I’ve had vague mysterious issues with my health since childhood. Fatigue, mood issues, brain fog etc. Doctors have been hopeless, I tested negative on a blood test for celiac, however prior to the test I’d eaten gluten once in the months preceding, no doctor told me I had to have been eating it reguarly prior for the test to be accurate (at least that is my understanding since.) Anyway, in the last 2-3 years I’ve now developed intolerances/sensitivities to EVERYTHING possible – nuts, dairy, soya, sulfites – you name. They cause me SEVERE fatigue, brain fog, nervousness/anxiety, irritability, and so on. If I avoid all of these things and take digestive enymes with every meal, I feel fine.
Numerous blood tests have showed nothing. The only test I’ve done which I did privately which came up with some really obvious issues with the GI-MAP. Bacteria wise, my gut is great. No dysbiosis, no candida, nada. The only 3 things that came back marked as out of range were:Steaocrit: (20% – HIGH. Cut off is under 15%)Secretory IgA: 403 ( Low, 510-2020 ug/g being Normal.)Zonulin: 154.5 (HIGH, normal being under 107ng/g)
Now, as far as I can tell, high zonulin + low secretory IgA could very easily explain why I’ve now developed intolerances to almost anything you can be intolerant too – my gut lining and immunity is impaired, the proteins are passing into my bloodstream when they shouldn’t be and i’m having some sort of immune response, so fine – avoid these until the gut is healed. Since using digestive enzymes with every piece of food I eat, my bowels have improved HUGELY. From a young age I’ve had messy stools, always loose, had to wipe loads (sorry if TMI), never really had clean normal health bowel movements. Enzymes have fixed that. I’m having them check the pancreas at the moment, however other than that I don’t seem to have any obvious symptoms of pancreas issues as far as I can tell. My fecal elastase came back normal (284 – noral being over 200 ug/g).
The doctors have no answer, they’re trying to brush me off – which is pretty typical of the NHS in the UK from my experience – so i’ve effectively had to try and figure this out on my own.
Now what I wonder is, either a) Could it be undiagnosed celiac? (Their testing methodology seems it was pretty flawed) OR a non-celiac gluten sensitivity. I’m confident I can heal my gut lining, I have a fairly sound knowledge of nutrition after years of trial and error and research trying to get to the bottom of this. What I want to know is where this has all stemmed from so I can avoid any repeats.
When I did the GI-MAP, I hadn’t been eating much gluten in the months prior, but certainly wasn’t stricly none.My Anti-Gliadin IgA came back as 66 (range being 0-157 u/L.) Is it normal to have this half way up the range? Does everyone have a somewhat elevaged Anti-Gliadin? Because if not I now wonder if it only fell in a reasonable area because I’d had SOME, but not enough in the period prior to the GI-Map to push it high enough.
What is everyones thoughts on this? I have no qualms with never eating gluten again, but ofcourse if it’s not an issue then it also seems silly to eliminate a food group unnecessarily. But is there even any accurate way to get an answer? Especially if its NCGS?
Could Celiac or NCGS cause enymatic issues that would explain the steattoreah? And the fact that adding in enzymes with each meal has made such a dramatic difference to my bowel movements after 10-15+ years of bad movements?
The only other logical thing I can think is a Pancreatic Insuffiency? But the fecal elastase being normal throws this off I believe? I’m waiting back on my upper abdominal ultrasound results (They looked at pancreas, kidney, liver etc), however I have a bad feeling that’s also going to come up black and they’ll try and close this off again.
Any advice/suggestions appreciated! 🙂 If there are any other numbers from the GI-MAP that are worth me posting, please do let me know. (Also i’ve been tested for SIBO, had a lactulose breath test, results came back perfect – no SIBO.)