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

Gluten Challenge horrific pain 3 days in

french

Recommended Posts

french Newbie
french
Posted

Hi to all, looking for advice/tips on how to get through this challenge. I have had graves disease antibodies and more recently hashi antibodies for 30 years had surgery and RAI last year. I became gluten free by accident 3 years ago when I embarked on a keto diet for weight loss and noticed my bloating,IBS, brain fog, aching muscles/joints,constipation all if which I blamed on my graves disappeared. I felt amazing. After RAI last jan I started having issues with my meds, I changed to a paleo diet but still having issues. Long story short my new endo said he suspects celiac and my meds contain gluten but said he needs blood tests to confirm. He asked me to eat gluten until my test in 6 weeks time... I have eaten gluten in the form of vital wheat gluten in smoothies and some shredded wheat but today only day three the pain is unbearable. I have the worse IBS of my life I literally can not get out of bed form the pain in my behind. I am also super bloated and have stomach cramps, the worst migraine . Is this normal on a gluten challenge? please if anyone has any tips or advice I would love to hear it as right now I am thinking I can't do this for another day let alone 6 weeks ...... tia

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

Have you called your doctor?  If not you should. I also had a severe reaction to the gluten challenge so I know how much pain you are in as do many others here.  You can decrease the amount of gluten you are taking in your system although that may not help. Just the shredded wheat, a couple biscuits or a couple slices of bread should be enough. Some find it helpful to take their daily dose of 'poison' at night. That didn't help me though.  Your doctor may be able to give you some medication to get through this horrible time. Some folks just are not able to complete a challenge. There is a chance since your meds are not gluten free that you might show at least a low positive on blood tests without the challenge. Has you doctor run any celiac panel tests yet? Also the challenge time for the endo is shorter is it possible they may be able to do that first? If that is positive that result combined with your reaction to the challenge may be enough for the doctor to be comfortable diagnosing you. I am so sorry you are having to go through this and I hope you get some relief soon.

french Newbie
french
Posted
  • Author

Thank you so much for the reply . I have not called the doctor but will try to ring his nurse about it. my mum also just said maybe I went in to hard to fast so I am going to try and slow down like you suggested. I now have some buscopan so am trying them to see if it helps. The doctor has done no tests other than my thyroid ones. when i go back it says on the form that they are just running a celiac disease antibody screen,serum plus vit D vit 12 vit 6,ferritin, iron and transferrin assay and the usual thyroid tests for t3 t4 and tsh. 

 

cyclinglady Grand Master
cyclinglady
Posted
11 hours ago, french said:

Hi to all, looking for advice/tips on how to get through this challenge. I have had graves disease antibodies and more recently hashi antibodies for 30 years had surgery and RAI last year. I became gluten free by accident 3 years ago when I embarked on a keto diet for weight loss and noticed my bloating,IBS, brain fog, aching muscles/joints,constipation all if which I blamed on my graves disappeared. I felt amazing. After RAI last jan I started having issues with my meds, I changed to a paleo diet but still having issues. Long story short my new endo said he suspects celiac and my meds contain gluten but said he needs blood tests to confirm. He asked me to eat gluten until my test in 6 weeks time... I have eaten gluten in the form of vital wheat gluten in smoothies and some shredded wheat but today only day three the pain is unbearable. I have the worse IBS of my life I literally can not get out of bed form the pain in my behind. I am also super bloated and have stomach cramps, the worst migraine . Is this normal on a gluten challenge? please if anyone has any tips or advice I would love to hear it as right now I am thinking I can't do this for another day let alone 6 weeks ...... tia

 A challenge should be done under a doctor’s care.  Preferably a Gastroenterologist (GI).   Why?  A gluten challenge can be shortened to two weeks if an endoscopy is ordered.  A GP (primary) can not do this.  I would call your doctor, explain your symptoms and ask for a GI referral ASAP.  Follow-up in writing via postal letter or email.  Start documenting all communication and start a journal to track  symptoms and your diet.   Your reaction alone, might make it easier for your GP to refer you now! 

If you go the full six weeks, make sure the lab order includes all the celiac tests (TTG, EMA, DGP and the control test IgA to check for a deficient in IgA).  Since you have Graves/Hashimoto’s you might not get a positive on the TTG.  I did not and I have Hashimoto’s.  No facts to support this a thyroid link, but I do know that research indicates that the screening TTG is good, but does not catch all celiacs  like me.  If my GI had not ordered the complete panel, my diagnosis would not have been caught.  If you are going through this gluten challenge, try to do everything possible to get a correct diagnosis.  

I wish you well!  

french Newbie
french
Posted
  • Author

 I just got back from the gastro and he said no way should I have been told to introduce the gluten and not given proper instructions. He said regardless of if I have celiac or not the evidence in obvious that i have a definite intolerance. He told me not have anything else until all the pain has completely gone. Then to have a tiny tiny amount deffo no where near 4 slices of bread and see if i can tolerate it. He has given me anti spasmodics and something for the gas. He said he thinks I will have to do it this way and that he does not think I will get an accurate result in less than 3 months doing it this way! He said from a medical point of view it is necessary to find out if I have celiac but either way positive or not I need to be on a complete 100 percent gluten free diet. He said once I have seen the endo again to also go back and see him and he will do all the tests later on down the line as 6 weeks in his opinion will not be enough time after being gluten free for 3 years. He also said with a positive result a biopsy will also be needed. He did an ultra sound whilst i was in his office and said everything looked ok inside.

cyclinglady Grand Master
cyclinglady
Posted

I am glad that you found a GI who knows what he doing!  It is a shame that GP/PCPs or doctor’s in specialities do not take the time to read up on Dr. Google.   There really is no excuse.  

Keep us posted.  It will help someone else who has struggled like you!  

french Newbie
french
Posted
  • Author

Hi I had a gram of vital wheat gluten yesterday and had mild tummy pain ever since and ibs pain last night. it has been a pretty uncomfortable 24 hrs but it has been kinda bearable. not sure how it will be, doing that every day but compared to the first time I tried it better. It is 5.20am and I have been about an hour up with tummy discomfort :(  I will definitely, keep you posted. I think I am going to need this  site a lot.  Thank you so much for the advice guys x

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

Celiac.com Sponsor (A8-M):


Jmg Mentor
Jmg
Posted
10 hours ago, french said:

Hi I had a gram of vital wheat gluten yesterday and had mild tummy pain ever since and ibs pain last night. it has been a pretty uncomfortable 24 hrs but it has been kinda bearable. not sure how it will be, doing that every day but compared to the first time I tried it better. It is 5.20am and I have been about an hour up with tummy discomfort :(  I will definitely, keep you posted. I think I am going to need this  site a lot.  Thank you so much for the advice guys x

I found keeping a food journal helped during my challenge. Just noting what I ate, when, and how I felt. I used this forum when I noticed a change so I could get some reassurance that others had experienced a similar response. In my case my endoscopy failed to reveal celiac so the diary became doubly valuable, although I didn't get a celiac diagnosis I had good evidence for my body's response to gluten free diet and the reintroduction of gluten so based on that my Doctor recommended I remove it from my diet for life, which by then I was more than happy to do!

This is a great site with lots of knowledgeable and helpful people. I'm sure you'll get all the support you need here. Best of luck!

 

ravenwoodglass Mentor
ravenwoodglass
Posted
12 hours ago, french said:

Hi I had a gram of vital wheat gluten yesterday and had mild tummy pain ever since and ibs pain last night. it has been a pretty uncomfortable 24 hrs but it has been kinda bearable. not sure how it will be, doing that every day but compared to the first time I tried it better. It is 5.20am and I have been about an hour up with tummy discomfort :(  I will definitely, keep you posted. I think I am going to need this  site a lot.  Thank you so much for the advice guys x

If your tummy woke you up and you are not normally up at that hour be sure to let your doctor know.  That is a symptom of celiac.  IBS does not wake someone from sleep according to my GI doctor.

Archived

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

Go to topic listing

  • 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
      - 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.

      @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...
    2. Jane02
      - 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.

      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...
    3. knitty kitty
      - 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.

      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...
    4. Scott Adams
      0

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

      until
      Hello! Join me and treat yourself to a four-day, three-night restorative gluten-free retreat in a peaceful, private coastal retreat setting near Penobscot Bay in Maine. Dates: April 10-13, 2026 Enjoy engaging classes...
    5. Scott Adams
      - 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.

      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.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,329
    • Most Online (within 30 mins)
      7,748
    klkarius
    Newest Member
    klkarius
    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
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

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

      By Jane02 · Posted

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

      By knitty kitty · Posted

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

      By Scott Adams · Posted

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

      By trents · Posted

      Contact them.
×
×
  • 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.