10 months later

[RebeccaR]

Have had vague symptoms starting from when I was pregnant with my second child (he is now 20). These include GERD requiring pantoprazole, microcytic hypochromic anemia with low ferritin (2 iron infusions) and low hemoglobin, a bleeding disorder, dizziness, pain in my hips and shoulders, especially at night, IBS and random anxiety attacks. Hematologist tested me with tTg-IgA which was negative, once 15 years ago, and again in January before gluten free. 

Last winter I tried low FODMAP. The diet was nothing short of miraculous-my reflux went away within 2 weeks, bowel movements normal for the first time in decades (no more urgent trips to the bathroom!). I added all the FODMAP foods back keeping bread until last. Then with one slice of bread I had a panic attack and was in the bathroom all day. A week later I tried a bagel and same thing-really sick.  Have had a few minor gluten run-ins in the last 9 months and I am convinced that I am sensitive to gluten itself, not just to the FODMAPs, because even a very small exposure will make me sick (like pretty much every time I eat at a friend's house, even with avoiding all obvious gluten).

 

Have now been 9 months gluten free, and reflux and IBS are still gone, my joints feel better, I am sleeping through the night, and have way more energy. My ferritin steadily rising after years of going down, hemoglobin went from 106 to 127, and my red blood cells are "unremarkable" for the first time ever (without any extra iron supplements over the multivitamin I have always taken). 

 

I just went to my doctor to ask if I could have celiac, and she said no because my antibodies (the tTg IgA) are negative. I did ask for a total IgA test (result 0.66 g/L, normal range is over 0.7). 

 

She referred me to a gastroenterologist anyways. The gastroenterologist called today to say that they have a cancellation on Thursday for an endoscopy and do I want to take it. Now I am confused because I have not even had an appointment with the gastro to ask whether it makes sense to have an endoscopy, and also I thought if I was gluten free the endoscopy wouldn't show anything. This gastroenterologist does not have a clinic appointments until next March, so I can't even ask any questions before the procedure. The woman who scheduled the endoscopy couldn't answer any questions.

 

My question is does it make sense to go for this endoscopy on Thursday? Do I need an endoscopy at all if I am feeling well and am very committed to eating completely gluten-free? Is the recovery from anemia enough to call it celiac even with negative antibodies? Is there any advantage to pushing for a clearer diagnosis? I am getting my kids (in their 20s and healthy) to ask their doctors if they should get a celiac antibody test.

[cyclinglady]

1 hour ago, RebeccaR said:

Have had vague symptoms starting from when I was pregnant with my second child (he is now 20). These include GERD requiring pantoprazole, microcytic hypochromic anemia with low ferritin (2 iron infusions) and low hemoglobin, a bleeding disorder, dizziness, pain in my hips and shoulders, especially at night, IBS and random anxiety attacks. Hematologist tested me with tTg-IgA which was negative, once 15 years ago, and again in January before gluten free. 

Last winter I tried low FODMAP. The diet was nothing short of miraculous-my reflux went away within 2 weeks, bowel movements normal for the first time in decades (no more urgent trips to the bathroom!). I added all the FODMAP foods back keeping bread until last. Then with one slice of bread I had a panic attack and was in the bathroom all day. A week later I tried a bagel and same thing-really sick.  Have had a few minor gluten run-ins in the last 9 months and I am convinced that I am sensitive to gluten itself, not just to the FODMAPs, because even a very small exposure will make me sick (like pretty much every time I eat at a friend's house, even with avoiding all obvious gluten).

 

Have now been 9 months gluten free, and reflux and IBS are still gone, my joints feel better, I am sleeping through the night, and have way more energy. My ferritin steadily rising after years of going down, hemoglobin went from 106 to 127, and my red blood cells are "unremarkable" for the first time ever (without any extra iron supplements over the multivitamin I have always taken). 

 

I just went to my doctor to ask if I could have celiac, and she said no because my antibodies (the tTg IgA) are negative. I did ask for a total IgA test (result 0.66 g/L, normal range is over 0.7). 

 

She referred me to a gastroenterologist anyways. The gastroenterologist called today to say that they have a cancellation on Thursday for an endoscopy and do I want to take it. Now I am confused because I have not even had an appointment with the gastro to ask whether it makes sense to have an endoscopy, and also I thought if I was gluten free the endoscopy wouldn't show anything. This gastroenterologist does not have a clinic appointments until next March, so I can't even ask any questions before the procedure. The woman who scheduled the endoscopy couldn't answer any questions.

 

My question is does it make sense to go for this endoscopy on Thursday? Do I need an endoscopy at all if I am feeling well and am very committed to eating completely gluten-free? Is the recovery from anemia enough to call it celiac even with negative antibodies? Is there any advantage to pushing for a clearer diagnosis? I am getting my kids (in their 20s and healthy) to ask their doctors if they should get a celiac antibody test.

Welcome!  

The endoscopy is bound to show healthy villi because you have been gluten free for so long.  Experts recommend a full two weeks of consuming gluten (1 to 2 slices of bread or equivalent) prior to an endoscopy.  It is 8 to 12 weeks for the blood test.  ALL celiac disease testing (except gene testing which is used to rule out, not diagnose usually) requires you to be on a full gluten diet.  

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Your negative TTG?  I have never had a positive on the TTG (tested many times by different labs).  Never a positive on the EMA.  However, I do get a positive on the DGP.  There is a reason why there are a few celiac tests.    Unfortunately, the TTG catches most celiacs and to save MONEY, medical usually calls for the TTG for screening.  (Your GI can order the full panel possibly if you go in for the endoscopy to help confirm a celiac disease diagnosis.)

Having a firm diagnosis can make it easy to get and keep getting your kids tested even if they are symptomatic.  It helps doctors check for other concurrent illnesses too that can crop up.   But you can remain gluten free.  Lots of people are forced to do so for a variety of reasons.

What about getting that endoscopy pushed back a few weeks later and load up on gluten (not pleasant, but it has been done many times)?  You do have the authorization and that is....so fortunate!!! I would not wait for just a consultation in March, but that is me.  

 

[knitty kitty]

On 10/29/2018 at 2:15 PM, RebeccaR said:

Have had vague symptoms starting from when I was pregnant with my second child (he is now 20). These include GERD requiring pantoprazole, microcytic hypochromic anemia with low ferritin (2 iron infusions) and low hemoglobin, a bleeding disorder, dizziness, pain in my hips and shoulders, especially at night, IBS and random anxiety attacks. Hematologist tested me with tTg-IgA which was negative, once 15 years ago, and again in January before gluten free. 

Last winter I tried low FODMAP. The diet was nothing short of miraculous-my reflux went away within 2 weeks, bowel movements normal for the first time in decades (no more urgent trips to the bathroom!). I added all the FODMAP foods back keeping bread until last. Then with one slice of bread I had a panic attack and was in the bathroom all day. A week later I tried a bagel and same thing-really sick.  Have had a few minor gluten run-ins in the last 9 months and I am convinced that I am sensitive to gluten itself, not just to the FODMAPs, because even a very small exposure will make me sick (like pretty much every time I eat at a friend's house, even with avoiding all obvious gluten).

 

Have now been 9 months gluten free, and reflux and IBS are still gone, my joints feel better, I am sleeping through the night, and have way more energy. My ferritin steadily rising after years of going down, hemoglobin went from 106 to 127, and my red blood cells are "unremarkable" for the first time ever (without any extra iron supplements over the multivitamin I have always taken). 

 

I just went to my doctor to ask if I could have celiac, and she said no because my antibodies (the tTg IgA) are negative. I did ask for a total IgA test (result 0.66 g/L, normal range is over 0.7). 

 

She referred me to a gastroenterologist anyways. The gastroenterologist called today to say that they have a cancellation on Thursday for an endoscopy and do I want to take it. Now I am confused because I have not even had an appointment with the gastro to ask whether it makes sense to have an endoscopy, and also I thought if I was gluten free the endoscopy wouldn't show anything. This gastroenterologist does not have a clinic appointments until next March, so I can't even ask any questions before the procedure. The woman who scheduled the endoscopy couldn't answer any questions.

 

My question is does it make sense to go for this endoscopy on Thursday? Do I need an endoscopy at all if I am feeling well and am very committed to eating completely gluten-free? Is the recovery from anemia enough to call it celiac even with negative antibodies? Is there any advantage to pushing for a clearer diagnosis? I am getting my kids (in their 20s and healthy) to ask their doctors if they should get a celiac antibody test.

My advice is to go ahead and have the endoscopy without doing a gluten challenge.  

Sure, you've started healing, but as we age, some of us can take longer to heal completely.  Sometimes as long as eighteen months to two years.  

At least you'll be able to get a starting point from which to measure future progress.  And it's also important to check for any other problems that might have developed during that long undiagnosed period.  Don't want to scare you, but some Celiacs get lymphomas or cancer or gastritis. Better to rule those out now.  But healing is the rule.  See, here's a study done that shows it...

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I prefer the Autoimmune Protocol Paleo diet for healing....

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Hope this helps!  Keep us posted on your results!