorbing layer of the small bowel where all the nutrition in our food is absorbed. As the villi bet worn down, vitamin and mineral deficiencies typically develop because absorption is compromised. An endoscopy with biopsy of the small bowel lining to microscopically examine this damage is usually the second stage of celiac disease diagnosis. However, when people cut out gluten or cut back on it significantly ahead of time before the biopsy is done, the villous lining has already experienced some healing and the microscopic examination may be negative or inconclusive. I'm not trying to tell you what to do I just want you to understand what the consequences of going gluten free ahead of testing are as far as test results go so that you will either not waste your time in having the tests done or will be prepared for negative test results and the impact that will have on your dietary decisions. And, who are these "consultants" you keep talking about and what are their qualifications? You are in the unenviable position that many who joint this forum have found themselves in. Namely, having begun a gluten free diet before getting a proper diagnosis but unwilling to enter into the gluten challenge for valid testing because of the severity of the symptoms it would cause them.
    • Zackery Brian
      I'm sorry to hear about the challenges you've been facing with your health. Dealing with celiac disease and multiple food sensitivities can indeed be overwhelming. Here are a few thoughts and suggestions based on your experience and the replies you've received: Confirming Diagnosis: It's great that your gastroenterologist confirmed your celiac disease diagnosis through additional tests. Understanding the specifics of your condition can help tailor your approach to managing it more effectively. Food Sensitivity Testing: While blood tests for food sensitivities can provide some insights, they may not always be completely accurate. As mentioned by others, false positives are common, and individual responses to specific foods can vary. Discussing your test results and symptoms with a healthcare professional knowledgeable about celiac disease and food sensitivities can help clarify your situation. Research and Education: Exploring conditions like Mast Cell Activation Syndrome (MCAS) and histamine intolerance could shed further light on your symptoms and provide additional avenues for managing your health. Gathering information from reliable sources and discussing your findings with your healthcare team can help you make informed decisions about your care. Dietary Management: Managing celiac disease and multiple food sensitivities can be challenging, but finding a balance that works for you is crucial. Working with a dietitian who specializes in celiac disease and food intolerances can help you develop a personalized dietary plan that meets your nutritional needs while minimizing symptoms. Stress Management: Chronic pain and health issues can take a toll on mental and emotional well-being. Finding healthy coping strategies to manage stress, such as mindfulness, relaxation techniques, or engaging in activities you enjoy, may help improve your overall quality of life. Remember, you're not alone in your journey, and seeking support from healthcare professionals, support groups, or online communities can provide valuable encouragement and guidance.
    • Fluka66
      Thank you very much for your reply. I hadn't heard of celiac disease but began to notice a pattern of pain. I've been on the floor more than once with agonising pain but this was always put down to another abdominal problem consequently I've been on a roundabout of backwards and forwards with another consultant for many years. I originally questioned this diagnosis but was assured it was the reason for my pain. Many years later the consultant gave up and I had a new GP. I started to cut out certain food types ,reading packets then really started to cut out wheat and went lactose free. After a month I reintroduced these in one meal and ended screaming in agony the tearing and bloating pain. With this info and a swollen lymph node in my neck I went back to the GP.  I have a referral now . I have also found out that acidic food is causing the terrible pain . My thoughts are this is irritating any ulcers. I'm hoping that after a decade the outlook isn't all bad. My blood test came back with a high marker but I didn't catch what it was. My GP and I have agreed that I won't go back on wheat just for the test due to the pain , my swollen lymph node and blood test results.  Trying to remain calm for the referral and perhaps needed to be more forceful all those years ago but I'm not assertive and consultants can be overwhelming. Many thanks for your reply . Wishing you all the best.
    • Moodiefoodie
      Wow! Fascinating info. Thanks so much! I really appreciate the guidance. @Spacepanther Over the years I have had rheumatologists do full lab work ups on me. They told me they had screened me for arthritis, lupus, and Lyme disease (all negative). In addition to joint pain and stiffness I had swelling in both knees that later moved to my elbow as well.  I also experience stiffness and pain in my neck and shoulders when it flares. I vomited fairly often growing up, but there wasn’t a real pattern to it and I didn’t know it wasn’t normal (thought people caught stomach viruses often).  I don’t usually have stomach symptoms immediately after eating gluten that I notice.  The only other joint condition I know of is fibromyalgia. Good luck! Hope you can get it figured out. I only assumed my joint symptoms were due to the celiac’s because it is under control for the most part on a gluten-free diet.  The rheumatologist also mentioned that some inflammatory/autoimmune diseases can be slow-moving and not detectable until they progress.
    • knitty kitty
      @Spacepanther, I found these articles about the connection between Celiac and joint pain. Musculoskeletal Complications of Celiac Disease: A Case-Based Review https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10201087/ And   Intestinal microbiome composition and its relation to joint pain and inflammation https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6814863/ And The gut microbiome-joint connection: implications in osteoarthritis https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6903327/ Sounds like it's time to change the diet to change the microbiome.
×
×
  • Create New...