Another Newbie With Questions And 2 Glasses Of Wine

[DHLady]

I am a newbie to the gluten-free diet.  (1/1/14) I see that I should also pursue a low iodine and low salicylate diet as well.

I was diagnosed with DH in 2010. 

I too, am skeptical whether I truly am suffering from DH.

My break outs usually are bilateral in location; developing on both knees, elbows, arm pits, forehead, sides of my neck, mid-back, buttocks and most recently my fingers and genital area tissues.  Ouch!

The unbelievable burning itch right away was what sent me to the Dr. in the first place to begin my guinea pig days on the road to diagnosis.

A biopsy was done and lots of blood work every couple of months for over a year.

Steriod creams intensified the burning rashes.

I tried one Rx, which did not help at all.  I can't recall the name of it right now.

After testing 50 - 150 mg of Dapsone daily; my Dermatologist and I found a comfortable does of 100 mg per day.

That dose worked like a dream for me!  It controlled all break-outs.

Intense stress did cause flare-ups while on the Rx.

If I forgot the take a dose, I would experience symptoms by the end of the day.

My Derm. was always worried about lethargy and neuropathy, which I never suffered from.

My iron level was low, but not dangerously low for a woman of my age.

The gold ticket that spurred getting off the Dapsone was my oxygen saturation level.

As soon as I began taking Dapsone, my O2 was 90-92. 

Prior to taking Dapsone, I have no idea what my O2 level was.

My primary physician and Derm. decided that the Dapsone was causing damge to my red blood cells; which in turn were not sufficiently carrying oxygen to tissues in my body.

A blood gas draw on 12/17/13 confirmed that my oxygen level was even worse . . . around 86.

I have no asthma or breathing difficulties at all.

So, as of 1/1/14; I quit taking Dapsone cold turkey and began a gluten-free diet. 

After reading posts on this forum, I see that I have a long road ahead of me.

This moring, I woke up with horrendous burning rashes in all of the areas described above.

My only hope in this miserable lifestyle change is that I truly am symptom free one day.

Any and all scientific findings, support or advice are welcome!

[Blaze422]

Not to sound like a grizzly old veteran, I have a hard time understanding why you were taking dapsone and not gluten-free. When you were diagnosed with DH...you had regular blood tests and had your o2 levels checked but never heard that you needed to be gluten free?

[DHLady]

  On 1/5/2014 at 7:36 PM, Blaze422 said:

Not to sound like a grizzly old veteran, I have a hard time understanding why you were taking dapsone and not gluten-free. When you were diagnosed with DH...you had regular blood tests and had your o2 levels checked but never heard that you needed to be gluten free?

My apologies!

Yes, I knew from day 1 that the only cure would be to go gluten free.

I chose to take the Dapsone, which acted as a band-aid.

I simply was not ready to make the diet change and still am not, honestly.

It sucks!

[squirmingitch]

Oh my, you have to start from square one. I don't think you need to try low salicylate just yet. Low iodine could well be a factor though. You will need to be pristine in your gluten-free diet & not have ANY slip ups. 

 

BTW, from what you describe of your rash & also the response to the Dapsone it is my opinion that you DO have dh. Now you can keep doubting that or you can wake up & smell the coffee & get started where you should have in 2010. You spent all that time on Dapsone without going gluten-free when that time could have had you way down the road & a lot of the antibodies would have been out of your skin by now. I'm afraid you have signed your own sentence. I'm sorry. Truly I am but you have a rough road ahead of you & only you can travel it. We will help as much as we can but ultimately you are the one in control.

[kareng]

  On 1/5/2014 at 4:25 AM, DHLady said:

 

My only hope in this miserable lifestyle change is that I truly am symptom free one day.

Any and all scientific findings, support or advice are welcome!

 

 I don't feel miserable.  Its a bit difficult, especially in the beginning.  You might want to read the What's for dinner thread.  We eat very well.

 

 

https://www.celiac.com/forums/topic/75238-the-whats-for-dinner-tonight-chat/

[pricklypear1971]

  On 1/5/2014 at 4:25 AM, DHLady said:

I am a newbie to the gluten-free diet. (1/1/14) I see that I should also pursue a low iodine and low salicylate diet as well.

I was diagnosed with DH in 2010.

I too, am skeptical whether I truly am suffering from DH.

My break outs usually are bilateral in location; developing on both knees, elbows, arm pits, forehead, sides of my neck, mid-back, buttocks and most recently my fingers and genital area tissues. Ouch!

The unbelievable burning itch right away was what sent me to the Dr. in the first place to begin my guinea pig days on the road to diagnosis.

A biopsy was done and lots of blood work every couple of months for over a year.

Steriod creams intensified the burning rashes.

I tried one Rx, which did not help at all. I can't recall the name of it right now.

After testing 50 - 150 mg of Dapsone daily; my Dermatologist and I found a comfortable does of 100 mg per day.

That dose worked like a dream for me! It controlled all break-outs.

Intense stress did cause flare-ups while on the Rx.

If I forgot the take a dose, I would experience symptoms by the end of the day.

My Derm. was always worried about lethargy and neuropathy, which I never suffered from.

My iron level was low, but not dangerously low for a woman of my age.

The gold ticket that spurred getting off the Dapsone was my oxygen saturation level.

As soon as I began taking Dapsone, my O2 was 90-92.

Prior to taking Dapsone, I have no idea what my O2 level was.

My primary physician and Derm. decided that the Dapsone was causing damge to my red blood cells; which in turn were not sufficiently carrying oxygen to tissues in my body.

A blood gas draw on 12/17/13 confirmed that my oxygen level was even worse . . . around 86.

I have no asthma or breathing difficulties at all.

So, as of 1/1/14; I quit taking Dapsone cold turkey and began a gluten-free diet.

After reading posts on this forum, I see that I have a long road ahead of me.

This moring, I woke up with horrendous burning rashes in all of the areas described above.

My only hope in this miserable lifestyle change is that I truly am symptom free one day.

Any and all scientific findings, support or advice are welcome!

Well, it seems you doubt your dx.

If you've been eating gluten for three years while on dapsone you could go in for Celiac antibody testing. You could also try a dh punch biopsy, if you haven't been on steroids. I have no idea if dapsone affects biopsy results...you'd have to ask your derm.

One week off gluten probably won't change things, but I probably wouldn't go past two weeks and try antibody testing. Be warned, many dh sufferers test falsely negative in both antibody and biopsy...so, be prepared to trial gluten-free to see what happens. But if it comes up +, maybe that will help settle the dx in your mind.

My personal opinion is that any negatives or inconveniences of the gluten-free diet are negated by the threat of that damn rash....so, given the alternative I'll stay gluten-free.

Ice packs, mild moisturizers (I like VaniCream), clean gluten-free eating...it'll get you started. I'd try low iodine (which does suck, I agree) to see if it helps. Sure helped me, and I was thankful at the time.

[Blaze422]

I'm going to take back my thread before it gets totally hijacked....

Do the veterans on this board put any stock into the "leaky gut" hypothesis? It is above my pay grade to discuss/ re-hash the auto-immune vs allergy discussion, but one of the reasons I am attempting to go low Sal is my attempt to eliminate anything that my encourage a auto-immune response.

That said, my reading has led me to give up alcohol...Oh!!!!...The Humanity!!!

I'm thinking that if alcohol might be causing leaky gut ( drink 2-3 glasses of wine a night)...I can give it up.

Thoughts?

[GottaSki]

Hi Blaze!

 

Celiac Disease causes the small intestine to become permeable so it is technically "leaky gut".  Once damaged the small intestine can have a very tough time processing many types of foods until it is healed.

 

Not sure how long you've been gluten-free...so it may simply be a matter of giving the strict gluten-free diet a chance to start healing.

 

As others have mentioned - eating simple whole foods is the best route and coincidentally the easiest way to figure out if you are having issues with other foods.

 

Two items you should investigate:

 

Lectins -- Foods that have high levels of lectins are thought to cause leaky gut -- Grains, Dairy, Legumes, Eggs and Nightshades are the main groups of these foods.

 

Open Original Shared Link

 

Histamine -- Many of the foods you had listed in this thread along with your beloved wine contain high levels of histamine or are histamine inducing foods.  The damage from Celiac Disease can prevent production of the enzymes needed to process these foods causing your body to accumulate too much histamine.

 

Open Original Shared Link

 

Oh...and some folks have good luck healing their gut with GAPS...for me it was a disaster as it is based on fermented foods which I could not tolerate at all do to my Histamine Intolerance.

 

Hope this helps...never quit learning, but do be careful how many remedies you trial at the same time -- I learned that the hard way 

 

Hang in there

[pricklypear1971]

  On 1/6/2014 at 10:27 PM, Blaze422 said:

I'm going to take back my thread before it gets totally hijacked....

Do the veterans on this board put any stock into the "leaky gut" hypothesis? It is above my pay grade to discuss/ re-hash the auto-immune vs allergy discussion, but one of the reasons I am attempting to go low Sal is my attempt to eliminate anything that my encourage a auto-immune response.

That said, my reading has led me to give up alcohol...Oh!!!!...The Humanity!!!

I'm thinking that if alcohol might be causing leaky gut ( drink 2-3 glasses of wine a night)...I can give it up.

Thoughts?

Try it and see? Everyone reacts so differently....

Alcohol is one if those things they say to drop for healing, so whatever that's worth.

During healing I had my legendary wine tasting fiasco, so I voluntarily took myself off for quite a few months. Had no desire to repeat that experience, plus the thought just turned me green.

And gut permeability seems to be widely accepted, even by the mainstream. They (mainstream) may think it's more isolated but there is acceptance.