Test results and question about gluten challenge

[chocolatesunrise]

hi,

I had a celiac blood panel done last month and it showed positive in just one of the results.  I just got back the results from my genetic screen and I am positive for one of the genes for celiac.  I have been to see 3 different doctors now and all 3 have told me different things.  One said I definitely had celiac and that I should just go off gluten.  Another said I may have it but that since I only had 1 positive test that I didn't need to be biopsied and the last one told me that I almost certainly do not have celiac but that we should do a biopsy to rule it out.  I'm very confused.  I had to go out of town with my daughter last week so the most recent doctor told me it was okay to go off gluten for my trip in the hopes I would feel better.  Well, I did feel much better!  But now I have to eat gluten again for my biopsies.  I'm wondering if there are any tips for going back on gluten.  Like does the time of day you eat it make it any less awful?  Are some gluteny things less problematic than others?  Thank you for any advice!

[kareng]

15 minutes ago, chocolatesunrise said:

hi,

I had a celiac blood panel done last month and it showed positive in just one of the results.  I just got back the results from my genetic screen and I am positive for one of the genes for celiac.  I have been to see 3 different doctors now and all 3 have told me different things.  One said I definitely had celiac and that I should just go off gluten.  Another said I may have it but that since I only had 1 positive test that I didn't need to be biopsied and the last one told me that I almost certainly do not have celiac but that we should do a biopsy to rule it out.  I'm very confused.  I had to go out of town with my daughter last week so the most recent doctor told me it was okay to go off gluten for my trip in the hopes I would feel better.  Well, I did feel much better!  But now I have to eat gluten again for my biopsies.  I'm wondering if there are any tips for going back on gluten.  Like does the time of day you eat it make it any less awful?  Are some gluteny things less problematic than others?  Thank you for any advice!

So it’s going to be kinda dependent on your body and what your symptoms are.  Everyone reacts differently and has a different time frame for a reaction. 

A lot of people seem to like to eat the gluten at dinner.  Then they can be woken up at 3 am and get the stomach aches, gas, poop storm out of the way for the day.  

Let me get some recommendations and be right back

From the Univ of Chicago Celiac Center -

 

“A gluten challenge is the period of time when gluten is added back into a person’s diet to assist in the diagnosis of celiac disease. Antibodies take time to build into the blood stream before they can be detected through blood analysis. For a gluten challenge we recommend eating 1/2 slice of bread or a cracker each day for the duration of the challenge.

• Prior to blood testing we recommend 12 weeks of eating gluten.
• Prior to an endoscopic biopsy we recommend 2 weeks of eating gluten.”

https://www.cureceliacdisease.org/faq/what-is-a-gluten-challenge/

 

 

 

[kareng]

And an another question / thought - what test was positive and what was the number? Slightly positive tests can be caused by other things.  

[chocolatesunrise]

23 minutes ago, kareng said:

And an another question / thought - what test was positive and what was the number? Slightly positive tests can be caused by other things.  

The deaminated gliadin IgG result was the positive with a result of 52.  It was the HLA-DQ2 that was positive on the genetic screen.  I've had a bunch of other lab tests done and nothing else is really abnormal except my vitamin levels are low?  I have dealt with iron deficiency anemia on and off for a few years, but my most recent labs showed that is okay right now.  

[chocolatesunrise]

32 minutes ago, kareng said:

So it’s going to be kinda dependent on your body and what your symptoms are.  Everyone reacts differently and has a different time frame for a reaction. 

A lot of people seem to like to eat the gluten at dinner.  Then they can be woken up at 3 am and get the stomach aches, gas, poop storm out of the way for the day.  

Let me get some recommendations and be right back

From the Univ of Chicago Celiac Center -

 

“A gluten challenge is the period of time when gluten is added back into a person’s diet to assist in the diagnosis of celiac disease. Antibodies take time to build into the blood stream before they can be detected through blood analysis. For a gluten challenge we recommend eating 1/2 slice of bread or a cracker each day for the duration of the challenge.

• Prior to blood testing we recommend 12 weeks of eating gluten.
• Prior to an endoscopic biopsy we recommend 2 weeks of eating gluten.”

https://www.cureceliacdisease.org/faq/what-is-a-gluten-challenge/

 

 

 

Thank you for the help!  My symptoms have been bloating, cramping, constipation and sometimes diarrhea, and abdominal pain.  The pain is what has gotten significantly more difficult to deal with lately and is what drove me to get the doctor to take me seriously.  I've had these symptoms my whole life and have always been told it's just because I'm anxious, or nervous.  I've also been told I have IBS?  I was a freakishly small kid and was so skinny I didn't even register with my height or weight on the growth chart.  I did finally grow taller but I've still always been thin and unable to eat much because I get full after just a few bites.  Just thought it was all normal for me!

[kareng]

3 minutes ago, chocolatesunrise said:

The deaminated gliadin IgG result was the positive with a result of 52.  It was the HLA-DQ2 that was positive on the genetic screen.  I've had a bunch of other lab tests done and nothing else is really abnormal except my vitamin levels are low?  I have dealt with iron deficiency anemia on and off for a few years, but my most recent labs showed that is okay right now.  

That’s a pretty high number.  I would definitely get the endoscopy .  Confirm that he will take at least 6 biopsies.  Damage can be spotty and not visible to the naked eye.  So we want lots of chances to hit it.  

[chocolatesunrise]

3 minutes ago, kareng said:

That’s a pretty high number.  I would definitely get the endoscopy .  Confirm that he will take at least 6 biopsies.  Damage can be spotty and not visible to the naked eye.  So we want lots of chances to hit it.  

Thank you!  That’s good to know. I will ask about that.

[chocolatesunrise]

Ack!  I’m technologically challenged. Somehow I ended up with two accounts. Lol. Anyways, I was trying to say thank you for the advice. It’s very helpful!  

[chocolatesunrise]

Yes!  But it wouldn’t let me sign in on my desktop. So I signed in with Facebook but that created another account. ?

[GFinDC]

We try to discourage people from using the real names on the forum.  But Facebook sign-ins may require that I suppose.  So if the accounts are combined I suggest chocolatesunrise be the account name.

[cyclinglady]

Nothing like being anonymous (as you can get) when you need to talk about GI issues!  ?. That is why I use this site and not Facebook.  Do I really need to let the world know my personal business?  All bets are off if the FBI want to find my location though....I am not that tech savvy.  

[chocolatesunrise]

1 hour ago, GFinDC said:

We try to discourage people from using the real names on the forum.  But Facebook sign-ins may require that I suppose.  So if the accounts are combined I suggest chocolatesunrise be the account name.

Chocolatesunrise works for me!!  Lol

56 minutes ago, cyclinglady said:

Nothing like being anonymous (as you can get) when you need to talk about GI issues!  ?. That is why I use this site and not Facebook.  Do I really need to let the world know my personal business?  All bets are off if the FBI want to find my location though....I am not that tech savvy.  

Hahaha!!  I totally get that!!!  I don’t even understand how I signed in with Facebook. Does it show my name now somewhere?  This is why I should probably stay off the internet. ? My daughters love to make fun of my inability to navigate social media or really any tech based stuff. Guess I’m just too old. ?

[GFinDC]

It looks to me like the admin combined your 2 accounts under chocolatesunrise.  So you are good to go and your real name is not visible now.  Thanks Scott! (admin).

[chocolatesunrise]

42 minutes ago, GFinDC said:

It looks to me like the admin combined your 2 accounts under chocolatesunrise.  So you are good to go and your real name is not visible now.  Thanks Scott! (admin).

Thank you!!?

[chocolatesunrise]

So just as an update...gluten challenge is not fun. ?. I’m on day 3 of eating gluten and I do not feel fantastic. Feels like I’ve been punched in the gut. The first two days weren’t that bad, but last night I started feeling pretty bloated and I’ve been gross all day today. I have 15 days until my endoscopy and I’m not looking forward to continuing this!!  Ok, just had to whine a little. 

[squirmingitch]

Oh you poor thing. It's okay to come whine a little or even a lot. Stomp your feet, throw things, stick out your tongue & make raspberry noises. We're here. We get it. It sucks!!!!! Hang in there. 

[chocolatesunrise]

?? Thank you!!  I really do want to do all those things.  I appreciate the support. ?

[chocolatesunrise]

Here comes more whining...? last night was awful. I was in so much pain. I don’t think i can do this for two more weeks!  Question....I was only off gluten for 2 weeks. Do you think if I ask to get my biopsy done sooner i will risk a false negative if I haven’t returned to a gluten diet for the full 2 weeks immediately prior to biopsy?  I’m wondering if since I took such a short break off gluten maybe I can weasel my way out of these two weeks of misery before the biopsy. ?

[squirmingitch]

You risk a false negative. The recommendation by Chicago Celiac Center is 2 weeks of gluten eating every day. And there haven't been a handful of people who did not ask what you're asking. And now you know why we & celiac orgs. say do not go gluten free until all testing has been completed. Almost 100% of the time, there is a much stronger, more painful reaction to going back on gluten so it's best to just stay on gluten in the first place.

Some doctors even tell their patients they can go gluten free until 2 weeks prior to the endoscopy but that is a BAD idea. Those docs do not know what they are talking about.

I am so sorry. I know this is a trial & a half & that's an understatement. HUGS

[chocolatesunrise]

1 hour ago, squirmingitch said:

You risk a false negative. The recommendation by Chicago Celiac Center is 2 weeks of gluten eating every day. And there haven't been a handful of people who did not ask what you're asking. And now you know why we & celiac orgs. say do not go gluten free until all testing has been completed. Almost 100% of the time, there is a much stronger, more painful reaction to going back on gluten so it's best to just stay on gluten in the first place.

Some doctors even tell their patients they can go gluten free until 2 weeks prior to the endoscopy but that is a BAD idea. Those docs do not know what they are talking about.

I am so sorry. I know this is a trial & a half & that's an understatement. HUGS

Thank you so much for the advice. I wish I had found this group when I first got that positive blood test!!  My doctor told me it didn’t matter if I stopped eating gluten because the damage takes months to heal. It’s frustrating to get bad information. ? Even when I called the office today to ask this same question about having to eat gluten they told me it didn’t really matter since I likely don’t have celiac anyways. Ugh. I’m just gonna stick it out and hope that each day doesn’t just get progressively worse. Thanks for understanding and listening to me whine. ??

[squirmingitch]

Awww, I'm so sorry you're having to go through this!!! The only thing I can say at this point is you don't have to eat a ton of gluten. Read this:

http://www.cureceliacdisease.org/faq/what-is-a-gluten-challenge/

So 1/2 slice of bread per day or a cracker or two.

[kareng]

Sorry . It sucks!  

 

Those are my words of wisdom for today.  ?

[chocolatesunrise]

On 8/27/2019 at 7:16 PM, kareng said:

Sorry . It sucks!  

 

Those are my words of wisdom for today.  ?

?. Truer words have never been spoken!  

[squirmingitch]

That's both  and 

[chocolatesunrise]

I made it to the last day of gluten!  Yay!!!!!!  My endo is tomorrow morning and I’m so nervous. But I’m happy to be done eating gluten tonight at 10 pm. ?? I really hope I finally get some answers!