Gluten Free, Hashimoto's and Histamine Intolerance

[Sunny3]

Hi all, not sure if I am posting in the right community, but I am struggling.

I was diagnosed non celiac gluten free 3 years ago 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 I finally found a very smart doc who diagnosed SIBO and histamine intolerance. A low histamine diet is the ONLY thing 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.

Just wondered if anyone else has experienced a connection between going gluten free and histamine. This is been a tough road and I am ready to feel better/normal!

[Rhyothemis]

My daughter had both Celiac and oral allergy syndrome come on at the same time; I developed histamine intolerance/MCAS symptoms in the same time period, also.

The connection is probably one of shared causation - whatever caused you to become intolerant of gluten also caused your HI; don't know why there was a bit of a time delay in your case, but the immune system is complicated, to say the least. For my daughter and me, I believe the cause was an infection of some kind. Using a HEPA air filter has helped a bit, in addition to all the other things usually recommended for HI and MCAS.

[Sunny3 in reply to Rhyothemis]

Thanks for the response and yes agree the "shared causation" makes sense. My histamine symptoms are so varied and come and go so often it was so hard to pin down. So grateful to my new doc who thought to do the SIBO breath test and once that was positive, we tried the histamine diet (since they tend to go together) and what a relief - very helpful but still far from normal. I am just learning about all of it but at least I finally have something that I can work on!

[Rhyothemis in reply to Sunny3]

Hope your treatment goes well. Please post updates.

[Hidden]

Hi Sunny3. Without the thryoid, the other issues are in the ballpark of where I am. I've diagnosed myself the hystamine intolerance going on an odd outcome of taking an anti-histamine and visiting a well-informed dietician. I also have SIBO and start the antibiotics this week. I've no idea if going gluten free would lend to the additional problems, but do think that gluten messes up gut biom, which in turn can lead to the other problems. I think going gluten free is not enough - the gut needs rebalanced for all the dodgey additional problems like SIBO, candida, leaky gut. As an interesting aside, I'm also looking at the role of the vagus nerve and coeliac/gluten intolerance/gut issues. Vagus nerve impacts on digestion, but it's also a two-way street, so issues with digestion impact on vagus nerve. Vagus nerve is a stress controller/impacted by stress, so arguement that excess stress/upset can translate as an impact on vagus nerve signal that, in turn, impacts on digestion. I think we have a long way to go in understanding why bodies go wrong, but good you are on track for answers. I'm very impressed you actually found a doctor who was aware enough to diagnose SIBO and histamine intolerance. Are you based in UK?

[Sunny3 in reply to Hidden]

Hi Mise no I am in the US but trust me it took a number of doctors to find this one! I took the hydrogen breath test and it showed positive. I think I have had sibo and histamine going on for many many months probably over a year and it is very chronic and critical and not going to go away overnight . But I can tell you just a few weeks on low histamine and it is remarkable the difference I can actually engage and look forward to doing things wear for over two years I've just been faking it through my days feeling so unwell not wanting to engage. I am surprised at the wide variety of symptoms histamine and sibo can cause not just GI related . Crazy! I have done a lot of reading on the vagus nerve and agree 100% in fact I have started to do a very basic online yoga class for the vagus nerve. Sounds like we are definitely on the same track! Can't wait to start the meds and supplement and see if I can continue to feel better. What a journey! Thank you for replying and glad to hear from you!

[Hidden in reply to Sunny3]

Great that we can compare stories and hopefully positive outcomes. I think this is a good resource/info point for anyone else on here struggling to recover and left wondering/floundering. Here's to a speedy recovery.

[Sunny3 in reply to Hidden]

THANK YOU! I have been floundering three years and feel my case is chronic and severe - am working hard to get on track and thanks to lovely people like you who help with input!