purdue1014

Thanks ladies!  

Reintroducing gluten (from my Whole 30) Friday.  Should be interesting.  So far, the only thing that has given me issues was dairy.  It'll be pancakes and a couple of beers on Friday for me...

Finally got my lab results today.  Positive for DPG IgG (12.0 EU/ml), and DPG IgA (9.9 EU/ml).  TTG IgA was negative at 0.5 U/ml, and EMA IgA was negative.  Total serum IgA by Nephelometry was 173 mg/dl.  

Thoughts?  

Now that I have the report, I'll contact the GI MD as we discussed above.  

Thanks guys!

On 2/8/2016 at 3:01 PM, frieze said:

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

 

Interesting thought!  Older sibling lived about 24 hours before passing.  Mom had a tough pregnancy (as she did with me).  Medical family members have speculated it was because mom had ITP in her 20s, but that's just a guess.  Never officially dx as a celiac. 

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.

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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!

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

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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?  

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.  

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...

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?

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.  

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

Alright, thanks ladies!

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!

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?  

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