Gluten free diet, positive celiac screen...what should I eat now?

[purdue1014]

Hi Gang,

I am new here.  I am a 24YOM with no pertinent medical history who just had a positive celiac screen on a gluten free diet.  I can not get in to see the GI specialist for 6 weeks.  What should I eat between now and then?

Back story:

Last October I did my first "Whole 30."  The Whole 30 is an elimination diet where you do not eat added sugar, alcohol, grains, legumes, or dairy for 30 days then you reintroduce each group one at a time to see how it may effect you.  

I got to day 23 then my dad died.  I had all of the above (and more) in the ensuing days and did not get to properly reintroduce anything.

So, I wanted to do another proper Whole 30 and am now on day 24 of 30.  Last day is next Monday.  Ever since my first Whole 30, I have not pooped right at all.  I've consistently had lots of cramping, diarrhea, constipation, etc.  I've been suspecting either lactose or a gluten sensitivity, so I figured a new Whole 30 would help me figure it out.

Mentioned the above to my new PCP at my yearly physical last week and she did a celiac blood test.  She told me today that it was "positive for serological markers for celiac" and something about GPDs, and referred me to a GI specialist.  

1) My first question to you guys is, what should my diet be from next Tuesday until the end of March?  From some reading, it seems that I should go back to eating gluten...is that true?!? and that I may get pretty sick next week when I reintroduce it...?

2) What can I expect at that first GI specialist appointment--in 6 weeks?  I am very dedicated to diet/health (so, I can hold my own in sticking to whatever diet you say I should) but do I need to be more pushy and get that appointment moved up?

Just to better help me get educated, if you have any sources for your information, I would greatly appreciate it.  Technical journal articles are fine.  For the record, I do have 5 immediate family members with moderate-serious autoimmune illnesses and some do have UC and diverticulosis.

Thanks all!
Purdue

  

[purdue1014]

12 minutes ago, purdue1014 said:

Hi Gang,

I am new here.  I am a 24YOM with no pertinent medical history who just had a positive celiac screen on a gluten free diet.  I can not get in to see the GI specialist for 6 weeks.  What should I eat between now and then?

Back story:

Last October I did my first "Whole 30."  The Whole 30 is an elimination diet where you do not eat added sugar, alcohol, grains, legumes, or dairy for 30 days then you reintroduce each group one at a time to see how it may effect you.  

I got to day 23 then my dad died.  I had all of the above (and more) in the ensuing days and did not get to properly reintroduce anything.

So, I wanted to do another proper Whole 30 and am now on day 24 of 30.  Last day is next Monday.  Ever since my first Whole 30, I have not pooped right at all.  I've consistently had lots of cramping, diarrhea, constipation, etc.  I've been suspecting either lactose or a gluten sensitivity, so I figured a new Whole 30 would help me figure it out.

Mentioned the above to my new PCP at my yearly physical last week and she did a celiac blood test.  She told me today that it was "positive for serological markers for celiac" and something about GPDs, and referred me to a GI specialist.  

1) My first question to you guys is, what should my diet be from next Tuesday until the end of March?  From some reading, it seems that I should go back to eating gluten...is that true?!? and that I may get pretty sick next week when I reintroduce it...?

2) What can I expect at that first GI specialist appointment--in 6 weeks?  I am very dedicated to diet/health (so, I can hold my own in sticking to whatever diet you say I should) but do I need to be more pushy and get that appointment moved up?

Just to better help me get educated, if you have any sources for your information, I would greatly appreciate it.  Technical journal articles are fine.  For the record, I do have 5 immediate family members with moderate-serious autoimmune illnesses and some do have UC and diverticulosis.

Thanks all!
Purdue

  

One other question for you guys.  Is there a "rebound" effect for going off/on gluten?  Would that explain why (seemingly, like a light switch) I started having big pooping problems as soon as I came off my first Whole 30 attempt? I.e., as soon as I started eating a bunch of crap after my dad died?  

[cyclinglady]

Welcome!  In order to get a proper diagnosis, you have to be eating gluten daily prior to an endoscopy. 

Open Original Shared Link

Open Original Shared Link

Take care!  

 

 

[cyclinglady]

Oh, there can be a rebound effect when you go off gluten and then reintroduce it.  We call it a "glutening".  Not a real word per the dictionary, but it is real in the celiac world!  ?

[squirmingitch]

First off, my sympathies on your loss of your dad. 24 is pretty young to lose a parent. 

Cyclinglady told you right in her post above.

WHEN the time comes for you to go gluten free then you will need to be absolutely gluten free. Likely on your Whole 30 diet, you were getting a lot of cross contamination. Read this in preparation for going gluten free:

 

Follow all the links contained in the threads. 

 

[purdue1014]

Thanks Ladies.  For the Gluten Challenge....if I have more than 1 cracker a day, is that OK?  By the time I reintroduce gluten from my Whole 30...I'll have about a month until I see my GI doc.  Just curious what you think.   Thanks!

[squirmingitch]

It's okay if you have more than 1 cracker a day; the challenge is saying you must have at least 1 cracker a day so if you want to have more that's absolutely fine. In fact, if you want to gorge on all your favorite gluten goodies from now until the endoscopy then have at it because it looks like you'll be saying goodbye to it all after the endoscopy. You say it's about a month till you see the GI doc..... it will be longer until an endoscopy because the GI will have to order it & it will have to get scheduled.

[cyclinglady]

After my blood test (DGP IgA positive), I went crazy eating gluten until my endoscopy.  Because of work issues, I waited for seven weeks.  Seven weeks of saying goodbye to my favorite gluteny foods!  I knew what was coming going gluten free since my hubby has been gluten free for over 14 years.  I was eating a loaf of sourdough a day besides cakes and cookies.  Yum!  But the bad news was that by the time my endoscopy rolled around, I was experiencing tummy issues (just had anemia before).  So, my advice is to take time to say goodbye to gluten, but do not be a glutton (like me!)  

[purdue1014]

Alright, thanks ladies!

[notme]

i would be eating pizza and donuts - two of my most missed foods and difficult to find a gluten-free substitute!  lolz, yup:  me, pizza, donuts, the bed, and the bathroom...............

sorry about your dad - welcome to the forum.

[GFinDC]

I think it might be worthwhile to call the GI's office and talk about their plan now.  Find out if they can setup the endoscopy now, rather than wait until your appointment.  Tell them what your positive result was, or make sure they have a copy of the test done and the result.  If they want another celiac antibody test panel, you might be able to get that done ahead of time.

[purdue1014]

1 hour ago, GFinDC said:

I think it might be worthwhile to call the GI's office and talk about their plan now.  Find out if they can setup the endoscopy now, rather than wait until your appointment.  Tell them what your positive result was, or make sure they have a copy of the test done and the result.  If they want another celiac antibody test panel, you might be able to get that done ahead of time.

I think that's a good idea

[purdue1014]

Question for you guys.  What are the advantages to getting a biopsy/formal diagnosis vs. just cutting out gluten right now and not looking back?  Is it really worth all that just to have someone tell me "you can't eat gluten," when I pretty much have figured that out on my own?  Not trying to be flip, here.  I am sure there are good reasons.  

[squirmingitch]

Here are the reasons:

1) You are 24 yrs. old. I'm assuming you might want/have kids sometime in your life. You could pass the celiac gene on to them. They could present with celiac at some time in their life. If YOU are dx'd then it is sooooooooooo much easier to get testing for your kid(s) who should be tested every 2 years unless they present symptoms & then they should be tested right away. Otherwise you can play hell getting them tested.

2) If you have an official dx, then you will be taken much more seriously by not only people but by the medical profession. This means you can get testing for vitamin deficiencies as well as other auto immune diseases associated with celiac disease. Otherwise you can play hell getting those tests.

 

[purdue1014]

Points well taken, thanks.  
 

Can you explain to me how the biopsy works?  I'm getting differences in opinion on whether or not I should go back on gluten after my Whole 30 (theoretically, I'd reintroduce it on 2/21) or not.  If it's a biopsy...aren't they taking micro-villa samples and wouldn't look at the antibody levels?

[squirmingitch]

Oh, I forgot another biggie....

3) If you are officially dx'd then all your first degree relatives should be tested (again back to the every 2 years if not sooner if symptoms present). This means your siblings as well as your parents. I can't tell you how many people we've had on here who don't have an official dx & their 1st degree relatives refuse to get tested because THEY don't take the self diagnosis seriously & think the person is either wrong or "over reacting" thinking they have celiac disease. This can cause no end of grief as some people are certain their mom or dad or a sibling has celiac but the relative is sloughing it off as hysteria. PLUS if they go to get tested then having a 1st degree relative with an official dx will make the doctors take them seriously.

[squirmingitch]

2 minutes ago, purdue1014 said:

Points well taken, thanks.  
 

Can you explain to me how the biopsy works?  I'm getting differences in opinion on whether or not I should go back on gluten after my Whole 30 (theoretically, I'd reintroduce it on 2/21) or not.  If it's a biopsy...aren't they taking micro-villa samples and wouldn't look at the antibody levels?

Okay, first off, we don't know if your PCP did the full celiac panel on you. You said, "She told me today that it was "positive for serological markers for celiac" and something about GPDs, and referred me to a GI specialist.  " I'm thinking she said DGP's not GPD's & IF she said that then you most likely got the full panel but we just don't know that. If you had a copy of your tests then posted it here along with the ref. ranges we could tell you if you them all or not & we have people who are really good at interpreting the tests. 

BTW, this is the full panel:

Anti-Gliadin (AGA) IgA
Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA 

Also can be termed this way:

Endomysial Antibody IgA
Tissue Transglutaminase IgA 
GLIADIN IgG
GLIADIN IgA
Total Serum IgA 
Deamidated Gliadin Peptide (DGP) IgA and IgG

This link explains the biopsy procedure:

Open Original Shared Link

You MUST be eating gluten up until the time of the endoscopic biopsy.

See also:

Open Original Shared Link

[squirmingitch]

Here's another good link:

Open Original Shared Link

[purdue1014]

42 minutes ago, squirmingitch said:

Oh, I forgot another biggie....

3) If you are officially dx'd then all your first degree relatives should be tested (again back to the every 2 years if not sooner if symptoms present). This means your siblings as well as your parents. I can't tell you how many people we've had on here who don't have an official dx & their 1st degree relatives refuse to get tested because THEY don't take the self diagnosis seriously & think the person is either wrong or "over reacting" thinking they have celiac disease. This can cause no end of grief as some people are certain their mom or dad or a sibling has celiac but the relative is sloughing it off as hysteria. PLUS if they go to get tested then having a 1st degree relative with an official dx will make the doctors take them seriously.

Good points...Unfortunately, mom passed when I was younger and I have no siblings...

[purdue1014]

36 minutes ago, squirmingitch said:

Okay, first off, we don't know if your PCP did the full celiac panel on you. You said, "She told me today that it was "positive for serological markers for celiac" and something about GPDs, and referred me to a GI specialist.  " I'm thinking she said DGP's not GPD's & IF she said that then you most likely got the full panel but we just don't know that. If you had a copy of your tests then posted it here along with the ref. ranges we could tell you if you them all or not & we have people who are really good at interpreting the tests. 

BTW, this is the full panel:

Anti-Gliadin (AGA) IgA
Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA 

Also can be termed this way:

Endomysial Antibody IgA
Tissue Transglutaminase IgA 
GLIADIN IgG
GLIADIN IgA
Total Serum IgA 
Deamidated Gliadin Peptide (DGP) IgA and IgG

This link explains the biopsy procedure:

Open Original Shared Link

You MUST be eating gluten up until the time of the endoscopic biopsy.

See also:

Open Original Shared Link

I think you are right.  I'll work on getting a copy of the lab results for whatever test I had done (and will post here) and will call the GI MD office this week to see if I can get past the grouchy receptionist and reach someone who can tell me a timeline of things.  

[purdue1014]

Have any of you guys ever looked into a functional medicine doctor for treating your celiac?

Open Original Shared Link

Normally, I would shrug this off completely....but a cousin of mine has a pretty serious autoimmune illness that (after being homebound for 2 years) worked with this guy and was able to put his issue in complete remission.  Curious as to thoughts/opinions on it?  

[cyclinglady]

Here is a link that explains why you should get tested (completely) for celiac disease:

Open Original Shared Link

As far as the link to the functional doctor....why?  If you get a celiac diagnosis, chances are you will heal on a gluten free diet.  As you have probably seen on this forum, most of us encourage newly diagnosed members to eat a whole-foods, easy-to-digest (a.k.a "cooked to death")  gluten-free diet to speed healing.  Going Paleo might not be the best right now, if you have celiac disease.  Eating lots of nuts, raw fruits and veggies can be tough on a damaged gut.  You can try that diet later!  

Everyone is different due to various degrees of damage, so some may have temporary intolerances  (e.g. lactose).  You just have to experiment.  

Save your money and spend it on good wholesome food.  I heartily support getting away from the SAD (Standard American Diet).   Celiac disease is the one autoimmune disorder that is healed by avoiding a food -- gluten!  

[GFinDC]

Hi Purdue,

You've gotten some good advice already.  That functional doctor may help some people, but you are better off to stick with a traditional GI for now IMHO.  You can do some studying and learning on your own by sticking around this forum and reading threads and articles and asking questions.  There is a lot of combined experience among the members.

I am not sure where you live, but another thing you can try is finding a local support group for celiac disease.  There may be one close to you that can offer information and support.  Sometimes hospitals sponsor groups and there are also national celiac support groups.  Here is an article on support groups in the US:

https://www.celiac.com/articles/227/1/A-List-of-Local-Celiac-Disease-Support-GroupsChapters/Page1.html

The usual diagnostic flow is to have the celiac antibodie blood tests, and then an endoscopy to take 5 or so biopsy samples.  The endoscopy is done by a flexible tube they insert through the mouth.  They discourage singing during the endoscopy.   It's an outpatient procedure.

I was gluten-free for 3 months before I saw my GI so I didn't have the endoscopy.  But lots of people have had it.  Sometimes they report a sore throat from the procedure.

Sometimes there are research trials for celiac treatments and they only want people who have been through the full diagnostic process.  So if you think participating in a medical trial is something you'd want to do that is a consideration.

In Britain I think they had a requirement for diagnosis to get a tax consideration on buying gluten-free food some time ago.  I don't know if that is still true though.

Sometimes people find it hard to stick to the gluten-free diet without a diagnosis.  A diagnosis might help in the willpower department.

If you did go gluten-free now and decided to get tested later they recommend 12 weeks of eating gluten before the endoscopy.  That can be tough to do if you are sick every time you eat gluten.  So it's easier on most people to do the testing up front.

But you are right, there is no absolute requirement that you get fully diagnosed to go gluten-free.  It's a lifetime commitment so that may be easier if you know for sure.  Or maybe not.  Some people have such bad symptoms that resolve on a gluten-free diet that it doesn't matter to them if a test shows celiac or not.

Lots of info can be found at the University of Chicago celiac center site.

Open Original Shared Link

[purdue1014]

1 hour ago, GFinDC said:

Hi Purdue,

You've gotten some good advice already.  That functional doctor may help some people, but you are better off to stick with a traditional GI for now IMHO.  You can do some studying and learning on your own by sticking around this forum and reading threads and articles and asking questions.  There is a lot of combined experience among the members.

I am not sure where you live, but another thing you can try is finding a local support group for celiac disease.  There may be one close to you that can offer information and support.  Sometimes hospitals sponsor groups and there are also national celiac support groups.  Here is an article on support groups in the US:

https://www.celiac.com/articles/227/1/A-List-of-Local-Celiac-Disease-Support-GroupsChapters/Page1.html

The usual diagnostic flow is to have the celiac antibodie blood tests, and then an endoscopy to take 5 or so biopsy samples.  The endoscopy is done by a flexible tube they insert through the mouth.  They discourage singing during the endoscopy.   It's an outpatient procedure.

I was gluten-free for 3 months before I saw my GI so I didn't have the endoscopy.  But lots of people have had it.  Sometimes they report a sore throat from the procedure.

Sometimes there are research trials for celiac treatments and they only want people who have been through the full diagnostic process.  So if you think participating in a medical trial is something you'd want to do that is a consideration.

In Britain I think they had a requirement for diagnosis to get a tax consideration on buying gluten-free food some time ago.  I don't know if that is still true though.

Sometimes people find it hard to stick to the gluten-free diet without a diagnosis.  A diagnosis might help in the willpower department.

If you did go gluten-free now and decided to get tested later they recommend 12 weeks of eating gluten before the endoscopy.  That can be tough to do if you are sick every time you eat gluten.  So it's easier on most people to do the testing up front.

But you are right, there is no absolute requirement that you get fully diagnosed to go gluten-free.  It's a lifetime commitment so that may be easier if you know for sure.  Or maybe not.  Some people have such bad symptoms that resolve on a gluten-free diet that it doesn't matter to them if a test shows celiac or not.

Lots of info can be found at the University of Chicago celiac center site.

Open Original Shared Link

Thanks guys, I really do appreciate the information--I'll take a look at the links.  I'll stick with my GI MD appt end of March:)  Thanks again!

[frieze]

your cousin needs to be worked up for celiac, ASAP.  i know he is not 1' degree, but he is not all that far removed.

not to be rude or nosy, were you an only d/t miscarriage?  that tends to be more common in celiac women

On 2/7/2016 at 1:30 PM, purdue1014 said:

Thanks guys, I really do appreciate the information--I'll take a look at the links.  I'll stick with my GI MD appt end of March:)  Thanks again!