Too Much Testing?

[jramfischer]

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!

[Rachel--24]

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]

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]

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]

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]

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 , 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]

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

[GlutenWrangler]

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

-Brian

[tarnalberry]

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]

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]

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]

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]

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]

..... 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]

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]

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 . 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 ~