Newbie with questions

[Jen91]

Hi,

As of today I have been on a gluten free diet for 2 weeks. My PCP suggested I do it for 2 weeks to see if it would help with the GI symptoms I have been having for the past 8 years, after having my son. I have been tested for celiac multiple times by blood, and had 1 colonoscopy and endoscopy which both came back normal ( about 7-8 years ago).  However she said that just because I am negative for celiac does not mean I don't have a gluten intolerance, and I would know 1 way or the other by the end of 2 weeks.

My GI symptoms were pain and cramping with urgent diarrhea almost immediately after eating a meal. Sometimes nausea sneaks in there as well, and just an overall don't feel well feeling.

It's been 2 weeks and I have been completely gluten free, as far as I am aware.

I feel like my stomach is confused and does not know how to react at this time. Somedays I am either constipated (which is a new one for me) and I will get small cramps that are relieved after having a BM. Other days I have diarrhea but not the cramps, pain, urgency ,etc.

Around day 8 I did pick up chicken wings from a place I always eat them from (they said they were not breaded, and I assumed that would be fine) and I felt like crap after eating, nausea, cramps, etc.

But today I have had diarrhea all day, but again no cramps, nausea, urgency or anything.

Is this normal for someone just starting on the diet, or should it of been a  oh your gluten free all your symptoms magically disappear and you should no longer have any diarrhea? Do I continue on being gluten free?

 

 

 

[GFinDC]

Hi Jen91,

Yes, symptoms can actually seem worse for a while after going gluten-free.  Your digestive system is starting to heal and that is not a one or 2 day thing.  Some studies said the recovery time can be up to 18 months.  I think most people will get major relief of symptoms long before that though.  If you are planning to be tested again you need to keep eating gluten.  But if you are done with tests and want to go gluten-free without a formal diagnosis, then you are on you way to recovery now.

[Jmg]

56 minutes ago, Jen91 said:

Is this normal for someone just starting on the diet, or should it of been a  oh your gluten free all your symptoms magically disappear and you should no longer have any diarrhea? Do I continue on being gluten free?

For me, after 3 days I noticed an improvement, but it was by no means magic disappearance of all symptoms. You should be thinking in months for that. 

Where I think your GP is correct is that after 2 weeks you should hopefully see a reaction and you already have. So you know now that celiac or not, you react to gluten. Your next step should be to avoid it completely. That would probably mean no chicken wing, because even if not breaded it may have been in contact with other breaded ones.

As GFinDC says above, if your through with testing keep going on the diet. Keep a food diary to track what you eat and how you feel and just listen to your body and see if you can discern any changes / improvements in symptoms over the next days.

Also, pay attention to what your eating. If you've removed all gluten you may have removed a lot of the fibre you were eating. That could be the cause of the constipation. Eat as much fresh, unprocessed foods as you can. Vegetables, fruit, salad, meat, eggs. Go easy / avoid dairy if you can. 

Good luck

 

 

[Sparky2009]

It sounds like your chicken sauce could easily be the culprit. Pre-ground spices, vinegars and many colouring has hidden gluten. It's imperative you research exactly what's in the food you're being served. When in doubt, throw out. Symptoms can last for quite awhile and often people take a bit longer to heal. Don't give up!

[Jen91]

As far as I am aware I am done with testing. Celiac was ruled out 8 years ago both with blood and colonoscopy. My PCP just did the blood work for it again and it was negative again . I have an appointment with GI on 9/19, and I was hoping by going gluten free now, if I improved I wouldn't need to see them but I guess regardless I probably need to. 

My next question was going to be if as someone who is not celiac but gluten intolerant, do I need to be as concerned about cross contamination? Like can I use the same toaster as regular bread is toasted in even though I do not have a celiac? 

[GFinDC]

Hi Jen91,

I know you were tested multiple times over the years.  Celiac disease can develop at any time in your life.  Some people are diagnosed young and some later and some much later.  So repeated testing isn't a waste of time.

The thing about gluten sensitivity vs celiac disease is there isn't much known about gluten sensitivity.  There aren't really any clear rules to follow except do what makes your body well.  You may have celiac disease, but just don't do well on the tests.  Some people have an IgA deficiency and don't make enough IgA antibodiies for those tests to be useful.  Celiac testing is not a perfect thing yet.  It's better to get all the celiac disease antibodies tested, as you may hit on one but not on another.

The test list for all antibodies is:

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

It's typical for doctors to only test for ttg antibodies, which may miss some people.  The DGP IgA and DGP IgG are considered very specific for celiac disease.

[cyclinglady]

1 hour ago, GFinDC said:

Hi Jen91,

I know you were tested multiple times over the years.  Celiac disease can develop at any time in your life.  Some people are diagnosed young and some later and some much later.  So repeated testing isn't a waste of time.

The thing about gluten sensitivity vs celiac disease is there isn't much known about gluten sensitivity.  There aren't really any clear rules to follow except do what makes your body well.  You may have celiac disease, but just don't do well on the tests.  Some people have an IgA deficiency and don't make enough IgA antibodiies for those tests to be useful.  Celiac testing is not a perfect thing yet.  It's better to get all the celiac disease antibodies tested, as you may hit on one but not on another.

The test list for all antibodies is:

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

It's typical for doctors to only test for ttg antibodies, which may miss some people.  The DGP IgA and DGP IgG are considered very specific for celiac disease.

And...I am one of those who test negative on the common screening test for celiac disease: TTG IGA!  ?

[cyclinglady]

If the gluten-free diet Does not work (give it six months, in my opinion), please continue to advocate for your health!  I could have sworn that my niece had celiac disease, but they found Crohn's when they did a pill cam.  She did  NOT present with normal Crohn's symptoms either.  

[Jen91]

16 hours ago, GFinDC said:

Hi Jen91,

I know you were tested multiple times over the years.  Celiac disease can develop at any time in your life.  Some people are diagnosed young and some later and some much later.  So repeated testing isn't a waste of time.

The thing about gluten sensitivity vs celiac disease is there isn't much known about gluten sensitivity.  There aren't really any clear rules to follow except do what makes your body well.  You may have celiac disease, but just don't do well on the tests.  Some people have an IgA deficiency and don't make enough IgA antibodiies for those tests to be useful.  Celiac testing is not a perfect thing yet.  It's better to get all the celiac disease antibodies tested, as you may hit on one but not on another.

The test list for all antibodies is:

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

It's typical for doctors to only test for ttg antibodies, which may miss some people.  The DGP IgA and DGP IgG are considered very specific for celiac disease.

Hi,

So these are what I was just tested for recently. It looks like they tested for what you said above, unless I am missing something.

Tests: (9) Celiac Disease Panel (803173)
! IgA                       128 mg/dL                   81 - 463         *52
! Tissue Transglutaminase Antibody IgA
                            3.06 Units                  <=19.99          *53
    tTG IgA Reference Range:
    <=19.99         Negative
    20.00-30.00    Weak Positive
    >=30.01         Positive
! Tissue Transglutaminase Antibody IgA Result
                            Negative                    Negative         *54
   
! Gliadin (Deamidated) Antibody IgA
                            3.09 Units                  <=19.99          *55
    DGP IgA Reference Range:
    <=19.99            Negative
    20.00-30.00       Weak Positive
    >=30.01            Positive
! Gliadin (Deamidated) Antibody IgA Result
                            Negative                    Negative         *56

Tests: (11) Coccidioides IgG/IgM Confirmation (IMDF) (904083)
! Coccidioides Antibody IgG (IMDF)
                            Negative                    Negative         *62
! Coccidioides Antibody IgM (IMDF)
                            Negative                    Negative         *63
 

[Jen91]

I feel like I have seen improvements so far except for in my GI symptoms, which is the biggest issue for me. I work at a Hospital and yesterday I looked up their gluten free foods in the cafeteria. I got a grilled chicken breast and ate some regular French fries, both of which are on that list but I ended up with pretty bad diarrhea.

The only thing I could think of was maybe they use the same fryer for the regular fries and curly fries, but I don't know if that would cause me to react. I would also hope that as a health care facility they would be better about worrying about cross contamination when they have a gluten free list of foods for people with celiac.

[Kurasz]

My bowel cramping and constipation with diarrhea got worse for the first 6 weeks. Its your antibodies attacking your intestines to remove the gluten. It usually goes away in 6 to 8 weeks. But even a glass that wasn't washed well can bring the symptoms back. Im going on 4 weeks from a poorly washed glass.