Has anyone here had perianal DH?

[newtonfree]

Reaching out to see if anyone here has had a similar presentation with their DH. I'm 36 years old and finally have the answer to why I've suffered severe, sometimes crippling, pain my whole life. I have celiac disease. And more importantly, I have DH, which was the smoking gun that finally led to my diagnosis.

 

Starting just about as early as I have memories, I've had severe anal pain, worse with bowel movements, with a burning and itching quality. My "IBS" attacks made it much, much worse (which, of course, wasn't IBS). I sometimes had entire days when I had to avoid walking, bending over, or getting up and sitting back down as much as I could, as they'd send the pain soaring to a 10/10.

 

I was too embarrassed to tell anyone, or show anyone. And when I did start telling my doctor in my late teens, I was diagnosed with anal fissures from my IBS.

 

I even had C-scopes, with normal biopsies. Buy no G-scope, and no duodenal biopsy. But the thing the gastroenterologists could never explain was why I always had 1-2 fissures on scope, but they were always acute-looking. They never looked like chronic ones, even though at one point I had gone an entire year and a half without ever feeling like my fissures healed. They kept offering me surgery for my fissures, but I could never wrap my head around why that would help. If they didn't look chronic and non-healing, why would I cut out a chunk of my anus? And why wouldn't they just come back? They've healed before, but always came back within weeks at the longest.

 

It took this year and a half of constant, crippling pain without reprieve to finally be fully honest about my level of pain with my wife. And longer yet for me to agree for her to examine me.

 

Her comment after taking a look up close was, "I don't think this is about fissures."

 

When they scoped me in the past, I guess they assumed any skin "irritation" was from the prep, or nobody cared to ever think about the skin outside rather than inside.

 

I had swelling, redness, and skin breakdown on the outside. She started examining me daily so we could correlate it with my pain level and the various things we were trying to heal me. These weren't fissures. They looked more like skin ulcers and tears that, during flares, extended into the anal canal, as opposed to fissures, which start inside and only ever extend outside if they're bad ones.

 

We started various elimination diets while pursuing consultations with allergists and dermatologists. A low FODMAP diet helped with my abdominal pain and diarrhea, and with that, we eventually eliminated wheat because of the fructan content.

 

I started to heal for the first time in a year and a half, though incompletely.

 

And then, all the different angles came together at once when I saw the dermatologist - this was perianal DH, in a pattern she had not personally seen before, because it never involved skin more than a centimeter or so away from the anus.

 

Of course, she also found and asked me about my little hairline lesions that I had been told were seborrheic dermatitis. And the itchy little blisters I'd get from sun exposure on my hands that I was told was dishidrotic eczema. And the tooth sensitivity. And then she ordered some tests to confirm what she already knew, which was that I was celiac, because of course I am - this is DH.

 

I'm calling this the "best worst diagnosis of my life." I don't care that it's an incurable lifelong disease that will profoundly alter my lifestyle and the way I approach food. I'm just profoundly optimistic right now because, for the first time in my life, I know that this pain has definitive management. Cut out all gluten. I could not possibly be more excited to do so.

 

Already, after just a week of true gluten-free diet (but on the heels of months of a zero-wheat-on-the-label diet), my abdominal pain and diarrhea are under control, and my anal pain varies from 3-6/10 instead of 8-10/10. I also no longer have any broken skin in the region.

 

I guess I just wanted to share my story, I'm not sure what I'm looking for in terms of replies. I guess I'm wondering if anyone here struggled with perianal pain from DH? Is there any advice you can give me as I'm healing? My mind is still blown that the pain I've dealt with my whole life - carrying a two-decade-long label of anal fissures from IBS-D - was celiac the whole time. It feels like it was hiding in plain sight, now that I know what it is.

[Hopeful1950]

I suffered with up to 70% of my bod blistered, burning, itching and, like you, finally found a doc that would listen.  In my experience, no place on the body is exempt from DH.  I think its favorite breakout place is different for each person. 

I am so glad you found a solution.  I can't imagine how much you have suffered with the devil DH in such a sensitive area.

[newtonfree]

You think you can't imagine how much ai've suffered when you've had up to 70% of your body affected?!?

My dear, I think you know exactly how much I've suffered.

But thank you for the sentiment nonetheless. It's very validating to hear that everyone has a different "favourite" place to break out. Mine was just, unfortunately, out of sight from doctors, both literally and metaphorically.

In retrospect, I now understand why I struggled to walk some days. I always had trouble finding accounts of people whose fissures were so sensitive to movement. It's because it wasn't an internal wound, it was external, and walking meant friction.

Full credit to my wife for insisting on getting up close and personal with it in a way doctors apparently hadn't. I figured with experts having looked at it, there wasn't much to be gained by doing so. How wrong I was! She's the first person who said, "we need a dermatologist." Gastroenterologists and surgeons don't consult dermatologists for "fissures" too often, I imagine, and they were so sure they knew what we were dealing with.

[Jacki Espo]

I have undiagnosed DH on stomach/back and at its worst legs, elbows and scalp.  I had already eliminated gluten so didn't test positive for celiac disease.  However, I can tell you that after a year of wheat free (8 months truly gluten free) the DH miraculously disappeared.  Avoid oats like the plague.

Hoping it gets better for you soon.

[Wheatwacked]

13 hours ago, newtonfree said:

incurable lifelong disease

Hi newtonfree. Welcome the the forum.  "Good" story.  Happy ending. There is lots of info on DH in posts, blogs and articles.  I like to think of it as a lifelong challange to avoid being poisoned.  Is smoking a disease or poison?  Same kind of thing. Not smoking AND avoiding second hand smoke (cross contamination). In disclosure I still smoke a pack a day and like it.  All the symptoms automatically blamed on smoking and drinking in my life went away with those wheat, rye and barley grains.

Remember that for every food you used to eat but now don't you are losing it as a vitamin and mineral source so they need to be replaced.  And don't discount that the western carbohydrate based diet, even without gluten, is inherently inflammatory.

Is your wife going GFD with you?  It would be a good idea and she may gain some unrealized benefits.  At least for the first few healing months it would be better for you.

Almost every one with Celiac has low vitamin D so get your 25 hydroxy vitamin D level tested and raise it to the real homeostasis level of 80 ng/ml.  The books say 29 mg/dl is sufficient, within normal limits (WNL) but our bodies can't read, Joke is on us.

[newtonfree]

Thanks for the tip regarding oats, Jacki, I've quickly come to suspect that I'm one of those oat-sensitive celiacs, even the gluten-free-free kind. Whenever I eat them, I get my "reflux pain" within minutes, which I now realize must be esophageal inflammation.

I never understood why before, but I complained of heartburn even as a little kid, and some "low-acid" foods always made me feel horrible. Oatmeal and granola bars always did it, even when I bought gluten-free oats by accident in the past. Before the celiac diagnosis, there were certain foods I always complained about, like my wife's favourite baked fries. After my diagnosis, during our label-checking party, she realized the fries are coloured with caramel. I always told her they felt like they scraped their way down my esophagus, no matter how much water I drank with them. Apparently my esophagus is my early warning system for when I've been glutened!

So oats are definitely out. What sucks is that my favourite soap was aveeno - but I'm no longer using it. Not chancing anything that could possibly drag out the agony my DH has caused. I'm even cutting out gluten-free products that aren't lab-tested at this point, because my priority is healing. Once I hit my new baseline, I'll consider slowly trying non-lab-tested gluten-free foods. I just want to take this completely seriously right now. No amount of convenience or taste is worth prolonging this 3 decade-long DH saga. I don't even care about the diarrhea and esophageal pain compared to the DH pain (though I'll celebrate the end of those too).

2 minutes ago, Wheatwacked said:

Hi newtonfree. Welcome the the forum.  "Good" story.  Happy ending. There is lots of info on DH in posts, blogs and articles.  I like to think of it as a lifelong challange to avoid being poisoned.  Is smoking a disease or poison?  Same kind of thing. Not smoking AND avoiding second hand smoke (cross contamination). In disclosure I still smoke a pack a day and like it.  All the symptoms automatically blamed on smoking and drinking in my life went away with those wheat, rye and barley grains.

Remember that for every food you used to eat but now don't you are losing it as a vitamin and mineral source so they need to be replaced.  And don't discount that the western carbohydrate based diet, even without gluten, is inherently inflammatory.

Is your wife going GFD with you?  It would be a good idea and she may gain some unrealized benefits.  At least for the first few healing months it would be better for you.

Almost every one with Celiac has low vitamin D so get your 25 hydroxy vitamin D level tested and raise it to the real homeostasis level of 80 ng/ml.  The books say 29 mg/dl is sufficient, within normal limits (WNL) but our bodies can't read, Joke is on us.

Thanks for the reminder - I'm Canadian and have always tested low for Vit D. Blamed it on the latitude, which doesn't help. Will request retesting regularly until I'm where I need to be. I'm currently supplementing aggressively but can't assume that's working until I see normal lab results.

And yes, my wife is going GFD in the house with me. I didn't even ask, she immediately said she was doing it as soon as I was diagnosed. She's seen firsthand what I'm dealing with and says she doesn't ever want to risk being a source of contamination. Bless her heart, she's a keeper. She'll only be eating gluten outside the house when it doesn't pose a risk to me.

Regarding the disease definition, I can see your perspective regarding that. But regarding the smoking analogy, the first thing they teach in AA/AlAnon is that addiction is a lifelong disease, and an alcoholic who hasn't drank in 10 years is still an alcoholic, and has to take extra steps to make sure they stay sober. I guess I'm taking that perspective with gluten. Even if I'm gluten-free and symptom free for a decade some day, I'll still be celiac and will need to avoid non-gluten-free restaurants the way an alcoholic has to avoid bars. What they serve will make me sick, even if others can enjoy it without the same consideration.

But back to nutrition - a very good reminder. I've been extremely tuned in to micronutrient needs because my progressive elimination diet for "IBS" has been highly restrictive and I've been worried about it. Even found out my favourite multivitamin has barley grass in it for some reason, when my wife and I started looking at the ingredients of everything post-diagnosis. I've been relying somewhat on smoothies from a Canadian brand called Subi, which are made from whole fruit and veg that they freeze dry and grind themselves and have a near-multivitamin level of many nutrients, and they claim to be gluten-free. I've contacted the company to check whether they lab test for gluten. Their web site says they "lab-test each batch four times," but they don't specify which tests. They make several claims like being heavy metal-free, so for all I know, that's the testing they're talking about.

I'll know soon enough, they're a small company and have answered my questions quickly in the past regarding the sources of their ingredients. Their smoothie mix never gives me esophageal pain or diarrhea, which most protein powders have in the past, so I suspect it may be safe. I'm hoping to stop relying on the smoothies for micronutrients as my gut heals and I hopefully become tolerant on FODMAPs again. I also realize that many of the food intolerance I blamed on FODMAPs may have simply been gluten - I'm reading that legumes like lentils are often CC'd in processing, which might explain why I reacted to them even when cooking my own from the "pure" dried form.

I'll be challenging all those high-FODMAP foods again after a couple of months of true GFD, from certified gluten-free sources, and am really optimistic that I might regain much of the variety I've lost recently in my diet. I see that pretty much all the dried beans and lentils I could ever want are available here from the Yupik brand, which has gotten them individually tested and certified by the Canadian Celiac Association, so I can't wait to try them.

I'm also very happy to hear recommendations for multivitamins and supplements to bridge the gap until I can improve the quality of my diet, though. I don't like relying on supplements over whole foods, but I view this as a temporary narrowing of my diet as I heal and learn the ins and outs of gluten-free cooking, and recognize that supplementation is my friend right now.

 

[Jacki Espo]

I learned about the oats from this website!  I was in the midst of a DH flare up.  My entire body was itching so intensely and by some miracle I read a post on this forum that said to avoid oats even "gluten-free" oats.  The DH didn't go away after I gave up oats but the flare up got about 75 percent better. Months later the DH is finally gone.  

[Hopeful1950]

13 hours ago, newtonfree said:

You think you can't imagine how much ai've suffered when you've had up to 70% of your body affected?!?

My dear, I think you know exactly how much I've suffered.

But thank you for the sentiment nonetheless. It's very validating to hear that everyone has a different "favourite" place to break out. Mine was just, unfortunately, out of sight from doctors, both literally and metaphorically.

In retrospect, I now understand why I struggled to walk some days. I always had trouble finding accounts of people whose fissures were so sensitive to movement. It's because it wasn't an internal wound, it was external, and walking meant friction.

Full credit to my wife for insisting on getting up close and personal with it in a way doctors apparently hadn't. I figured with experts having looked at it, there wasn't much to be gained by doing so. How wrong I was! She's the first person who said, "we need a dermatologist." Gastroenterologists and surgeons don't consult dermatologists for "fissures" too often, I imagine, and they were so sure they knew what we were dealing with.

I don't know if any of your medical professionals have told you or not, but when DH antibodies are deposited in your skin, some of them blister fairly soon after gluten exposure, BUT some of them just sort of hang around waiting to blister.  Eventually they are absorbed (after approx 10 years) if they don't blister.  It is so frustrating because you can be doing everything right and boom a patch will appear and it is really hard to determine when contamination might have occurred.  Any time gluten is accidentally consumed the 10 year clock is re-set. 

Wishing you all the best with your recovery.

[Scott Adams]

You may also need to avoid foods high in iodine, as this causes flare up in some people with DH. These foods can include seafood, seaweed, dairy, etc.

[newtonfree]

2 hours ago, Jacki Espo said:

I learned about the oats from this website!  I was in the midst of a DH flare up.  My entire body was itching so intensely and by some miracle I read a post on this forum that said to avoid oats even "gluten-free" oats.  The DH didn't go away after I gave up oats but the flare up got about 75 percent better. Months later the DH is finally gone.  

I'll be thrilled if this is gone in months. I will keep my fingers crossed!

2 hours ago, Hopeful1950 said:

I don't know if any of your medical professionals have told you or not, but when DH antibodies are deposited in your skin, some of them blister fairly soon after gluten exposure, BUT some of them just sort of hang around waiting to blister.  Eventually they are absorbed (after approx 10 years) if they don't blister.  It is so frustrating because you can be doing everything right and boom a patch will appear and it is really hard to determine when contamination might have occurred.  Any time gluten is accidentally consumed the 10 year clock is re-set. 

Wishing you all the best with your recovery.

Thanks for the well wishes and the information. They had told me "months to years for full resolution" but not the specifics about antibody deposition.

The fact that I got significantly better after several months of "wheat-free" but not GFD makes me optimistic that it won't take 10 years before I'm happy with how I'm feeling, but it's good to know that there's such a big window for a flare to recur. Honestly, I'm perfectly fine with "occasional and hopefully small flares" compared to my previous life of "never-ending and crippling flares." But I'll have to set that as my expectation now.

29 minutes ago, Scott Adams said:

You may also need to avoid foods high in iodine, as this causes flare up in some people with DH. These foods can include seafood, seaweed, dairy, etc.

Thanks for mentioning this, I had read about that. I don't eat seafood (lifelong vegetarian and Ashkenazi Jew, so I was predisposed to avoiding shellfish and sushi as well as being predisposed to celiac!). I'm also reading that millet specifically hinders iodine absorption to some extent, so maybe I'll include that on days when I'm having eggs or other relatively rich sources of iodine. I just need to make sure I don't get deficient and give myself a goiter!

[Wheatwacked]

Stick to the foods on this list for a while.  Products allowed/disallowed in the Gluten Contamination Elimination Diet.  Sorry but millet is first in the do not eat chart. 

Folic Acid, Vitamin A, and Vitamin E, potassium are best gotten from whole foods.  They have been inked to increased cancer over placebo.  Why take the chance?  One example:

Quote

Carotene and Retinol Efficacy Trial (CARET) included 18,314 male and female current and former smokers...The trial was ended prematurely after a mean of 4 years, partly because the supplements were unexpectedly found to have increased lung cancer risk by 28% and death from lung cancer by 46%; the supplements also increased the risk of all-cause mortality by 17%.    

The FNB [Federal Nutrition Board] has not established ULs for beta-carotene and other provitamin A carotenoids. However, the FNB advises against the use of beta-carotene supplements for the general population, except as a provitamin A source to prevent vitamin A deficiency.  https://ods.od.nih.gov/factsheets/VitaminA-HealthProfessional/

Keeping Gluten free is really not that much diferent from keeping kosher.

Bubbies' (Canadian brand) and Batampt Kosher Dill Pickles are the only ones I have found fermented, not made with vinegar (quick pickle method).  They are a good source of beneficial gut Lactobacillus, which in exchange for room and board excrete Lactase, thus giving us the ability to digest the lactose in milk.   I've taken to eating them with a glass of Half and Half.  Lots of calcium, potassium, magnesium while Half and Half only has 12 carbs per 360 ml glass.  My inspiration was from those old sitcoms where the pregnant wife wants pickles and ice cream at odd hours.

 

• 10,000 IU vitamin D to control autoimmune, mental and bone health.
• 500 mg Thiamine - neurologic symptoms, subclinical Beriberi.
• 500 mg Nicotinic Acid - increase capillary blood flow
• 500 mg Pantothenic Acid - creates energy from glucose Krebs Cycle
• 1000 mcg B12 - creates hemoglobin for oxygen transport
• 500 mg Taurine - essential amino acid, a powerful antioxident that we make indogenously so it is officially labeled "Conditional Essential" as Choline used to be, but not enough when sickness increases inflammation. reduces Reactivite Oxygen Species (ROS are are free radicals.).  Protective effects of taurine against inflammation, apoptosis, and oxidative stress in brain injury
• 1000 mg vitamin C - antioxidant
• 840 mg Phosphatidly Choline - essential for fat digestion, mitochondria, fatty liver.
• Iodine - muscle tone, testosterone, thyroid health, slow healing.  I eat Nori and Kelp.

 

9 hours ago, Hopeful1950 said:

Eventually they are absorbed (after approx 10 years) if they don't blister. 

I think this explains the DH iodine flare up.  The immune system goes after the defective cells that have Celiac antibodies.  I wonder if high enough vitamin D would help ameliorate the effect while clearing the DH?  There doesn't seem to be any research on this.  Your dermatologist seems knowledgeable.

Why You NEED Iodine - Discussion with Dr. David Brownstein ...

[newtonfree]

1 hour ago, Wheatwacked said:

Stick to the foods on this list for a while.  Products allowed/disallowed in the Gluten Contamination Elimination Diet.  Sorry but millet is first in the do not eat chart. 

Interesting...but isn't that chart based on overall industry trends? I have a specific millet source that is lab tested and certified gluten-free by the Canadian Celiac Association. Same for buckwheat and teff. I wouldn't think that a CCA certified source (gluten-free facility with regular audits and direct product testing) would still be excluded as a suspected source of contamination.

[Wheatwacked]

It was actually developed for patients who are diagnosed with Refractory Celiac.  The idea I think is to remove all sources of contamination.  Start worse case senario and it will get easier.  Like 40 years in the desert.  I think do it for a month, get a baseline and add your foods back as you tolerate.  When my just weaned son was diagnosed (biopsy) in 1976 he was put on Nutramigen Formula completely hypoallergenic, full nutrition.  In about 6 months he was fully recovered and started on GFD.  We don't recover as fast because we let our ego interfere with the healing process.

 

[Scott Adams]

12 hours ago, newtonfree said:

Interesting...but isn't that chart based on overall industry trends? I have a specific millet source that is lab tested and certified gluten-free by the Canadian Celiac Association. Same for buckwheat and teff. I wouldn't think that a CCA certified source (gluten-free facility with regular audits and direct product testing) would still be excluded as a suspected source of contamination.

If it is certified gluten-free you should be fine.

[newtonfree]

12 hours ago, Wheatwacked said:

It was actually developed for patients who are diagnosed with Refractory Celiac.  The idea I think is to remove all sources of contamination.  Start worse case senario and it will get easier.  Like 40 years in the desert.  I think do it for a month, get a baseline and add your foods back as you tolerate.  When my just weaned son was diagnosed (biopsy) in 1976 he was put on Nutramigen Formula completely hypoallergenic, full nutrition.  In about 6 months he was fully recovered and started on GFD.  We don't recover as fast because we let our ego interfere with the healing process.

 

Ah, I see what you're saying now. Starting at the safest possible point for a month to facilitate initial healing, then broaden. I will take that under serious consideration. To be honest, my current diet pretty much resembles what is listed there - I had been on a very narrow elimination diet at the time of diagnosis, as my doctors and nutritionist were working through the possibilities including various food allergies, IBS, etc. So I was already low-FODMAP, no wheat, and no dairy at the point where I eliminated hidden gluten.

It's funny, because the diagnosis of DH and celiac actually made me excited at the prospect of being able to broaden my diet. In retrospect, just about every single "food challenge" I failed in the last few months had hidden gluten in it, either overtly on the label (like malt extract) or from likely contamination (like grocery store lentils).

But I haven't broadened yet - my wife and I have been working hard reading gluten-free recipes and finding certified gluten-free sources of whole foods to use in them. I already ate very few processed foods but am taking zero chances with processed/prepackaged gluten-free products, at least for now. I love to cook and haven't been able to try anything new for many months due to my elimination diet, so I've been excited to try all the new things like millet/buckwheat/teff. But it was going to take me some time to procure the ingredients anyway, so maybe I'll slow my roll like you suggest.

 

27 minutes ago, Scott Adams said:

If it is certified gluten-free you should be fine.

Thanks, that was my thinking as well. Our focus moving forward is on building a new pantry of certified gluten-free whole foods and planning out recipes with sustainability and nutrition in mind. I've been on such a narrow diet for so long now that I don't want to rush and introduce too many new things at once. The plan is to slowly introduce one new (certified gluten-free) ingredient into our cooking at a time and give it a few days to declare whether it's being tolerated or not, starting with a small quantity and working our way upward.

It'll be a slow and methodical broadening of my diet, but I want to heal, and I want to feel confident that every ingredient I've tested out can be incorporated into future recipes without hesitation. It's been exhausting challenging one food at a time, having a flare, and waiting a week for it to settle before trying the next thing. At least now I know what was connecting all the seemingly unrelated dots, so it feels much less like taking a shot in the dark each time.

[knitty kitty]

Hi, @newtonfree,

I followed the Autoimmune Paleo Protocol diet which excludes all grains, pseudo grains, ancient grains, legumes and pulses.  These are full of difficult to digest plant lectins.  By removing these irritating lectins, the gastrointestinal tract can heal faster and easier.  

Those undigested plant lectins can promote Small Intestinal Bacterial Overgrowth (SIBO) and inflammation.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1115436/

The AIP diet cuts out nightshades (potatoes, tomatoes, peppers, and eggplant) as these contain glycoalkaloids that promote Leaky Gut Syndrome.  I also chose low histamine foods to help lower high histamine levels (helps histamine intolerance and Mast Cell Activation Syndrome).

Dr. Sarah Ballantyne, Celiac herself, developed the AIP diet and wrote The Paleo Approach.  It has been a lifeline for me and changed my health dramatically.  

Yes, the AIP diet is pretty bare shelved, but it allows your body time to heal without the burden of foods that promote inflammation. 

I tried lots of different alternative grains and would still have symptoms, and, like you, thought these must be cross contaminated.  But they weren't contaminated.  After being on the AIP diet for several weeks, I could tolerate them (from the same packages I got sick on) without symptoms.  They weren't cross contaminated.  My system was too messed up to deal with them.  Think of having a rug burn or skinned knees down your digestive tract.  Takes time to heal.  Give yourself time to heal.  

Best wishes for your journey!

Edited August 18, 2023 by knitty kitty
Typo correction

[Jacki Espo]

34 minutes ago, knitty kitty said:

Hi, @newtonfree,

I followed the Autoimmune Paleo Protocol diet which excludes all grains, pseudo grains, ancient grains, legumes and pulses.  These are full of difficult to digest plant lectins.  By removing these irritating lectins, the gastrointestinal tract can heal faster and easier.  

Those undigested plant lectins can promote Small Intestinal Bacterial Overgrowth (SIBO) and inflammation.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1115436/

The AIP diet cuts out nightshades (potatoes, tomatoes, peppers, and eggplant) as these contain glycoalkaloids that promote Leaky Gut Syndrome.  I also chose low histamine foods to help lower high histamine levels (helps histamine intolerance and Mast Cell Activation Syndrome).

Dr. Sarah Ballantyne, Celiac herself, developed the AIP diet and wrote The Paleo Approach.  It has been a lifeline for me and changed my health dramatically.  

Yes, the AIP diet is pretty bare shelved, but it allows your body time to heal without the burden of foods that promote inflammation. 

I tried lots of different alternative grains and would still have symptoms, and, like you, thought these must be cross contaminated.  But they weren't contaminated.  After being on the AIP diet for several weeks, I could tolerate them (from the same packages I got sick on) without symptoms.  They weren't cross contaminated.  My system was too messed up to deal with them.  Think of having a rug burn or skinned knees down your digestive tract.  Takes time to heal.  Give yourself time to heal.  

Best wishes for your journey!

Thanks so much for this.  Agree that the anti-inflammatory diet has worked best for me.  

[knitty kitty]

@Jacki Espo,

I'm glad you found a diet that works for you.

I want to clarify this is the AutoImmune Paleo Diet.  It is different from an anti-inflammatory diet, although both are beneficial.  

Remember to provide your body with the eight essential B vitamins.  When we cut out bread and such stuff, we cut out the vitamins added by the manufacturers.  Additional Thiamine Vitamin B 1 in the form called Benfotiamine is beneficial.  Benfotiamine has been shown in research studies to promote healing in the intestines.  

Edited August 19, 2023 by knitty kitty
Typo correction

[newtonfree]

Knitty kitty,

I respect and appreciate you sharing your experience, but definitely can't start off with any kind of paleo diet. I'm a lifelong vegetarian and cannot imagine the amount of nausea I'd experience trying to get a day's worth of protein from meat. Would have a heck of a time discerning celiac disease symptoms from the anxiety and nausea the meat would cause!

I'm already on a decently anti-inflammatory diet as part of my pre-diagnosis elimination diet due to my (hopefully celiac disease-induced) FODMAP sensitivity and some established food allergies like dairy.

Interesting point you brought up about nightshades though - I hadn't figured out the mechanism, but I had already established that both bell peppers and tomatoes were an issue for me, and I don't currently eat any potatoes (or legumes, outside of some firm gluten-free tofu). And actually, reading up on it now, I am reading that the lectins in tofu are deactivated after 10 minutes at 100°C, and I bake my tofu at a hotter temp for a longer time than that. So I suspect that I'm as close as I can probably get to that diet while still remaining vegetarian. I will definitely take a look at it in detail though to see if it correlates with my experiences thus far, and if any further lessons can be learned from it without going omni.

My plan was to wait to challenge any whole legumes until at least three months in to my GFD, since they're high FODMAP and I know I've had issues with FODMAPs themselves. Hopefully, like you've experienced, some time on the gluten-free version of my current elimination diet will facilitate a quicker return to tolerating a variety of foods.

[knitty kitty]

@newtonfree,

The Paleo Approach  by Dr. Sarah Ballantyne has information about a vegetarian version of the AIP diet.

 

[newtonfree]

12 hours ago, knitty kitty said:

@newtonfree,

The Paleo Approach  by Dr. Sarah Ballantyne has information about a vegetarian version of the AIP diet.

 

OK, so I'm sorry if I seemed a little hostile in my last reply, I had been reading stuff on lectins & paleo from Dr. Gundry and getting enraged by his quackery, but Dr. Ballantyne makes for a delightful and insightful read.

I hadn't mentioned it yet, but both my wife and I are physicians with research backgrounds (just not GI, which is maybe why my celiac disease diagnosis evaded us for so long). Dr. Gundry's writing smacks of pseudoscience and scientific illiteracy, but Dr. Ballantyne's scientific literacy was immediately apparent to me, which makes total sense given her background and credentials.

Reading her work, I'm connecting a whole bunch of dots, including regarding my wife. While she has never been diagnosed with celiac disease, she carries a high-risk genetic marker for it and has suffered from gastroparesis, SIBO, and several other GI issues.

She has overt and immediate reactions to a bunch of seemingly unrelated foods - but they're all high in lectins. All nightshades, except thorough cooked potatoes without the skins. Corn. Commercial/undercooked legumes*.

*I found an amazingly informative article published in November 2021 on lectins and cooking. They showed that a 12-hour soak and 30-minute boil of legumes, 15-minute boil of white rice, and various other cooking methods totally eliminated all detectable lectin activity in all of the foods other than tomatoes, chicken peas, and unripe elderberry.

And guess what? My wife had to cut out tomato due to it triggering rosacea ever since her SIBO (which cleared with doxycycline). And she gets stomach aches with hummus no matter the preparation. She gets worse gastroparesis and nausea with canned or restaurant black beans more so than pinto (black beans have double the lectin content, and canned beans are not soaked and boiled as thoroughly as the experimental protocol). But she has zero symptoms with my red lentil sauce, which I make with homemade carrot (lectin free) puree and home-cooked lentils (soaked, boiled X 45 mins, then cooked for two hours in the sauce).

So THANK YOU for pointing us toward this!! She is going gluten-free with me (her last bowl of wheat pasta caused a week-long flare of gastroparesis in retrospect) and we are adopting our own version of the AIP for my recovery period and probably forever afterward for her.

The thing I think Dr. Ballantyne is missing a bit is the part about cooking and lectin inactivation. Millet is nixed by paleo in general, but is a lectin-free grain. Nightshades are nixed, but potatoes contain most of their lectin in their skin and have the rest inactivated by thorough cooking - so baked and skinned potatoes and skinned, thoroughly boiled and mashed potatoes would be fine, but potato flour, starch and flakes used in dishes that aren't cooked so thoroughly would be an issue. Brown rice is high in lectin, but white rice boiled for 15 mins has no lectin activity - and my wife suffers horrible cramps with rice noodles (cooked for 3-5 minutes) but zero symptoms with sushi rice (boiled for 15).

We are reading all this and realizing that she is a "lectin detector" the way we joke that I'm a "gluten detector." I feel intense heartburn while eating anything containing gluten - I complained intensely pre-diagnosis about her favourite French fries feeling like they scraped my esophagus all the way down, which turned out to contain caramel colour from barley - and she feels intense nausea, bloating and reflux from her gastroparesis immediately after eating something containing lectins. The fact that undercooked (canned) legumes do this to her but has no issues with my "overcooked legume mush" sauces and stews really reinforces the conclusions put forth by that Danish article that many lectin-containing foods are rendered immunologically inert by thorough cooking.

With this in mind, we are able to now plan a "modified AIP gluten-free" diet that incorporates my vegetarianism. She isn't vegetarian, which makes things easier for her, but I just can't do beef, chicken, pork, or shellfish. I may relax my restrictions and try some (unprocessed) fish during my recovery period, to help make sure I'm getting the nutrition I need.

But the fact that you benefitted from the AIP diet and were then able to tolerate some lectins really makes sense from a pathophysiological perspective. Dr. Ballantyne has Hashimoto's thyroiditis, and therefore is always struggling with consequences of autoimmune inflammation. Celiacs who have healed on a GFD no longer have active inflammation, so the leakiness of the gut would be resolved, and lectins would no longer pose as much of an issue. The fact that so many symptom-free and scope-confirmed recovered celiacs have lots of corn in their diets (especially in gluten-free baked goods) suggests that dietary lectins pose less of a longterm issue than they do for, say, people with Crohn's or UC.

My grandfather suffered his whole life with life-threatening Crohn's, having a total colectomy as a young man and living another 50+ years with intermittent flares of various intensity in his small bowel. I wish we had known about the AIP when he was alive. I can't help but wonder whether his suffering might have been lessened.

I also can't believe that something with the word "paleo" in it has scientific validity. That was my initial bias; I do not believe any of the quackery that led to its name, like the "this is what we evolved to eat" argument. Infant and obstetrical mortality rates and deaths from accidents, predation and infection limited our lifespans during the "unimpeded natural selection" phase of human history far more than nutritional deficiencies or chronic illness. But Dr. Ballantyne's personal experience and her take on primary literature is completely legit.

I just think that using the paleo diet as her starting point (and coming to it initially from a low carb/weight loss perspective) has biased her against the possibility that several of the foods she's ruled out could, in fact, be healthy.

Take chickpeas, for example. The Danish study showed that standard legume cooking fails to fully inactivate their lectins, but a 2018 study found those very lectins to have potent anti-cancer effects on breast cancer cells in vitro. Not all lectins may be bad, and not all lectins survive cooking, so ruling out foods as pro-inflammatory or anti-nutritive based on the fact that they "contain lectins" is not good science. It's based on several major assumptions.

But, conversely, that Danish study on lectin content of common foods before after cooking is far more recent than the AIP itself, and I can understand why someone who has experienced a life- and career-changing benefit to a specific approach might be slow to divert course.

This is all giving me so much to think about. It's a bit overwhelming, frankly, on the heels of my celiac disease diagnosis. But I'm sincerely grateful to you for pointing me in this direction. For all I know, five years from now, I'll be publishing my own book on lectins and celiac disease.

Also, I'm making my wife go get a more thorough workup and a scope, because she's improving dramatically on our shared GFD, quicker than I am, and has that genetic marker for celiac risk. She just had a negative screening anti-TTG years ago and accepted that as having ruled out celiac disease. So did I, for the record, but we now know it had been a false negative. Actually, come to think of it, we both had it drawn together at the same lab about a decade ago after our back to back appointments with our GP. For all I know, the lab we used had an expired reagent or a new tech that day who screwed it up, because hanging my hat on that negative anti-TTG prolonged my suffering by a full decade.

It feels like lightning couldn't possibly strike twice, and we both turn out to be celiacs with negative screening anti-TTGs, but we're the same high-risk ethnic group and we had the test done on the same day at the same lab, but whether it's celiac disease, NCGS, gluten intolerance or something else, she's definitely had chronic symptoms that differ from mine but fit the overall profile, and is improving on a GFD. She'd better get a workup before she's been on it too long for the tests to be valid.

 

 

[knitty kitty]

@newtonfree,

Thank YOU so much for keeping an open mind and for validating the Autoimmune Paleo diet!  

I've a degree in Microbiology, and have taken as many nutrition classes as were available at my university.  The connection between what happens on a cellular level within our bodies and  essential nutrients from our diet is intricately woven together.  

For your book, you might be interested in the research articles I have found. I keep many in my blog along with excerpts from my journey.  

I am so pleased that this information has helped you.  I'm thankful I can be a conduit.  

Best regards.  Keep us posted on your progress!

[knitty kitty]

P. S.  Thought you would be interested in this article, too...

Loss of food nutrients orchestrated by cooking pots: a common trend in developing world

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8249525/

[newtonfree]

25 minutes ago, knitty kitty said:

P. S.  Thought you would be interested in this article, too...

Loss of food nutrients orchestrated by cooking pots: a common trend in developing world

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8249525/

An interesting study. It makes me recall the efforts to get women in developing nations to cook with a  "Lucky" iron fish to combat iron deficiency. They handed them out for free and shaped them like fish because of positive associations across many cultures between fish, luck, and health. The fish slowly leeches iron into any dish, especially acidic ones.

It makes sense to me, then, that the metal or alloy in contact with the food alters its nutritional content in other ways.

I don't want to get too off-topic though. I'll have to take a look at your blog and chat to you about it elsewhere.

But for the purposes of this thread, I can say that I'm definitely on board the low-lectin train; I'm just going to use some principles we follow in evidence-based medicine and tweak some of the "Level IV" evidence in the AIP (anecdotal and expert opinion) with some "Level III" evidence (descriptive studies). I'll only include foods that test negative for lectins raw, or have been cooked according to methods validated by studies like the Danish one to have fully inactivated them. I'll have to begin a broader literature review immediately to see whether I can find any others that have tested specific cooking methods with specific foods.

And circling back around to my DH: I tried adding back a small amount of tomato the last few days, and had a mild flare of my DH (both scalp and perianal), with a very small skin tear yesterday that has already healed; my first in two weeks. No other new or different foods in that time span, no suspected source of gluten and no source of increased iodine. I can't say definitively that it was the lectin content, but it supports that hypothesis and it's certainly convinced me to keep fully away from tomato and peppers until I heal.

[knitty kitty]

 I have a lucky iron fish! 

Yes, keep us apprised of your findings!