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pricklypear1971Member Since 24 Aug 2011
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Posted by pricklypear1971 on 04 December 2013 - 11:31 AM
Posted by pricklypear1971 on 07 August 2013 - 10:36 PM
Glad things are getting better. Dh is a weird combo of "one day at a time" and "reassess in two weeks". And sometimes it takes others telling you it looks better, or you act differently. It's all so hard to wrap your brain around.
It is "a thing" to rebuild your life after gluten/dh. Really. You aren't doing a little thing, here.
Posted by pricklypear1971 on 22 July 2013 - 09:06 AM
So, yes, some people develop a DH type rash as a glutening reaction after going gluten-free. But rashes seem to go along with ai and gluten, so who knows.
Yes, dapsone is used to treat DH and successful remission could indicate DH. Have you tried a low iodine trial to see if the rash responds? A large percentage of DH responds to iodine: kind if like water in a grease fire. Iodine doesn't cause the rash, but it is a catalyst. I went low iodine and immediately went into remission. Details of the diet here: thyca.org
Also, do you know what condition your hormones/thyroid/adrenals are in? I swear the worse mine were, the more rash I had.
Posted by pricklypear1971 on 19 July 2013 - 04:47 PM
I haven't been tested for anything but today I can confirm that I am either celiac or gluten intolerant as I was glutened, yup I was brought to a restaurant and you know what they put on that food, gluten gluten and more gluten, felt bad for about 3 hours. I.m ok now. I hope this doesn't make it so much worse in the short term, i hear people feeling bad for 10 days from simple cross contamination.
I rested for 11hours last night probably slept a good 9 total and today when I woke up I was so extremely exhausted, the word is weak to explain how drained I was, I went again and took a multi vitamin pill, been over a month since I had one has last time I took one I wanted to vomit really bad. I've also been trying regular peanut butter again and it seems to give me gaz too but nothing as bad as the natural one. Guess that's one more think to cut off my diet. I only felt better when I had my coffee cup, which from there I was about to survive one more day.
It feels like all I should eat is veggies/fruits and meat for months as people mention a lot of dairy and corn intolerance. Not quite sure how one expect to have a varied diet with so limited choice and meat being very expensive while none of those thing really full me up.
Tomorrow I am going to the grocery store and I will buy about the same thing as usual but with more fruits, I get so hungry 24/7 I am literally always hungry yet I can't eat as much in one session as I once did because I'll feel bloated. It gets to the point where I'll eat before sleeping and even before my sleep cycle is over I'll be starving,
One more concern I been having is the daily intake of vitamin A, as too much vitamin A can cause all short of low energy and pain syndrome and being that there is a lot of those in sweet potatoes I'm wondering if I shouldn't eat too much.
-To answer tarnalberry, every single day I fight to lower my stress but it's hard when the system expect you to pay your bills and you gotta count every single pennies after each transaction because that is how short you get on money with a part time job all while you are so energy drained that all you can do is sleep plus having you ass hurt so bad that you can no longer enjoy relaxing on a chair while having to look for a job before you get kicked in the street. Yup life has its way of being a pain. I would dang love to know why I get numb arms, I cannot lay on my stomach or they get numb, in fact they get numb in just about any position and I had a sinus surgery about 7 years ago I'm thinking something changed over time.
Less fruit, more veg if you can...
Posted by pricklypear1971 on 19 July 2013 - 12:27 PM
I've had that too but the worrisome thing is when it happens at work when I'm standing.
I know exactly what you're talking about. I had hideous clots after my son was born. Looked like an organ falling out through my uterus.
The t3/progesterone helped. Also, adrenal balancing. Ugh. A mess.
Posted by pricklypear1971 on 19 July 2013 - 12:24 PM
thanks for the info I was freaking out about my makeup and was about to throw everything out lol
Okay, I want to make a point.
Gemini has great luck not getting cc'd from cosmetics, or shampoo, or lotion...but YOU may not.
Being concerned about topical gluten is not exclusively the domain of dh sufferers who break out from topical gluten.
We are all different. Just like one of us will not be able to eat X food or be in X environment, some of us need to get all gluten out of the house and out of our body products.
Plenty of Celiacs refuse to use glutenous skin/beauty care, not just DH Celiacs and just not ones with other dermalogical issues.
I compare using glutenous body care to washing my dishes with glutenous dish soap, or polishing my furniture with wheat germ oil. Not a smart move.
If you think you are getting glutened, and you can't explain how, and there's gluten in your body care products...my advice is to replace them with gluten-free versions and see if that solves the problem. If it doesn't, then go back to your other products.
Posted by pricklypear1971 on 18 July 2013 - 06:31 PM
I know there's a post. I'll dig for it. It's a differential Dx for Celiac/NCGS.
Ok, try this link for differential: http://www.cleveland...tive-disorders/
Okay, thanks to kareng here it is: http://www.curecelia...luten-free-diet
It's FODMAP sensitivity.
Posted by pricklypear1971 on 18 July 2013 - 02:58 PM
Have you had your vitamin levels tested? Iron, b, d, calcium, magnesium etc.
I see lots of grainy carbs. Personally, I'd scale back on the grainy stuff and add more veggies. But I respond to veggies positively and grains negatively. A good chunk of gluten intolerants do...something to consider.
Did you go through celiac testing?
Posted by pricklypear1971 on 18 July 2013 - 09:09 AM
Hi I'm chiming in as a Celiac and Migraine sufferer. 90% of my Migraines disappeared after going gluten-free. Migraines require two triggers I spent over a decade knowing that and avoiding all the known triggers I possibly could but I did not realize gluten was a trigger. Two of my triggers are my hormones fluctuating during PMS (or PMDD) and barometric pressure changes (in other words an on coming storm). Every single time a storm front came in and every month just before my period I was guaranteed a migraine. I actually spent one third of my last year before being recognized as a Celiac with Migraine. Last week was very stressful as Monday my mom had to be sent by ambulance to the hospital. On Wed night I swelled up like a basketball in my abdomen area. When I got up Thursday morning I felt awful, it was mostly just a general feeling of doom with awful nausea. And then more symptoms piled on. It was a migraine without the head pain. I was very weak feeling and I could tell I was near passing out at work (I have a lot of experience with passing out when I was younger). I went to the breakroom and sat and realized all the notices on our bulletin board were blurry. I get olfactory hallucinations sometimes with Migraines which I think is a form of Aura. Not sure if I had it this time as I work in a place were I'm prone to dismiss some smells. I had to go home. A few hours later a strong storm came in. I recognized the next day I had cross contaminated (?) myself Wed by giving a therapy dog a biscuit and not being able to wash my hands immediately afterwards.
At any rate in my case both hormones and gluten trigger migraines.
Now I have a question, since I know there are a few ladies reading who have or are experiencing menopause at some stage. Many months during my period I drop large globs of blood. So large that it fills an extra long extra absorbing pad to the point that if I don't literally race to the restroom it goes through to my panties and then my jeans. My pads will be totally blood red and heavy and it's from one glob of blood. Is that just a symptom of PMDD, is it the coming of menopause or is this something I should be even more concerned about. Someone suggested it sounded like I was hemorrhaging. It's been going on for several years now. It doesn't happen every month but it happens more months than not. Thoughts?
According to my ND that's a symptom of estrogen dominance and low progesterone. After adding more progesterone cream and upping my t3 meds my periods are finally only 5 days long and minimal clotting.
Btw, I get the barometric pressure headaches. And normally, only in winter. Though, since my FL trip (and apparent low level gluten exposure), I've been having allergy and barometric symptoms in the summer...which sucks big lemons.
Posted by pricklypear1971 on 17 July 2013 - 07:00 AM
I'm generally at higher risk if its allergy season...my body goes into a spin.
Try an OTC antihistamine every other day or so. I use Costco's generic Claritin or Claritin children's chewables (great for half doses). Others use Benadryl or something else. Antihistamines can suppress the immune system and ai reactions. It's a cheat, but sometimes a valuable one.
You may also consider another ai disease involvement, like thyroid. The worse my thyroid is managed, the harder my gluten recovery. Le sigh.
Posted by pricklypear1971 on 16 July 2013 - 06:06 PM
PSST! I don't want to jinx it, but the rash looks soooo much better today - browning, less inflammation all around, scabbing and the itch has been relatively bearable. I am kind of giddy, but trying to be calm and realistic. The idea of possibly being able to sleep more than two hours at a stretch is too too exciting.
LI is challenging, Gluten free is less so, but still challenging (for me) but I will do ANYTHING to continue this healing.
I know how it feels to think you're tempting fate to talk about it.
There was a point where I started addressing the rash like a person with a complete asshat personality.... When I had success with the low iodine addition to the gluten-free I felt like I had Asshat by the neck, and I smiled. It was so nice to KNOW.
No testing, no doctor signing off on Celiac...but my derm had insisted it was autoimmune. And when I squashed it going li, and I told him, he didn't argue. He'd suspected DH but when I didn't link it to foods (after he asked repeatedly) he put it on the back burner. Mine also looked different when I was on steroids and using steroid creams and on strong antihistamines. He never saw it in its "full glory". Anyway, I sincerely hope you've turned that corner.
I will warn you it gets scary when you start reintroducing iodine. Just go slowly and don't lose hope if you flare. Just back off the iodine...less frequent, lower volume, a different food. You may react strongly to one iodine rich source compared to the others.
I hope you have a good night. Moisturize like crazy, and keep up the ice packs.
Posted by pricklypear1971 on 14 July 2013 - 08:39 PM
I use Vanicream - the thick version. If I'm not mistaken, some Cetaphil contains gluten. My favorite moisturizers were Vanicream and Vaseline. Neither I would have touched with a ten foot pole prior to The Damn Rash, but most natural lotions or oils seemed to either contain gluten or make my rash burn. So there ya go.
I hear ya on begrudging the lack of milk and eggs. So do you eat eggs at all now? I love eggs and the idea of never being able to eat a creamy duck egg yolk again is sad. I will probably introduce ice cream first, though. I will miss that the most! And salmon - the way you feel about shrimp is how I feel about salmon! (which I happen to love best when served with asparagus. ARGH!)
Ok, so I think I will cut out potatoes for a bit (Did you eat sweet potatoes at all? Are they a problem for you? I don't see them on the THYCA list). Maybe I will just go full Paleo for a month (Minus the fish, of course) reintroducing unsalted butter at two weeks and egg yolks at three weeks. Hmm. Alright, I am kind of enjoying this culinary challenge (I am sure in a week I will be back here, whining about my stupid restrictive diet!)
I can do this. I have to do this.
One more question for you Prickly and anyone else who wants to chime in: What is your favorite lotion/moisturizer to use? I have seen a lot of people here recommend Vanicream and some say Cetaphil. I tend to not like the way petroleum-based moisturizers keep the heat in when I put them on the rash. Does anyone else have this problem? I have been using Extra Virgin Olive OIl. Before that I was using sunflower oil and before that Coconut oil. My skin still gets dry and flaky but does not crack and bleed at all - like I said, I REALLY try not to scratch the rash and I think that helps.
I eat everything except gluten. It probably took about 5 months to fully reintegrate all iodine foods without freaking out and counting how many high iodine servings I had in one day.
Btw, I do recommend a crutch. A food crutch. I don't know when I started eating junior mints, but I do know they didn't cause an iodine rash flare. Is semi sweet chocolate on the list? I can't remember...whatever. Find a crutch. Use it. Eat the crap out of it and don't look back.
I never had a problem with milk, even without screening for iodine. Maybe I got lucky? Do be careful about sour creams, cream cheese, etc. - screen for CARAGEENAN. Guar him, locust gum ok. CARAGEENAN , no! CARAGEENAN is seaweed. Yeah.
I starred eating whole eggs every few days after the first month (that included baked goods). It helped to not feel deprived. But I had to decide what to eat as my iodine serving that day: eggs, potatoes, etc.
Eggs drove me nuts because of baking. I grew to hate egg whites, and baking with egg whites...yuck. I make ice cream without eggs, but gelato was out (obviously I'm addicted to dairy).
My one big bad flare was thanksgiving, btw. That was about 2 months into li. I somehow put together the most iodine rich menu conceivable then proceeded to eat it two days in a row. Yeah. Breakout. Luckily it was very mild - antibodies had fallen and I knew (unfortunately) to restrict iodine to put it out. Yeah, all of those leftovers staring at me. Ugh.
Just go slow and take notes about which foods make you flare or itch.
Posted by pricklypear1971 on 14 July 2013 - 01:21 PM
1) I get swollen lymph nodes, flu-like feeling, and a very weird under the skin pinprick rash from sulfa drugs. But that's just me.
The past two days have been really hard. The rash was the worst it's ever been and I was stressing about finding a new PCP. I was so annoyed with the guy they gave me, it was all-consuming. What an arrogant prick! But then trying to negotiate finding someone knew and hoping that they would listen to me, really listen and be open minded? It all felt so impossible, far away, too much. I cried so much on Friday that my eyes hurt and were puffy (My S.O. calls it blubberitis. Hehe. )
But slowly I worked through the fear and realize that I could stop this panicked tailspin. I have an excellent nautropath that I am working with and I will see her this week. I ordered the tests from Enterolabs and ahem, "processed" them today, and I am ordering thyroid tests from PersonaLabs. I am eating so incredibly well I want to high-five myself! Tons of fresh, organic veggies at every meal (it's the right time of year for it), fruit, especially blueberries and marion berries that my parents grow, duck and chicken egg whites (also organic, also grown by my family), and fresh meats, pastured and grass fed when possible, beef, pork, chicken, lamb. Despite the rash, the lack of sleep and the stress/anxiety, I feel great! Ha!
And - I don't want to jinx it - but it appears that the rash may be rounding the corner. A lot of areas are darker, either red or brown, and dried, some are scabby and flaky and considerably less itchy. Swelling is down, overall. There are new little spots here and there that are furiously itchy, but I am hopeful that it is the death throes. *fingers tightly crossed*
Squirmy, thank you for sharing the progress of your healing. And mostly, I am so glad to hear that you are healing! This is the kind of stuff I came here for - real, 1st person knowledge and experience. The doctors are so unaware of this thing it's incredible! But I feel like I am about to have a rebirth, of sorts - who knows what kind of minor annoyances and afflictions may clear up or resolve in some way that I never thought possible? There are moments where it is kind of exciting, imagining fewer pimples, less PMS crap, healthier hair, less anxiety or unexplained periods of sadness/low energy, not to mention the possibility of no longer having the annoying digestive issues I've always had. None of them were so life disrupting (though the IBS got really bad for a few months during a stressful time in 2007), but they were uncomfortable: bloating, discomfort in the morning, difficulty eating in the morning, painful gas if I sat too long, diarrhea after particularly salty or fatty meals...all these things I just thought of as part of who I was and learned to live with them.
Prickly, I had a dream the other night where I was hysterically pleading with my new, arrogant doctor and telling him to please just believe me, that this is an autoimmune thing. I woke and realized that they are approaching this as though it is a dermatological issue and it's not - it's autoimmune. I have accepted that I am an autoimmune patient and I am focusing all my attention on what I need to do to properly take care of myself. This is my job now. (I have not been able to work - I am self employed and my job is physical. I gave myself the time off, as hard and scary as that was. I've worked so hard to build the business and I am just going to have to trust that I will be able to rebuild it when I am able to get back.)
So a few more questions have come to mind, for you two, or for anyone to answer:
- RE: adrenal support. Is there anything I can do by myself to support them, until I find a new and compatible doctor? Maybe this is something my naturopath can help with? Like I said, I am eating really well, and I am also taking naps as needed, whenever I am tired. I am delegating stressful things to family members and my S.O. and I am meditating.
- For Prickly and anyone else who has done the low iodine diet: how long did you do it for? I am all in for the long haul, but I just don't know how long after the rash heals in a significant way that I can reintroduce some iodine-rich foods. How did you deal with the reintroduction?
- I was prescribed Clabatizol and I really do not want to use it. Again, I feel like they are treating this dermatologically, and doing nothing for the autoimmune treatment. That being said, if one of you tells me that you have had good luck with it and that it was a relief, I might give it a try. But I am concerned that it will just make the rash come back with a vengeance next time or something
- How do you know if you are allergic to sulfa drugs? Is it one of those things where you have to try it and find out? *shudders*
- Any insight on how to deal with socializing around food would be welcome, too. This is something that has been worrying me for a while: the idea of going over to e friends' house or out to eat is slightly terrifying, so I am considering just eating beforehand or bringing my own food if invited to someone's house, and I probably just won't go out to eat for quite a while. I guess I can always go out for tea (herbal, no milk or sugar). I like being around people and Portland is such a food town, but I just do not feel that I can eat safely from restaurant kitchens. Is this something that worried you too? How did/do you deal with it? I have found the local GIG chapter and a couple of blogs about gluten free eating around town.
Ok, wow, so many words. Again, I cannot express how happy I am that I found this board. In just a few short days, you all have given me more info than several doctors and 52 dermatologists could in 7 months! (50 of those derms were from the Morphology Meeting that I was part of two weeks ago at the local teaching university. I had 50 students, residents and docs look at me and all of them were stumped and NONE of them felt that it was DH since the 5 biopsies and 1 blood test were negative.)
2) as far as adrenals go, I take Pure Encapsulations products:
DHEA 5 mg - 1 each morning
ADR Formula - ND told me 2 in morning, 1 early afternoon. I take 1 in the am now.
I take thyroid meds...
I am also on vitamin d, iron, multi vitamin, chromium and selenium (thyroid). I take digestive enzymes as needed (glutening/stomach upset) and XYMogenXP ProBio Max Plus DF probiotic as needed (should take it daily according to ND).
The adrenal and DHEA are in response to saliva testing and obvious adrenal issues because of thyroid and steroids.
I was hard-core low iodine 2 weeks. My rash healed and I stopped breaking out in 2 weeks. I started adding back high iodine foods at that point. Milk first, then skinless potatoes, then an occasional egg yolk along with an occasional high iodine veg like asparagus or seafood like shrimp. I was careful to not eat too much high iodine each day. It is cumulative. I did overdo it once, but my breakout was very minimal. The bumps were tiny and few in comparison.
It is not advised to eliminate iodine for too long - thyroid.
Right now, doing li, eating out is tough. You may be able to eek out a meal somewhere from a reputable restaurant that does gluten-free well. I just held off til I started adding iodine back and then only 1x per week.
In the interim, take your own food. Drink teas and coffees...crackers, whatever...or take a whole meal. We all approach this differently and awkwardly at first. You'll get better as you go. Friends will learn this is the new norm. Definitely seek out safe restaurants and try to meet friends there. If food isn't safe, eat before or take with and socialize. Don't drop your friends .
Re:rash. Moisturize. A healing rash cracks and bleeds and hurts. Lotion 5x a day.
And a note on alcohol. It may be tempting to drink your social anxiety away with gluten-free cider or rum or tequila or wine...but be warned...most if us react very strongly (meaning we get shitfaced) immediately after going gluten-free. And following shitfaced we get deathly ill - vomiting, wanting to die kind of ill. Note: Gatorade is gluten free. I advise keeping it on hand of you decide to have more than two drinks.
Posted by pricklypear1971 on 13 July 2013 - 06:32 AM
The odds that a pill (or shot or whatever) will be developed that "fixes everything" involved in Celiac disease or autoimmune diseases (that's a big pot of diseases right there) is pretty slim. Not impossible, just pretty slim. A vaccine may accomplish this - but that isn't a cure, it's prevention.
It has been my experience that every pharmaceutical fix has a side effect, or a hole where symptoms still leak through. I'd expect nothing different from a Celiac Disease pharmaceutical.
So, am I open to hearing about it - yeah. Do I think it will "fix everything"? Nope. I'm just being realistic.
A vaccine for Celiac? I'd be much more hopeful about the effectiveness if a vaccine to prevent it from developing.
Posted by pricklypear1971 on 11 July 2013 - 07:14 PM
Those tests are repetitive. Try this link for info about constructing a full panel: http://thyroid.org/b...st-for-thyroid/
Thank you both so much, Squirmy and Prickly. This whole thing has been such an emotional hurricane. Some days I feel good and strong and others, I just fall apart and cry and cry on my sweetheart's shoulder. For the first few months of this year, I kept saying how "gross" and "like a leper" I felt - I have banished that language and focused on being more loving toward myself.
This is the hardest thing I have ever gone through. It feels like I am being tortured.
I know you did not mean to scare me, Squirmy, and I want the truth of your experience. It's sometimes hard to hear, but it's so helpful. Every step of the way, there have been realizations like this that scare me and leave me overwhelmed. That must just be the way it is when someone is adjusting to a new reality, I assume. I have so much to learn.
I am so curious to see what other things might improve as I stay truly gluten free, besides my hair growth. Maybe my horrible periods will ease up. Maybe I won't have random bouts of IBS. Maybe my anxiety will lessen. Who knows?
And thank you Prickly: My freezer is well stocked with ice packs! It's the only way I can get any sleep at night.
Two more questions:
- Do you ever notice that your rash correlates with your menstrual cycle? Mine seems to some months but that may be a red herring.
- Thyroid tests: I am looking at some from Personalabs, that I can order without needing a doctor. When you say full thyroid panel, do you mean all of these?:
Calcium, Ionized, Serum
Parathyroid Hormone (PTH), Intact
T4, Free, Direct, Serum
Thyroid Peroxidase (TPO) Antibodies
Thyroid Profile with TSH
Thyroxine-binding Globulin (TBG), Serum
Triiodothyronine (T3), Free, Serum (Free T3)
I'd put one together that includes free t3/t4, total t3/t4, antibodies, and tsh. You also need to test your iron (ferritin and saturation http://labtestsonlin...s/iron/tab/test), d, b's. some would include calcium and magnesium. Here's a link about ordering tests: http://thyroid.about...selftesting.htm
As far as the rash fluctuating with your cycle, yes. I noticed that. I went through a stage where my progesterone was so low I had breakthrough bleeding, plus the rash. Topical natural progesterone helped. I hate to pile more on, but you need to start reading more about adrenal damage from autoimmune disease. There's an excellent chance your adrenals need support - and if they are struggling, your hormones are struggling. I suspect you have more damage than you realize. Most of us do.
You need to start thinking of the rash as an autoimmune disease, and start thinking of yourself as an autoimmune patient. Dh is celiac disease, and celiac is an autoimmune disease...and if you have one you are at high risk to develop another...and you need to closely monitor yourself for them.
That said, just breathe. It's going to get better now. You know gluten and iodine affect the rash. You can control your exposure to both and influence the rash. You can figure out the tests and supplements you need. You'll get there. You really need to find a doctor/nd to work with, that you trust or at least one you have a mutually respectful relationship with.
I know you're exhausted and I know you're tired of the pain and misery of that rash. You're in the right place. You have help now.