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Still Sick!


Jordan E

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Jordan E Newbie

I'm Jordan, and I was diagnosed in July 2010. 21 year old male, 6'2'' and weigh 200lbs.

I have been on a very strict diet, and have not eaten gluten since. My previous symptoms included upset stomach, migraines, anxiety and mood changes, depression, and a nasty red itchy rash on my back/chest.

Despite eating very well, I am getting worse. As soon as I changed my diet, I felt incredible, and lost 25 pounds immediately. I am slowly gaining it back, and have been dealing with severe depression and suicidal thoughts. My stomach and head hurt all the time now, and it feels exactly like when I would eat Gluten.

Is it possible this is a residual thing? Or could it be something else that's killing me?

Please help!


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ravenwoodglass Mentor

Are you eating mostly whole unprocessed foods? If not you should try to as much as possible. Are you careful about CC and have you gotten a new toaster, colander and gotten new pans if your old ones are scratched? If not you need to. Most of us become much more sensitive to very tiny amounts of gluten after we go gluten free so even the little bit of residue in an old colander can contaminate your gluten free pasta or veggies when you drain them.

The itchy rash may be DH, if it is you need to cut out iodine for a while to help it heal. Are you on any meds either script or OTC, if so have you checked to make sure that they are safe.

Some of us have other intolerances come to the forefront after we are gluten free, the most common are dairy and soy. If you are consuming them you may want to drop them for a bit to see if it makes a difference.

I also suffered from severe depression for most of my life. It resolved gluten free but even the tiniest bit of gluten will bring it back. I am able to fight the suicidal ideation by telling myself that it is the gluten and it will go away. Fortunately for me it now lifts very quickly.

We do often have some ups and downs in the beginning, hang in there and I hope you feel better soon.

rain Contributor

I had to reply because I was diagnosed just a few months before you and I'm still struggling pretty hard. My aggravation is that my symptoms are constantly changing, it's making me nuts. So today I learned that for some people (that includes me) coffee acts on the body in a similar way as gluten. That explains a whole lot of my symptoms (shifting moods, exhaustion, itchiness, dryness, etc etc). I drink about a half cup of coffee 3x a week (and thought this was harmless) and just today I connected the dots.

I also finally, after a lot of digging, found a good doctor to work with - that helps a lot too.

It's kind of hard to describe but I'm getting better at 'sensing' what is good for me and what is not, but that's just starting!

I guess I'm saying that it's easily possible that something else is causing your symptoms... Hang in there, and I hope you're able to figure it out soon!

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    • Scott Adams
      If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      One of our sponsors here is a nut/seed/dried fruit, etc., company that sells gluten-free versions. Tierra Farm: https://www.tierrafarm.com/discount/gfships
    • trents
      You might also consider a low iodine diet as iodine is know to exacerbate dermatitis herpetiformis. But be careful with that as well as there are health problems that can accrue from iodine deficiency.
    • suek54
      Hi, Yes, the rash has gone. I still get the itches but there is nothing to see now, apart from a lot of discoloured areas where the rash was worst. Occasionally I get a single lump come up, a bit like hives, but no bigger than a pea and it goes after 24hrs and a steroid cream application.  And yes, giving the gluten-free diet 110%. Very careful about any cross contamination.  This is my fifth autoimmune condition so well and truly on that bandwagon. 
    • trents
      Welcome to the the celiac.com community, @suek54! Is the Dapsone getting the rash under control? Are you practicing a gluten free diet yet? The only known cause for dermatitis herpetiformis is celiac disease.
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