Follow up appointment with Gastro - 2 mo

[jen22]

Hi all, I posted earlier this week about my lab results after 2 months.  I went to the gastro today and he said that he was "very surprised" that my antigliadin antibody (both IGG and IGA) numbers are exactly the same.  I am still having some diarrhea about 2x a week.  However my TTG IGA and IGG are both now normal.

He questioned if I was adhering to a gluten free diet and suggested I look at my lotions, etc.  I have been strictly gluten free for 2 months and cut out all grains, corn, etc as well as dairy.  I even changed out my lotions, toothpaste, makeup, etc.  He said I need to be even stricter now and is ordering other tests, including a hydrogen breath test to test for SIBO, and suggested I may have refractory celiac.  We are doing the other tests and I will re-test the celiac panel in 2 months. 

I can see where I may be getting some cross contamination since my family eats gluten, although I have been really careful.  I also eat out perhaps 2 -3 times a week and order off of gluten free menus.  Next step is changing out our nonstick pans and plastic cooking utensils.  He said I should try to limit eating out for the next two months.

I am just posting this for any thoughts or similar experiences.  I guess I feel that 2 months is too soon to worry about the labs and I am feeling a little overwhelmed and emotional about all of this.  I also have Type I diabetes and Hashimotos.

 

[cyclinglady]

3 hours ago, jen22 said:

Hi all, I posted earlier this week about my lab results after 2 months.  I went to the gastro today and he said that he was "very surprised" that my antigliadin antibody (both IGG and IGA) numbers are exactly the same.  I am still having some diarrhea about 2x a week.  However my TTG IGA and IGG are both now normal.

He questioned if I was adhering to a gluten free diet and suggested I look at my lotions, etc.  I have been strictly gluten free for 2 months and cut out all grains, corn, etc as well as dairy.  I even changed out my lotions, toothpaste, makeup, etc.  He said I need to be even stricter now and is ordering other tests, including a hydrogen breath test to test for SIBO, and suggested I may have refractory celiac.  We are doing the other tests and I will re-test the celiac panel in 2 months. 

I can see where I may be getting some cross contamination since my family eats gluten, although I have been really careful.  I also eat out perhaps 2 -3 times a week and order off of gluten free menus.  Next step is changing out our nonstick pans and plastic cooking utensils.  He said I should try to limit eating out for the next two months.

I am just posting this for any thoughts or similar experiences.  I guess I feel that 2 months is too soon to worry about the labs and I am feeling a little overwhelmed and emotional about all of this.  I also have Type I diabetes and Hashimotos.

 

Refractory?  Your GI is nuts!  It is WAY to soon to even consider refractory celiac disease.  It is too soon to even suggest non-responsive celiac disease.  Why?  The gluten free diet has a HUGE learning curve.  Huge!  Then there is the time to heal.  Antibodies do not shut down fast after you stop the consumption of gluten.  Your body decides when it is going to stop attacking!    It can take antibodies over a year to completely come down.  Maybe they will never come down.  That happened to me.

My DGP IgA was the only test in the complete celiac panel that has ever been positive in five years.  No one knows why.  My DGP IgA would be elevated usually because I was unwell and that is when I would go in for testing (“Gee, doctor, somehow I got glutened, but for the life of me I do not know how!”    I always assumed that I was exposed to gluten.  Last year, my lab test was off the charts as usual, but so were my thyroid antibodies.  I personally think if one autoimmune disorder gets triggered, it impacts all that you have.  

I consider myself to be the gluten police.  I live in a gluten free home, do not eat out except at 100% dedicated gluten free restaurants, and avoid processed foods (even certified gluten-free foods).  I was so disheartened.  Sure I had periods of feeling really well.  Last year, I somehow got glutened, had the flu, a tooth infection and a cold all within 30 days.  I was a wreak.  I developed autoimmune hives daily (head to toe) for six months.  I found out I was allergic to acetaminophen.  Just another drug that causes my face and throat to swell up.  I was going crazy!

Of course, my GI suggested another endoscopy, but I resisted.  I finally caved in 10 months later after trialing the Fasano diet (basically no processed foods at all and only rice as a grain, but I just went grain free).  I still was having lingering issues.  Like GERD, nausea and stomach pinching if I bent over.  (When diagnosed, I only had anemia!)  

My biopsies revealed a healed small intestine.  Healthy villi and a very elevated DGP IgA.  Weird!   The bad news was that I was diagnosed with Chronic Autoimmune Gastritis and had a polyp removed (no cancer yet...).  I can control my celiac disease, but not my Gastritis or Hashimoto’s.  Thankfully, my body calmed down and I am not longer experiencing many symptoms.  I have not bothered to get re-checked.  It is what is is.  

So, two months is too short a time for your GI to assume refractory.  You are probably making classic gluten free mistakes — like eating out.  You have yet to learn what your threshold is for gluten.  20 ppm is a cut off that is supposedly okay for most celiacs, but not all.  Just look at the DH section.  They have to be super strict.  Me too.  I do not have DH, but a tiny exposure to gluten seems to trigger more than just damaging my villi.  It sets off a cascade of autoimmune issues.   I remain super strict and take risks when I am well and can take a three to six month illness hit.    Who wants to be sick for months?

Is everyone like me?  No.  But you need to find your own way.  You already have three autoimmune issues.  Some celiacs just deal with one.  

Read up on keeping a safe kitchen and do not eat out until you are symptom free.  Even then make sure it is worth it.  

Other than initially taking iron supplements when I was first diagnosed, I take no supplements.  I get my nutrition from good food.  Make sure your supplements are gluten free.  From some recent research, consider avoiding probiotics.  Instead of populating your colon, you could be populating your small intestine!  Not good for motility issues of the gut until you are healed.

Open Original Shared Link

It is good that your GI is ruling out SIBO.  I guess he is not that crazy!  ?

I hope this helps!  I promise, it does get easier.  

 

Edited August 28, 2018 by cyclinglady

[jen22]

43 minutes ago, cyclinglady said:

Refractory?  Your GI is nuts!  It is WAY to soon to even consider refractory celiac disease.  It is too soon to even suggest non-responsive celiac disease.  Why?  The gluten free diet has a HUGE learning curve.  Huge!  Then there is the time to heal.  Antibodies do not shut down fast after you stop the consumption of gluten.  Your body decides when it is going to stop attacking!    It can take antibodies over a year to completely come down.  Maybe they will never come down.  That happened to me.

My DGP IgA was the only test in the complete celiac panel that has ever been positive in five years.  No one knows why.  My DGP IgA would be elevated usually because I was unwell and that is when I would go in for testing (“Gee, doctor, somehow I got glutened, but for the life of me I do not know how!”    I always assumed that I was exposed to gluten.  Last year, my lab test was off the charts as usual, but so were my thyroid antibodies.  I personally think if one autoimmune disorder gets triggered, it impacts all that you have.  

I consider myself to be the gluten police.  I live in a gluten free home, do not eat out except at 100% dedicated gluten free restaurants, and avoid processed foods (even certified gluten-free foods).  I was so disheartened.  Sure I had periods of feeling really well.  Last year, I somehow got glutened, had the flu, a tooth infection and a cold all within 30 days.  I was a wreak.  I developed autoimmune hives daily (head to toe) for six months.  I found out I was allergic to acetaminophen.  Just another drug that causes my face and throat to swell up.  I was going crazy!

Of course, my GI suggested another endoscopy, but I resisted.  I finally caved in 10 months later after trialing the Fasano diet (basically no processed foods at all and only rice as a grain, but I just went grain free).  I still was having lingering issues.  Like GERD, nausea and stomach pinching if I bent over.  (When diagnosed, I only had anemia!)  

My biopsies revealed a healed small intestine.  Healthy villi and a very elevated DGP IgA.  Weird!   The bad news was that I was diagnosed with Chronic Autoimmune Gastritis and had a polyp removed (no cancer yet...).  I can control my celiac disease, but not my Gastritis or Hashimoto’s.  Thankfully, my body calmed down and I am not longer experiencing many symptoms.  I have not bothered to get re-checked.  It is what is is.  

So, two months is too short a time for your GI to assume refractory.  You are probably making classic gluten free mistakes — like eating out.  You have yet to learn what your threshold is for gluten.  20 ppm is a cut off that is supposedly okay for most celiacs, but not all.  Just look at the DH section.  They have to be super strict.  Me too.  I do not have DH, but a tiny exposure to gluten seems to trigger more than just damaging my villi.  It sets off a cascade of autoimmune issues.   I remain super strict and take risks when I am well and can take a three to six month illness hit.    Who wants to be sick for months?

Is everyone like me?  No.  But you need to find your own way.  You already have three autoimmune issues.  Some celiacs just deal with one.  

Read up on keeping a safe kitchen and do not eat out until you are symptom free.  Even then make sure it is worth it.  

Other than initially taking iron supplements when I was first diagnosed, I take no supplements.  I get my nutrition from good food.  Make sure your supplements are gluten free.  From some recent research, consider avoiding probiotics.  Instead of populating your colon, you could be populating your small intestine!  Not good for motility issues of the gut until you are healed.

Open Original Shared Link

It is good that your GI is ruling out SIBO.  I guess he is not that crazy!  ?

I hope this helps!  I promise, it does get easier.  

 

Thank you! Thank you.  I am feeling less crazy.  I thought it seemed way too soon to be talking about refractory.

I'm going to take your advice and also read up more on the forums.  I do not know anyone, personally, who has celiac disease and getting my family to rally has been a challenge.  I have taken over all of the cooking and food prep and meal planning to try to limit exposure as much as possible, but our habit of eating out between 1-3 times a week (including lunch) is probably not doing me any good right now.  

[ch88]

5 hours ago, jen22 said:

I can see where I may be getting some cross contamination since my family eats gluten, although I have been really careful.  I also eat out perhaps 2 -3 times a week and order off of gluten free menus.  Next step is changing out our nonstick pans and plastic cooking utensils.  He said I should try to limit eating out for the next two months.

I don't have much confidence in gluten free restaurants. It takes a lot of knowledge and dedication to eliminate all cross contamination and to make sure all ingredients are gluten free.  Restaurant workers in general just don't have that type of training.