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Gluten Challenge horrific pain 3 days in

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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

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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.

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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. 

 

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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!  

Edited by cyclinglady

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 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.

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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!  

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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

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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!

 

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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.

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