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.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    2. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    4. 0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

    5. - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,328
    • Most Online (within 30 mins)
      7,748

    AndiSchweb
    Newest Member
    AndiSchweb
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
×
×
  • 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.