1year post-DX appointment: feeling really nervous!

[Juca]

Hi everyone, 

This is going to be a long one, so please bear with me. 

Finally I have my 1 year review appointment next week. As someone who rarely had any GI symptoms (and so had no way to tell if I am getting glutened), I was really looking forward to this day. I really wanted to find out if all the changes I made in my life I had done the trick. Also, because we postponed trying to get pregnant until I was doing better. 

But now, I am scared. And my head is filling up with questions. 

A year ago I had off the chart high blood tests and was a Marsh 3C. Six months ago the blood tests were significantly better but far from good. 

I was feeling quite positive until about 3 weeks ago. Then, I started suffering from bad hay fever (itchy red eyes, blocked drippy nose, itchy palate..) for the first time in my life. Aren't allergies supposed to go away/improve on a gluten-free diet?? Also some little blisters showed up in my hands, which the dermatologist thought might be dermatitis herpetiformis but clearly was far from sure. 

Am I getting glutened? Are the 2 things related or just a big coincidence? If I was glutened recently, will the doctor be able to tell a single episode from how I did the past 6 months? If so, how? 

I am beeing followed by my GP, as it is usually done here. He is a good doctor (for example, he was the one who finally diagnosed me) but, as he admits, has limited experience with celiac disease. So I wanna go there with my homework done:

- what should the celiac disease panel include and how does one interpret it? 

- should he retest iron, vit D, folic acid, etc? 

- is it worth going through a skin biopsy to confirm the dermatitis? It might be my only visible symptom to tell if I am getting glutened...

- should I have a GI biopsy again at some point? How can one tell if  nutrients are being absorbed properly? 

- should I do an "oats" challenge? Haven't risked eating any so far.. 

- what else should I ask about in this appointment? 

This might shock some of you, but sometimes I wish I felt worse when eating gluten. It is so difficult to have this invisible monster, always hanging over your head.. Never knowing if you did enough.. Never knowing who to trust.. 

Please let me know what you think or how did it go for you, and.. fingers crossed! 

 

[cyclinglady]

2 hours ago, Juca said:

Hi everyone, 

This is going to be a long one, so please bear with me. 

Finally I have my 1 year review appointment next week. As someone who rarely had any GI symptoms (and so had no way to tell if I am getting glutened), I was really looking forward to this day. I really wanted to find out if all the changes I made in my life I had done the trick. Also, because we postponed trying to get pregnant until I was doing better. 

But now, I am scared. And my head is filling up with questions. 

A year ago I had off the chart high blood tests and was a Marsh 3C. Six months ago the blood tests were significantly better but far from good. 

I was feeling quite positive until about 3 weeks ago. Then, I started suffering from bad hay fever (itchy red eyes, blocked drippy nose, itchy palate..) for the first time in my life. Aren't allergies supposed to go away/improve on a gluten-free diet?? Also some little blisters showed up in my hands, which the dermatologist thought might be dermatitis herpetiformis but clearly was far from sure. 

Am I getting glutened? Are the 2 things related or just a big coincidence? If I was glutened recently, will the doctor be able to tell a single episode from how I did the past 6 months? If so, how? 

I am beeing followed by my GP, as it is usually done here. He is a good doctor (for example, he was the one who finally diagnosed me) but, as he admits, has limited experience with celiac disease. So I wanna go there with my homework done:

- what should the celiac disease panel include and how does one interpret it? 

- should he retest iron, vit D, folic acid, etc? 

- is it worth going through a skin biopsy to confirm the dermatitis? It might be my only visible symptom to tell if I am getting glutened...

- should I have a GI biopsy again at some point? How can one tell if  nutrients are being absorbed properly? 

- should I do an "oats" challenge? Haven't risked eating any so far.. 

- what else should I ask about in this appointment? 

This might shock some of you, but sometimes I wish I felt worse when eating gluten. It is so difficult to have this invisible monster, always hanging over your head.. Never knowing if you did enough.. Never knowing who to trust.. 

Please let me know what you think or how did it go for you, and.. fingers crossed! 

 

Welcome!  

If you are experiencing some symptoms (and DH might be one of them), I would not start experimenting with oats.  Wait until after your visit and when you have been symptom free.  

Here is testing information:

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Healing can take time.  Do not fret, if your antibodies are still elevated.  Remember, you are looking for a downward trend.  I waited five years to get another endoscopy but that is because I was experiencing GERD symptoms (new) while  I was on a very strict gluten-free diet.  Turns out my small intestine has healed and my gastritis is not related to a celiac flare-up.  

You can ask for a nutrition panel and check for anemia.  If your anemia has resolved, chances are you are fine in absorbing anything per my doctor.  Of course, periodic exposures to hidden gluten can cause setbacks.  

You have a celiac diagnosis based on intestinal biopsies.  I do not think it is necessary to get a skin biopsy.  

Allergies can develop at anytime and yours may be unrelated to celiac disease. Not everything can be blamed on celiac disease!  ?

I think it was prudent to wait until you get a clean bill of health before getting pregnant.  I am confident that you will be fine.  Just be careful about eating out and limit your exposure to insure a good pregnancy.  Be sure your thyroid is monitored.  

[Juca]

Thank you for the positivity, it helps..  

I was severely anemic, but since I had IV iron, a normal blood test wouldn't mean much. Unless iron doesn't last much in the body, and poor absorption would already show up.. I will find out. 

Same with B12, still having injections. 

Thyroid and liver were normal a year ago. 

I guess I will still try to find a dermatologist that is a little familiar with DH. It is reasonable to skip the biopsy but it can still be useful to get an informed opinion. 

[RMJ]

I understand your occasional desire to feel worse when eating gluten.  I don’t have obvious symptoms, so I’ve had to be more and more compulsive about avoiding any trace of contamination to get my antibody levels down to normal.  Maybe there was just one food that was contaminated, but I’ll never know which one.

[Juca]

Exactly..