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harmonyln (@harmonyln)

Your experiences with IBS

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

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@jackiem95

I can totally empathize with your situation. I also have IBS and looking back, I believe that it began more than one year ago although not diagnosed until later on. No real idea where it came from except possibly after many years of living in Mexico off and on, having numerous intestinal problems there and taking many antibiotics. To further complicate my digestive situation, I also have a serious GERD condition. I have been on the low Fodmap diet for about six months and have lost 25+ lbs.—some of which I needed to lose. But now I am trying to stabilize or even gain. Sometimes even “allowed” foods cause symptoms. I have not had much success in reintroducing forbidden foods—all that I have tried have caused problems. My understanding is that IBS is a permanent condition and I am resigned to, as you said, “the new normal.” I will probably have to have some type of surgery for my GERD since none of the medications are controlling those symptoms. After that at least I hope to be able to add some foods from the Fodmap “NO” list back into my diet—e.g tomatoes and maybe real coffee. Have you considered seeing a dietician?
I saw one who was actually quite helpful at least within the constraints of the restrictive low Fodmap diet. I am not inclined to try any of the meds like Viberzi after my GI went over possible side effects. He has recommended a probiotic called VSL3 which has been tested for IBS. Just started a week ago but so far so good with the bathroom activity—almost normal and no emergencies or constipation. Ask your doctor before you take it. Very expensive. I had heard that Align was also good for IBS and once tried that on my own. It seemed to help at first, but then aggravated my GERD so I quit taking it.
I have heard if some people having success with integrative or functional medicine doctors. You mentioned a DO and maybe that’s is what he or she is trained in. I am considering seeing an MD in integrative medicine later on for IBS but not until after I have the GERD situation under control. I have found that most GI docs are not real good at coordinating care for multiple conditions. Anyway, you still need a GI doctor so if you don’t trust the one you have, research the options and find someone else. I should have done that a year ago! Anyway, good luck!

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Replies to "I can totally empathize with your situation. I also have IBS and looking back, I believe..."

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.

Thank you very much for your reply! First off, let me say that I'm sorry to hear of your distress, it's truly awful to be so sick. I started to strictly follow the FODMAP diet in mid February after I finally accepted that things weren't going to improve the way that they were going. I've lost 19 lbs in the span of 2 months, some of which I could stand to lose anyway but certainly not that fast and for the reason behind it. I just made the horrible mistake of eating Whole Rolled Oats after reading that small amounts of oatmeal are allowed on the FODMAP plan. Major mistake on my part, it was supposed to be Quick Oats. I've been very sick for the past 3 days and you couldn't pay me to have another bite of oatmeal regardless of the type. The types foods that I know don't make me sick in one way or another seems to be shrinking and eating has become a real challenge and something that is actually scary to me. I've asked for a recommendation for a dietician and nothing ever came of it, I definitely want to see one and will press this issue. I am seeing my D.O. tomorrow and will ask about the probiotic that you mentioned. My G.I. dr had recommended Align to me and it made me feel really nauseated but I hung in there for a week or so. Finally I read the fine print on the box and it said that it contained milk! I knew in an instant that that was what was making me so sick, immediately stopped it and improved right away. For the life of me, I can't understand why I G.I. dr who is treating someone for IBS would suggest anything with milk in it, regardless of the amount- especially since she was the one who suggested the FODMAP diet to me in the first place. I'll do some research on how an integrative dr can assist me, I probably should check first to see if my insurance covers this. Thank you again for sharing your story, I'm grateful for your input since you understand know what this feels like and what an impact it has on all of us who suffer. All my best to you!