Can Gluten Sensitivity Go Away?

[fayedelasflores]

The idea of living gluten-free may seem daunting at first, but especially if you like to cook anyway, it's not bad at all. That said, should you find yourself "tolerant" at some point in the future, keep in mind that gluten-free is actually a very healthy way to eat, even for those who don't have to! Sans-gluten, your body uses your food more efficiently, so many people see a positive change in their metabolism & weight, along with improvement of other health issues, not to mention their overall well-being. But gluten-free or not, good luck!

[basilicious]

All, thanks for your encouragement and advice. I wanted to mention that I called the lab that did my celiac panel, and they confirmed that they completed the more specific IgG anti-deamidated gliadin peptide antibody assay. I think you're right and that my GI misinterpreted it and/or just isn't familiar with the research! However, I received a copy of the letter my neuro sent my GP, and she alluded to positive blood test results...so even though my GI and GP seem a bit confused, my neuro seems on point. I could tell she was different when she criticized Western medicine for its reluctance to diagnose gluten sensitivity and celiac.

Still haven't read the articles provided due to work constraints, but you can be sure I'll be discussing them with my GI and neuro when the time comes. Thanks again for such valuable insight.

[Skylark]

Glad we got that sorted out! Your neuro does seem more on point. It seems like neurologists are really catching on to celiac/gluten intolerance. I have a friend whose neuro suggested her idiopathic neuropathy could be gluten. Sure enough, it was.

I really hope being on a "celiac safe" diet starts to help with your health issues.

[IrishHeart]

I really hope being on a "celiac safe" diet starts to help with your health issues.

Ditto from me!

[phyller]

Thank you for the thoughtful replies. I have gone back and forth on the legitimacy of my negative celiac diagnosis, but my action plan is to get the genetic testing as well as testing for SIBO and hypochlorohydria and go strictly gluten free, as if I had celiac, for 3-6 months. Part of the problem has been that my neurological symptoms resolve almost entirely, and pretty quickly, once I'm off gluten, but I've experienced inconsistent resolution of my digestive symptoms, especially the bloating. It's hard to know if I should chalk it up to broader leaky gut syndrome -- i.e. not gluten-specific -- or if I could actually have undiagnosed celiac and am just experiencing the normal ups and downs of the healing process. I also haven't ruled out other food sensitivities and am going to resume my food journal. I'll be on a GFD for the next few months regardless, but if I don't have the genes, at least I will be less concerned with a false negative on my blood tests and biopsy, and I'll be less concerned about the auto-immune effects of cross-contamination. [Note: I did get the total serum IgA done last week, and I am not deficient (my result was 273 with a normal range being 68-378mg/dL). EMA IgA was also negative, but no range was given. My Vitamin D was astoundingly good at 50, with normal range being 30-89.]

Since I have tested negative for celiac and have no history of it in my family (my mom just got a negative blood test result last week), I'm inclined to accept the "diagnosis" that I am NCGI and then try to reintroduce gluten in a few months. However, if I have the genes, given that so little seems to be understood about NCGI, I will be left wondering if there's hope of its resolving at some point or if I should be just as vigilant about CC because NCGI may be a precursor to celiac after all...I will cross that bridge if and when I find out I have the genes. I will let you all know how my additional testing goes.

Hey, I am totally new at this, and hopefully your symptoms are resolved by this time. It sounds like what is happening to you is what happened to me. When I went off gluten I felt so much better, but my digestive issues weren't all resolved. It turns out I had become intensely lactose intolerant, that was what was causing the bloating and more acute digestive symptoms. Once I cut out lactose everything was good and I felt like a new person. A very hungry, but much healthier new person.

This is pure speculation, I don't have the expertise of others on this board, but I think that the damage to my intestines from gluten sensitivity caused the lactose intolerance. Both coming up at once made it a lot harder to figure out what was happening. I was trying to figure out what foods were associated with my problems, then eliminating things from my diet to try to specifically identify the culprit. I would cut out one and feel a little better, but then the other would still cause me problems and I thought I was wrong. Fortunately, eventually I noticed the difference in the two reactions and realized what was happening. Gluten was more insidious, I could feel it in my gut but it also made me feel bad all over. Lactose was really acute, I felt like I was going explode, but the rest of my body was fine.

[basilicious]

Hey, I am totally new at this, and hopefully your symptoms are resolved by this time. It sounds like what is happening to you is what happened to me. When I went off gluten I felt so much better, but my digestive issues weren't all resolved. It turns out I had become intensely lactose intolerant, that was what was causing the bloating and more acute digestive symptoms. Once I cut out lactose everything was good and I felt like a new person. A very hungry, but much healthier new person.

This is pure speculation, I don't have the expertise of others on this board, but I think that the damage to my intestines from gluten sensitivity caused the lactose intolerance. Both coming up at once made it a lot harder to figure out what was happening. I was trying to figure out what foods were associated with my problems, then eliminating things from my diet to try to specifically identify the culprit. I would cut out one and feel a little better, but then the other would still cause me problems and I thought I was wrong. Fortunately, eventually I noticed the difference in the two reactions and realized what was happening. Gluten was more insidious, I could feel it in my gut but it also made me feel bad all over. Lactose was really acute, I felt like I was going explode, but the rest of my body was fine.

Thanks, Phyller. Your comment is dead on actually. My neurological symptoms have generally dominated, so perhaps I have not been as tuned in to some of the digestive symptoms, or just had not taken them as seriously because the gut somehow felt less important than the brain...so silly in hindsight since they are so clearly interrelated. Anyway, after reading others' comments about lactose intolerance during the healing phase, I stopped having greek yogurt for breakfast every morning, and that has definitely made a positive difference. When I tried reintroducing it, the bloating returned and my energy plummeted. Eggs are on the breakfast menu for the foreseeable future!

I have had this notion that I caught my celiac in its earlier stage, and that the intestinal damage may not be too bad, but honestly, that may just be some lingering denial. I think I've been healing pretty rapidly all things considered, but the lactose intolerance suggests that things were a bit worse than I had hoped...a little disheartening, but I am on the right track now. Thanks again for sharing your experience.

[feelbetter88]

Hi everyone,

I've suffered from severe gluten intolerance and IBS for years and I've been working on getting better for a really long time. Tested negative for celiac but that was after a year totally gluten free. Anyway, after much trial and error I am almost symptom free. I use optibac one week flat probiotic sachets (only brand for me) every other day, follow the fodmap diet (or at least through downloading the app and following the guidelines I now know what foods give me issues). I feel a million times better, almost cured. No bloating, normal patterns, feel like I'm actually absorbing nutrients from my food and weirdly my intolerance to lactose seems to have gone away! Thought I'd share as it's taken a long time to get where I am (through little guidance from doctors as they didn't know how to help), but I feel almost back to how I was before. I think the sachets I mention work because that combine probiotics with prebiotics.