raspberryfirecracker

Hi, definitely not recommending anyone just stop B vitamins altogether:

18 hours ago, raspberryfirecracker said:

Stay hydrated with something that has electrolytes like salt and potassium, but no "extra" vitamins yet unless directed by your doctor (wait a few weeks, most b vitamins especially could make you much worse right now).

Was suggesting OP lay off them until getting over the flare. She said she was taking a B complex. High potential to exacerbate both MCAS attacks, and dehydration. And someone recommended an Ultima electrolyte powder, that reminded me it has those "extras" many of us with MCAS react to during acute episodes, b vits included. It was a good rec, it IS a good rec, something my own doctor rec'd at one point pre-dx, but in the context of triggered MCAS, context matters. When mast cells behave badly, things aren't all good or all bad, they're "just not right now."

(Her reaction sounds so similar to what I went through, and back then they didn't know the two were related I just thought I was making myself worse with no idea how--exactly the title, "what am I doing wrong?" Had to make an acct to share since no one had mentioned this yet. I hope I can help others know that even though science doesn't understand why these immune cells act worse after we are successfully treating our celiac disease, at least we have enough anecdotes and finally, research, to know it is a common post-dx reaction...hopefully before anyone jumps to the worse case scenario. Even if vapor_girl turns out to have a different issue it might help the next person who sees it at just the right time. Thanks for the welcome)

9 minutes ago, knitty kitty said:

Where did you get this information?

Being forced to learn in order to get better, like everyone else, I presume. Can't just post a study or two, because it's impossible to summarize 6+ years of information learned from mental effort, doctors, bloodwork, research studies, genetics testing, and treating my deficiencies in a way that wouldn't hospitalize me or cause additional diagnoses, by posting a few articles. 

I just hope it helps someone else if they can get the benefit of it, especially during a bad spell.

Happy healing journey. Hope today is better for you, vapor_girl, and anyone else reading these in the future.

Re: B vitamins: Yes, in the case of mast cell activation and a body in crisis fighting to remove the excessive histamine produced by those cells wherever they stirred, B vitamins like B9 (folate, even methylfolate), and B12 (even adeno- hydroxy- or methyl-b12) naturally result in histamine down the line, and would overload the pathways the body is using to remove it faster than the body could keep up. It'd be like bailing water out of a boat that has a hole in the bottom. If vapor_girl happens to have any genetic polymorphisms that slow down her ability to metabolize histamine further (like slowed DAO, or reduced ability to create DAO in the gut which is common in us, or slow MTHFR genes, etc etc.), the reaction would be even worse. The active form of B6 (which doesn't need to borrow/methylate before it can work) can help remove histamine, as can the vitamin C she's already on, and Niacin can help stop over-methylation caused by taking too much/too little ratios of the other b vitamins in case someone ALREADY caused an enzyme overload, but that's a lot for anyone to absorb when they're crashed, dehydrated, and new to the post-celiac world. It also uses up electrolytes methylating/metabolizing B vitamin supplements (it's how your body integrates them/quickly eliminates the excess), and someone in her condition can't afford to spare any electrolytes. Lay off the b complex if mast cells are flaring, basically; you recover faster because you aren't throwing daily sparks on the fire you're trying to put it out.

Hope that helps, and sorry for getting so technical... Might be interesting information when you get to feeling better, though!

Vapor girl, I made this account just so I could tell you this. Here's my two cents.

Celiac disease is correlated with something called mast cell activation syndrome. Research doesn't yet know if celiac disease triggers the mast cells (a white blood cell), or if the mast cells are what "turn on the ignition" for celiac disease to switch on, but they tend to go together; the longer you've had celiac disease, the more mast cells they find in our intestinal wall. Since you were only just dx'd, your mast cells are probably on overdrive. Everything you eat will make you sick during flares, it's not your fault. You can help control the mast cells with OTC antihistamines (an h1 blocker like claritin or benadryl + an h2 blocker like famotidine) every 12 hours, and either ibuprofen or aspirin (whichever you tolerate better, taken as directed) to control the prostaglandins being released in high numbers by these mast cells. This is not your fault. Stay hydrated with something that has electrolytes like salt and potassium, but no "extra" vitamins yet unless directed by your doctor (wait a few weeks, most b vitamins especially could make you much worse right now). If you try the OTC meds you should notice feeling better within 6 - 48 hours, but it will take about 2 weeks before your body flushes out the histamine and other inflammatory chemicals directly released from the mast cells in your gut. They only just recently confirmed the correlation of Celiac Disease and Mast Cell Activation Syndrome, so they don't yet know WHY stopping gluten--a good thing!--makes the mast cells freak out and make us feel worse, but it's a COMMON reaction, you're not crazy, and it's treatable. It really is like a type of withdrawal, I think, like our immune system made all these immune cells active and then we rip away the gluten and now they have nothing to respond to?! It's hell. Google "celiac disease mast cell activation" or look on the boards and see if it rings true for your situation. Dietarily, eat "low histamine" for right now until you notice you can eat a small meal without the dreaded reaction. Drop those bananas! (I know, they provide a lot of nutrients and are easy, but they are one of the worser things to eat during these flares.)

Hang in there. Don't be afraid to get fluids at the ER if you need to. This will pass. Be well. You're on the right track!