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 Our Content
    eNewsletter
    Donate

Am I Doing The Right Thing?


Cogniton

Recommended Posts

Cogniton Newbie

I had been having all of the typical symptoms since 2006 (diarrhea, abdominal pain, gas, bloating, weight loss, fatigue, muscle aches, anemia, red sores on my underarm, etc.), and it seemed like they were getting worse. In February, my wife suggested that it could be Celiac Disease and had me try a gluten-free diet for a month; by the end of the month, my symptoms had nearly completely subsided. I continued trying to eat gluten free, but it was hard because we were in South Korea and there wasn't reliable/detailed product labeling (as well as the occasional communication barrier).

When I came back to the US in July, I was on an absolutely gluten-free diet. I went to my General Practitioner in August, and, based on my symptoms, she agreed that Celiac was the likeliest cause. I came up negative on the blood test, though I think that was because I was eating a gluten-free diet. She referred me to a gastroenterologist who told me to eat a gluten-filled diet for two weeks and then he would perform an EGD(upper endoscopy) and colonoscopy.

This was scheduled for tomorrow, but today I got a call from the hospital asking me how I was going to pay the hospital's fee, on top of the doctor's fee; the hospital's fee, even with insurance, is over double what the doctor's fee is for both procedures, and it doesn't include the anesthesiology or pathology costs.

My wife is having trouble finding a job and mine fortunately manages to cover our bills and life expenses, and we had even budgeted for the doctor's fee (and were told that the other fees wouldn't be way too much more). Since I hadn't yet received a diagnosis, the procedure wasn't considered "medically necessary" and I could cancel it without having trouble with my insurance (though I may have to pay a small cancellation fee to the doctor). So that's what I did; I canceled it. I think if I continue to eat gluten-free that my symptoms will continue to subside.

I feel really uncertain about this, but it would have been more debt that we could handle for a diagnosis we were confident about.


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



Celiac.com Sponsor (A8-M):



Cypressmyst Explorer

You did the right thing. Your GI and GP doctors did not. The test is completely unnecessary. You have found the cause and solution to your problem and charging you for an invasive procedure with dubious results AND putting you on a gluten diet again, is really malpractice in my opinion.

The call from the hospital about payment tells you all you need to know about their true motivation for doing the procedure.

Unfortunately doctors are no more than over priced drug dealers for the most part. It is up to us to do the research and understand our own health, like your wife has done for you. :)

Congrats on finding what was ailing you and being able to do something so simple to fix it. ;)

jerseyangel Proficient

eat a gluten-filled diet for two weeks and then he would perform an EGD(upper endoscopy) and colonoscopy.

Good thing you canceled--after being gluten-free for as long as you were, 2 weeks back on gluten most likely would not have been enough time to cause damage. The rule of thumb for a gluten challenge is at least 3-4 months eating 3-4 slices of bread per day.

I think your body has told you what you need to know--stay gluten-free and be healthy :)

txplowgirl Enthusiast

Hi Cognition, welcome to the forum.

There are a lot of us on this board who do not have a formal diagnosis due to one reason or another. I didn't have insurance at the time and I didn't want to wait for a couple of weeks even waiting on a blood test that could possibly come back negative anyway. I am to the point now, unless i'm bleeding uncontrollably or i'm in a coma I do not intend on going back to a dr. Most are idiots and just want your money. That's just my opinion.

So, I went gluten free and here it is a year and a half later and I have never regretted it. Keep in mind that if you don't have an endoscopy you do not know if you have any damage to your intestines. So, do you know whether or not you can tolerate dairy? If your villi in your intestines are damaged then you will not be able to handle it well. The advise given around here is to cut the dairy for at least 6 months. Also, don't be surprised if you find after a while you find you might have other food intolerances.

Be carefull of cross contamination. Since you will probably be sharing a gluten household with your wife know you will need your own pans, wooden utensils, new toaster, and new colander.

There is a lot more but just read the past posts here and ask a lot of questions and again welcome to the forum.

Vicky

Cogniton Newbie

Unfortunately, since I was willing to go along with the procedure until today, I have been eating gluten for the past two weeks - and it has been pretty miserable. But now I can return to my pleasant gluten-free existence.

Thanks for the comments and feedback. It has really helped put me at ease about my last-minute cancellation.

txplowgirl Enthusiast

Unfortunately, since I was willing to go along with the procedure until today, I have been eating gluten for the past two weeks - and it has been pretty miserable. But now I can return to my pleasant gluten-free existence.

Thanks for the comments and feedback. It has really helped put me at ease about my last-minute cancellation.

To help with getting gluten out of your system faster try to drink a lot of water to flush it. Hang in there and good luck

Vicky

ravenwoodglass Mentor

Unfortunately, since I was willing to go along with the procedure until today, I have been eating gluten for the past two weeks - and it has been pretty miserable. But now I can return to my pleasant gluten-free existence.

Thanks for the comments and feedback. It has really helped put me at ease about my last-minute cancellation.

You did the right thing. Get back on the diet and heal. Your reaction to reintroducing gluten has given you the answer.


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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,974
    • Most Online (within 30 mins)
      7,748

    Srwells
    Newest Member
    Srwells
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.5k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      It's possible he's in the early stages of celiac disease, and it has been caught before villi damage. The blood test results so far do indicate possible celiac disease, as well as his strong family history of celiac disease. If his symptoms get better on a gluten-free diet this would be another strong indication. Personally I think it's definitely better to proceed on the safe side and go gluten-free, rather than to risk severe villi damage and all that comes with it.
    • Dora77
      For some context: I have type 1 diabetes (T1D) (since 11 years) and celiac disease(since 4 years) For about a year now, I’ve been experiencing permanent floating and undigested stools. I’ve had a pancreas elastase test done. The first result was extremely low at 44, but a second test came back at 236. My doctor said that since one result is normal, it rules out pancreatic insufficiency because, according to them, elastase levels would always stay low if that were the issue. However, could the 236 have been a false result? My doctor also thinks I don’t have pancreatic insufficiency because I’m able to gain weight. I also get hgh injections as my bone age is younger than my real age, this also contributes to weight gain, so I dont know if weight gain can rule out malabsorption. But maybe if I had real malabsorption I wouldnt gain any weight even with hgh? For celiac, I’m on a gluten-free diet, but there might b small cross-contamination from things like pepper labeled as “may contain gluten.” or sausages which dont have gluten ingredient but say may contain. My doctor said that small amounts like this wouldn’t harm me and even mentioned that an occasional small exposure to gluten may not do much damage (which seems questionable since I thought even tiny amounts could be harmful). She also said that when Im older (Im m17) I could try eating small amounts of gluten and do antibody blood tests to see if I can tolerate small amounts or not. For reference, I’m asymptomatic when it comes to celiac, so I have no idea if I’ve been “glutened” or not. My first concerning celiac blood test was semi high IgA, then 3 months later we did a check up and my IgA was high so it was confirmed celiac. Since than I’ve had celiac antibody tests done yearly to see how my diet is going, and they’ve been negative, but I’ve heard those aren’t always reliable. I’ve never had a follow-up endoscopy to confirm healing. I also always kept eating „may contain gluten“ food. (I live in Germany so I dont know if „may contain gluten“ is as risky as in the usa but I suppose both are as risky) These stool issues started around the same time I was doing excessive heavy lifting at the gym. Could stress or lifting have triggered this, or is that less likely since the symptoms persist even after I stopped lifting? Occasionally, I’ll feel very mild stomach discomfort, but it’s rare and not severe. My doctor (also a dietist) said floating, undigested stools could still be “normal,” but that doesn’t seem realistic to me. Could this be impacting my vitamin or protein absorption? I also did a fructose intolerance breath test and had a high baseline of 20 ppm, but it never increased—only decreased over time. I fasted for 12 hours and didn’t eat fructose beforehand, but my stomach didn’t feel completely empty during the test. Could this mean the test was inaccurate? For lactose intolerance, I did the breath test but only fasted 10 hours and had eaten lactose prior because I wasn’t aware of the proper diet restrictions. My results were: 14, 12, 15, 25, 35, 40, 40 ppm—which would be considered positive. But given that I didn’t fast long enough or follow the right diet, could this result be unreliable? Has anyone else dealt with similar symptoms? What ended up being the cause for you? And sorry for the long text!
    • TerryinCO
      The Docs' and NP haven't committed to Celiac determination yet but say go gluten-free diet because...  And I have with improved physical results - feeling better; overall functions better, and more energy.  Still 10 pounds down in weight but I still have BMI of ~23.  It's been just over a month now gluten-free diet.  I'm fortunate I get along with diary/milk well and most other foods. I wanted ask about this site's sponsor, gliadin X.  If this is legit, seems like a good product to keep on hand. Though it says it's only a safety for incidental gluten contact - not a substitue for gluten-free diet. What's your input on this? This may be sensitive subject since they're a sponsor. I've used resources here and other sites for information, gluten-free food/product lists. So thank you for all that support. That's it for now - Stay warm...  -2F this morning in Colorado!
    • cristiana
      I did suffer with gastric symptoms before diagnosis, but got all sorts of weird and wacky symptoms after going gluten free.   Things got much better once my antibodies fell to normal levels, but it took years (please don't panic, many people's go to normal levels relatively quickly when following a gluten-free diet). Causes of the symptoms you mention that I also experienced were iron supplements, a temporary dairy intolerance (this is common in coeliacs and should pass when your gut heals properly), and eating oats, as mentioned above.  Other symptoms I got were musculoskeletal pain after diagnosis, but again, once my coeliac blood tests were normal, I had no more pain. I did notice patterns emerging in foods that I reacted to and learned to steer clear of them, then gradually reintroduced them when my gut healed, such as soya, pure oats and dairy products.    You might like to keep a food diary. Cristiana
    • Jy11
      Well the conflicting results continue as the biopsy has come back negative. 😵‍💫 Waiting to discuss further but I really don’t know what to think now? Eight biopsy’s were taken from duodenum which surely should be sufficient if it was coeliac? 
×
×
  • Create New...