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Endoscopy And Gluten Full Challenge

moosemalibu

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moosemalibu Collaborator
moosemalibu
Posted
  • Author

I had my endoscopy procedure today. Obviously awaiting the histology on the 6 biopsies that were taken. However - he took pictures of the esophagus, stomach (cardia and antrum) which were normal. The second portion of the duodenum shows atrophic mucosa. I am back on the gluten free diet. I also had my blood drawn today for the genetic test. I'll let you all know how the post-procedure follow up appointment goes in 3 weeks. Seems pretty consistent with celiacs.

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BelleVie Enthusiast
BelleVie
Posted

My boyfriend tried to put a positive spin on it and said we can now have a proper goodbye to all my favorite meals and restaurants in this 3 week time. I guess that is one way to look at it. ;)

 

YES! I may or may not have made several rather expensive trips to the French bakery, where I, maybe, perhaps, possibly, may have eaten more chocolate croissants and pastries than anyone should be permitted to eat in one go. :) It hurt, it made me feel terrible, but man, it was a delicious farewell. 

moosemalibu Collaborator
moosemalibu
Posted
  • Author

I was glad to say good bye and be done with the challenge 2 weeks in. I already feel 10x better since being gluten free for 3 days. Amazing.

melissy01 Newbie
melissy01
Posted

I have been gluten free for almost a year and a half after having been diagnosed with intolerance based on a stool test as well as genetic testing which says I have the celiac gene and a gluten intolerance gene. Since stopping gluten any time I have ingested it accidentally or through cross contamination i had a violent reaction.

I too just returned from the GI doctor who suggested I eat gluten for the next three weeks so we can determine if I have celiac. But I wonder if it is worth it just to feel legit and get a diagnosis. I have come so far and I love gluten more than anything in this world. It is my version of crack cocaine and I will crave it and dream about donuts and what not. Life without gluten has been so much better and I wonder if I start up again if I will be able to function.

What is the benefit of saying I have celiac vs. gluten intolerance and is 3 weeks enough time to give me an actual celiac diagnosis and show damage? Thanks.

Melissa

GFBea Newbie
GFBea
Posted

I just threw in the towel 2 days early on the gluten challenge because of pain and swelling in my legs - called the doctor to ask if I should stop and he said yes, and to get the blood test done today. 

 

Melissa my experience of eating gluten after a seven year break was that the cravings I used to experience came back full force and I found it very hard not to overdo it, even knowing how physically and mentally uncomfortable it was making me. Physically I think I will recover fast but psychologically I feel I was playing with fire. 

 

If I am considered for a gut biopsy after my blood results I will not be eating gluten again in advance of it - I can't go through that again. My body is very upset with me. 

moosemalibu Collaborator
moosemalibu
Posted
  • Author

I have been gluten free for almost a year and a half after having been diagnosed with intolerance based on a stool test as well as genetic testing which says I have the celiac gene and a gluten intolerance gene. Since stopping gluten any time I have ingested it accidentally or through cross contamination i had a violent reaction.

I too just returned from the GI doctor who suggested I eat gluten for the next three weeks so we can determine if I have celiac. But I wonder if it is worth it just to feel legit and get a diagnosis. I have come so far and I love gluten more than anything in this world. It is my version of crack cocaine and I will crave it and dream about donuts and what not. Life without gluten has been so much better and I wonder if I start up again if I will be able to function.

What is the benefit of saying I have celiac vs. gluten intolerance and is 3 weeks enough time to give me an actual celiac diagnosis and show damage? Thanks.

Melissa

 

Melissa - it is a personal choice that everyone has to make for themselves. If you feel comfortable being gluten free without a diagnosis then by all means continue to eat gluten free. I personally wanted to see what shape my intestines were in because I was recently diagnosed in late August via blood test. I think it is a good idea to get a baseline for me. And since I have only been gluten free for a month or so it wasn't a huge hardship to do a trial.

 

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My doctor recommended 3 weeks at 2 pieces of bread a day. I don't have my biopsy results yet but the gross changes he saw (mucosal atrophy) were enough to indicate there is a problem. Hope that helps. Good luck with whatever you choose.

Cara in Boston Enthusiast
Cara in Boston
Posted

My doctor (Celiac Center at BIDMC here in Boston) said 3-6 MONTHS for a gluten challenge.  It is different for everyone, some will show a measurable reaction before that, some won't.  If you get a negative result don't assume it is because you DON'T have celiac disease.

 

I gave up after 6 weeks and just decided to be gluten free.  

 

Cara

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moosemalibu Collaborator
moosemalibu
Posted
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The think blood test and the biopsy are different for the length of time for gluten challenge. I had already had my blood drawn prior going gluten free and then had to re-challenge for the biopsy because my PCP told me to go gluten free after serology results. I think the standard for blood test is 3 months of gluten and for biopsy its 2 weeks.

 

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moosemalibu Collaborator
moosemalibu
Posted
  • Author

Biopsy results are in. My doctor called me today and said that I was definitely celiac. I didn't have completely 'flat" villi but they were damaged and also there was an increase in WBC. He said with the serology and the biopsy along with my resolution of symptoms on a gluten-free diet I am celiac. So nothing surprising but I am glad that I had it done. It was worth the knowledge of recognizing my glutening symptoms clearly and for the farewell to the old diet and lifestyle. I am over a week out gluten free and I feel so much better. Still getting headaches, still get tired easily and my brain is still kinda befuddled but every day is a better day. Psyllium husk has helped my diarrhea so much I cannot advocate it more.

w8in4dave Community Regular
w8in4dave
Posted

Good for you for finding out what it is!! I know some just change thier diet and good for them!! I like to get a DX. Thank goodness you got yours!! Bless you!

moosemalibu Collaborator
moosemalibu
Posted
  • Author

Good for you for finding out what it is!! I know some just change thier diet and good for them!! I like to get a DX. Thank goodness you got yours!! Bless you!

Thank you!! Yes I feel the same way. If its not someone else's plan that's fine with me but I wanted a diagnosis for my own peace of mind. :)

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      That was just the visual report, so need to wait for confirmation or otherwise from the results. They did take a biopsy from the upper end of the duodenum(D1). D2 looked unremarkable on the camera. Just wish we didn’t have to wait so long for the results as she’s naturally a very anxious person. But thanks so much for taking the time to answer me
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