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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.
I am hoping maybe someone can explain the mast cell issues a bit and how it impacts the GI. I have read a lot but it’s the one condition I’m not working out very well in my head. I understand the body releases histamines and they are attacking the body, but I guess I don’t understand the common symptoms, how OTC treatment works and if for others there are ways to work out which is the cause to better address treatment and prevention.
She sometimes has sinus allergies, has to clear her throat a lot and years ago had awful seasonal allergies and the only other things that I’ve noticed is her skin has become rough like sandpaper in some places especially the upper arm and her face sometimes looks red and her eyea get blood shot. During her weekly infusions we ran into an issue where which ever arm they used it would become covered in a nasty itchy rash regardless what products they used to try to avoid an allergic reaction. We have finally gotten her POTS (w/meds) from be severely disabling to manageable with exception her BP is still too low and HR is still too high.
She often wakes up to the tummy problems vs it just suddenly coming on. She has times it will kick in later in the day, but it seems more so she wakes up with it. I don’t believe it causes full blown diarrhea but I think slightly lose stool sometimes and seems a few times constipation. She has also always had a lot of gas.
So if anyone has any thoughts, suggestions or can explain a bit about mast cell etc I’d truly appreciate the help. She had to leave school last year and is finally at a wonderful theraputic school that has been a true blessing, but she is now missing days due to the tummy problems. Missed twice this week and I worry if she misses to many they will remove her from the program. Plus it can’t be fun feeling like you’ve got a constant tummy virus. 🙁
(she does eat small meals and we time her meds and food to be sure we don’t trigger the symptoms accidentally)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, 🙂 DianaFor GI-based mast cell issues, oral Sodium Cromoglycate (aka “Nalcrom”) in capsule or liquid form seems to be the best thing. The dose I take is 600mg per day (6 capsules) and I’ve seen other people on 8 per day. For me it helped a lot with nausea, diarrhoea, bloating, and reflux.
The main drawback in my case is that it’s fairly expensive for me but that will depend on your insurance situation! Everything I’ve read seems to indicate it’s a quite safe medication to take.
Cheers,
rFor GI-based mast cell issues, oral Sodium Cromoglycate (aka “Nalcrom”) in capsule or liquid form seems to be the best thing. The dose I take is 600mg per day (6 capsules) and I’ve seen other people on 8 per day. For me it helped a lot with nausea, diarrhoea, bloating, and reflux.
The main drawback in my case is that it’s fairly expensive for me but that will depend on your insurance situation! Everything I’ve read seems to indicate it’s a quite safe medication to take.
Cheers,
rThanks, Jeshyr! We used the capsules for a while, too (had them made from a formulating pharmacy). The only drawback is that the contents of the capsule are supposed to be mixed with water before drinking. Ugh. That stuff is hard to dissolve! Most of it ended up sticking to the sides of the glass, we noticed. Ketotifen is a small pill available out of Canada (and other countries) — it’s taken twice a day. Most doctors can order that for you, too. Another option… 🙂
Thanks for the hint Diana but I’m on top of it!!
My MCAD doctor says that the only reason I’d want to disolve the powder before drinking is if I had lots of mouth/throat symptoms which I don’t – all my GIish symptoms are mostly at my stomach or “later” in the GI tract so the capsules are 100% fine for me. And they definitely help with the explosive diarrhoea and other gut symptoms which is a relief!
Unfortunately my MCAD guy seems to be irrationally biased against Ketotifen 🙁 He tried it on two patients and they both had uncontrollable weigh gain and had to come off it, so he’s very very reluctant to try it. Because of the prescribing rules in Australia I can’t get it covered by insurance unless he specifically prescribes it, otherwise I have to pay full price and I can’t afford that! So I’m working on him about it still … *touch wood*. I’ll keep you posted!!
j
Thanks for the hint Diana but I’m on top of it!!
My MCAD doctor says that the only reason I’d want to disolve the powder before drinking is if I had lots of mouth/throat symptoms which I don’t – all my GIish symptoms are mostly at my stomach or “later” in the GI tract so the capsules are 100% fine for me. And they definitely help with the explosive diarrhoea and other gut symptoms which is a relief!
Unfortunately my MCAD guy seems to be irrationally biased against Ketotifen 🙁 He tried it on two patients and they both had uncontrollable weigh gain and had to come off it, so he’s very very reluctant to try it. Because of the prescribing rules in Australia I can’t get it covered by insurance unless he specifically prescribes it, otherwise I have to pay full price and I can’t afford that! So I’m working on him about it still … *touch wood*. I’ll keep you posted!!
j
That is GREAT! I wish we could do that! yea, weight gain can occur with Ketotifen. I didn’t notice it when I went on it, but our kids are on it because my son NEEDS to gain weight (Ketotifen’s not helping! Unless he’d be thinner without it) and with kids taking meds at school, my daughter is on Ketotifen because it’s soooo much easier. Whatever works, is my motto!! Australia, huh? I’m learning so much about international health laws! Ugh. Hang in… 🙂 Diana
We ended up deciding for now to go the anti nausea medication route to keep her in school. Really did not want to add yet another medication. She takes so many, but for now it’s the option that works until we can work out which illness is causing the tummy issues and if we can possible correct it vs medicating it. It’s like every time we think finally we can begin to move forward yet something else says “oh no you don’t”.
I have no clue if there is a Mast Cell educated Doctor here in the Portand Oregon area and the idea of yet another possible DX is daunting. We are still awaiting word on the MRI DX and geez she has so many others already. I’ve kind of reached the point of just not knowing where to go from here. She is having to switch some of her Doctors due to an insurance change and I find it rather scary. We do get to keep her POTS Doc and I am hoping her Geneticist as well. But finding a PCP who knows EDS/POTS etc is still not working out.
We ended up deciding for now to go the anti nausea medication route to keep her in school. Really did not want to add yet another medication. She takes so many, but for now it’s the option that works until we can work out which illness is causing the tummy issues and if we can possible correct it vs medicating it. It’s like every time we think finally we can begin to move forward yet something else says “oh no you don’t”.
I have no clue if there is a Mast Cell educated Doctor here in the Portand Oregon area and the idea of yet another possible DX is daunting. We are still awaiting word on the MRI DX and geez she has so many others already. I’ve kind of reached the point of just not knowing where to go from here. She is having to switch some of her Doctors due to an insurance change and I find it rather scary. We do get to keep her POTS Doc and I am hoping her Geneticist as well. But finding a PCP who knows EDS/POTS etc is still not working out.
Whatever works, my friend! I NEVER found a PCP (or any other doctor, for that matter!) who “knew” EDS/dysautonomia. My best advice there is to try to find someone who is open minded, preferably not brittle and burned out, and you likely have a winner! I just learned today that one doctor is using my book to TEACH HIS MEDICAL STUDENTS. Whoa!Another patient, whose doctor was completely shut off to considering hydrocephalus, went to another who said that we were SPOT ON. She was having “pulsatile vision”. He confirmed that her vision changed with her pulse, and told her that doctors who are also patients are often times the ones to listen to because they LIVE these symptoms. Oh, and a doctor who hasn’t forgotten what all medical students know would be great — the more we learn about the body, the more we realize how much we DON’T know… 🙂 Hang in, my friend. And let’s all try to keep up on the “good doctors” page… 🙂 Diana
I had a sandpaper like rash on my upper arms my entire life which completely cleared after a few MONTHS being gluten free. I had had blood testing for celiac which was negative but despite that I tried and had a positive result to a gluten free diet trial. For sinus issues my son and I both have had excellent results with Nasalcrom. I double dose myself and sniff hard to get some to go down my throat every morning and have stopped getting bronchitis/pneumonia. Of course, check with your doctor. Be careful about histamine in foods… leftover meats are really high in histamine. I got sicker on GAPS because of the added histamine in fermented veggies and long simmering meat and broths. I can get abdominal pain and bloating when I eat foods with too much histamine. It is a barrel-effect so you can get away with some foods sometimes and not others. I highly recommend Maria Emmerich’s blog and books for gluten-free low carb HEALTHY food recipes which my kids love to eat!
For red eyes, ask your daughter’s doctor about Kroger’s itchy eyes drops which is ketotifen and OTC.
Also… check shampoos and conditioners for allergens… especially for hidden wheat. Facial rashes can be from hair products!
Another med to look into is hydroxyzine (Atarax). It is an antihistamine recommended by Dr. Theoharides of mastcellmasterdotcom because it crosses the BBB to settle mast cells in the brain. My son and I have improved dramatically taking 10 mg of Atarax at night. It has helped our heart rates and our inattentive ADD/word finding problems.
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