gluten challenge /tests/ discomfort

[trachelospermum]

I have been gluten-free fairly consistently for 30+ years since a diagnosis of ibs at group health and a food allergy elimination diet through basttyr university around the same time. My consistency the first decade was good and life changing and symptoms mostly managed with occasional severe flares. Second decade I was more loose and sick more often. Third decade I have been very strict zero gluten, caution at restaurants found myself increasingly sensitive to accidental cross contamination.  I had several really bad restaurant poisoning the last few years that made me sick for months. I have treated myself as celiac in more recent years due to the increase in severity of symptoms etc. Because of my ibs and some really severe episodes I started getting sygmoidoscopoes and colonoscopy very young. I looked through all my medical records and only once did a Dr do a celiac blood test- an IGA- but I was already gluten free and not told to eat gluten prior.  Anyway my current gastroenterologist at kaiser recommended I do an upper in addition to a lower scope this time with assorted biopsies throughout. I agreed.  I have been having strange malabsorption issues- low b12, low d etc and also long unexplained bleeding/ diarrhea issues. So here's the struggle. She wants me to do a 4-6week gluten challenge prior. It has never seemed worth it to me because I get so sick and it seems as time goes on I get sicker when exposed. It seems to be gluten and not wheat because once I accidentally bought a gluten-free flour that had wheat in it and when I realized it later I also knew I had NO reaction.  Where if I accidentally get cross contamination or take a bite of bread that was ordered gluten-free (happened last week where I thought I was safe) I am immediately sick- and progressive sicker over days, weeks , months depending how bad the reaction is. So it just never felt worth it before.  This time though I said yes. I am less than a week in. I am experiencing gastric disress, cannot stop belching and farting and feel like I will puke often, increase in my asthma, nausea, diarrhea,  exhausted,  already suffer chronic pain and now it is exacerbated,  Headaches, difficulty sleeping and severe night sweats- like drenching my sheets(new not menopausal- already did that amd came on with the gluten testing, joint pain, ear pressure, mouth pain, itchiness... I mean I am miserable and questioning how I can do this until my may 5th procedure??!!.  I am in a gluten-free group where I shared a bit and they all jumped on me and my Dr that this is insane, barbaric, I should fire my Dr etc. which caused me doubt.  When I looked on this site and read it seems important to do. So my question is are there strategies to feel the best you can, sleep, work and do this for a month?? Are there ways to do it more safely, less uncomfortable? Have you found anything helpful that won't interfere with the tests they need to do. To be clear I am pretty certain it's necessary to do rn due to the fact that they are already doing the procedures for other things (cancer screening etc) but I just want to know if you guys have tips to be less miserable.  Anyway hoping to find some connection/ support etc. 

[trachelospermum]

I forgot to add this entire thing is messing with my anxiety and depression and I'm only a fee days in. What helps you all when doing a gluten challenge? Time of day/ type of foods? Other foods that make it easier? Extra benadryl/ Ibuprofen??!!

[trents]

Welcome to the forum, @trachelospermum!

There is really nothing I know of that will have a material impact on your suffering during this gluten challenge period. But I do question the wisdom of doing a gluten challenge after 30 years of being basically gluten free and at your stage of life. It is well-known that many celiacs find that there reaction to being "glutened" after having been off gluten for a significant period of time becomes much more violent than before diagnosis and going gluten free. When we subject our bodies to some stress or toxin on regular basis over a long period of time our bodies learn how to cope with it to some degree but once we remove it, our bodies forget what they learned.

I think you know enough by now to be certain that you are gluten intolerant, either having celiac disease or NCGS (Non Celiac Gluten Sensitivity) and the only purpose of the current gluten challenge is to distinguish between those two. But at the end of the day, the antidote for both is the same: total abstinence from gluten. The scoping procedures scheduled for May 5th can still be useful in checking for other things such as cancer or colitis or Crohn's and whether or not you are gluten free until then will not affect the value of the scoping for those medical issues.

Having said all that, malabsorption of vitamins and minerals would suggest celiac disease rather than NCGS. I assume you are referring to vitamins and mineral absorption issues as opposed to things like undigested food or oily stools. Have you been checked for vitamin and mineral levels? Are you low on iron stores? Are you experiencing bone demineralization?

Also, what kind of meds are you taking? Are you on NSAIDs, other kinds of anti-inflammatory meds or immunosuppressants? Some medications damage the villous lining of the small bowel like gluten does for celiacs).

Are you still consuming oats and dairy (two foods whose proteins can mimic gluten reactions for many celiacs)?

Edited March 31, 2025 by trents

[trachelospermum]

Ty for your response.  

I am unsure what the exact reason she said for doing the test at this point.  

Maybe because I don't have an official celiac diagnosis? Maybe it was because of the bleeding I've had off and on last couple years? I have other medical things going on rn and am dealing with multiple Dr's and sometimes I get the feeling none are looking at the big Pic. My primary dr sent me to bariatrics due to my weight. I feel strongly that with a person with my chronic pain and gastrointestinal histories that that type of surgery is a terrible idea and has the potential to make other things worse- i.e. I would no longer be able to take nsaids for pain and they talked about something called dumping and nutritional deficiency post surgery which I already have enough problems with on a healthy diet. So I think the gastroenterologist wants clarity and it would infor other departments.... idk. I also see a pain specialist etc. I eat healthy food but I am deficient in b12 and have had iron store issues even though I eat some meat etc. So yes they have been testing my blood a lot lately.  I also had a d deficiency even though I am outdoors a ton- hike, garden and work outdoors.  

I had disordered eating as a young person and dieter off and on for decades and it has really bit me in the ass post menopause and my primary dr has kind of started freaking about my weight gain since a brain injury and auto accident left me less active for a year or so. 

[trachelospermum]

They did not check bone demineralization as far as I know. Would that be obvious in my bloodwork? 

[trents]

Low B12, low iron stores and low D all scream of celiac disease as opposed to NCGS! You would not have those deficiencies with NCGS because NCGS does not damage the villous lining of the small bowel. Of course, some or all of those deficiencies could be due to other medical conditions but the fact that you can't do gluten sure points to celiac disease. I do understand that you rely on the NSAIDs for pain control but they are also known to be hard on the gut and I wonder if it is the cause of the intermittent bleeding you mention. Concerning bariatric surgery for weight control, I have know a number of people who had that done and none of them were happy with it in the long run. It can create a number of other health/nutrition related problems and when you already are starting out with some significant preexisting medical issues I would be skeptical of it.

[trachelospermum]

Yes. I am. 

Ty. 

[trents]

Bone demineralization would not be detectable via bloodwork. It would require a DEXA scan. The body keeps calcium levels pretty constant in the blood and will rob it from the bones if necessary because it is such an important mineral for many metabolic processes.