Partial elimination or nuclear Autoimmune Protocol??

Zizzle · Post by **Zizzle** » Fri Oct 04, 2013 12:34 pm

So my DM rash is getting a little out of control again. I'm covered in pink, itchy "sunburn" from my chest and upper back to my scalp, and it often leads to painful little ulcers, particulary in areas of friction (bra, purse straps, etc). I've had it, and I'm having a hard time coping mentally. I just can't believe that I may have to live with an itch I can't scratch for the rest of my stupid life!! It is ALWAYS with me. I never get a break. It's absolutely madening, and I look horrible to boot.

I am currently taking the max dose of Plaquenil and I had to increase my prednisone from 6 mg in August to 10 mgs in September, and now 15 mgs as of yesterday.
I'm seeing a dermatologist next Friday to ask for the toxic eczema med Protopic (tacrolimus). I just don't care about the risks anymore.

Anyone have experience with this cream?

I am changing my family's laundry detergent to a totally all-natural version, after I learned that All Free and Clear (which I only started buying this year), is actually full of all sorts of horrible chemicals, just no dyes or perfumes.

I should have known better. Shame on me. I'm now washing my bras only with baking soda.

So I am finally commiting to go nuclear on the elimination diet, and prove, once and for all, if this is food induced.

I am already free of gluten, dairy, soy, sesame, amaranth, buckwheat, millet, sorghum, peanuts and most other legumes, carageenan, sodium benzoate, artificial colors, canola and other vegetable oils, HFCS and most sweeteners, both natural and artificial (only use raw honey, maple syrup and coconut sugar).

I am eliminating corn, even though my MRT test did not show reactivity to it. My only grains will be rice and rarely quinoa.

Based on my MRT test, I am eliminating most of my remaining moderately reactive foods:
Pork
Shrimp
Onions
Canteloupe
Walnuts
Apples this time of year? I'm not ready...
Bananas for my morning smoothies? Not ready either...

My question is, would there be value in doing a full "Autoimmune Protocol" and eliminating eggs, all meat, and all nuts for a while too, even if I didn't test reactive to them through Enterolab or MRT? Or is the Autoimmune Protocol intended for people who simply don't know what their food sensivities are?

Wish me luck!

jmayk8 · Post by **jmayk8** » Fri Oct 04, 2013 4:26 pm

Zizzle, how is your MC during all of this and on all of the meds? I hope that's at least in remission..
Wishing you the best,
Jenny

Zizzle · Post by **Zizzle** » Fri Oct 04, 2013 4:59 pm

My MC is practically in remission, presumably due to the prednisone. I still have some loose stool, but only once a day. I would happily trade this rash for my old MC symptoms!

UkuleleLady · Post by **UkuleleLady** » Fri Oct 04, 2013 5:27 pm

Hi Zizzle,
I can't answer your question about the autoimmune protocol, but wanted to wish you all the best and I hope that this indeed helps resolve your problems.
Sincerely,
Nancy

MBombardier · Post by **MBombardier** » Fri Oct 04, 2013 6:58 pm

The dermo gave me Protopic for my granuloma annulare. I suppose it worked (she gave me samples) but I didn't use it consistently. She told me positively that it would clear up the GA. When I went to fill the prescription I turned it down because it was $130 for an ounce. Now I have clobetasol ointment, but I haven't used it.

Sorry I'm not more helpful...

My GA is pretty much in remission. I can't imagine having to live with an itch 24/7. If I were you, I'd go for the nuclear option. If that doesn't show anything in a few weeks, I'd go for the Protopic. I'm sorry you're suffering so, Zizzle.

Post by **tex** » Fri Oct 04, 2013 8:07 pm

Hi Zizzle,

I agree with Marliss — I would go all out on the diet. After all, if you're still having D while taking prednisone every day, something in your diet clearly doesn't agree with you.

Tex

Gloria · Post by **Gloria** » Fri Oct 04, 2013 10:19 pm

I agree with Tex. I would eliminate all high-histamine foods, including the banana, honey and tomatoes.

Gloria

brandy · Post by **brandy** » Sat Oct 05, 2013 1:12 pm

Hi Ziz,

Checkout thepaleomom.com she healed an autoimmune skin condition that did not respond to anything with paleo autoimmune protocol. She did the a/i protocol for 4 mths, resolved the skin condition, and has been able to add a few things back. Brandy

Zizzle · Post by **Zizzle** » Sat Oct 05, 2013 1:47 pm

Now I'm tying to decide which AI protocol to follow. I ran into a nutritionist at Whole Foods who was there displaying Acure hair and skin products (GF and one of my favs). She was interested in my story and told me not to follow Dr Fuhrman's AI protocol (no meat, no nuts, etc). She advised the GAPS diet, which I've considered for a while too. Any thoughts on GAPS versus AI paleo? I think she said no disaccharides, which means no sweet potato :(

I've been keeping a food diary and I'm beginning to think I'm massively sensitive to pork. Homemade pork sausage made my D return, and leftovers of it seemed to make my rash flare the next day. When I think of it, I often get D after weekend breakfasts...the ones that include bacon.

I also cheated the other day on my corn elimination and had a handful of plain Fritos. The rash was much angrier the next day.

I have consistent Normans at 15 mg and mostly notmans at 10 mgs prednisone. It was when I was down to 6 mg (practically a replacement dose), that D was more apparent, but not frequent.

JFR · Post by **JFR** » Sat Oct 05, 2013 2:35 pm

Instead of following one protocol or the other, I would choose a few foods that I was pretty sure were safe and just stick with those for a few weeks (or months) to see what happened. Hope you get some relief soon.

Jean

dfpowell · Post by **dfpowell** » Sat Oct 05, 2013 2:58 pm

Zizzie,

I agree with Jean, it would be easier to start with a few known foods that you tolerate and add foods on a trial basis, rather than starting with an unknown diet of foods that you don't know how you will tolerate. Also, when you are on a high dose of prednisone will you be able to figure out your intolerances? Hope you get something figured out soon!

Zizzle · Post by **Zizzle** » Fri Oct 11, 2013 10:05 am

UPDATE: I saw my dermatologist today for the first time since he diagnosed me more than a year ago. He said my rash is about as bad as he's ever seen a DM rash, and he thinks I need more systemic meds. His choice would be methotrexate (which I hear is not effective on the rash, only the muscle inflammation that I don't have)

. He said Cellcept would be OK except it works slowly, or Imuran. I told him I was there for topical approaches (since my rheumy can't help in that area), so we discussed my potential allergy to Clobetasol Cream, which he said is fairly common. He prescribed Clobetasol Ointment (base of petroleum jelly alone) to see if it helps, and to determine if I was allergic to one of the inactive ingredients, or to Clobetasol itself. He admitted that Propylene Glycol can be irritating to inflamed skin. He said the other 3 steroid options are not as strong, so the preference is to stay on Clobetasol. I asked for Protopic, and he said I would need too much - I would finish the extremely expensive tube in a couple of days - I might as well take it systemically (tacrolimus). But when I mentioned the rash on my face, he prescribed me some to use on my face. Turns out my insurance covers it with a $40 copay!

So the derm wants me to up the prednisone to my original dose of 40 mgs. I'm not prepared to go over 20 (I'm at 15 and seeing some mild improvement after a week). Seems I have precious little time to devote to diet and other measures (he's calling my rheumatologist to discuss). I asked him about sulfur creams/sulfur baths (My mom wants to send me creams from Guatemala), and he did say it works as an anti-inflammatory. Anyone know of any American sulfur products for the skin??

On the diet front, my top 3 suspects are pork, corn and eggs

. When I eat them, my rash seems to flare beginning at the 6 hour mark -- perhaps as they are making their way through my leaky colon??

gluten · Post by **gluten** » Fri Oct 11, 2013 11:40 am

Hi Zizzle, Have you tried to eliminate your suspects one at a time? Jon

Post by **tex** » Fri Oct 11, 2013 12:54 pm

Zizzle wrote:When I eat them, my rash seems to flare beginning at the 6 hour mark -- perhaps as they are making their way through my leaky colon??

Unless you have rapid transit in your stomach and small intestine, the chyme would almost surely still be in your small intestine at the 6-hr. mark.

And besides, it's the small intestine that becomes leaky (with the leaky gut syndrome), not the colon. The small intestine is where all the nutrients are absorbed. Only water and electrolytes are recycled in the colon.

Tex

Zizzle · Post by **Zizzle** » Fri Oct 11, 2013 2:05 pm

Thanks Tex, good point.

Have you tried to eliminate your suspects one at a time?

Jon,
I eliminated corn 2 weeks ago, pork 2 weeks ago, and egg a few days ago. Then I cheated with each one individually and noticed a reaction (increased skin reddening, itching and erosions and much more noticeable face rash). The egg challenge was also done with red peppers, so I might be mistaking a nightshade reaction for an egg reaction, and either way, it wasn't that severe. Since I cut out these foods, I'm back to low-dose prednisone-induced very solid normans.