Grover's Disease: What works to help find relief?

MarriannJ- I don't want to overly concern you but just get you thinking about the pea based protein powder. It may not be the perfect food for us with GD. I am not a nutritionist, just a fellow eczema sufferer who is always searching for knowledge about our chronic disease.

Your diet is limited and you must eat something so you may wish to ignore this information. I have cut down on pea based foods, but refuse to give up totally as I am doing so well right now I had the hair food sensitivity test which showed me sensitive to legumes and veggies in the pea family. Blood testing has also shown I have multiple metal allergies. Cilantro is a heavy metal detox so wonder if that is why it has worked to stall my last re-occurrence with GD. Peas are known to contain metals, just like many other veggies because metal is natural and is in soil and plants pick it up. I looked up the Vega veggie protein powder and it was rated one of the highest veggie protein powders on the market for containing heavy metal. I still eat peas about once every 2 weeks and snap peas also about every 2 weeks. Other protein powders are out for us like dairy based Whey (I know I don't digest whey as it gives me gas within an hour) and also out are Soy based protein powders are very high in heavy metals and all legumes make me gassy. Peas do not. I believe the cilantro is detoxing the heavy metal from my occasional pea ingestion. Yet if you are taking in pea daily,could that be overloading you with metals?

@gardeningjunkie Wow! I just bought a new can! I have gone through 3 or 4 cans of the protein powder so I don't think it is affecting me in a bad way, or the cilantro is neutralizing it. I guess I can just skip it altogether and just eat more protein. Thank you for the advice.

Maybe just use it once a week. Previously I asked my allergist about foods and metal allergies. He said when eating foods that contain metals we don't absorb that much.I can't have metal in knee replacement because that would be in constant contact 24/7 and my ACD allergies would reject it. With foods most of the metal passes though. Yet we do know heavy metals do accumulate over time in our bodies. Most foods contain metals,as I mentioned, metal is a natural element and in soil and unavoidable, yet we have to wonder- what is the accepted amount to ingest and are people like you and me accumulating in our bodies more than for others? Or are we just more sensitive to what should be a normal amount of metal.
I had been thinking my GD might be starting up, getting an itch in the small of my back torso without the little rash bumps for several weeks, but now I don't think it is GD. Today itch far better. I have made 2 changes, but will share later once I know for sure these changes are the reason. We are always experimenting with ourselves.

Hoping for success

So thankful

That is a liquid with a Dropper. I think I ordered it from the hallelujah diet company. Anyway, I am still drinking the fresh every day! Getting used to it😊.

Hi all! Just another follow up. I am Still having issues with "hives". The Doctors tell me it's not part of Grover's but it started around the same time. I have been to allergists and had every test imaginable and am not allergic to ANYTHING. I have gone on the Auto Immune Solution Diet which is a REALLY restrictive elimination diet for a month..Basically just meat, veggies and fruit. No dairy, no sugar, no legumes, no alcohol, no caffeine, etc. It was awful and it did not change a thing! I have now been itching for over a year almost non stop. The red bumps and SEVERE itching went away after Cilantro in March, but the hives-like rash has remained (with the exception of the first month after cilantro kicked in) Now when I say hives-like, what I mean is that they look like hives (red patches with pale raised bumps) The difference for me is that there is ONE bump in each area that his WAY more itchy than the rest and causes the whole area to itch. If I scratch off the top layer of that one bump, it seems to help it go away faster. The top layer of that bump usually comes off pretty easily and no bleeding. It's weird and I only realized this could happen by accident. I was SO itchy one evening I scratched a little harder than normal and this happened. So now I do it almost every time a rash pops up. These hives travel. I could have them on my breast, armpit and stomach one hour, then they go away and pop up on my butt and back, or on my head and chest. There is no rhyme or reason. although it travels, it's constant. Some days better than the others, but it still would be nice to have an itch free day. Obviously I have found ways to "manage" it. But I am over it! I believe it's part of Grover's, but can't be sure because all my Doctors say it does not present like Grover's. I personally don't think they know MUCH about Grover's other than what is written in the literature. Which simply states it's "transient" and "goes away in 6 months to a year" I know this is not the case for almost everyone I have spoken to that has the disease. It lingers or keeps coming back. I think I have tried almost all prescription drugs offered for hives and GD and have asked for others not offered! None have worked. I am thinking of having another biopsy. Any suggestions?

@kimass1 Have you had any new stress in your life, things that you are suppressing? I was actually in the derm's office this week for 6 month check up and he noticed some Grover remnants, which were not bothering me. In the meantime, I went through a very stressful hour involving a med alert call I received and which I could not do anything about. Within a few hours I had a new cluster of Grovers in an area not before covered. It began after I left the derm's office. This is my first outbreak since the initial one last January. I never stopped cilantro all this time. I just KNOW that the stress precipitated this outbreak because I was all hot and perspiring and quite upset. All worked out fine as far as the med alert was concerned. I applied triamcinolone cream to the area to control the itching and it seems to be working. I am only on day 3 but I thought this was the weirdest thing I had ever experienced since that particular area was clean as could be prior to the stressful event. My stress caused me to get very hot (possible blood pressure rise?) and my scalp was even wet. Rarely do i have such a reaction, but then again, I thought my husband was being transported to a hospital by paramedics and I was an hour away not knowing which hospital. It was a false alert and for that I am grateful. That is why I am asking about stress. Sometimes the stress can be more subtle.

I can offer you is sympathy but wish I could do more as what you are describing is not like any GD conditon I have heard of I wish there was a hospital dedicated to skin diseases like MD Anderson in Huston. You have to keep trying and another biopsy could help. From my experience biopsies have to be taken at the right stage of a breakout. My GD biopsy was negative. I was almost at the end of my initial GD breakout which lasted 1 year about 5 years ago when I went to a new derm who took one look and listened to my symptoms and immediately told me I had GD. Others treated it like my Allergic Contact Dermatitis, so of course nothing helped previously because basically no meds help with GD. Yet when she took a biopsy it came back negative. She told me at the time of the biopsy that for the GD biopsy to identify GD it needed to be in the active stage. Yes I had the clusters of classic rashes all over front and back torso, upper and lower but they were scabbing at the time of biopsy. All I can think of is for them to accurately find the GD it has to be a fresh active area. Also what is your biopsy testing for? Is it limiting the test to GD? Can they biopsy for hives, shingles or other skin conditions with the same biopsy. You could have multiple skin diseases and your doctors are limiting their ideas to GD.
You are one to study. Have you gone to the New Zealand Derm site, dermnetnz.org, a site which helped me identify one of my 3 forms (once again incorrectly treated as my original form of eczema by derms. Start with a blank slate and search their skin site for your symptoms, not assuming it is GD. This site has the best batch of photos of actual patients with the skin condition. You will find various appearances with each type, even GD as we know has variations, but if you search though the pages you may find a photo of hive like rashes like yours.
I though my GD might be coming back as my lower back in the center was itching, yet confused because upon closer inspection the itchy area was just one wildly itchy non healing bump! Nothing remarkable in appearance but it would not heal for at least 3 months. I could scratch of the scab once crusted to only have it return and never heal. It never had puss and didn't bleed but a bit, like you mentioned. My back in that area is still not smooth as I can feel a few little bumps, but they do not itch. I believe GD permanently has changed my skin layers. This one bump was so itchy it felt like if was dozens of GD papuales. I changed my gardening clothes from loose 100% cotton jeans, held up with a 100% leather belt (I'm not allergic to the 100% or the leather) to 100% cotton bib overalls. The belt and the jeans but pressure right at this bump and rubbed it when bending over. The overalls have zero pressure. I also broke down and used a steroid on the papuale. Steroids never helped with GD. Yet after eliminating pressure and adding a steroid after 2 weeks it was 60% better. Stopped steroid and still better, but scab is still there and will leave it alone this time. I think the friction irritated my GD damaged skin and this papuale may not be GD but simply weak skin. Now just minor non-troubling itch, yet it's not gone. I still make my cilantro smoothie and plan to for life. Still this doesn't account for your random hives, mine seems to be triggered by pressure and it was not a hive.
Your situation really sounds like an allergy the way it moves around in areas not normally associated with GD. Does it happen more if you go outside? I have a friend my age that just this year started getting hive like welts on her arms, legs, scalp, face and even unexposed areas after she gardens. It sure seems like allergies, but when she gardens she never leaves her patio or sidewalk, just reaching into flower pots or little flower beds. No dietary changes. Maybe it's in the air as she lives in a wooded area.
You helped so many of us with your input about cilantro and hope others on this site have ideas for you.

I agree about stress. At age 50 my health issues began along with 5 major stressful events that year. One permanent result was high blood pressure which has escalated and now 20 years later am maxed out on my dosage. Why I haven't had a stroke is amazing as I have spiked as high as 215/105. After several ER trips I now have the meds here at home to take if necessary. This year once again needing to increase my dose the doctor told me I was maxed out and recommended I take Valerian Root, the source of Valium, daily. OTC its normally sold as 500 mg, but I tried that and got an afternoon low, so after shopping harder found a 250 mg dose. I think I am calmer and no afternoon low, but far from feeling like a zombie. You cannot divide this tablet as it is a powder and the stinkiest substance on the planet earth. Smells like rancid foot odor even inside the tablet. I isolate the bottle (even the bottle stinks) in another thick and larger bottle and keep it under my sink. I have been able to cut one of my high dose pills in half. Some with less severe high BP report being able to give up BP meds altogether.
Your stress was a isolated event (and thank goodness a false alarm) so Valerian is unnecessary for you , but for others who have stress in their lives might consider trying it. I truly do not want to live on px tranquilizers. I am a naturally happy person and do not what these joy killers robbing me of the joy I feel- I have seen this in others.