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If you haven't already, consider a biopsy to rule out or confirm Mastocytic Enterocolitis or mastocytosis of the GI tract. It can be done via colonoscopy or upper GI.

Hi @HK7015 and @CJ2322
I don't have time to read through this whole page, I have systemic mast cell disease and I am also a patient of Dr AFrin's. I highly recommend him to anyone who can swing it as its an important piece of my health care team, not only is he one of the gurus of understanding this disease he is very easy to communicate with for your doctors and will always consult on your case, this has been priceless for me given there is little mainstream knowledge of mast cell disease and it is a serious disease to have. www.inspire.com is a rare disease forum, free to join where there is a wealth of information and many others with this disease > I highly recommend you join it. Also there are very active Facebook groups with large numbers of members. You can learn a lot and get some local resources if they exist. My screen name on inspire is Jady58 and I would be glad to explain much more. I have many more that 3 mutations on C-kit but there are also other genes involved in the disease which I can also explain, its ... More

Hi @HK7015 and @CJ2322
I don't have time to read through this whole page, I have systemic mast cell disease and I am also a patient of Dr AFrin's. I highly recommend him to anyone who can swing it as its an important piece of my health care team, not only is he one of the gurus of understanding this disease he is very easy to communicate with for your doctors and will always consult on your case, this has been priceless for me given there is little mainstream knowledge of mast cell disease and it is a serious disease to have. www.inspire.com is a rare disease forum, free to join where there is a wealth of information and many others with this disease > I highly recommend you join it. Also there are very active Facebook groups with large numbers of members. You can learn a lot and get some local resources if they exist. My screen name on inspire is Jady58 and I would be glad to explain much more. I have many more that 3 mutations on C-kit but there are also other genes involved in the disease which I can also explain, its early and I didn't sleep well so now is not the best time for my brain to be working.
jady Less

cj2322 ,what probiotic packets were you taking that was acting as a laxative? I currently take Align once a day )as recommended and some issues have resolved but due to adverse reaction to Oxybutynin 5 months ago, I am still in the constipation mode. My doctor recommended other probiotics might help instead of the fiber bars I am currently eating. Too much sugar and carbs (diabetic) I guess. Align is too expensive to take twice a day so hoping you have suggestions that are cheaper.

My friend in Canada just saw Dr. Afrin. She really trusts him and although there isn't much he can add to her treatments, just talking with him made her feel the long train trip to see him was worth it.

I see I misspelled histidine.

Hi Mark, I am in the Leaky Mast Cell, Hashimotos, and neuro inflammation (dysautonomia/peripheral neuro/migraine/cervical stenosis/fatigue) boat. I'm the one who sees Dr Afrin in September. I agree that histamine is something we want in our body. It is a neurotransmitter and I do not want to be without it. I am trying to understand if my mast cell process runs the show or if it simply reflects where my snp variations get glitchy....slow detoxification and methylation. I've had so many hypersensitivity medication reactions that I'm reluctant to try new meds. I had an endoscopy/colonoscopy in 2011. I had mild gastritis and 40 hpf mast cells which helps explain some of my GI difficulties. You will get helpful information too. Robin

As to histamine, it is primarily a messenger, not necessarily something to be avoided. Yes, I'm taking all the masto meds to avoid mast cell degranulation, but that's somewhat different, a step closer to what is likely the root of the problem for me. And once I get closer to that root, I can, with any luck, stop the meds.

So how do I get closer to the root? Testing... paying attention to the pain and working to understand its source. One example: I had an upper endoscopy done recently that showed I have duodenal erosions (peptic ulcer) and esophagitis. So I'm getting closer to the issue, I think. With any luck, I can treat the ulcer and figure out what is causing the esophagitis. Biopsies were taken.

The price for that upper GI was pretty steep, both financially and in terms of its impact on my body. I've been pretty wiped out. But I hope that the end-result is worth it. One step at a time, I'm learning how to take a little better care of my body. Listening to the pain...

BW2931, there does seem to be an interesting link... but like I said before, it is frustrating that livewello doesn't show it's work. Are you in the MCAS boat like me? EDS? It would be so much easier if we could just compare our genes, which is somewhat possible on 23andme, but not well done, either. Perhaps that's a business idea for someone... I have yet to see such a comparison done well.

Histadine is not the same as histamine. It's a precursor to histamine requiring the enzyme HDC to become histamine. I'm compound heterozygous at MTHFR. I believe the folate issues make it more difficult for us to methylate the histamine.

I'm also homozygous on c677t.

I do get sick from eating meats that are not absolutely fresh or fresh frozen. I will have to google histadine. Is it the same as histamine? I've been following a low histamine diet and see improvement.

It's my understanding that chocolate is high in histadine and histadine is converted to histamine. So, by eating chocolate you may be upping your histamine load. If you look up high histadine foods you may find out more. I'm curious if any of the other histadine foods give you issues.

Does anyone else have a severe flu like reaction to dark chocolate? Can't really find anything on it on internet.

I'll have to check my packets of probiotics. I stopped taking them because they didn't agree with me but hung on to them in case I need a laxative! Kefir milk seems to agree with me even though I know it is high histamine.

Wow a lot to deal with. Glad to know we are not alone in our suffering.

FR---I have a mild dysautonomia (sympathetic withdrawal), limited GI motility, and my IGE is 2. My struggles are mostly neuro inflammatory. I am also a JAK2 heterzygous. My tryptase is 3 and I've been told my problems are nonclonal.

It is my understanding certain probiotic strains break down histamine and certain probiotics strains can help produce histamine. The degrading probiotics include: B. Infantis, B. Longum and L. Plantarum. Histamine producing strains include: L. Casei, L. Reuteri, and L. Bulgaricus. I also take Fibroprotek which has quercetin and luteolin and they act as mast cell stabilizers too.

Well, I have severe dysautonomia with 5 homozygous bad SNPs and 8 heterozygous SNPs on KIT. Homozy, rs12503461 TT; rs2237028 GG, rs2855777 AA, rs3020826 CC, rs3134884 GG. Hetero, rs13135792 CT, rs17084644 AG, rs2213180 GT, rs 2237032 CT, rs2237034 GT, rs2237035 GT, rs3819389 GT, and rs6820303. Let us not forget the nonclonal-MCAD with JAK2, rs12340895 CG and rs3780374 AG, which both, as Hetero, increase chances of a myleoproliferative neoplasm with substantially increased odds. I have gastroparesis, severe constipation, bladder atony, IgE over 1000, but I never had tryptase measured. That's the short list.

What are histamine degrading probiotics? I have had serious bouts if ibs & gerd all my adult life. Much better since I have been on low histamine diet.

Yes I will have to try sandbox. I need to be home on my laptop because my little tablet is too difficult for me to do anything but read.