Autoimmune Crisis? Dh? Help!

[Lissa]

Hi all,

I am a frequent lurker and infrequent poster. I've been gluten free for 5 years, and since then, I've only consumed gluten a few times, mostly through cross-contamination and never intentionally. I was never officially diagonsed with Celiac - by the time I had the blood test, I was gluten light and by the time I had the biopsy of my bowel, I'd been gluten free for a full year. My GI doctor told me that positive response to the diet was enough to say gluten intolerance and to stay gluten free, so that's what I have done.

As the years go by, things have gotten a little funny. I have a ton of seemingly unrelated conditions - gluten intolerance, poly cystic ovarian syndrome, adie's tonic pupil, recurrent benign osteochondromas (been removed twice), gallstones (had gallbladder removed a few months ago) and finally, I'm missing 9 adult teeth (fixed by placing implants). I also have some other things going on with cholestrol levels, etc. It's been suggested that I have a underlying autoimmune disorder connecting everything but my doctors have never been too concerned with connecting everything, so neither have I.

However, recently I've been developing some nasty symptoms and a family member (who has Celiac) suggested that it seems like I'm in an autoimmune crisis. First off, I've been exhausted and sleeping excessively to make it through the day, anywhere from 10-14 hours a night and then usually a 2 hour nap during the day to make it through. It's been getting worse and worse - I almost failed out of school this year (I'm in university) because I was too exhausted to get to my classes. Also, I get this intense flush across my cheeks which actually resembles the butterfly rash from lupus, but I get hot all over and super super red, like I've been wind burned. Finally, this rash has been showing up, which is kinda like the nail in the coffin (you can see pictures in my photobucket):

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Is this dermatitis herpetiformis (excuse my spelling)? It's on the inside of my elbows, although I had similiar (but smaller) lesions all over my trunk/stomach about three weeks after my gallbladder surgery and it lasted a solid month or so. From what I've read about DH, it's found on the outside of elbows as opposed to the inside, and they are smaller pustules as opposed to large things like what I have. What do you all think?

I haven't been able to get an appt with my doctor and the waiting list for specialists is months long, but I'm trying to get some medical attention. Until then, I'm hoping all you wonderful folk can weigh in and give me your opinion. Thanks in advance,

Lissa.

[ravenwoodglass]

For me the DH, when it wasn't covering my body, was concentrated for years just where yours is, on the inside of my joints not the outside.

I notice in your avatar there is a horse. Are you being very careful when feeding and grooming him? Are you avoiding gluten in topicals? We also have to drop iodine from our diet until the lesions have healed and the antibodies have left the skin.

[Lissa]

For me the DH, when it wasn't covering my body, was concentrated for years just where yours is, on the inside of my joints not the outside.

I notice in your avatar there is a horse. Are you being very careful when feeding and grooming him? Are you avoiding gluten in topicals? We also have to drop iodine from our diet until the lesions have healed and the antibodies have left the skin.

I do own a horse, but I board him at a farm and I only get to see him once a month because of my school, but I am very careful there. And as for topicals, when the lesions showed up, I doublechecked everything I put on my body for gluten and so far...nothing. But I feel better knowing that you had DH on the inside of joints! Thank you.

[rosetapper23]

I don't know if what you have is DH, but be aware that it can be found anywhere on the body. I believe that so few studies have been done on this condition, the medical literature is completely wrong when it identifies the "only" places where DH develops. My DH, when I have a recurrence, is always on my face, neck, sole of my right foot, and left hand (yes, it's not even symmetrical in my case). My son's DH can be found in the same locations, but his can be found on the sole of his LEFT food and his RIGHT hand--the opposite sides of the body from where I get it. For my son and me, it is absolutely essential that we avoid iodine, which can be found in iodized salt, seafood, dairy products (except organic), and asparagus. When you eat out, try to order meals that aren't heavily salted, like french fries or potato chips, because the salt oftentimes contains iodine.

Now, with regard to the flushing and hot feelings, those were my primary symptoms when I developed Hashimoto's Thyroiditis. As you probably know, many people with celiac develop this disorder. Even though the "books" say that people who develop this condition feel cold, I always experienced waves of flushing and heat throughout my body. Now that I take Armour Thyroid, the flushing and hot flashes are gone. Hashimoto's can also make you feel completely exhausted and too tired to get out of bed, and it can muddle your thinking and memory. I would highly advise you to call your doctor so that he/she can send you a lab slip for a test for your thyroid. I do suspect that this is what you may have. Oh, and oddly enough, whenever I took too much medication for my thyroid (during the first two years, the thyroid hormone levels go up and down), my symptoms were the same--flushing, hot flashes, lethargy, and memory problems. The only additional symptom I experienced from being hyperthyroid from taking too much Armour was join pain. I only mention this because it's possible that your thyroid could be producing too little OR too much hormone.

I hope you start feeling better soon!