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Endoscopy And Gluten Full Challenge


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35 replies to this topic

#16 moosemalibu

 
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Posted 14 October 2013 - 11:47 AM

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So this is my bloated tummy. This was day 1 of gluten ingestion. Normally have a flat stomach. This is what people don't see or realize when people like us get glutened. I wish all the people that thought it was OK to cheat would see this and the DH and the hours spent in bed not to mention the hours on the toilet.


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Jamie

"We can't help everyone, but everyone can help someone." Ronald Reagan

 

Diagnosed Celiac via blood test 8-22-13

Dairy & gluten free in 8-22-13 then did gluten challenge in October

Endoscopy/Biopsy Oct-26-13 positive for Celiac

HLA-DQ2 positive

Vitamin D insufficiency confirmed 12-6-13

Dairy Added back in successfully 3-1-14

Normal Antibody Levels 3-19-14! 

Egg, sugar alcohols Intolerant 5-2014

Dairy removed again 10-2014 due to ongoing diarrhea symptoms

Diagnosed with Microscopic Colitis after colonoscopy 12-1-14

 

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#17 Missbean

 
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Posted 14 October 2013 - 11:52 AM

Does it have to be bread? Can it be pasta, or pastries?
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#18 moosemalibu

 
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Posted 14 October 2013 - 12:21 PM

Does it have to be bread? Can it be pasta, or pastries?

 

I was told 2 slices of bread. If I eat anything else with gluten that day I just add it on top of the bread.


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Jamie

"We can't help everyone, but everyone can help someone." Ronald Reagan

 

Diagnosed Celiac via blood test 8-22-13

Dairy & gluten free in 8-22-13 then did gluten challenge in October

Endoscopy/Biopsy Oct-26-13 positive for Celiac

HLA-DQ2 positive

Vitamin D insufficiency confirmed 12-6-13

Dairy Added back in successfully 3-1-14

Normal Antibody Levels 3-19-14! 

Egg, sugar alcohols Intolerant 5-2014

Dairy removed again 10-2014 due to ongoing diarrhea symptoms

Diagnosed with Microscopic Colitis after colonoscopy 12-1-14

 

Celiac.com - Celiac Disease Board Moderator


#19 Missbean

 
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Posted 15 October 2013 - 10:57 AM

Yes - 2 pieces of bread for 3 weeks is what the GI specialist told me during my consult appointment. I would try to consult with the doctor before your endoscopy procedure so you are clear on what he is doing to you. I made sure that my doctor knows to take 6 biopsy samples as some do less and can miss the atrophy/damage.

do u think one bagel a day will do it? I have read somewhere that some doctors want us on gluten 6-8weeks
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#20 moosemalibu

 
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Posted 15 October 2013 - 11:21 AM

do u think one bagel a day will do it? I have read somewhere that some doctors want us on gluten 6-8weeks

You should call your doctor and ask these questions. He/She should be able to tell you what plan he wants you to follow. I can only share what I have been told: 2 slices of bread for 3 weeks prior to appointment.


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Jamie

"We can't help everyone, but everyone can help someone." Ronald Reagan

 

Diagnosed Celiac via blood test 8-22-13

Dairy & gluten free in 8-22-13 then did gluten challenge in October

Endoscopy/Biopsy Oct-26-13 positive for Celiac

HLA-DQ2 positive

Vitamin D insufficiency confirmed 12-6-13

Dairy Added back in successfully 3-1-14

Normal Antibody Levels 3-19-14! 

Egg, sugar alcohols Intolerant 5-2014

Dairy removed again 10-2014 due to ongoing diarrhea symptoms

Diagnosed with Microscopic Colitis after colonoscopy 12-1-14

 

Celiac.com - Celiac Disease Board Moderator


#21 GFBea

 
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Posted 18 October 2013 - 04:44 AM

Hi Jamie - I wondered if you had any update on how this is going for you? And are you using your diet/exercise around the gluten challenge to try to offset some of the negative reaction?

 

I have been asked to eat gluten by my doctor for a few weeks so that she can test me for celiac. I've had five years without eating any gluten apart from the odd accident. 

 

I've always reacted when I have eaten it by accident, but the effects haven't lasted long (between 2 hours and 24). If it happens, I drink a lot of water and keep meals light until my stomach feels normal again. 

 

But before I cut it out five years ago the symptoms were horrible. Skin rash on my face, major water retention, fogginess, major stomach issues, tiredness. I don't know if I can go back there. Then again the cumulative effect might not happen within weeks. 

 

Superficially, I am most worried about gaining weight. When I ate gluten I was literally always hungry. 

 

Trying to decide whether it's worth the diagnosis. (I should add that I am having other stomach problems at the moment so the doctor recommends this as one of several tests; getting my celiac status is part of that)


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#22 moosemalibu

 
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Posted 18 October 2013 - 09:07 AM

Hi Jamie - I wondered if you had any update on how this is going for you? And are you using your diet/exercise around the gluten challenge to try to offset some of the negative reaction?

 

I have been asked to eat gluten by my doctor for a few weeks so that she can test me for celiac. I've had five years without eating any gluten apart from the odd accident. 

 

I've always reacted when I have eaten it by accident, but the effects haven't lasted long (between 2 hours and 24). If it happens, I drink a lot of water and keep meals light until my stomach feels normal again. 

 

But before I cut it out five years ago the symptoms were horrible. Skin rash on my face, major water retention, fogginess, major stomach issues, tiredness. I don't know if I can go back there. Then again the cumulative effect might not happen within weeks. 

 

Superficially, I am most worried about gaining weight. When I ate gluten I was literally always hungry. 

 

Trying to decide whether it's worth the diagnosis. (I should add that I am having other stomach problems at the moment so the doctor recommends this as one of several tests; getting my celiac status is part of that)

 

My gluten challenge has been a great learning experience because I am obviously a newly "almost diagnosed" Celiac that was gluten free for over a month. Now that I reintroduced gluten back I have had a multitude of symptoms:

lethargy, insomnia, brain fog, diarrhea, mood swings/depression, bloat/water retention (I'm talking almost 10 lbs here - my weight fluctuated from 144 to 158 lbs)

 

The first week I went all out eating whatever I wanted. I enjoyed restaurants I hadn't eaten at since going gluten free and went back to eating dairy too (mostly just ice cream but some cheese). I lost all energy to go to the gym and lack of interest too. I am most upset by the change in my gym routine. I go about 2x/week now. It's all I can get energy for. Yesterday I ate 2 slices of bread and the rest of the day I was gluten free. I weighed 151.5 lbs this morning. That shows me how much gluten affects my weight and water retention.

 

Do I think it is worth it? Yes. It reminded me of all my horrible symptoms and why it is so important for me to eat gluten free. I am miserable - yes. But it is a great way to give myself the aversion to gluten that I need. I have absolutely no desire to eat gluten again. I'm counting down the days til I can stop (7 days). It is a personal choice to go for a biopsy. I don't blame anyone for not wanting to do it to themselves. But I personally am glad that I did it so I get a full understanding of my symptoms. It will make me more aware of accidental glutenings in the future as well (I can recognize the symptoms more easily).

 

Hope that helps. Good luck with whatever you decide.


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Jamie

"We can't help everyone, but everyone can help someone." Ronald Reagan

 

Diagnosed Celiac via blood test 8-22-13

Dairy & gluten free in 8-22-13 then did gluten challenge in October

Endoscopy/Biopsy Oct-26-13 positive for Celiac

HLA-DQ2 positive

Vitamin D insufficiency confirmed 12-6-13

Dairy Added back in successfully 3-1-14

Normal Antibody Levels 3-19-14! 

Egg, sugar alcohols Intolerant 5-2014

Dairy removed again 10-2014 due to ongoing diarrhea symptoms

Diagnosed with Microscopic Colitis after colonoscopy 12-1-14

 

Celiac.com - Celiac Disease Board Moderator


#23 GFBea

 
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Posted 20 October 2013 - 06:45 AM

just wanted to say thanks

I've decided to go ahead ith the gluten challenge for as long as I can bear it because if i have an autoimmune disease id like the opportunity to be diagnosed. so far 2 days and my symptoms are in full swing but manageable. Im eating less to counteract the effect on my digestion.
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#24 moosemalibu

 
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Posted 20 October 2013 - 10:50 AM

Good luck GFBea! I know it's not fun to go through the challenge but having a definitive answer is worth it.


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Jamie

"We can't help everyone, but everyone can help someone." Ronald Reagan

 

Diagnosed Celiac via blood test 8-22-13

Dairy & gluten free in 8-22-13 then did gluten challenge in October

Endoscopy/Biopsy Oct-26-13 positive for Celiac

HLA-DQ2 positive

Vitamin D insufficiency confirmed 12-6-13

Dairy Added back in successfully 3-1-14

Normal Antibody Levels 3-19-14! 

Egg, sugar alcohols Intolerant 5-2014

Dairy removed again 10-2014 due to ongoing diarrhea symptoms

Diagnosed with Microscopic Colitis after colonoscopy 12-1-14

 

Celiac.com - Celiac Disease Board Moderator


#25 GFBea

 
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Posted 21 October 2013 - 05:53 AM

The worst is my eyes/forehead feeling really swollen and itchy - a sign that the skin rash that first alerted me to the problem could reappear. I also feel like I've swollen to twice the size. And I am so hungry! 


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#26 moosemalibu

 
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Posted 25 October 2013 - 02:15 PM

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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Jamie

"We can't help everyone, but everyone can help someone." Ronald Reagan

 

Diagnosed Celiac via blood test 8-22-13

Dairy & gluten free in 8-22-13 then did gluten challenge in October

Endoscopy/Biopsy Oct-26-13 positive for Celiac

HLA-DQ2 positive

Vitamin D insufficiency confirmed 12-6-13

Dairy Added back in successfully 3-1-14

Normal Antibody Levels 3-19-14! 

Egg, sugar alcohols Intolerant 5-2014

Dairy removed again 10-2014 due to ongoing diarrhea symptoms

Diagnosed with Microscopic Colitis after colonoscopy 12-1-14

 

Celiac.com - Celiac Disease Board Moderator


#27 BelleVie

 
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Posted 28 October 2013 - 03:03 AM

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. 


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#28 moosemalibu

 
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Posted 28 October 2013 - 09:55 AM

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.


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Jamie

"We can't help everyone, but everyone can help someone." Ronald Reagan

 

Diagnosed Celiac via blood test 8-22-13

Dairy & gluten free in 8-22-13 then did gluten challenge in October

Endoscopy/Biopsy Oct-26-13 positive for Celiac

HLA-DQ2 positive

Vitamin D insufficiency confirmed 12-6-13

Dairy Added back in successfully 3-1-14

Normal Antibody Levels 3-19-14! 

Egg, sugar alcohols Intolerant 5-2014

Dairy removed again 10-2014 due to ongoing diarrhea symptoms

Diagnosed with Microscopic Colitis after colonoscopy 12-1-14

 

Celiac.com - Celiac Disease Board Moderator


#29 melissy01

 
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Posted 29 October 2013 - 05:41 AM

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
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#30 GFBea

 
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Posted 29 October 2013 - 06:05 AM

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. 


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