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

To Biopsy,or Not To Biopsy

mbledtke

Recommended Posts

mbledtke Newbie
mbledtke
Posted

Hello!  Need some help/advice from those of you who have been through this....

 

Since January 2014, I have suffered with moderate abdominal pain and diarrhea.  After "waiting it out" for a few months, I finally went to the doctor.  After several tests, he did a Celiac blood panel, which was positive.  

 

Looking back, it looks like a Celiac diagnosis fits me pretty well.  From the research I've done, it looks like a lot of my "oddities" can be explained by Celiac Disease: late onset of puberty, infertility (found to be due to antibodies and uterine lining abnormalities), some anxiety/depression.  As I had travel plans (a cruise) coming up, he told me to go ahead and quit the gluten, so I could at least travel and enjoy my vacation.

 

Within about 3 days of going gluten free, I feel DRAMATICALLY better.  Abdominal pain is done.  Diarrhea is gone.  But most significantly, I feel mentally MUCH clearer, and my anxiety is totally gone.  I feel so good, that going gluten free has been pretty easy - no donut, beer, bread, is going to be worth feeling so crummy.

 

I went to the GI doc today, and he said that though it sounds "very likely" that I have Celiac Disease, the standard of care is a biopsy.  I have no problem at all with having it done.  My only problem is financial.  I am self employed, and therefore have VERY expensive but VERY pathetic health insurance ($8000 deductible).  I have no idea what a biopsy might cost, but I have read online around $2-3k.  Since it will ALL be coming out of pocket, I just can't justify spending that kind of money for something that I feel I already have the answer to.   It't not that we can't afford it, but If I feel that much better, and my symptoms have vanished by going gluten free, what more will this expensive test do for me?

 

If this gives any more information, here were my blood panel results (not sure if I wrote down all the test names accurately)

 

Gliadin Antibodies IGA   58

IGG  23

TTG IGA  55

TTG IGG  8 (normal, I think)

 

Thank you for your advice!!

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

Celiac.com Sponsor (A8-M):


GottaSki Mentor
GottaSki
Posted

Welcome!

 

I am a proponent of the endoscopy/biopsy - except when the current state of our medical/health insurance system puts the test out of reach financially.

 

A biopsy is a good idea, but not essential.  Your tests do indeed indicate Celiac Disease.  Do you have the reference ranges provided for each test -- these are helpful to us as the reference ranges vary from lab to lab.

 

Unfortunately I too have experience in the changing costs of health care - in particular the endoscopy with biopsy.  My first was covered completely...our insurance has continually covered less and less each year.  I can no long afford the repeated medical tests needed because of the damage caused by undiagnosed celiac.

 

The MOST important part of your post is that your symptoms are new (relatively speaking).  With positive celiac antibodies and positive response to diet -- I see no reason to spend the money to confirm the damage occurring in your small intestine.

 

Let us know if you have more questions and try to update with ranges if possible.

 

Good luck to you :)

mbledtke Newbie
mbledtke
Posted
  • Author

Welcome!

 

I am a proponent of the endoscopy/biopsy - except when the current state of our medical/health insurance system puts the test out of reach financially.

 

A biopsy is a good idea, but not essential.  Your tests do indeed indicate Celiac Disease.  Do you have the reference ranges provided for each test -- these are helpful to us as the reference ranges vary from lab to lab.

 

Unfortunately I too have experience in the changing costs of health care - in particular the endoscopy with biopsy.  My first was covered completely...our insurance has continually covered less and less each year.  I can no long afford the repeated medical tests needed because of the damage caused by undiagnosed celiac.

 

The MOST important part of your post is that your symptoms are new (relatively speaking).  With positive celiac antibodies and positive response to diet -- I see no reason to spend the money to confirm the damage occurring in your small intestine.

 

Let us know if you have more questions and try to update with ranges if possible.

 

Good luck to you :)

Hi Lisa, 

 

Thank you for your quick reply!!

 

Here are my official results:

 

Open Original Shared Link 58 <20 - <20 UNITS H Open Original Shared Link         Open Original Shared Link 23 <20 - <20 UNITS H Open Original Shared Link 55 <20 - <20 UNITS H Open Original Shared Link 8 <20 - <20 UNITS

I really do appreciate your help!!  I, too, would sort of like to have the biopsy done, but again, my big thing is, is it worth a few thousand bucks, when I feel I already have my answer?  Hmmm....

 

Thanks!

moni

GottaSki Mentor
GottaSki
Posted

You have celiac.  The biopsy is still a very good idea...only you can decide if the cost is worth the information that it may provide -- tough call IMO.

 

We are here for you...either way.

 

Let us know how we can help...and if you haven't seen it yet...check out this thread - you will be glad you did:

 

https://www.celiac.com/forums/topic/91878-newbie-info-101/

cyclinglady Grand Master
cyclinglady
Posted

I was officially diagnosed last year. My husband went gluten free 13 years ago at the advice of my allergist and his GP. The bad news is that he does not have a formal diagnosis, but the better news is that he is well! You have your blood test results. I would go with that. Save your cash to purchase gluten free items for your kitchen.

Welcome!

NoGlutenCooties Contributor
NoGlutenCooties
Posted

Welcome!

 

IMO, there would be two potential benefits to having the biopsy done.  1) you could potentially get an "official" diagnosis, and 2) they would most likely run a couple of other tests on the biopsied tissue to rule out other possible issues.

 

However... you need to be eating gluten for the biopsy to be valid.  Also, they could do the biopsy and the biopsy could come back negative even though you have Celiac.  Which would mean you still wouldn't have your "official" diagnosis from your doctor... but rest assured that based on your blood tests you absolutely have Celiac.

Also, if you continue with the gluten free diet and your symtoms all go away then the chances that there is something else going on is fairly minimal.  As mentioned above, your symptoms are pretty new.  I'd be more concerned if you had been having symptoms for several years.  (Disclaimer here... I'm not a doctor.  This is just my .02 cents based on my own diagnosis and everything I've read about this disease.)

mbledtke Newbie
mbledtke
Posted
  • Author

Woah, just talked to the billing folks at the hospital.  They said that the doctor's fees alone were close to $3000, and that they expected hospital/anesthesiology fees to be at least that much if not more.  SO.....at the price of $6000+ out of pocket, I won't be having the biopsy done.

 

I have done some research and have read that some physicians use the antibody blood work along with genetic marker bloodwork, to make a definitive diagnosis.  I have read that this combination is as accurate as the biopsy.  Anyone have an experience with this?  Any opinions?

 

Thanks again for your help!!

 

moni

 

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

Celiac.com Sponsor (A8-M):


GottaSki Mentor
GottaSki
Posted

Yep...my last one was 8K before insurance contracted price lowered it a bit.

 

Plenty of people are diagnosed without endoscopic biopsy.

 

The criteria is to have three or four out of five:

 

Antibodies

Genetic Markers

Biopsy

Resolution of symptoms with complete removal of gluten

I'm forgetting one...will add later if I have time to look it up.

 

Some doctors will diagnose based on familial history and resolution of symptoms -- one of my sons and a grand was diagnosed this way.  I hit all the markers, my daughter hit many and I have one other son that is hanging with the NCGS (Non-Celiac Gluten Sensitivity) tag for now.

cmc811 Apprentice
cmc811
Posted

WOW, that's expensive. Can you have it done at an ambulatory surgery center instead of a hospital? My fees were $1825.75 which included everything - facility fee, physician fee and pathology fee.

Archived

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

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

  • Member Statistics

    • Total Members
      133,334
    • Most Online (within 30 mins)
      7,748
    johnfreirefr
    Newest Member
    johnfreirefr
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Scott Adams · Posted

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By trents · Posted

      Contact them.
×
×
  • 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.