Has anyone here had perianal DH?

[knitty kitty]

@newtonfree,

I've found Niacin Vitamin B 3 helps heal Dermatitis Herpetiformis outbreaks.  Nicotinic acid, the form of Niacin that causes flushing helps DH the best for me, but if the flushing is too much for you, Niacinamide works, too.  

I've suffered from Gastroparesis.  I have Type Two Diabetes, under control with diet and Benfotiamine.  Benfotiamine has been scientifically shown to promote intestinal healing.  It also helps improve Gastroparesis.  The part of the brain that controls digestion and the Vagus nerve systems uses lots of Thiamine.  When low in Thiamine, Gastroparesis and POTS can result.  

Consider supplementing with Benfotiamine (and the other B vitamins) until your digestive system heals and you can absorb sufficient nutrients through food.  

[newtonfree]

5 hours ago, knitty kitty said:

@newtonfree,

I've found Niacin Vitamin B 3 helps heal Dermatitis Herpetiformis outbreaks.  Nicotinic acid, the form of Niacin that causes flushing helps DH the best for me, but if the flushing is too much for you, Niacinamide works, too.  

I've suffered from Gastroparesis.  I have Type Two Diabetes, under control with diet and Benfotiamine.  Benfotiamine has been scientifically shown to promote intestinal healing.  It also helps improve Gastroparesis.  The part of the brain that controls digestion and the Vagus nerve systems uses lots of Thiamine.  When low in Thiamine, Gastroparesis and POTS can result.  

Consider supplementing with Benfotiamine (and the other B vitamins) until your digestive system heals and you can absorb sufficient nutrients through food.  

It is kind of ridiculous how helpful your posts have been. I'll certainly give the B vitamins a shot for myself - I had, until this recent elimination phase, always paid a ton of attention to balancing my diet and supplementing with whatever I might be missing (like B12), but never considered that I wouldn't have been absorbing B vitamins properly since celiac disease wasn't on my radar. But perhaps even more importantly, I think you've found a crucial piece of my wife's gastroparesis picture.

Her diet is chronically low in several B vitamins, including thiamin, but she'd take a high dose B100 complex every month as part of her regimen to help with her PMDD. She'd tell me off for nagging her about daily vitamins and say that it was fine that she'd never remember to take them, because she always catch up with the therapeutic dose she takes every month. With how easily a healthy gut absorbs B vitamins, I never worried about her becoming symptomatically deficient given that she'd take a high dose for a week every month.

Well, I just asked her about it and apparently, for the last two cycles, she skipped them without telling me because she was feeling better than usual. And that's when her gastroparesis flared severely.

I swear, if she complained about my nagging before, she's in for a ride. That, or I'll just start hiding it in a blob of peanut butter like I do with our dog, or popping it in her mouth and stroking her throat until she swallows like I do with him when the peanut butter trick fails.

[knitty kitty]

@newtonfree,

You seem to have a wonderful relationship with your wife!  I admire you both are making a team effort, so here's some more tips for wife care...

Get her Vitamin D level above 80 nmol/L.  At that level and above, Vitamin D acts like a hormone.  It's a major help.  I was so deficient in Vitamin D (single digits) that I had severe menstrual problems.  Vitamin D helps improve mood, too.

I'm a big fan of High Dose Thiamine (500-1500mg daily).  It's made an enormous improvement in my health.   Dr. Derrick Lonsdale and Dr. Chandler Marrs' book Thiamine Deficiency Disease, Dysautonomia, and High Calorie Malnutrition, is a book that you might find interesting and helpful.  Mitochondria don't function well without Thiamine.  Mitochondrial dysfunction as a cause of disease is becoming recognized.  

Thiamine has been shown to improve PMS symptoms.  Thiamine also has analgesic effects.  

Don't forget magnesium glycinate, needed to make enzymes with Thiamine.  Magnesium helps one relax.

Make sure you both can rise from a squat.  (Makes a fun party game, too.)  This is the World Health Organization's field test for Thiamine deficiency.  I failed this test - in the middle of an aisle at the grocery store, no less!  

Oh!  Not peanut butter!  (High in Lectins!)  Dark Chocolate instead!  (Dark chocolate causes "feel good" endorphins to be released.)  And Oolong tea (full of L-Theanine to relax).  Purr, purr, purr 😸

[newtonfree]

@knitty kitty,

What you're saying makes a lot of sense. She's also been chronically low in vitamin D - a recent blood draw put her at 52 mmol/L, and she was on 10,000 IU/d for weeks before stepping down to 3,000 prior to the blood draw.

Also, after about two weeks of following a GFD with me, she glutened herself yesterday with takeout while at work - and all of her symptoms from gastroparesis to brain fog to abdominal pain and headaches flared quite blatantly and severely. We have both been doing literature reviews and have now added mast cell activation syndrome to our differential for her. It'll be quite some time until she completes her workup, so we aren't assuming she's celiac, but we also can't deny how much better she has been doing on the GFD and how much worse gluten seems to be for her. In retrospect, she stopped wearing makeup because of all the skin reactions she would have, and the products she reacted to all contain gluten. She had one expensive eyeliner that caused her no issues, and it was gluten-free, but all the cheaper ones would cause rashes and skin reactions of various sorts, so she just stopped using any of them since she didn't understand what she was reacting to.

Funny you should mention magnesium (bis)glycinate. We've both been on it for years, ever since I worked with a chronic pain doc who swore by it and got incredible results with it in his patients. She has TMJ issues and the magnesium bisglycinate is one of the few things that made a dramatic improvement in her jaw pain and resulting tension headaches.

And don't worry, we are currently only using the peanut butter for the dog. I've been compiling a spreadsheet of high-lectin foods to avoid during this initial "modified AIP" phase.

But I've actually been using boiled peanuts in my smoothies, because a number of studies including this one, which seems to have been the progenitor of them all back in 1986, found that 30 minutes of heating adequately destroyed all peanut lectins regardless of technique (roasting vs steaming vs boiling). Wet heating methods always have the highest efficacy among all studies looking at all types of foods, so that's why I picked boiling.

And, as a vegetarian with a dairy allergy who now also has to (hopefully temporarily) avoid eggs for AIP purposes, I need to make sure I'm not protein deficient. And yes, as a lifelong vegetarian, I'm acutely aware of the issue of completeness of protein, but the best approach to amino acid profiles is to maintain diversity. I do have (thoroughly baked and thus lectin-free) tofu which is quite complete, and started challenging (CCA certified gluten-free) hemp hearts two days ago with no issues thus far, which are another quite complete AA profile, but "the more the merrier" and peanuts are one of the few low-FODMAP legumes I can tolerate right now. So what I'm doing is making peanut milk with defatted, gluten-free roasted peanut flour, and boiled gluten-free roasted peanuts to put in my smoothies. I'm boiling each batch for 30 minutes (on top of whatever roasting time they got originally) and am confident in them being sufficiently lectin-free. But definitely no peanut butter, which only has the stock roasting time and contains demonstrable levels of lectins in every study I've found that tested for them.

Trying to be empirical about the approach to lectins, because I need to maintain my nutrition, and the GFD, vegetarianism and dairy allergy superimposed on the standard AIP would leave me with what the Simpsons called a Level 5 vegan - "not eating anything that casts a shadow."

In terms of a DH update, I'm about three days removed from my last dalliance with tomato, and the DH is settling back down significantly in terms of redness, epithelial healing, burning pain (perianal) and itching (hairline). The boiled peanuts and hemp hearts have caused no symptoms at all that I can discern.

And the benfotamine, niacinamide (too nervous to bring flushing into the picture at this stage), and high dose vitamin D are on their way as we speak.

It's feeling really good to be developing an approach to managing this. I feel like I have agency in this matter for the first time in my life. Strict GFD, lectin avoidance, vitamin supplementation - these are trivial inconveniences compared to the debilitating pain. I'm back to sitting comfortably and not having to worry about making an extra trip up and down the stairs to retrieve something I forgot. That's not how I've lived most of my life, especially during the continuous 1.5-year flare that preceded my diagnosis. I'd stand (with a standing desk for all computer use at work and at home) until my muscles were so tired that I simply couldn't avoid sitting, then sit down carefully on the one or two chairs that were least painful, and if I forgot something, I'd either have to call for my wife to bring it to me or simply give up on it because the extra transfers to and from standing were too painful. There were times I wouldn't even bother getting up to eat, because the pain from hunger was so much less than the pain from the friction that happens when you're getting into or out of a seated position.

It's very liberating to have found a place where I can talk about that and have people understand, even if their DH wasn't in that particular spot. I think every DH sufferer can imagine what it would be like having broken, inflamed DH skin rubbing together and against clothing every time you move. There were days when I felt paralyzed by the pain - as though I was glued to my standing desk, because anything other than standing still meant bringing that 8/10 pain up to a 9 or 10, feeling like I must be the biggest wimp in the world for being so utterly controlled by "fissure pain" that other people seemed to be walking around with just fine.

[Wheatwacked]

"In general, eicosanoids derived from n-6 PUFA are proinflammatory while eicosanoids derived from n-3 PUFA are anti-inflammatory. Dietary changes over the past few decades in the intake of n-6 and n-3 PUFA show striking increases in the (n-6) to (n-3) ratio (~15 : 1)"  Health Implications of High Dietary Omega-6 Polyunsaturated Fatty Acids

Tomato, one cup, 145 mg omega 6, 5 mg omega 3. 

That is an omega 6 to omega 3 ratio of 48:1.  Optimum is 1:1.   Oh my!

Wheat flour is 21:1 and sweet potatoes are 17:1 while white potatoes are only 4:1.

[knitty kitty]

@newtonfree,

I'm glad you found a way to make peanuts edible.  Boiled peanuts in the shell are a big favorite in the Southeastern part of the U.S.  Boiled peanuts in the can are available.  I just don't like peanuts.

DH is pressure sensitive.  I have gotten DH blisters on the palms of my hands from pushing a grocery cart around.  I get DH underneath seams and elastic in clothing (waistband, leg openings of underwear, and bras).  So I know a bit of what you're going through.  Walking or shifting can be very painful indeed.   

I'm so glad you have the tools to cope with this now!   

Let us know how the Benfotiamine and Niacinamide work for you!

[newtonfree]

On 8/21/2023 at 10:57 PM, Wheatwacked said:

"In general, eicosanoids derived from n-6 PUFA are proinflammatory while eicosanoids derived from n-3 PUFA are anti-inflammatory. Dietary changes over the past few decades in the intake of n-6 and n-3 PUFA show striking increases in the (n-6) to (n-3) ratio (~15 : 1)"  Health Implications of High Dietary Omega-6 Polyunsaturated Fatty Acids

Tomato, one cup, 145 mg omega 6, 5 mg omega 3. 

That is an omega 6 to omega 3 ratio of 48:1.  Optimum is 1:1.   Oh my!

Wheat flour is 21:1 and sweet potatoes are 17:1 while white potatoes are only 4:1.

Huh, I thought I posted a reply but my phone must have glitched or something.

Thank you for the reminder of the link between omega acid ratio and inflammation. My whole life, I paid so much careful attention to nutrition due to being vegetarian/vegan, and omegas were a big part of that.

But with my elimination diet, I realize I went completely out of balance again. And I never worried "back then" about inflammation per se, because I was young and "didn't (realize I) have any inflammatory issues." But that's something to correct now.

I've been challenging increasing amounts of certified gluten-free hemp hearts (no lectins, thankfully), and haven't had any symptoms, and have introduced some gluten-free omega 3-rich oils. Adding the hemp is allowing me to reduce the amount of tofu I eat without risking going too low on protein. My local "rock star" bulk brand, which runs a gluten-free GMP facility and gets a massive number of their products tested and certified gluten-free by the Canadian Celiac association, has not only hemp hearts, but single-ingredient 50% protein hemp powder which I have ordered now that I know I tolerate the hearts themselves. I'll be using that in my smoothies now, to help reduce the tofu further. Hemp has about a 1:3 omega 3:6 ratio, so it doesn't "correct" a problematic overall ratio, but it provides a complete vegetarian protein with a balanced omega ratio, a ton of micronutrients, no FODMAPs and no lectins. During this initial healing stage, that's worth its weight in gold!

I've also switched from using boiled whole peanuts to a boiled slurry of defatted gluten-free peanut flour to reduce the omega 6 intake from those. It's going into the smoothies, so it's not nearly as gross as "boiled peanut slurry" sounds. Plus, I've discovered that boiled peanuts have an incredibly strong taste, so a little goes a long way.

I'm also doing a bit of research on chia seed lectins right now. I always loved chia, and that would be a great way to get more omega 3 back into my diet. I might try steaming or boiling them, but I haven't found a study quantifying their lectin content yet, and want to confirm adequate lectin destruction before I add them in.

In any case, thank you for reminding me of the importance of balancing my omegas. Juggling the gluten-free diet on top of my FODMAP and allergen elimination diet makes it easy to let my nutrition suffer in various ways. I'm optimistic though that the next few months will be the hardest - as my gut heals, there's a good chance I become better able to tolerate the FODMAPs that currently cause me problems, which will allow me to really crank up the variety in my diet.

On 8/22/2023 at 10:58 PM, knitty kitty said:

@newtonfree,

I'm glad you found a way to make peanuts edible.  Boiled peanuts in the shell are a big favorite in the Southeastern part of the U.S.  Boiled peanuts in the can are available.  I just don't like peanuts.

DH is pressure sensitive.  I have gotten DH blisters on the palms of my hands from pushing a grocery cart around.  I get DH underneath seams and elastic in clothing (waistband, leg openings of underwear, and bras).  So I know a bit of what you're going through.  Walking or shifting can be very painful indeed.   

I'm so glad you have the tools to cope with this now!   

Let us know how the Benfotiamine and Niacinamide work for you!

I totally forgot that boiled peanuts were a thing in the US, I was worried they'd be gross, but they're great! Although like I mentioned above, I've switched to boiling defatted gluten-free peanut flour into a slurry and using that in my smoothies, to cut down on the omega 6 content. A little goes a long way, it's really flavourful stuff! I'll probably use it in some Thai-style sauces in place of peanuts or peanut butter, since it lends a strong peanut flavour with more protein and less omega 6 that way.

And yes!! Pressure-sensitive!! I could tell that, if I hadn't been a doctor myself, my doctors would have been rolling their eyes when I told them I couldn't tolerate sitting, even on a donut pillow. Donut pillows increase the venous pressure in the hemorrhoidal veins, which causes swelling, and the extra swelling meant more pressure (from the inside) against my inflamed DH skin. It makes sense now, but at the time when it was "just fissures," I got the sense that they thought I was being dramatic, even though I always understated and underreported my pain. My wife, knew, though, because she'd see how I'd insist on standing, even to watch TV next to her, until my back or legs were so tired that I had no choice but to sit. I also stopped wearing jeans, due to the stiff seam down the centre of the seat, which would absolutely destroy me when sitting down. I even switched to using "shorts-like" bathing suits for going outside in all but winter weather, because I found a type with a seamless netting on the inside and no seam across the centre of the seat on the outside.

I'm so sorry to hear about your DH on your palms and under waist/bra bands, I can imagine exactly how much that would interfere with everyday life.

I'm a couple of days into my B vitamins, including benfotamine and niacinamide, and will keep you posted. I'm not expecting instant results, I know all too well that for inflammation that has been here this long, resolution will not be measured in days. But I'm happy to report that my gluten-free, modified AIP diet has me feeling better already. I no longer have the intense burning DH pain post-bowel movement that I've been used to, and that had gotten worse during my flirtation with tomato sauce.

I had a few days of feeling paralyzed by food anxiety, as I realized that I couldn't trust any of my staple ingredients I had been relying on lately (either due to gluten CC or high lectin content), and exhausted by the constant research into which foods, and which suppliers, were safe, but enough of my new staple gluten-free ingredients have now arrived that I'm able to cook more filling and nutritious meals. Part of the problem was that my local grocery stores had an absolutely dismal selection of truly gluten-free options. Almost nothing that was certified, and few suppliers who could reassure me as to their manufacturing practices when I contacted them (and boy did I ever contact a lot of food manufacturers these past couple of weeks!).

I'll give a big shout out to the Yupik brand, based in Montreal. Not "local" to me, but "local" as in Canadian and therefore quick and simple to have things shipped. They run a gluten-free GMP factory and test everything for gluten. They also go the extra step of getting everything gluten-free certified by the Canadian Celiac Association, and keep everything that contains gluten out of that factory (they have another one for those products). My wife suspects the owner either must be celiac or have a close family member who is. I've bought a ton of bulk single-ingredient stuff from them that I haven't been able to find (in certified/tested gluten-free form) in any of my city's grocery stores, from things I need for my recipes like cassava flour, millet and teff, to things I cook for my wife and not myself like dried beans and lentils. None of the dried beans or lentils in stores here come from gluten-free facilities or ones that test for gluten, but Yupik tests every single one and even bothers to get them certified.

Another shout out to Webber Naturals, a Canadian company that makes most of the vitamins I'm taking. I contacted them regarding the gluten-free claim on their web site, and they told me that they test every ingredient they bring in to their factory for priority allergens including gluten, and even named the brand of ELISA test kits they use. Then, after every production run, they do a full sanitization of their equipment and conduct tests of random points on the equipment, and random batches of the final products. They've also done independent validation studies on their cleaning procedures to confirm that they're sufficient to prevent cross contamination independent of the random testing they do to confirm.

That certainly made it easy. They make nearly every type of supplement that I currently use, from magnesium bisglycinate to B vitamins, so that took a huge amount of research off my plate. One of the only things they don't make is benfotamine specifically, but I found another Canadian supplier with similarly diligent practices for that one.

So I finally have my collection of vetted gluten-free supplements and cooking ingredients, and can focus on learning new recipes instead of furiously researching the raw ingredients themselves. Should be a lower-stress week ahead!

[newtonfree]

Had an interesting reaction I thought I'd post about.

In an effort to help rebalance my omega ratio, I decided to use some flaxseed cooking oil. What I didn't realize was that A ) my wife had opened it two months ago, and B ) she didn't realize the bottle said "refrigerate after opening."

It tasted only slightly bitter, but I've come to understand that any bitterness = rancidity. Now, rancid oil doesn't harbour dangerous bacteria like rancid meat, it just means the oil has been oxidized.

Oxidized oil is intensely pro-inflammatory, due in large part to high free radical generation. This free radical content consumes antioxidant B and E vitamins in the resulting oxidation reaction.

This is all stuff that makes sense to me on a basic science level, as someone with a physiology degree and an MD.

But what I wasn't prepared for was my clinical reaction. Keep in mind that I'm on a tight elimination diet where I'm not introducing new foods more than one at a time, so I have a very clear idea of what has changed whenever something evolves with my DH or GI celiac symptoms.

Within an hour of eating, I noticed my tastebuds were swollen and felt painfully inflamed. Running my tongue along the top of my mouth felt like I had mildly burned my tongue. Next, my sinuses and throat started burning the way they often do when coming down with a cold.

Within 4 hours, every muscle and joint in my body was aching. And by 6 hours, I had chills and a fever high enough to make me mildly delirious. My sinuses and throat were still burning, too.

That continued until I slept it off, and the next morning I felt about 50% better, even more so throughout the day. Two days later, 90% better.

I never had any nausea, GI upset, impact on bowel movements, mucus, cough, or any other symptom of a respiratory infection or food poisoning. All my symptoms were purely inflammatory and were either in places the oil had touched (mouth, throat) or were completely generalized (muscle aches, fever, chills). COVID test was negative, wife was asymptomatic, no known infectious contacts and I really hadn't recently seen anybody who'd have had the opportunity to get me sick.

Also, the next day, after my bowel movement, my DH was severely flared. Redness, papules, itching, burning - the works. My wife then noticed that my hairline lesions were back, along with new ones in my inguinal folds and on my chest. Worst DH flare I've had since starting the GFD.

I don't think it was gluten contamination of the oil, because I've never had any of those other symptoms with gluten. Heartburn? Sure. Abdominal cramps, gas, and diarrhea? Absolutely. But 12 hours of painful tastebuds, burning nasal passages, sore throat, fever and chills? Never. I was eating gobs of gluten mere months ago and those were never issues.

We're both doctors. With how fast the onset and offset were, and the total absence of bacterial or viral URTI or GI symptoms, it really looked like a purely inflammatory picture, and the DH flare makes sense in that context. If we want to be specific, it looked clinically like an IL-6 pathway response, which is one we are very familiar with (and is why COVID was our initial suspicion until it came and went in the blink if an eye).

Has anyone here with DH experienced anything like that? It certainly took me by surprise. I'm going to be extremely careful regarding the freshness of any oils from now on.

[Scott Adams]

Flaxseed oil itself is not considered to be a high-histamine food, but it can potentially cause histamine release in some cases due to factors like oxidation or contamination. Fresh flaxseed oil that is properly stored and processed is less likely to cause histamine-related issues. However, if the oil is improperly stored, exposed to heat, light, or air for prolonged periods, or if it's rancid, it might lead to higher histamine levels.

[newtonfree]

1 hour ago, Scott Adams said:

Flaxseed oil itself is not considered to be a high-histamine food, but it can potentially cause histamine release in some cases due to factors like oxidation or contamination. Fresh flaxseed oil that is properly stored and processed is less likely to cause histamine-related issues. However, if the oil is improperly stored, exposed to heat, light, or air for prolonged periods, or if it's rancid, it might lead to higher histamine levels.

Well, that certainly tracks with my experience. Thanks. Hadn't thought of histamine specifically.