Has anyone done a doctor ordered gluten challenge?

Posted by dntsass01 @dntsass01, Thu, Mar 7 11:24am

Good morning. A little back story first. I was diagnosed with Crohn's and Celiac on the same day 5 years ago. I had had all of the diarrhea, wt loss symptoms for about a year. I admit it took me almost a year to come to grips with being totally gluten free, but I did it. I also quit smoking at the same time. 3 years ago today actually, I was hospitalized with extremely elevated liver enzymes, right side pain (which I still have). Biopsy's of my liver revealed some kind of hepatitis which they at first thought was due to the Remicade I was on for the Crohn's. I was transferred per ambulance to the Mayo Clinic in Rochester, MN because I was in liver failure and it looked as though I was going to need a transplant. It was determined that I had Autoimmune Hepatitis and slowly got better, but I am still on anti-rejection meds and prednisone. I was also diagnosed with Fibromyalgia. Any way, long story longer, here I am. Most days I feel like crap and never really know what is causing it. I feel that I have done a pretty good job of being gluten free, but we do have regular bread and such in our home. Twice in the last year my awesome doctors at Mayo have asked me if I'm sure I have Celiac because my endoscopies look too good. Since I have been gf for so long my Dr. is having me do a gluten challenge, where I eat 2-10 grams of gluten per day for 6 weeks at which time I will have blood work and an endoscopy. I've been eating gluten for over a week now (which is kind of fun, but also feels wrong) and the only difference I can tell is that I am constipated, which I have had problems with off and on. I feel more bloated, obviously, and feel even more exhausted than usual, plus a nagging headache.

I apologize for the long story. Has anyone had to do a gluten challenge, and what has been your experience?
Thank you

@dntsas01 Hi there. It can be so frustrating trying to figure out health issues, can't it? My response won't be helpful to you, but I wanted you to know that someone is here reading your question. I am sure that at some point, someone with experience in what you are dealing with will jump in this conversation. I was set up for the gluten test but the dr forgot to tell me that I needed to eat gluten prior to the test; so it wasn't accurate.(I had been gluten free for almost 10 yrs.) It did show low spectrum celiacs. It probably would have showed higher results had I actually eaten gluten. I went gluten free many years ago because I noticed that every time I ate it, I struggled to breathe. My lungs would fill up with phlegm and cause me to choke within an hour of eating anything with gluten in it. I wish you luck on your testing and I hope you can get to feeling better soon.

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@windwalker

@dntsas01 Hi there. It can be so frustrating trying to figure out health issues, can't it? My response won't be helpful to you, but I wanted you to know that someone is here reading your question. I am sure that at some point, someone with experience in what you are dealing with will jump in this conversation. I was set up for the gluten test but the dr forgot to tell me that I needed to eat gluten prior to the test; so it wasn't accurate.(I had been gluten free for almost 10 yrs.) It did show low spectrum celiacs. It probably would have showed higher results had I actually eaten gluten. I went gluten free many years ago because I noticed that every time I ate it, I struggled to breathe. My lungs would fill up with phlegm and cause me to choke within an hour of eating anything with gluten in it. I wish you luck on your testing and I hope you can get to feeling better soon.

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@windwalker I had no idea that congestion like that could be due to gluten. I have recently developed either lactose intolerance or IBD, and now I wonder if I have gluten intolerance because I have had a lot of phlegm constantly. I was just commenting to my husband about that today. What other effects do you have from gluten intolerance?
JK

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@contentandwell

@windwalker I had no idea that congestion like that could be due to gluten. I have recently developed either lactose intolerance or IBD, and now I wonder if I have gluten intolerance because I have had a lot of phlegm constantly. I was just commenting to my husband about that today. What other effects do you have from gluten intolerance?
JK

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@contentandwell I used to have a lot of brain fog as well. Gluten is not the only culprit that triggers the production of phlegm; sugar does it as well (for me). I had a friend with full blown Celiacs and he had a book about it. At the end of the book there was a list of all of the disorders and illnesses that Gluten sensitivity and Celiacs can bring on. The list contained pretty much every disease out there, In other words; a broad spectrum. I noticed as a small child that if I ate cake, cookies, pancakes, pie, etc., then I couldn't breathe well afterwards. So, I instinctively just quit eating those things. I was constantly made fun of by friends and family because I declined eating my own birthday cake every year. My bags of Halloween candy would go un-eaten, etc. I didn't learn about it being a real thing until I was an adult. From what I have read, it may not be the gluten in the flour that makes people ill, but rather the Round-up pesticide that is used to force kill the wheat fast to get it into the dryer for processing.

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After a serious downfall in the GI area and worsening health, (all probably due to the antibiotic the dentist had me take – I'll NEVER take clyndamicin again) I saw a GI doc – who wanted me back on gluten (I'd been gluten free for close to a year by then – on my own) to test for celiac. It was fun eating things I hadn't been able to eat prior to that. My test (a full endoscopy and colonoscopy with biopsies) showed no celiac, but the biopsies did find microscopic lymphocytic colitis so I was treated with budesonide for about three weeks, and then another 5 weeks tapering off the steroid. Since I was still experiencing difficulties, I had a breath test for SIBO in January and it came back positive. I'd been eating low or no FODMAPS on my own, again, based on my own research and found that helped me enourmously. The SIBO treatment that was recommended was another antibiotic, but after my last experience, I was reluctant – plus the red tape of getting it approved created almost a 6 week delay – I research non pharmaceutical treatments for SIBO and found the Amy Myers MD program. I've been following that for two weeks now, and I can tell my body is doing what it should – getting rid of the unwanted bacteria in places it doesn't belong. There are some uncomfortable (aches and pains and headaches mostly – no diarrhea which was important to me, since I've already lost a lot of weight ) symptoms from the bacterial "die-off" but over all, I'm hopeful that this treatment is going to work and I can avoid the rounds of antibiotic. The other incentive was that this antibiotic treatment apparently often needs to be repeated every 6 to 9 months, and with the cost factor – I figured I had nothing to lose by trying this other program. Just so you know also, I'd figured out I was significantly nutritionally deprived WAY back, so have been taking some very comprehensive vitamin supplements for about 6 months prior to starting the SIBO program. I'm really starting to feel better, even if my energy level is not totally back, I start some general strength and conditioning PT next month, and my husband says he thinks I'm feeling better – a little better each day. So there is hope at the end of the tunnel – I just wanted to share the rest of the outcome of my going back on the gluten diet so the doctor could test for celiac. Good luck!

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@frozsquash

After a serious downfall in the GI area and worsening health, (all probably due to the antibiotic the dentist had me take – I'll NEVER take clyndamicin again) I saw a GI doc – who wanted me back on gluten (I'd been gluten free for close to a year by then – on my own) to test for celiac. It was fun eating things I hadn't been able to eat prior to that. My test (a full endoscopy and colonoscopy with biopsies) showed no celiac, but the biopsies did find microscopic lymphocytic colitis so I was treated with budesonide for about three weeks, and then another 5 weeks tapering off the steroid. Since I was still experiencing difficulties, I had a breath test for SIBO in January and it came back positive. I'd been eating low or no FODMAPS on my own, again, based on my own research and found that helped me enourmously. The SIBO treatment that was recommended was another antibiotic, but after my last experience, I was reluctant – plus the red tape of getting it approved created almost a 6 week delay – I research non pharmaceutical treatments for SIBO and found the Amy Myers MD program. I've been following that for two weeks now, and I can tell my body is doing what it should – getting rid of the unwanted bacteria in places it doesn't belong. There are some uncomfortable (aches and pains and headaches mostly – no diarrhea which was important to me, since I've already lost a lot of weight ) symptoms from the bacterial "die-off" but over all, I'm hopeful that this treatment is going to work and I can avoid the rounds of antibiotic. The other incentive was that this antibiotic treatment apparently often needs to be repeated every 6 to 9 months, and with the cost factor – I figured I had nothing to lose by trying this other program. Just so you know also, I'd figured out I was significantly nutritionally deprived WAY back, so have been taking some very comprehensive vitamin supplements for about 6 months prior to starting the SIBO program. I'm really starting to feel better, even if my energy level is not totally back, I start some general strength and conditioning PT next month, and my husband says he thinks I'm feeling better – a little better each day. So there is hope at the end of the tunnel – I just wanted to share the rest of the outcome of my going back on the gluten diet so the doctor could test for celiac. Good luck!

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@frozsquash Thank you for replying. I'm glad to hear that you are feeling better! I will be doing some research on the SIBO diet you mentioned, but will wait to try anything new until I get these results. I've tried the FODMAP diet per my former GI doc without much help. Dairy doesn't seem to bother me either. In the past I have had problems with c-diff from antibiotics and actually had a fecal transplant to get rid of it. I'll let you google that one. 😄 It did work though. Please continue to let us know how you are doing.

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