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

Help With Dilemma - Wait For Endoscopy?

superfob

Recommended Posts

superfob Contributor
superfob
Posted

Hi,

I was finally able to book an appointment with a gastrointestinal doctor after explaining my symptoms to my primary care doctor. With my current insurance plan, they are not allowing me to see doctors outside my university health center unless I am referred and the procedure cannot be done there. So, currently I am stuck with an appointment which is at least 1 month away with a gastro who unlikely has a good knowledge of Celiac. I have already ran a Celiac panel with Quest testing for IgA AGA and tTG IgA, and the AGA came up positive.

So my current options are:

1. wait for the appointment in March so that insurance can cover my costs for testing, while still consuming gluten all this time - I may possibly get put off by the gastro since my tTG is negative, and even if he does allow me to do the biopsy, it seems like I won't be able to go gluten free until April/May (depending on how long biopsy would take to schedule)

2. go gluten free now, and pursue the diagnosis months later with a gluten challenge: the reason I would consider this is because I am currently in school, and my concentration is so horrible I can just foresee my grades dropping significantly

3. directly see a doctor who is knowledgeable in Celiac and pay out of pocket

So one question I have is: does anyone know how much a biopsy would cost out of pocket?

I really can't see what my list of symptoms would be attributed to other than some sort of sensitivity to gluten/other foods. Its so hard though, especially with most doctors not knowing too much about it, and also I feel like my brain is going haywire and I continually doubt myself. I feel like I have so little control over my mind right now...=(.

Thanks

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

Celiac.com Sponsor (A8-M):


Lisa Mentor
Lisa
Posted

Positive blood work is considered a diagnosis. AGA is a relatively new test and is pretty accurate. If I were you, I would consider myself diagnosed and would continue with the gluten free diet.

And endo at this point could indicate the the level of damage. But, it might not be a bad idea to have a base line exam. For those of us with intestinal distress, it's not a bad thing, at the least, to rule out other more serious issues......just sayin' ;)

Jestgar Rising Star
Jestgar
Posted

Option 4. Stop eating gluten and if you feel better, never do a challenge. Why do you need a doctor's permission to choose your food?

ravenwoodglass Mentor
ravenwoodglass
Posted

You have had positive blood tests. I would just go gluten free and not look back. There are doctors who will skip the biopsy with positive bloodwork as the biopsy has a fairly high chance of a false negative anyway. The TTG being negative is a good thing as it shows (I think) that as of right now you don't have a lot of autoimmune damage going on. If you stay on gluten long enough that likely will change but that is not a change you would want.

superfob Contributor
superfob
Posted
  • Author

Hmmm...I thought that AGA can be elevated by other circumstances, which is why I thought about additional testing. But I see what you guys are saying. I guess a large part of me just wants a better confirmation so I'll be strict about the diet - and also for social situations with friends and family. I guess another option I have is to get tested with Prometheus labs - I hear that they are much more accurate than Quest from posts on this forum. And then go gluten free afterwards regardless.

sa1937 Community Regular
sa1937
Posted

Hi,

So one question I have is: does anyone know how much a biopsy would cost out of pocket?

I'm guessing an EGD/biopsy would cost several thousand dollars.

My lab work was done through Quest (they are who my local hospital uses for lab work that is not done in-house). My daughter, who lives in Denver, had hers done through LabCorp. We both came up highly positive...I had the biopsy and she just went gluten-free after getting the results of her labs.

ravenwoodglass Mentor
ravenwoodglass
Posted

Hmmm...I thought that AGA can be elevated by other circumstances, which is why I thought about additional testing. But I see what you guys are saying. I guess a large part of me just wants a better confirmation so I'll be strict about the diet - and also for social situations with friends and family. I guess another option I have is to get tested with Prometheus labs - I hear that they are much more accurate than Quest from posts on this forum. And then go gluten free afterwards regardless.

Good plan.

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

Celiac.com Sponsor (A8-M):


Archived

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

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


  • Member Statistics

    • Total Members
      131,898
    • Most Online (within 30 mins)
      7,748
    MLucia
    Newest Member
    MLucia
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • 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.