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Endoscopy Scheduled

Duhlina

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Duhlina Apprentice
Duhlina
Posted

So, I went and saw the Nurse Practitioner at the Gastro Dr.'s office yesterday (if I had to wait to see the actual doctor it would have been several months). My blood test levels all came back as 'low positive' for celiac, so she wants to do an endoscopy with a biopsy to confirm. I have been gluten free for a little over two weeks now and the test is another week and a half away (9/26). I asked if I needed to start eating gluten again before the test and she surprisingly said no?? She said it takes a good 6-8 weeks for things to calm down in there so they should still be able to tell with a biopsy. By the time of the biopsy I will be gluten-free for almost 4 weeks.

I'm not so sure I agree with that from what I've read? I'm not thinking I want to go out on a bender and ingest gluten with every meal, but I think I should be eating SOME?!!?! Although I have been dreaming of that bender....hahaha....pizza, beer, fried calamari, fried chicken, big doughy hard rolls...mmmmm......

What say you?

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ravenwoodglass Mentor
ravenwoodglass
Posted

I think you should go back on gluten until the biopsy to give you the best chance of an accurate result. Be aware you could still have a false negative. You may find that even though you haven't been gluten-free for long that adding it back in makes you very ill. Let them know if it does.

Roda Rising Star
Roda
Posted

I say go back on it too. A month in some people could make a difference. Keep a log of your symptoms and reactions though in case it gets too bad and you can't make it eating gluent until the scope. Or you can use it as diagnositic info.

ravenwoodglass Mentor
ravenwoodglass
Posted

Also make sure they take multiple biopsies, I think 6 to 8 are advised not the one or two that some doctors do. And they should come from different areas of the small intestine.

Duhlina Apprentice
Duhlina
Posted
  • Author

Also make sure they take multiple biopsies, I think 6 to 8 are advised not the one or two that some doctors do. And they should come from different areas of the small intestine.

Yeah, from the sounds of what she explained it gave me the impression they would be doing one. Will they be offended if I insist on more? I don't want to tell them how to do their job, but I also don't want it to all be for nothing!!!

Roda Rising Star
Roda
Posted

Yeah, from the sounds of what she explained it gave me the impression they would be doing one. Will they be offended if I insist on more? I don't want to tell them how to do their job, but I also don't want it to all be for nothing!!!

This is how I put it to the doctor that did my oldest son's scope/biopsy. If she wasn't going to take the minimum of 6-8 samples we weren't going to bother with the exam at all! I told her this when she came in the room to talk to us before going back. His biopsy was completely normal, but we chose to do a trial of gluten free anyway.

Duhlina Apprentice
Duhlina
Posted
  • Author

Well, I've been eating a little bit of gluten this week since the endoscopy is scheduled for Monday and, after being gluten free for two weeks, I notice the following:

1. My first ingestion of gluten (fried calamari) gave me a migraine and I've had a low grade headache all week.

2. I haven't had any stomach 'issues' other than my stomach seems to make strange noises at the most inopportune times. But it hasn't made me sick to my stomach at all, which surprises me.

3. My 't-zone' on my face is back to being an oil slick.

4. My depression is creeping in again.

5. I'm not sleeping as well.

6. The bloating is back, but not nearly as bad as it was when I was full gluten.

7. The gluten-y things that I previously loved only taste 'meh' to me now. I can definitely live without them and be fine with it.

8. EVERYTHING, and I mean EVERYTHING, aches. I feel like I'm walking like my 94 year old Grandmother used to walk and I'm only 43!

It's obvious to me that gluten free is the way to go, for me, regardless of what the biopsy says!

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lucky28 Explorer
lucky28
Posted

Hi, I was miserable the last few weeks before my biopsy. I really glutened it up! I tried to think of all the stuff I loved or wanted to try and ate it all. I remember how horrible I felt but kept on because I really wanted to get the most bang for the buck so to speak, from my biopsy. My blood work was very low positive, only the ttg was slightly raised, and I tested positive for the dq2 or 2.5 gene. So I really wanted to push it over the edge, if I had it I wanted it to show on biopsy. Why spend the time and the money if it's only gonna be 1/2 arsed? Try to keep it up until your appt!

navigator Apprentice
navigator
Posted

I originally refused the scope and biopsy( May this year) as I didn't want to go back on gluten. However,my G.P.(who is very good and diagnosed me on blood results and my daughters having coeliac))persuaded me In June that it would be in my best interest to be referred to GI. I've had my appointment and I'm getting it on 26th Oct and the GI requested that I try to eat gluten every day until the scope. I have been back on gluten for two and a half weeks. I do feel terrible and could not have done this if I hadn't resigned from my work at the beginning of June. However, as I'm at home I've decided that I'm going to stick with it. I figure if I'm going to go through with having the scope I want the best chance to get a positive result. Try to stick with it.

Duhlina Apprentice
Duhlina
Posted
  • Author

Hi, I was miserable the last few weeks before my biopsy. I really glutened it up! I tried to think of all the stuff I loved or wanted to try and ate it all. I remember how horrible I felt but kept on because I really wanted to get the most bang for the buck so to speak, from my biopsy. My blood work was very low positive, only the ttg was slightly raised, and I tested positive for the dq2 or 2.5 gene. So I really wanted to push it over the edge, if I had it I wanted it to show on biopsy. Why spend the time and the money if it's only gonna be 1/2 arsed? Try to keep it up until your appt!

I'm trying! I SO want to have my favorite beer, but I just can't seem to do it. Maybe this weekend. What were the results of your biopsy? I'm really curious to know what they are going to see/find come Monday. I too tested low positive on the blood work.

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