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Immune System Going Crazy!

JenKuz

By JenKuz
in Coping with Celiac Disease

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JenKuz Explorer
JenKuz
Posted

Hi everyone--

I went gluten free last November, after much testing (results listed below). In that time, I got to feeling much better. I had a lot of energy, was feeling very happy, sleeping well, and my gut symptoms cleared right up.

Lately I have had some kind of relapse. Over the last few weeks, it seems that my immune system is going crazy.

I've had "immune reactions" as my doctor non-commitally described them, in my corneas and have to take steroid drops.

I've had bouts of dermatitis my whole life, for which i used to use a tacrolimus cream. This has been gone for a while but has recently come back with a vengeance. I get it especially in a rather delicate spot at the inside of upper thigh where it meets the pelvis. I don't get wet blisters like most DH; but i get red bumps that itch like crazy (worse than chicken pox). Now I'm getting itchy blisters around my ankles by the tendons.

I will probably have a dermatologist test me for DH so I can get an Rx if needed. I hesitate, however, because I managed to get all the info I needed for dx of celiac without getting an official dx (long story). Which I think is to my advantage in some ways because I know as well as most docs what to do to take care of it, so I thought, but this way I don't have a preexisting condition.

However, I itch like I want to die, and my immune system is apparently going hawire.

Meanwhile, my GI symptoms have come back with a vengeance.

I have to admit I eat out a lot, and because of that the potential for CC is high, although I eat mostly fresh unprocessed foods at home.

I feel restless and listless at the same time, if that's possible, and sometimes I hardly have the energy to take my dog out for a walk. This came on suddenly and is very unusual for me; I'm usually more on the hyperactive side of things (thank-you, crazy thyroid). In fact, one of the reasons I was so sure there was something really wrong with me, when I first became sick, was because (well the GI symptoms were pretty insistent) but also because I was so worn out, and it's such a departure from how I usually feel.

I'm so disappointed to be relapsing. I know it's only been 6 months, and I'm not the most religious of gluten-avoiders ... I mean, I never eat it knowingly, but I do eat out, like I said...but still. I was so elated to have figured things out, and was really feelign so much better after I cut out gluten...and now it's like I'm right back where I started from! Same problems, and feeling even worse.

How do you deal with setbacks like these? How do you marshall the discipline to get even more restrictive in your diet and your life?

Should I suck it up and go to the dermatologist? Or should I be mindful of my insurance? I mean, I'm on student insurance now, and surely when I switch to a new company after I start working there will be a preexisting condition clause. On the other hand, I can hardly keep from scratching like an ape. On the other hand, it seems it's not just in my skin, it's the rest of my immune system too.

I'm tired of getting tested. I don't want to go back to the drawing board searching into, i dunno, thyroid, RA, whatever else it could be....but if I need to, I need to.

How do I make these decisions? What do I do? Please help me!

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ravenwoodglass Mentor
ravenwoodglass
Posted

"I have to admit I eat out a lot, and because of that the potential for CC is high, although I eat mostly fresh unprocessed foods at home."

I would stop doing this for at least a couple of months. Eating out is very risky for us. I would eat only whole unprocessed food I prepared at home untill symptoms resolve and then if I felt I had to eat out I would only pick one place a week and see if I am reacting to what I eat there.

Nancym Enthusiast
Nancym
Posted

You need to be tested for autoimmune diseases, they should run CRP ESR the tests for lupus and whatever else they can think, you should be checked for thyroid antibodies too, it is possible to have both Graves disease and Hashimotos at the same time, that could be causing some of your symtpoms. Lots of autoimmune diseases attack the eyes.

And you should get more strict with the diet by not eating out so often. You might want to try following the Paleo diet, it seems to work well for people with autoimmune issues.

JenKuz Explorer
JenKuz
Posted
  • Author
You need to be tested for autoimmune diseases, they should run CRP ESR the tests for lupus and whatever else they can think, you should be checked for thyroid antibodies too, it is possible to have both Graves disease and Hashimotos at the same time, that could be causing some of your symtpoms. Lots of autoimmune diseases attack the eyes.

And you should get more strict with the diet by not eating out so often. You might want to try following the Paleo diet, it seems to work well for people with autoimmune issues.

Yeah, I always suspect autoimmune disorders. My grandma has MS (and osteoporosis, and most likely has had celiac all along undiagnosed, because she has a lot of stomach problems since childhood). My mom has RA that expresses in her eyes (uveitis and iritis). I had a bout of hyperthyroid as an infant, of unknown etiology...

But everytime I run off that list for a doc, they basically tune me out, and none of them have considered autoimmunity in my case. The eye doc said it wasn't iritis, just an "immune related opacity in the cornea," which apparently sprang from nothing out of nowhere as far as he's concerned.

I've had my thyroid hormones checked several times over the years but they've never tested for antibodies. They never identified a cause for my thyroid problems as a kid, just said that it was *probably* a virus. I don't know what they tested for back then, and my mom doesn't recall everything (it's been 28 years after all).

So. Yeah. I guess, I would love to be tested for that stuff. But what kind of doc to I get a referral for? And will they give me a referral for it based on corneal opacities and a rash? If I get a referral, will it take three months to get in? If I get in, will they actually take me seriously? How much will the diagnostic work-up cost me this time around? These are the questions that plague my nightmares everytime I think about going to the doc....I'm in graduate school and up to my eyeballs in student loans, most of which have been taken out to cover medical bills....

JenKuz Explorer
JenKuz
Posted
  • Author
"I have to admit I eat out a lot, and because of that the potential for CC is high, although I eat mostly fresh unprocessed foods at home."

I would stop doing this for at least a couple of months. Eating out is very risky for us. I would eat only whole unprocessed food I prepared at home untill symptoms resolve and then if I felt I had to eat out I would only pick one place a week and see if I am reacting to what I eat there.

Boy, are you right. I'm definitely getting started on this soon. I have been trying to get myself to go back to this way of eating for a couple of weeks now. When I did it before (I was following the specific carb diet) it didn't seem that hard.

I don't know what's different now, but I feel less up to discipline-wise than before...but I need to suck it up and do it already.

tom Contributor
tom
Posted

Have u looked for possible changes in seemingly innocuous things like replenished vitamins or medications or a prescription switched to generic? I got screwed on one of these once. It was in my mind as 'safe' so I didn't even consider having to verify again. Sick for 2 weeks before tracking it down.

Or maybe a new lipstick that's not gluten-free.

Even if it seems unlikely, it'd sure be better than all the more serious possible causes.

Good Luck

2kids4me Contributor
2kids4me
Posted

you should have Behcets disease on a list to be ruled out. See link for more info or do some searching yourself. see if it fits

Beh
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