I Think I Have It. Please Weigh In On My Situation.

[RustyShackelford]

HI all,

I've been lurking for a month or so reading all your posts and conversations about DH and I think I have it. What a bummer this is.

 

      It all started last August when I started having heart palpitations and dizzyness which I immediately went to my ND because she could see me faster than my MD. She checked me over and couldn't find anything wrong so she gave me some supplements for high BP and sent me on my way.

      For the next couple weeks things did not improve so she ran a test on my adrenal glands and found that I was seriously depleted and that's why my heart was pounding and I was getting dizzy every day. She also, at this time, suggested I go gluten free to aid in the healing of my adrenals. Wonderful I thought, I'm officially not dying, and I immediatly started feeling better with the hormone supplements she gave me.

     Then, a few weeks after going gluten free, a rash started to appear on my fingers. Now, I've had this rash before and my MD had diagnosed it as dishydrotic dermatitis. The rash would always fade after a few months of sterioid creams.

This time though, it was more severe than it has ever been before and I started to worry since it was so painful and irritating. My ND counsuled me to go on the GAPS diet to heal my gut and she told me the rash would improve once I had healed my gut.

      This was three months ago and the rash continued to get worse until, one day, I googled "gluten free then rash" and I scored a hit in this forum. After about 3 seconds of reading about DH I knew it was a match. I immediately removed iodine from my diet and saw almost immediate improvment. This grew my confidence and I added a few GAPS diet friendly items such as: spinach, almonds, honey, and some other veggies. My hands reacted badly so I reverted back to a diet consisting strictly of chicken and broth again. This is a difficult diet to maintain for an extended period of time and I am starting to feel pretty down about it.

 

     Having now read some more on the forum, I realize that I'm probably sensitive to salicylates too. ARRRRRRGGG! Let me tell you how many foods are 1. gluten free 2. GAPS diet compliant and 3. salicylate free. ALMOST NONE. I pretty much subsist on bananas and chicken these days and it suuucks.

 

I understand that the DH will eventually fade and I will be able eat iodine rich foods again but I guess i wanted to tell my story so people could weigh in on my situation, you know, in case I'm missing something.

I am kinda worried about the salicylate sensitivity though. Is this related stricltly to the DH, the potential leaky gut, or do I have another issue all together I should be pursuing?

 

Thanks in advance for your advice, stories, experiences, and help.

 

PS I'm a 35 year old male. Otherwise healthy body and mind, just looking to get better. I've gone from 210lbs to 175 lbs on the restricted diet.

[squirmingitch]

Well Rusty, if you have been reading on here then you know that dh can come & go as it pleases & that means ON gluten or OFF gluten. If you have dh (& you never mentioned anything about itching) then the flare you had after adding the almonds, honey & spinach may not have been related to those foods at all. It could have been & then again it could not have been. That's what's the real b%$@# with dh is ~~~ trying to figure out what you're reacting to IF you're reacting to anything at all. In the beginning, I thought I was reacting to salicylates also but I found it was just coincidence that I began healing when I removed salicylates. I also believe I probably didn't need to be low iodine as long as I was but again, dh will make you nuts out of your ever loving mind until you imagine you are reacting to everything. A food journal can be of some help but again, with dh & the way it flares for no earthly reason; a food journal doesn't necessarily give you the answer & can in fact, cause you to remove foods you don't need to remove. The iodine is telling though. I tested my iodine reactions repeatedly & every time I added it, the rash flared, so it wasn't a fluke & I was indeed reacting to iodine which further cements the dh dx.

 

How long have you been on the GAPS diet? I would suggest adding one food per week & only one. Then add another for a week. And if you get a flare during these times, try to wait it out & see if you improve even though you're eating that food. That is going to be a torturous, long process. OR you can stop limiting your diet of sals & GAPS & just limit iodine for a while longer & then just eat & wait it out. DH can take years to get out of your skin. Ask me, I'm proof! I am now 2.5 years pristine gluten free & though I am 56,000% better; I still get places. They do not continually itch 24/7 & they subside in 1/2 day to 3 days & there are times when I go 4 days without 1 single itch. But it has been one hell of a long haul for me. The key is if you are sure & then you must be so dedicated that you stop listening to those little niggling voices that cause you to doubt literally every single thing you put in your mouth. Been there, done that! I assure that every tiny item I eat is gluten free beyond a shadow if a doubt. Beyond that, I EAT!!!!!! The only thing not in my diet yet is seafood. I'm not a huge fan of it anyway so it's no biggie to me. I could go for a little tuna fish or some salmon once in a while & I do dig lobster but other than that ~~~~ meh, I can do without it.

BTW, I had heart palpitations or rapid heart beat & that whole dizzy thing going on & while not high, my bp was borderline high where they were warning me I better get it down or go on meds, which was really weird for me. Gluten free fixed all that. Now they take my bp & it's back like it used to be ~~~ they remark on how chilled out I am @ age 57!

 

You are a 35 yr. old. You need nourishment more than chicken, broth & bananas. You can't stay on that for an extended period without doing some other form of damage to your body. Your body NEEDS nourishment to heal. 

 

I think maybe the most important thing I could say to you is that this is a mental game you're playing. DH is the world champion at making you doubt & will take you down in a heartbeat if you aren't constantly on alert for it's mind benders. It will wiggle & worm it's way into your mind when you least expect it. Don't let it win. Do not let it make you insane & afraid to eat good nourishing food. 

 

I will also say that eating out is playing Russian roulette. And that includes eating at friends & family. They do not know all the rules & unless & until they do then you put yourself at risk. BE STRONG. Take your own food wherever you go. Do not take any chances with this. This is how you will defeat dh. You defeat it by not risking any cross contamination & thereby being sure in your mind that you are not reacting to gluten contamination. 

[RustyShackelford]

Hi thanks for replying, your post is very helpful. The itch, omg, the itch. It feels like my hands are coated in paint stripper, or like there's hundreds of tiny cigarettes being put out on my skin. YES I have the itch!

At this point I am positive that the iodine causes a reaction but you have me questioning the sal sensitivity. It would be a helluva coincidence though, the way my reactions have been. This is the way it goes for me: eat something and react, remove something from diet, heal, confidence returns, add something to diet, react, remove item from diet, heal, repeat.

Now, I could just be timing this cycle so it perfectly coincides with my healing/reacting cycle of the rash but that would be way to ironic.

[RustyShackelford]

What were your phases like? Did they have a rhythm to them? Or were they completely random?

[squirmingitch]

You use words to describe the itch like my husband does! 

 

When I went low iodine, the thyca.org site listed more foods that they do not list now PLUS I hunted down other lists of foods that were anything above low iodine. Among those foods we did not eat were spinach & almonds. Perhaps the iodine content in those got you. ???? 

 

Okay, I would at least like to se you try some organic sweet potato & pears. These things are low iodine & low sals. I don't know where they are on GAPS diet as I have never done GAPS. And lamb; I know lamb is "hypoallergenic" so to speak. And later, try some cashew butter (organic). Not peanut butter as the skin contains the iodine. Let me try to recall exactly what we ate low sals & low iodine.....

 

iceberg lettuce

leeks

white potatoes --- peeled deeply

celery

pears

fresh meats 

green beans

snow peas, green peas, sugar snap peas

cashew butter & unsalted, roasted cashews

amaranth

quinoa

buckwheat

white rice

egg whites -- no yolk!

safflower oil

saffron threads - a pinch of them in the white rice will make yellow rice

chayote

tomatillo

mango

apple

zucchini

instant decaf coffee

cauliflower

cabbage

red bell peppers --- NOT green ones

 

We also ate gluten-free Bisquick pancake & baking mix - we made pancakes according to pkg. directions substituting water for the milk & 2 egg whites for each whole egg

We did eat syrup & honey.

 

I didn't really get to a rhythm with phases until about 1.5 years & then I can say there were rhythmic phases. They began with around a day off for I don't know how many days on & then it progressed to about 3 days off & a week/10 days on. But I can't say those were true hard & fast rules b/c sometimes I would get a surprise week or 10 days off or no days off --- you learn to go with the flow & it's easier on you if you don't try to COUNT on anything b/c sure as you do, you set yourself up for disappointment. 

[RustyShackelford]

Ok thanks again for your reply. I guess it could just be a terrible coincidence that everytime I've added veggies or fruit to my diet I have a reaction. It seems (once I removed the iodine) to be 2-3 days off and 3-5 days on. Everytime I heal, I add something, then 1-2 days later I'm reacting again. Thus, the conclusion I'm reacting to salicylates.

Let's say, for a moment, that I am reacting to salicylates. Do the people with dh that react to salicylates still react to salicylates after the dh is gone? Did they react to sals before the DH kicked in?

[RustyShackelford]

I also think I've been reacting to beef. Do you have any thoughts on that?

[RustyShackelford]

I just checked the thca website and I can't find anything about spinach and almonds being high in iodine. Where did you get this valuable information? Is there a comprehensive list somewhere?

[squirmingitch]

Ok thanks again for your reply. I guess it could just be a terrible coincidence that everytime I've added veggies or fruit to my diet I have a reaction. It seems (once I removed the iodine) to be 2-3 days off and 3-5 days on. Everytime I heal, I add something, then 1-2 days later I'm reacting again. Thus, the conclusion I'm reacting to salicylates.

Let's say, for a moment, that I am reacting to salicylates. Do the people with dh that react to salicylates still react to salicylates after the dh is gone? Did they react to sals before the DH kicked in?

This could just be the cycle you're in right now. Then again.....    And I went through that kind of thing where you think it's something you're eating & it drives you batty! In the end, it wasn't what I was eating but.....

 

I can't answer about how others reacted to sals once the dh is gone except to say that one, I believe, Pricklypear, only went low sal for a shortish period of time & then she was able to go back to sals. Everyone is gone now so I doubt you'll get many answers on that score from others.

 

I tend to say I doubt you're reacting to beef but who am I to say that? How about trying organic grass fed beef? See what happens then. Or cut out beef & eat chicken. lamb & pork.

 

The thyca website used to list more iodine food to avoid than they do now. They listed spinach. No, there is no comprehensive list per se. I Googled food low in iodine & foods high in iodine & went from there. I recall 1 site I got a lot of info. from was Open Original Shared Link

use their search box for low & high iodine foods.

You just have to Google.

[RustyShackelford]

Thanks for your reply. The rash is spreading up my arms and onto the back of my calves. After 4 months of remaining the same, I'm surprised to have this type of growth so suddenly. Did yours grow like this or did you have full onset right away?

I've decided to see an acupunctureist this friday to see if she can help with my condition.

[squirmingitch]

Rusty, I'm not getting on your case here, please understand that, but the rash can & does do whatever it wants whenever it wants. I told you that before. There are no rules as to how much or how far or when it's going to spread or flare or calm. That's why I said this is going to be a mental battle. Mine flared, it spread, it calmed, it flared, it got worse, it got like hell, it almost went away, it flared & not necessarily in that order. It does what it wants to!!!!!!!! There is no predicting it so stop trying!!!!!!! If everything heals up, it doesn't necessarily mean that's the end of it. It can flare again. AND it can flare worse than you ever had it flare before. You CAN NOT make yourself crazy thinking you can figure it out or predict or that your body will react like everyone else's b/c none of us react exactly the same way running in predictable patterns.

 

I think the acupuncturist is a good idea & hope it helps. Please let us know how that works out. I wondered myself about that & others have to but have not seen any reports of anyone who tried it.

 

Another note ---- NSAID's (Advil, Aleve, Nuprin etc.....) excepting Tylenol make the rash flare or worsen so stay away from them. Tylenol is okay but I even had problems with that if I wasn't very miserly with it.

 

Do you have a shared household or do you live alone & have a gluten-free household? Check your topical lotions, creams. shampoo etc.... fro gluten. Check ALL your OTC meds as well as prescription meds for gluten. Read this:

https://www.celiac.com/forums/topic/91878-newbie-info-101/

Clean out your kitchen! Go through cabinets & fridge & throw or donate everything you aren't sure is gluten free.