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Your experiences with IBS

Digestive Health | Last Active: Aug 18, 2020 | Replies (67)

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I'm fairly new to this whole ball of wax, so it's likely what I say here won't help much, or could even be incorrect. But I have written elsewhere on these forums about the benefits of functional medicine (I thiiiink if you click my username, it'll take you to those posts). And after about 9 months on all kinds of probiotics and enzymes (including the world's strictest GI elimination diet and $400+/mo in supplements), I read somewhere that probiotics and enzymes can actually worsen a 'leaky gut' if it isn't healed enough to handle them. So I stopped taking them about a month ago, and started seeing a(nother) functional MD who confirmed that they can worsen things. Some enzymes can have egg whites in them, which can exacerbate problems for some folks with egg (esp white) sensitivity. @jackiem95 mentions a VSL3 probiotic, so she likely knows more than I do, and I'm adding that to my list to investigate and ask my functional MD about. He did some very fancy bloodwork to test for intestinal permeability at a higher level than what others have tested, awaiting results. (Jury's still out on whether or not he's going to help heal me, I'll give his name if so!) A naturopath requested bloodwork to check IA2 levels, which came back slightly elevated, but she didn't suggested any diet changes for those. Functional MD was the first to suggest that it's possible I'm having IA2 cross-reactivity (meaning, even on the world's strictest GI elimination diet, I'm allowed to eat things that would be cross-reactive with antibodies and keep making me sick). Also, in case this helps anyone else out there, I haven't had gluten in 10yrs, so my IgA keeps coming back 'normal' (seronegative) (Mayo said it was 'normal' and dismissed me ...), but a gastroenterology NP training in functional medicine recently asked why no one has tested for the Celiac gene -- and I'll get that test tomorrow. I'm off gluten, so that isn't a huge piece of the puzzle, but there's this molecular mimicry thing I'm learning about, where your body attacks what it THINKS is gluten, exacerbating food immune reactivities and autoimmunity.

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Replies to "I'm fairly new to this whole ball of wax, so it's likely what I say here..."

Many thanks for your reply! I'm very interested to learn more about leaky gut and the potential negative effects of enzymes and probiotics, perhaps I currently fall more into that category. My third probiotic concoction arrived today but I am going to hold off on trying it until I speak with my D.O. who was the one who recommended it (Acidolphilus/bifidus).The first one was Align, suggested by my GI dr and it was a nightmare and the second one I tried to figure out for myself in the health aisle at Whole Foods. It did nothing but make my stomach hurt. I will definitely look back into your earlier posts regarding functional medicine. I've made a long list of things to ask my D.O. about, specifically the different blood work that can run and what he thinks about these other topics. I was tested for Celiac but was already a month into no gluten and so it didn't conclusively show any negative reaction. It seems to of be a guessing game, even by the professionals when it comes to figuring out this illness and how to go about treating it with solid, positive results. I'm learning though replies here that one size does not fit all for the people who suffer like we do. I guess if it did the course of treatment would be standard issue and we would get the help and relief we are so desperately in search of. I hope that things begin to improve for you and the answers for proper treatment come your way soon! Best wishes!

Just curious about why you would want to investigate VSL3 probiotic with your functional MD after he has apparently told you that probiotics can make your condition worse. I am having trouble understanding “cross reactivity, “ molecular mimicry” etc. Way too complicated for me. I need to simplify my life with IBS not make it more complex to navigate. To each his own.