IBS, SIBO, Histamine

[Sunny3]

Hi all, not sure if I am posting in the right community, but I am struggling with IBS, SIBO, histamine intolerance.

I was diagnosed IBS-c over 10 years ago and fought constipation for years. Then, 3 years ago I was diagnosed non celiac gluten sensitive and went gluten free. A couple months later my thyroid slowly started to work better and I am now on no thyroid meds -- which is the good news. The bad news is however, shortly after going gluten free I developed some new symptoms out of nowhere that would come and go for days at a time but steadily worsened - head pressure & pains, hives, tingling in lower legs, flu like, breathlessness, palpitations, supersensitive to meds (thyroid meds, Folate, B12 would intensify my symptoms), just UNWELL. Well finally a very smart doc diagnosed SIBO and histamine intolerance. A low histamine diet is the ONLY thing (and I mean I have tried many things) that has helped with some of these symptoms. So next week I start taking Xifaxan and Neem for SIBO and Quercetin and a couple other supplements for histamine.

Question is has anyone else experienced a connection between going gluten free and histamine intolerance starting. This is been a tough road and I am ready to feel better/normal! Thank you for any feedback I appreciate any suggestions.

[Carlettejaque]

I've had IBS for 40 years. I am intolerant to dairy, yeast, sunflower oil. Dextrose or any tyoe of dextroses makes me extremely Ill for weeks. You know what makes you ill, but have you tried exclusion diets to see if you have other intolerances? You may have a hidden one.

[Sunny3 in reply to Carlettejaque]

Carlettejaque - thanks for the response! I am gluten free and now the low histamine diet has been a big help to make my days tolerable where I can actually enjoy things somewhat. Starting some supplements next week. But your comment strikes me as important because I have wondered now that low histamine has been such a help if there might not be something else I am eating that is working against me. I have not yet tried an exclusion diet but need to. Do you have one to suggest? Part of my problem is I don't have symptoms pop up within an hour of eating - it is usually the next morning I can tell I'm "not right" and I feel horrible - head pressure, fatigue, muscle aches/pains - that will last 2 or 3 days before it works it's way out. So yes I think I could very well be intolerant to something else! At least I am on the right track I feel!

[Carlettejaque in reply to Sunny3]

Yes, its difficult finding out what's adversely affecting you. Mine can be anything between 1 day and 3 days.

Choose a food you suspect and don't eat it for a week. If you really don't know where to start then I would start with eggs, then dairy, then anything with yeast (that includes vinegar and anything fermented). Do dairy for 2 weeks and eggs for 3. If there is no improvement then you have to do each regularly eaten food. I would also recommend no alcohol, fizzy drinks and anything onion/garlic related.

It took me quite some time to figure out mine but it's worth doing.

Let me know how you get on.

[Sunny3 in reply to Carlettejaque]

I have already eliminated all those things! On very strict low histamine and also FODMAP as I have SIBO for sure. Thank you so much for your response - it is comforting to hear someone else say it takes a day or maybe 2 for symptoms to kick in. That makes it really hard to pin down what is causing the problem!

[Carlettejaque in reply to Sunny3]

Okay, so you know some of the things that don't upset you. You just have to keep trying with other foods. I am dextrose and sunflower oil intolerant. Now they were really difficult to discover because they are not a food, they are an addative ingredient. To find out somethjng like that you have to eat fresh cooked food for a couple of days and then introduce something with addatives like biscuits or chocolate or processed meat. I find anything fatty or greasy upsets me a lot. If you can afford it, it might be worth getting an intolerance test done. I had one done with York Tests. I'm not sure how accurate they actually are though.

[Sunny3 in reply to Carlettejaque]

Yes I do need to try just fresh cooked food for a week - I mostly eat fresh cooked now since starting low histamine, but I've had a few things here and there. After wasting almost 3 years thinking this was all thyroid I am now working with a top integrative gastroenterologist out of Los Angeles who is in a league of his own - and he has done a lot of testing including food intolerances - so we know everything I need to work on to balance things out again. Thanks again for your input and good luck to you too!!

[Rossan]

Hi!I'm IBS-C. I had mild IBS for 15+ years which I mainly controlled by having no wheat (but having other gluten-containing food) or caffeine.

Then in spring last year had a flare-up like I've never had before. I started the FODMAP diet and in addition excluded all gluten & all lactose for a time. I'm still low-lactose and gluten-free. All summer I had breathlessness, severe fatigue (just an effort to move limbs at all), pressure headaches, sinus inflammation & a horrible sharp ache that would run from my right temple to my right shoulder (occasionally all down my arm). I'd never had these symptoms before. After a friend suggested hayfever might be a contributing factor - I'd never had hayfever before - I tried anti-histamines & they helped hugely.

Nothing about this is conclusive proof - but I think I'll ask my dietician about histamine next time!

[Sunny3 in reply to Rossan]

Rossen - yes if the antihastime helped I would try the diet! I too would experience a weird pain from behind my right ear down into my right shoulder - as well as other head pains and ongoing relentless head pressure - worse around the back of my neck area. You probably read my post that for over TWO YEARS doctors kept saying "thyroid" until a very smart new doc did the breath test and found SIBO/histamine. So I started eating low histamine and in 3 days the horrible head pressure was all but gone. AMAZING - seriously it was like a miracle. So do try the diet - they say you should give it a try for 3 - 4 weeks and if at least 2 of your symptoms improve then you are histamine intolerant - no real good test for it. The doc did the histamine blood test on me but it was normal - doc said not a good test and not reliable. Good luck!!

[Capri20]

Were your thyroid issues based on blood tests or symptoms? I ask because my daughter has developed secondary hypothyroidism but has ibsc symptoms and I strongly suspect a food intolerance may be the cause. It’s very interesting that you’ve been able to completely stop thyroid meds

[Sunny3 in reply to Capri20]

Based on blood tests.... In 2014 my tsh was 6 and i had TPO antibodies. I had fought IBS-c for years prior to that and looking back over everything I think if I had been gluten free my thyroid would never have gone out. I met w a very prominent endo recently who confirmed it is possible to go in to remission and thyroid start to function again as in my case. A very prominent gastro recently confirmed I am def gluten sensitive w the wheat zoomer test. I agree she could very well be gluten sensitive something to check for sure!

[dp2020]

Thank you for your story! I wonder if I have the same?! About a year and a half ago I got an itchy rash all over my body. Because of COVID I wasn't able to be seen and tested delaying my diagnosis (chronic urticaria/hives). I also had a sudden increase of bloating/indigestion/flatulence/constipation severity. I was diagnosed with IBS-C 20 years ago but I never suffered like this with every morsel of food I eat. I found a great allergist who prescribed Xolair and my CU/rash have resolved but I can't seem to find any relief with the GI symptoms. My gastro ran tests (upper endo, colonoscopy, etc) and all results were essentially normal. I was told my new symptoms are from my old IBS-C and suggested to take antidepressants and hypnotherapy. All fine and good only I feel awful all the time especially after eating. I got a breath test and was found methane positive but my gastro said there is nothing more he can do. I am so frustrated that I cannot seem to find a doctor who is even willing to try and help. I have changed my diet drastically (which does help but I'm still suffering). I do low FODMAP, gluten-free, dairy-free, nut-free, and low residue (low fiber). I am astounded how many people like me are out there struggling with these digestive issues without relief.