Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Endoscopy And Gluten Full Challenge


moosemalibu

Recommended Posts

moosemalibu Collaborator

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


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



cyclinglady Grand Master

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 Rising Star

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 Collaborator

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 Grand Master

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 Community Regular

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

GF Lover Rising Star

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 :D

 

Colleen


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



moosemalibu Collaborator

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 :D

 

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 Rising Star

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 Collaborator

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 Collaborator

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 Community Regular

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

Missbean Newbie

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 Rising Star

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

moosemalibu Collaborator

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 Collaborator

cdmJEcHldqWhKVZHvGYBNrLTxfURsUvUFTxN-610

 

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 Newbie

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

moosemalibu Collaborator

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 Newbie

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 Collaborator

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 Newbie

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 Collaborator

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 Newbie

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 Collaborator

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

GFBea Newbie

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! 

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,557
    • Most Online (within 30 mins)
      7,748

    kghorne3
    Newest Member
    kghorne3
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.