Another good link about Histamine Intolerance.
http://www.amymyersmd.com/2013/10/ev...e-intolerance/

Oddly enough it was my birthday the other day and my wife said, I don't care what this is gonna do to your nerves have a small scoop of Ice Cream tonight! You have to at least have something bad on your birthday! So, I did. I also decided to take a benadryl while no one was looking in anticipation of what was coming after reading these studies posted here. Normally Ice Cream would've had me up all night in buzzing burning pain (and no, i am not a diabetic). After the Benadryl i had almost no pain that night. I was of course tired as heck! I apted to not take my nightly gabapentin because the benadryl basically seemed to take care of the pain and give me the same groggy reaction. I can't see taking something like Benadryl on a daily basis (especially seeing it can cause low DAO), but in my case it definitely supports the connection of histamine and nerve pain/inflammation.

Five years later, an allergist/immunologist is looking at my histamine levels as my potential problem. Sigh.

I want to post this information here in case it should ever help anyone.

From Histamine - Wikipedia

"Once formed, histamine is either stored or rapidly inactivated by its primary degradative enzymes, histamine-N-methyltransferase(HNMT) or diamine oxidase(DAO). In the central nervous system, histamine released into the synapses is primarily broken down by histamine-N-methyltransferase, while in other tissues both enzymes may play a role. Several other enzymes, including MAO-B and ALDH2, further process the immediate metabolites of histamine for excretion or recycling."

I believe low levels of HNMT is a contributing factor in my neuropathy. DAO supplements don't appear to help at all. These two SNPs on the HNMT gene have been documented as resulting in reduced levels of HNMT, and thus a reduced ability of breaking down of histamine that could impact proper functioning of the CNS:

rs1050891 - A/A is normal, I'm A/G
rs11558538 - CC is normal, I'm C/T (C314T Thr105Ile)

Both are tested on 23andme, although the second isn't available by SNP name. (Ping me for more information.)

The immunologist who diagnosed currently has me on Zyrtec once a day and 40 mg of famotidine (Pepcid AC) twice a day to try to get my histamine levels down. My plasma histamine level was high in the blood test he ran.

I'm also on a low histamine diet which has helped bring them down as well. one or both actions has pulled me out of a terrible flare I was in caused by three consectutive days on high histamine food consumption. It was so bad that I actually did have a classic allergic reaction. That's what caused me to make an appointment with an allergist/immunologist. I knew it had to be a clue.

I was very fortunate that this doc whose office is two miles from my house is well-versed in Histamine Intolerance and Mast Cell Activiation problems. Not all are.

I continue to learn about my condition and determine the "triggers" that cause me to flare and turn into a ball of fire.

Quercetin with bromelain appears to be one of the most helpful supplements as it's a natural antihistamine. I'm also taking palmitoylethanolamide (PEA) with luteolin for its mast cell stabilization properties.

(PDF) New Insights in Mast Cell Modulation by Palmitoylethanolamide

Overall, I'm feeling much better and am doing a decent job of keeping the flares to a minimum. It's a learning process, though, as you have to figure out your triggers, and they're not always consistent. For example, you can make a recipe one day that doesn't affect you, but the next time, it does. The freshness of the meat comes into play, and that can obviously a big unknown.

I so wish MrsD were still around. I think of her often and hope she's doing ok.

As I continue to peel back the layers of the onion of my long-standing neuropathy issues (since 2013), I feel like I'm getting closer and wanted to share.

The new medical malady that sent me down this path was the incidental discovery of a 9 mm kidney stone. I'm 59 and have never had kidney stone problems before, so this is a "new feature" that would seem to go hand-in-hand with the idiopathic neuropathy that hit me later in life. The stone has sent me down another rabbit hole as I learn why stones are formed.

Long story short, I am now looking a food sensitivity as being the root cause of my issues. I've been on a "clean" diet for many years now. I eat very little processed food that is predominantly plant-based with lots and lots of fresh fruits and vegetables. That's all well and good, unless you have a sensitivity to oxalates or salicylates which are abundant in those foods. And I've learned having histamine problems seem to go hand-in-hand with these sensitivities.

I believe it's likely that an insult I took to my gut right before my neuropathy started may have led to dysfunction in its ability to process one (or both) of these substances. If your gut can't get rid of them properly, they can wreak havoc in your system. I do have some functional medicine test results that are supporting the idea that salicylates, in particular, may be my problem.

The one thing I really wanted to mention is something that I read on these forums very early on that may have hinted at the nature of my issues. My discomfort from my neuro symptoms gets worse as the day goes on, so they're at their mildest in the morning when I wake up. I remember several people here on the forums saying it was the same with them, so I really didn't think anything more of it. "That's just the way neuropathy works" was my thinking. Now I'm realizing that the longer I fast when I first wake up, the longer my symptoms remain mild, and what I put in my mouth is likely involved.

So obviously I'm now setting about making dietary adjustments to see if I can make a difference. Just thought I'd pass this on, as I don't think neurological symptoms are a common manifestation of this problem. Tinnitus is, which I do have, but not the crazy sensory and neuropathic issues.

Ouch on that kidney stone. I hope that's all dealt with now.
I've followed along with your posts. I wonder if you think some sort of cortisol dysregulation is occurring due to a possible salicylate sensitivity?

Just an aside - Salicylate sensitivity is not uncommon in the autism community as I've found from my own experience. I haven't checked some of the claims in the article but it was interesting reading. Again, personal experience, but I've not known anyone on spectrum who didn't have some type of gut issue and inflammatory condition.
Autism and Mast Cell Activation Syndrome

Ran out of time earlier, just wanted to add a couple of things. My daughter and I eat the same type of diet as you by the sound of it. Eating and cooking plant based food is just routine now, but I don't want to be eating foods that can end up harming us either. Daughter only has one kidney so she can do without those issues so we'll certainly look into this further.

Myself, my neuropathy came on after a very short time on a melanoma treatment called Targeted Therapy which attacks mutations (BRAF) within cancer cells. It was a failure and it started my neuropathy. To this point I've never been able to notice whether any particular foods, or lack of, affect me or not. I do notice certain medications cause flares though so I avoid all medications if at all possible.

Thanks for the response, Lara. It's been quite a journey. Sorry to hear about your neuropathy and bout with melanoma. Is the latter still ongoing?

Who would have thought spinach and broccoli could be bad for you?

I think cortisol/adrenaline dysregulation is quite likely.

Thanks for the link. I have a tentative MCAS diagnosis by one of the allergists/immunologists mentioned in that sites list of doctors, but his words to me were, "Yes, I think you have it, but I can't tell you why." His only suggestion was to take H1 and H2 antihistamines and go the functional medicine route. I've tried two FM docs, and neither was a good experience.

I need to do a strict elimination diet I think, and may try to find someone to help me with that. The "lists" on what foods are high in what are all over the place.

The connection of MCAS and/or oxalates with autism seems strong. There's a woman named Susan Owens (if you've not encountered her) who strongly believes that not only is autism caused by oxalates, but she throws Alzheimer's, MS, and Parkinson's into the mix too. She believes the widespread use of antibiotics and pesticides has caused microbiome damage leading to the rise in all the neurological disorders.

Interesting theory.

Thanks for your reply. Yes, still dealing with it. Diagnosed at stage 3 and quickly to stage 4 so didn't stand much of a chance but out of the blue I became eligible for a medication that has had quite remarkable results. It's tedious but I am at the moment disease free. I always fear it lurking there though that's apparently a "normal" fear I've been told lol. I'll always be stage 4 and probably always have to take this medication (by infusion). It's one of those situations where you take the drug until it causes too many severe side effects or it stops working. So far so good for me. Others have not been so fortunate which brings me back to the gut microbiome...

Interesting thing about the treatment that I take (PD-1 checkpoint inhibitor pembrolizumab) - I responded immediately to the treatment I'm on and seriously think it is due to my diet and gut health.

Diet and Probiotics Influence Response to Immunotherapy - Cancer HealthYes, I know of Susan Owens and the Oxalate Project. The link below talks about Chondroitin sulfate to prevent kidney stones.
https://www.realizehealth.com.au/wp-...T-Oxalates.pdf

It's a hard one. All those foods on the list. All the different subsets. When my children were younger of course it was Feingold making the news and then the lactose connection and the ongoing candida etc.. It goes on and on.

The good thing for you though may be if you have a connection with salicylate and or oxalate sensitivity then you can, with work, eventually heal and your flares can stop or is that being too simplistic?? I guess it's the ongoing hunt for the reason that is so tedious and expensive I would image. Sorry about your bad experiences with the two other doctors. You really need someone to work through it all with you especialy if you're doing elimination diets.

Let us know how you're doing.

I had interesting long conversation with the Pharmacist in oncology day unit here and she'd just recently transferred from a very large teaching hospital in the State's capital. So, basically she knew wayyyy more than anyone else in my area about my particular Immunotherapy treatment and how it related/caused the amplification and severity of the recent side effects that I had from my first covid vaccine [AstraZeneca or Vaxzevria as it's now called), especially the unbelievable itching that came on before the increase in neuropathy pain.

Essentially she understood that majority of my more severe side-effects were most probably histamine related and exacerbated by my Immunotherapy. The plan agreed upon by my treating professionals is to now take the antihistamines for some days prior to the second vaccine and then daily afterwards as needed to prevent this happening again.

Crossing fingers.