Jump to content
  • Sign Up
Celiac.com Sponsor:


Celiac.com Sponsor:

Rate this topic

Recommended Posts

Sorry if this has been asked.  Please feel free to point me to another thread if there is a helpful one.  Here's the deal:

 

Dx'd w/ RA 25 yrs ago.  Did not pursue aggressive treatment because I was told I was too young to worry about it.  :)  So, I didn't, and lucky for me, it has not caused damaged, except some in my knees (that I know of).  Have tried mtx in the past couple of years, pills and injections, but when the pills stopped working, he just took me off, and then when the next doc saw that injections wouldn't work at all, he un-dx'd me.  

 

So this leaves me wondering what is attacking my body if it isn't RA?  I have gone gluten-free when I was in college, after reading about celiac disease, but back then, there was no internet, and certainly no labeling and such, so who knows if I nailed it or not?  So, I'm revisiting this to see if I may have just been misdx'd all these years after all.  That would be so awesome I can't even say.

 

My question is in the title.  I've been gluten-free since Wednesday, but I'm wondering if I should go ahead and get back on gluten and get tested, since it seems like once you go gluten-free and heal, it's harder to get back on gluten and get tested.  I also wonder if it's better to get tested first in case I am somehow getting glutened by accident, since I'm new at this.  I guess if all of my symptoms go away, then I'll know, and probably not care at all about a test,  but if they don't, that doesn't mean I don't have celiac disease, either.

 

I guess I should just call my gp tomorrow and leave a msg and ask him, but I'm curious if others have had a similar experience and what happened.  I won't lie, though: part of me wants to have one last pizza hut or chinese buffet, and that may be why I'm wiggling about the diet lol.

 

Thanks!

Share this post


Link to post
Share on other sites

Thank you so much!  That makes sense.  Do you think this would apply to someone who's been gluten-free for less than a week?  " In fact, should you wish to be tested it’s best to resume a normal diet for at least 12 weeks to ensure accurate blood test results."

Share this post


Link to post
Share on other sites

Thank you so much! That makes sense. Do you think this would apply to someone who's been gluten-free for less than a week? " In fact, should you wish to be tested it’s best to resume a normal diet for at least 12 weeks to ensure accurate blood test results."

Get a pizza! If you have a positive test, most doctors will want to do an endoscopy and, maybe a colonoscopy with it, to check the extent of the damage and for other issues. You need to keep eating gluten until the endoscopy is done.

http://www.cureceliacdisease.org/archives/faq/i-stopped-eating-gluten-right-before-my-screening-will-that-impact-my-results

"I stopped eating gluten right before my blood screening. Will that impact my results?

To get the most accurate screening results, we recommend 12 weeks of daily gluten intake prior to blood testing. If you’ve followed a gluten-containing diet, as recommended, but went gluten-free a few days prior to your screening, it’s likely that you’ll still see accurate results from your tests."

Share this post


Link to post
Share on other sites

I agree with kareng - get tested first.  Being gluten free for a few days won't make much of a difference - but go back to eating gluten every day until all of the testing is done.  Push for an endoscopy.  They test for other things that may be going on in addition to Celiac, so if you're not having severe symptoms that would prevent you from sticking with the gluten a little longer it is good to get tested.

 

Have a few slices of thin-crust, pepperoni pizza from Pizza Hut for me.  :rolleyes:

Share this post


Link to post
Share on other sites

I have been off all grains for nearly a year with very few slips. My doctor wants to run a celiac test since I am having arthritis symptoms in all my joints when I eat certain foods,etc. Will it show I have problems with celiac since I've been off of grains for a year?I don't want to go back on grains just to take a test.

Share this post


Link to post
Share on other sites

Welcome!

 

If you have been off all grain it is highly unlikely celiac antibody tests will be accurate without a twelve week gluten challenge.  The suggested challenge for biopsy is two weeks...so if celiac is suspected that may be a better avenue.

 

Have you had any adverse reactions since you removed grains?  Do you ever use soy sauce or other gluten containing items?

 

Hang in there :)

Share this post


Link to post
Share on other sites

I got tested today, 2 tests, 1 was the dna test.  He said he had just given a presentation somewhere about celiac disease recently, so that's cool.  He's supposed to call with the results next week.  He's super frustrated with my health (I asked him how he thinks I feel lol), and just basically said that he thinks the rheumy is wrong, and is setting me up with another, but he's also hoping that I have celiac disease and that a lot of the symptoms I've been chasing around will all or mostly fall under that umbrella.  So am I, brother, so am I.  :)

Share this post


Link to post
Share on other sites

I hope for you they come back positive.  Removing gluten or going gluten light can exacerbate an already frustrating diagnostic process.

 

Good luck....and I strongly agree with your doctor's view...you are fortunate to have this type of doctor...trust me..unfortunately - it is rare :(

 

Let us know how it goes or if we can help.

Share this post


Link to post
Share on other sites

I told him how long I went gluten-free and when I went back on gluten and he said it's fine.  I am super lucky w/ this doctor.  A couple years ago, I dubbed him my team leader, and he decided he'd rather be called my coach, so that's what I call him.  I think he is happy that I trust him as the keeper of all the stuff, but at the same time, there is just wayy too much going on.

 

Is it hard to get docs to do the test, normally?  Mine is basically like, whatever, I'll do whatever tests that make sense, and this one makes sense, so let's do it.  From the symptoms list I've read for celiac disease, I'm guessing that most people with it understand how hard it can be to try to narrow down/focus on/figure out anything, with so many different things that can go on.

 

Thanks, Lisa!

Share this post


Link to post
Share on other sites

I told him how long I went gluten-free and when I went back on gluten and he said it's fine.

 

It makes me skeptical to hear this... while your doctor may be a great guy, that doesn't mean that he actually understands Celiac or the testing process for it.  (Doesn't mean he doesn't either.) - if you were gluten-free for a significant period of time and were only eating gluten for a short period of time - or "gluten light" - the tests may not be accurate.  If they come back negative, you may want to consider a full gluten-challenge or the 2-weeks challenge with biopsy that someone else mentioned.

Keep in mind too, that with the biopsy they test for other things that can be going on in addition to the Celiac - so you may want to consider having the endoscopy even if your doctor is willing to diagnose you without it.

Share this post


Link to post
Share on other sites

I told him how long I went gluten-free and when I went back on gluten and he said it's fine.  I am super lucky w/ this doctor.  A couple years ago, I dubbed him my team leader, and he decided he'd rather be called my coach, so that's what I call him.  I think he is happy that I trust him as the keeper of all the stuff, but at the same time, there is just wayy too much going on.

 

Is it hard to get docs to do the test, normally?  Mine is basically like, whatever, I'll do whatever tests that make sense, and this one makes sense, so let's do it.  From the symptoms list I've read for celiac disease, I'm guessing that most people with it understand how hard it can be to try to narrow down/focus on/figure out anything, with so many different things that can go on.

 

Thanks, Lisa!

 

He did do gene testing in combo with antibody testing -- do you know if he ran a complete antibody panel?  Get written or electronic copies of all your tests -- it can be very helpful for many reasons -- both now and in the future.

 

Yes, sadly many doctors (even gastroenterologists) dismiss the idea of celiac disease in all be young, short, skinny patients presenting with diarrhea :( 

 

I am glad your doctor is taking this seriously, but unless we are misunderstanding the period you have eaten gluten consistently - your doctor was incorrect about the level of gluten needed to assure the celiac antibody tests are accurate.

 

I still think you are extremely fortunate based on your description of your doctor -- whether he is incorrect here is not nearly as important as the fact that he both listens and is curious to find a reason for symptoms -- the best doctors are.

 

Good luck...let us know how it goes :)

Share this post


Link to post
Share on other sites

I don't know if he ran a complete antibody panel.  He had to look up one of the tests, HLA something, and he was talking to me about....some other letters, but i didn't understand what he was saying, really.   I had been gluten-free for 6 days, from wednesday of week (march 5) before last, until monday (march 10) night.  i had the test done yesterday.  will eating gluten actually influence a dna test?  if i get a negative result, i'll remind him that i did go gluten-free for a few days.  

 

i wonder why docs tend to dismiss the idea, when it's something that can not only affect a patient negatively in so many ways, while also making THEIR jobs harder in cases when there are multiple dxes going on, but it seems like a simple testing procedure.  the practice of medicine confuses me so often, still, and i've had health issues since i was pretty young.  

Share this post


Link to post
Share on other sites

No, gluten has no effect on DNA.  The problem with gene tests is roughly 30% of population has the genes associated with Celiac Disease, while only an estimated 1% of population develops celiac.

 

If he only ran gene tests - HLA tests -- not having consumed gluten is not an issue...but without celiac antibody tests you really don't have any real answers.  For both celiac antibody blood tests and endoscopic biopsy you need to be consuming gluten daily.  Twelve weeks for blood / Two weeks for biopsy.

 

Good luck...just wait for your results and go from there.

Share this post


Link to post
Share on other sites

Welcome!

 

If you have been off all grain it is highly unlikely celiac antibody tests will be accurate without a twelve week gluten challenge.  The suggested challenge for biopsy is two weeks...so if celiac is suspected that may be a better avenue.

 

Have you had any adverse reactions since you removed grains?  Do you ever use soy sauce or other gluten containing items?

 

Hang in there :)

Hi Lisa,

Thank you for the welcome. I'm still having joint pain. It's worst when I eat any kind of dairy. I also had a flareup when I was using almond flour to bake. I wish I could find a Dr. who could help me figure out which foods I'm eating that are causing the flare ups. Maybe there is no way to completely get rid of OA. Maybe I'm just dreaming. :-) This is all new to me. I've never had to deal with this kind of pain before and I keep hoping for a way to get rid of it.

 

Georgene

Share this post


Link to post
Share on other sites

Hi Lisa,

Thank you for the welcome. I'm still having joint pain. It's worst when I eat any kind of dairy. I also had a flareup when I was using almond flour to bake. I wish I could find a Dr. who could help me figure out which foods I'm eating that are causing the flare ups. Maybe there is no way to completely get rid of OA. Maybe I'm just dreaming. :-) This is all new to me. I've never had to deal with this kind of pain before and I keep hoping for a way to get rid of it.

 

Georgene

 

It is tough when healthful foods cause us problems.

 

Since you have removed grains..I'm assuming celiac antibody tests will not be accurate.  The reason I asked if you were eating any gluten...for those of us with Celiac the reaction to small amounts of gluten can become worse after we have removed gluten.  If there has been consistent gluten ingestion...get a full celiac antibody panel before tightening up the diet. 

 

Nightshades (tomato, potato, peppers and eggplant) can increase pain in those with arthritis symptoms.  Perhaps give removing these a trial.  Sweet potato and yams are fine as is black pepper...all other peppers including those in spices should be avoided during the trial.

 

If you have more questions...start a new topic in the other food intolerance section....there are quite a few members here that can help.

 

Good luck to you :)

Share this post


Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.


×
×
  • Create New...