Desperate - When Does It Get Better?

[gbrennan]

I am self-diagnosed DH, been gluten free 6 months. I felt like I was getting better, but have been experiencing a terrible outbreak for the past month. Pretty sure I haven't eaten gluten, and have gone dairy free, avoiding iodine. Would love to hear other people's experiences about how long this took.

Almost positive this is DH - can't imagine what else it could be. This is ruining my life.

[squirmingitch]

gbrennan, Try reading this thread. I was having problems like you are & posted. These good people dissected everything for me & came up with salicylates. Read the thread. It has made a big difference for me.

https://www.celiac.com/forums/topic/91375-upset-confused-venting-scared-frustrated/

[IrishHeart]

Excerpted From Celiac Disease: The Hidden Epidemic. Dr. Peter H. R. Green and Rory Jones Chapter 11

..."DH is very erratic. Since the skin may not be rid of IgA deposits for more than 2 years after starting a gluten-free diet, flare- ups occur without obvious gluten ingestion.

It may take patients a substantial amount of time to erase years of IgA buildup in the skin."

A flare could also be due to inadvertent gluten ingestion, iodine, or the use of NSAIDS. Opinions vary as to whether topical lotions and creams have ingredients that might trigger a reaction and stress may exacerbate the flares, although there is no science behind the stress link.

If the patient has DH, it may take years for it to get better. (Green )

I know that some people also report a huge improvement following a low salicylate diet --as Squirmy has suggested.

Hope you feel better soon!

[gbrennan]

gbrennan, Try reading this thread. I was having problems like you are & posted. These good people dissected everything for me & came up with salicylates. Read the thread. It has made a big difference for me.

https://www.celiac.com/forums/topic/91375-upset-confused-venting-scared-frustrated/

I just read that coconut milk is high in salicylates - have you had any experience with coconut products? I drink coconut milk and water pretty regularly. Thanks for the link.

[squirmingitch]

I haven't tried the coconut milk or water b/c of iodine content which I was avoiding. I did try the coconut oil but then found it's high in sals sooooooo...... Coconut is off my list for the time being. I have some luscious coconut macaroons sitting here that I ordered & they sit unopened.

Hang in there.

(((HUGS))))

[Di2011]

Sals are big problem for me too. Raisins were my first obvious candidate and then corn became another and both are on the high sals content list. BTW I believe sals effect me in a 'cumulative' way. The more I eat over time the worse the DH gets unlike: Iodine which was a temporary flare trigger in my earlier days but now I can tolerate it in moderation.

[ciamarie]

And for me, the biggie I need to avoid is MSG and all of it's related variations (such as 'natural flavors'). See here: Open Original Shared Link

I even recently tried some ground turkey that has 'natural flavors', and guess what? Started itching again... I am also somewhat low iodine now too, since I went that route after 2 months of a gluten-free diet and not much progress on the DH. At that point I did have progress on other things like brain fog, etc. so I knew I was getting close. I'm now about a week away from 6 months, and I very rarely have itchiness, and when I do it doesn't last long.