Endoscopy And Gluten Full Challenge

[moosemalibu]

Well - I finally had my specialist consult today. My GI doc is very knowledgable and for that I am grateful. He wants me to do a gluten challenge for 3 weeks prior to my endoscopy. Having been gluten-free for over a month now I am a bit scared to go back to eating gluten again. But I will do what I need to do to get a proper diagnosis and to see what damage has been done. He also ordered the genetic test for me.

 

Any tips on how and when to time the eating of the 2 slices of bread that he wants me to eat daily? I still have a job to do and my symptoms are mostly diarrhea, cramps and bloating. I wonder if eating at evening versus morning will be better.... I guess that is trial and error at this point..

 

Jamie

[cyclinglady]

I can't give much advice other than if you're going to have to eat bread/gluten buy the best and savor it!  

[LauraTX]

I ditto this, enjoy it while you can.  Maybe the first few days try consuming the bread at different times and see which feels the least bad.  At least you will be getting some solid answers!

[moosemalibu]

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.

[cyclinglady]

Yep!  For seven weeks I indulged in gluten.  Bought my favs at the grocery store, went out to eat and consumed a loaf of sourdough bread per day (I kid you not!).  At the end of seven weeks, I was ready to let go of gluten.  

[w8in4dave]

Good luck!! Yep I'd be eating out at all your fav restaurants also  

[GF Lover]

When you previously ate gluten, did you react quickly or delayed reaction.  Try to time the digestive problems when your not at work.  Otherwise, please have some powdered sugar donuts for me

 

Colleen

[moosemalibu]

When you previously ate gluten, did you react quickly or delayed reaction.  Try to time the digestive problems when your not at work.  Otherwise, please have some powdered sugar donuts for me

 

Colleen

It was a delayed reaction by about 24-36 hours. I ate my bread at 10pm last night and I have not had any D yet. I've only had slight nausea and bloating. No rumblings of the gut yet or diarrhea. In fact - I had a semi-normal stool this morning. I have been eating really really clean (meaning whole foods only- brown rice, lean meat, veggies) the past few days and I think that my GI was finally becoming happy with that. I am going to be sad when the gluten finally "hits" the system.

[GF Lover]

Jamie, 

 

With delayed symptoms, just do the best you can.  I don't envy you having to do this.  Get plenty of rest while on the challenge, your bound to be fatigued.

 

Good luck with your challenge.

 

Colleen

[moosemalibu]

Jamie, 

 

With delayed symptoms, just do the best you can.  I don't envy you having to do this.  Get plenty of rest while on the challenge, your bound to be fatigued.

 

Good luck with your challenge.

 

Colleen

Thanks Colleen! I am starting to get that rumbling gut and definitely getting fatigued. I forgot how exhausted I felt before. I had hoped to get into the gym tonight but I may not make it. Also have been feeling like I am starving even though I've eaten a good amount of food today (not the bread yet though)

[moosemalibu]

I cannot believe all the little symptoms I had already forgotten about that have popped up. Itchy scalp, insomnia, brain fog, lethargy all back. I had my cramps/diarrhea this morning about 7 am - finally hit me from Monday at 10pm ingestion of the bread. And so it begins...

[w8in4dave]

Ohhh so sorry about all your symptoms!! Hope you can still hang!! Good luck and huggzz!

[Missbean]

So two slices of bread a day three weeks before endoscopy. I came off gluten about a month ago per my primary care. She recommended me to GI who set up endo in December. The nurse practitioners don't seem too confident when they give me guidelines on when to start back up on gluten and how much

[LauraTX]

Yep, Missbean, that is correct.  I think the NPs probably rarely get people doing re-gluten challenges, they probably forget what to tell us!     

[moosemalibu]

So two slices of bread a day three weeks before endoscopy. I came off gluten about a month ago per my primary care. She recommended me to GI who set up endo in December. The nurse practitioners don't seem too confident when they give me guidelines on when to start back up on gluten and how much

 

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.

[moosemalibu]

 

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.

[Missbean]

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

[moosemalibu]

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.

[Missbean]

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

[moosemalibu]

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.

[GFBea]

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)

[moosemalibu]

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.

[GFBea]

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.

[moosemalibu]

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

[GFBea]

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!