Hello everyone.
My daughter is having a lot of stomach issues that we can’t figure out what is causing it or how to correct it. She says it’s severe nausea and cramping. She is 13 and has not yet began menstrating. She has been diagnosed with EDS and has pretty severe POTS. I have read that both can cause stomach issues and that mast cell disorder also can be the cause for some people with these common conditions. Her POTS is the type that causes very low BP that drops even lower upon sitting and standing while her resting HR is around 85-90, sitting is around 110 and upon standing jumps up to 160-190. Her EDS has been typed as either VEDS or HEDS, but we have not done formal testing yet for VEDS. She is now being evaluated for possible MS or other microvasular disorder.
Hi Abbilou, I’m so sorry to hear about your daughter’s tummy issues. I have some STRONG thoughts as to what may be happening here, as my kids and I also went through this and had severe POTS. Obviously, you want to rule out VEDS, right? Did you see The Driscoll Theory, Part 2? It explains how mast cells can start the ball rolling with gut issues. Lots of sources for this info. Here’s one: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3033552/ Treatment for mast cells in the gut usually takes care of most of it. We were left with horrible constipation, though. This led me to more research (treatment trials coming soon). We were able to halt this fairly easily. My research is under “lock down” as we lay out the clinical trials with a major research center, but please stay close by, OK? MS and microvascular disorders — Did you see the vid about the MTHFR gene and thromboembolism? It would be a good idea to rule out some prothrombotic conditons (which often mimic MS, but they are very treatable – Factor five, antiphospholipid syndrome, MTHFR mutations, etc). What’s left, is likely quite treatable, but is at the cutting edge of science (hence more trials. good grief.)
I hope this gives you something to work with until we can start the trials! Oh, I should mention that knowing if MCAS vs. MCAD is involved may be important. 23andme (a result of your genetic profile) will be a tool we’ll use to treat based on the genetic defect. If you decide to look at 23andme, again, please holler. A few of us are getting together with our results… It’s an amazing look at your innerds! Hang in, my friend, 🙂 Diana