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

Too Much Testing?

jramfischer

Recommended Posts

jramfischer Rookie
jramfischer
Posted

I'm new to all of this, but would welcome some advice! About a year ago, it was discovered that I have osteoporosis (at age 43), from that a Vitamin D deficiency was found. Then the endocronologist did a Celiac blood panel and found that my tTG level was above 50 (he said around 6 is "normal") which suggested celiac disease, so he sent me to a gastroenterologist. The gastro did a biopsy (results negative), Promethius Genetic Test (one positive gene, one negative) and just recently a capsule endoscopy. Am I just being submitted to too many procedures to find a diagnosis, or is this normal? Thanks in advance for your feedback!

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

Celiac.com Sponsor (A8-M):


Rachel--24 Collaborator
Rachel--24
Posted
I'm new to all of this, but would welcome some advice! About a year ago, it was discovered that I have osteoporosis (at age 43), from that a Vitamin D deficiency was found. Then the endocronologist did a Celiac blood panel and found that my tTG level was above 50 (he said around 6 is "normal") which suggested celiac disease, so he sent me to a gastroenterologist. The gastro did a biopsy (results negative), Promethius Genetic Test (one positive gene, one negative) and just recently a capsule endoscopy. Am I just being submitted to too many procedures to find a diagnosis, or is this normal? Thanks in advance for your feedback!

Hi....welcome to the board. :)

My opinion is that no further testing was needed once you came back with a positive tTG. The tTG is specific for Celiac. You've been gene tested so you now have even more proof of Celiac....but the tTG was more than enough.

Some Dr.'s want to see a postive biopsy to make the diagnosis but a negative biopsy does NOT rule out Celiac. The biopsy is a "hit or miss".....you can have damage in areas other than where the samples were taken. The biopsy is unreliable and only gives a clear answer when it is positive.

You should be gluten-free based on the results of your bloodwork.

rez Apprentice
rez
Posted

With a tTG over 50, I think the gastro didn't take enough samples and this is a classic example where they missed the patchy damage. I would go on the gluten-free diet and then have them recheck your tTG after 3 months, then 6 months to see if it came down.

happygirl Collaborator
happygirl
Posted

Looking at the overall picture:

+ gene, + tTG (highly specific for celiac disease), osteoporosis (related to Celiac because of malabsorption), vitamin deficiency (related to Celiac because of malabsorption.

I think you already have a diagnosis. Just because the doctor has not "given" you one does not mean you don't have Celiac. Biopsies are not always reliable because they can miss damage...Celiac is a patchy disease. Did your GI take multiple biopsies in multiple sites or did he only take one?

Regardless of the answer, I would be more than inclined to say that you have Celiac.

Welcome to the board! We hope we can help and provide answers and support! :)

Laura

jramfischer Rookie
jramfischer
Posted
  • Author

Wow! Thanks so much for confirmation of what I'd already thought. In answer to the question of multiple biopsy sites...I think he only did one, but I'm not certain. He ordered the capsule biopsy to check for patchiness (if that's a real word!). Anyway, I decided this morning, before I posted that I'd go gluten-free even though I don't have an "official" diagnosis. To be honest, I'm a bit afraid and it seem a might overwhelming, but I'm guessing this forum will be a great support system from what I've seen already! Thanks again.

Creative-Soul Newbie
Creative-Soul
Posted
To be honest, I'm a bit afraid and it seem a might overwhelming, but I'm guessing this forum will be a great support system from what I've seen already! Thanks again.

Welcome to the forum! You don't have to guess :lol: , you will find a lot of support and frindly advice here. We've all felt overwhelmed in the beginning as it feels like severe information overload, but it will get easier as you get the hang of things. Feel free to pore through all the old posts and ask any questions that you may have; there's always someone who will know the answer...or at least be able to point you towards it!

rez Apprentice
rez
Posted

Again, have them repeat the blood test in 6 months. Then, the DOCTOR should even give you the diagnosis.

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

Celiac.com Sponsor (A8-M):


GlutenWrangler Contributor
GlutenWrangler
Posted

I agree, you should have already been diagnosed. Time to start up on the diet! Good luck.

-Brian

tarnalberry Community Regular
tarnalberry
Posted
Wow! Thanks so much for confirmation of what I'd already thought. In answer to the question of multiple biopsy sites...I think he only did one, but I'm not certain. He ordered the capsule biopsy to check for patchiness (if that's a real word!). Anyway, I decided this morning, before I posted that I'd go gluten-free even though I don't have an "official" diagnosis. To be honest, I'm a bit afraid and it seem a might overwhelming, but I'm guessing this forum will be a great support system from what I've seen already! Thanks again.

That route of testing sounds totally standard (less than many doctors would do, actually). And I agree, given the picture that's already been taken, it's *fabulous news* that you're going gluten free. Welcome to the board!

Guest lorlyn
Guest lorlyn
Posted
That route of testing sounds totally standard (less than many doctors would do, actually). And I agree, given the picture that's already been taken, it's *fabulous news* that you're going gluten free. Welcome to the board!

Hey I am also new at this gluten free diet. Was wondering by being offically diagnoised by your doctor what does it do to future life insurance prices and pre exesting conditions for getting new health insurance in the future?

tarnalberry Community Regular
tarnalberry
Posted
Hey I am also new at this gluten free diet. Was wondering by being offically diagnoised by your doctor what does it do to future life insurance prices and pre exesting conditions for getting new health insurance in the future?

I can't speak from personal experience, as my coverage for both is through my workplace. We have had members here who have had issues with private health insurance companies denying them due to a celiac disease diagnosis (or charging much higher rates), though it really doesn't make any sense, of course. It may well stand to reason that life insurance would be the same way, though I don't recall reading anything specific on that one.

Guest lorlyn
Guest lorlyn
Posted
I can't speak from personal experience, as my coverage for both is through my workplace. We have had members here who have had issues with private health insurance companies denying them due to a celiac disease diagnosis (or charging much higher rates), though it really doesn't make any sense, of course. It may well stand to reason that life insurance would be the same way, though I don't recall reading anything specific on that one.
Just curious but my daughter dotor told us that celiac disease is one of the few disease's that goes away after going on a gluten free diet. So my question is does she have to disclose it on future health and life insurance forms in the future. Thanks
tarnalberry Community Regular
tarnalberry
Posted
Just curious but my daughter dotor told us that celiac disease is one of the few disease's that goes away after going on a gluten free diet. So my question is does she have to disclose it on future health and life insurance forms in the future. Thanks

Celiac disease - the condition of having an immune system that reacts to wheat - does not go away. The damage and the symptoms and the manifestation of the disease go away as long as you treat it (stay on the gluten free diet). IANAL*, but I think you still need to declare it. Other conditions you have that are completely controlled (such as diabetes that is completely controlled by diet and exercise) but haven't been cured or gone away still have to be disclosed.

* I am not a lawyer

larry mac Enthusiast
larry mac
Posted
..... The gastroenterologist did a biopsy ....Promethius Genetic Test .... and just recently a capsule endoscopy....

jrf,

Doesn't sound like too much testing to me. The capsule test was needed because of the negative biopsy, but I don't see anywhere in this thread that you've said what the results of the capsule endoscopy were. Have you received the results yet? If it was me, I wouldn't make any changes to my diet until I consulted my doctor. Once you go gluten-free, you'll throw a huge monkey wrench into any further testing, should any be neccessary at this time. He's the doctor, he's the expert, you're paying him to find out what's wrong with you. I'ts probably reasonable to assume that he's very close to giving you the bad news/ good news official diagnosis, and giving you the green light on the gluten-free diet. But you want to wait for the results of the capsule test you paid so much for.

Do you have a follow-up appointment? You might want to at least give him a call.

best regards, lm

jramfischer Rookie
jramfischer
Posted
  • Author

I just received the results from the capsule endoscopy...all my villi are in tact. The GI says I am a "mystery" and isn't sure what is going on and isn't recommending any more testing (which is fine). There are so many factors that would seem to point to a gluten sensitivity: Vit D and B12 deficiencies, osteoporosis, elevated tTG, gastrointestinal issues....Am I way off base?

num1habsfan Rising Star
num1habsfan
Posted

I honestly myself cant say I know when you do or dont got Celiac, because all these details you guys have talked about tests and levels, etc...its jibberish to me :lol: . All I can say is that you dont need a diagnosis from a scope to start on the diet...if the doctor suggests it, Ido it, I did it (and no biopsies/blood work ever did show anything, but only because i was already on the diet).

~ lisa ~

Archived

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

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


  • Member Statistics

    • Total Members
      132,073
    • Most Online (within 30 mins)
      7,748
    ImVenus
    Newest Member
    ImVenus
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      My only proof

      By AlwaysLearning · Posted

      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
      Gluten related ??

      By AlwaysLearning · Posted

      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
    • Russ H
      KAN-101 Treatment for Coeliac Disease

      By Russ H · Posted

      This treatment looks promising. Its aim is to provoke immune tolerance of gluten, possibly curing the disease. It passed the phase 2 trial with flying colours, and I came across a post on Reddit by one of the study volunteers. Apparently, the results were good enough that the company is applying for fast track approval.  Anokion Announces Positive Symptom Data from its Phase 2 Trial Evaluating KAN-101 for the Treatment of Celiac Disease https://www.reddit.com/r/Celiac/comments/1krx2wh/kan_101_trial_put_on_hold/
    • Scott Adams
      Nicotine Gum For Gluten Symptoms.. Am I Crazy?

      By Scott Adams · Posted

      BTW, we've done other articles on this topic that I wanted to share here (not to condone smoking!):    
×
×
  • 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.