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Old 11-16-2012, 06:51 PM   #1
Join Date: Nov 2012
Location: South Carolina
Posts: 4
silverspiral HB User
Got any ideas?

Hi everyone,

Iím 22 years old, but I feel so much older than that. I was diagnosed when I was 14 with autoimmune thyroiditis (transient thyroiditis) so I would go into hypothyroidism, then hyperthyroidism, then normal. When I was 16 years old I lost most of my hair and a really aloof doctor said my transferrin was low. I took iron supplements and a few months later my hair stopped falling out. At age 20, I was diagnosed with Celiac disease. I have never felt the same since I was 14 and each year odd new symptoms emerge that have made me question my sanity. Iíve been feeling horrible this past year with these past few months getting worse. My symptoms include extreme fatigue (to the point where I hold my breath for a few seconds because breathing becomes exhausting), constant low grade fever (99.9-101), heart palpitations, dizziness (out of the blue; standing, sitting, laying down, etc.), constant pulsating headaches lasting over 3 hours, painful swollen joints in both hands and fingers, and decreased strength in my right hand. My right hand swells and hurts the most right between the base of my thumb and edge of my wrists. Sharp pains will shoot up both of my arms all the way up to just before my elbow. A strange rash has appeared for the past 2 years at the end of August. It looks like a small raised rash on the side of my neck that travels down my neck to my upper chest and back. They look like welts that itch and burn. They actually turned welt-like within 20 minutes. Last year they didnít disappear until December even with 3 prednisone treatments. This year the rash went up to my face and appeared almost scale-like in appearance with only fine red raised bumps. At one point, my face was flushing red and only my right side turned red and it burned. Iíve had 1 treatment with prednisone this year and it seemed to work this time and the rash went away within a month. Iíve also been experiencing my body jerking at nighttime. Mostly it is in my legs, but my arms and upper body will do it too spontaneously. My hands and feet do turn blue and purple in cold weather and my feet turn blue when standing. Sometimes they start to burn and I get a needles and pins feeling in my feet. I am experiencing a burning sensation in the palms of my hands. I honestly have no idea what is going on with me and neither does my primary care physician. I feel embarrassed every time I go to the doctor, but he just acts like itís no big deal and sends me on my way. I know something is wrong, but Iíve got no idea what it could be. Iíve also been getting fever blisters twice a month. My mouth starts itching and wakes me up at 3:30 am every 2 weeks. I had some lab work done with my ANA negative and Rheumatoid factor negative. Ferritan was 82 with reference range of 8-388 ng/ml. My sodium and potassium were on the low end of normal. My other labs keep coming up normal. Part of me feels joy and the other part is so frustrated because I just want to know what 'this' is. Any Ideas?

I did have sinus surgery back in 2011.

My family has a history of diabetes, heart disease (great grandfather and grandfather had heart attacks at 34 years and 32 years of age), and CHF.

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Old 11-17-2012, 09:53 AM   #2
Join Date: Feb 2004
Posts: 5,493
VeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB User
Re: Got any ideas?

Hi, silverspiral, and welcome. I'm sorry for your issues, both the known (Celiac and thyroid), and the new. I'm only a patient, of course, but what you write sure makes sense to me. I'd want to know whether your known autoimmunes (Celiac and autoimmune thyroiditis) explain all your symptoms satisfactorily. And whether your "knowns" are both being adequately managed. Finally, whether some new things might be on the rise.

Here are some questions I'd probably pose, if I were in your shoes.

RASHES. I know there are certain rashes that can occur in Celiac, so I'd want to know if ALL my rashes are "for-sure" Celiac-related, rather than some new rash from some new condition. What doctor follows your Celiac, a gastroenterologist, or is it your PCP? Have you ever seen a dermatologist who knows Celiac rashes?

SODIUM/POTASSIUM. I think these can deplete with malabsorption (mine did when I struggled with chronic IBS-like problems). You could ask.

YOUR SINGLE ANA TEST. I'm sure no doctor, but I don't think a single ANA test proves very much. For starters, ANA can flutuate as certain conditions flare and recede, so timing can matter. The LAB can matter: titer tests are tricky, I've read, and labs aren't equally skilled at them. The ordering DOCTOR matters: with known autoimmunes, I'd want a specialist if possible (see below). MEDS can matter: if tested while on (or just after) Prednisone, did the Prednisone ruin (alter) the lab results?

BLUE HAND/FEET. Made me think of Raynaud's, also circulatory problems---but since I'm a (dumb) patient, I bet there are more possibilities.

YOUR DOCTOR(s). I couldn't tell what doctors you see, if any, in addition to your PCP. Do you have a gastroenterologist? An endocrinologist? In my area, many specialists assume the overall care of their patients, meaning act both as specialist *and* as PCP. If that's a possiblity for you, I'd seriously consider trying to get "adopted" by a gastroenterologist, at least for the time being. Maybe he/she would want you to see a rheumatologist now or later on, down the road.

OTHER BOARDS. You could look for fellow Celiac sufferers via the search box. Type in "Celiac", then opt to search all boards. (I'm thinking surely there are people in the boards categorized as "Digestive & Bowel". If I come up with a more precise suggestion, I'll write you a postscript.)

I really hope you can gain better traction on your problems soon. Also, that you posting, either here, on another board, or on multiples! Sending my best wishes to you, sincerely, Vee

Last edited by VeeJ; 11-17-2012 at 09:58 AM. Reason: spelling

Old 11-17-2012, 11:12 AM   #3
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Re: Got any ideas?


There is a Celiac board. In the blue bar (it's just above the title of whichever board you're currently on), locate and click "Find a Board". When the resulting list appears, it's sorted by category. To resort into alpha order, click the hyperlink that's available to do that.

Also, since first writing, I re-read a list of problems possible in Celiac. The list included other things you mentioned: mouth sores, peripheral neuropathy, and joint pain. Also a rash called "dermatitis herpetiformis".

Do you work with a dietician? If not, I'd ask your PCP for names.

I'm sorry I misdirected you earlier. But I hope you review absolutely everything about your known dx'es, post a lot (to talk with other patients), borrow library books, etc. See where things stand. And of course press on if you have leftover symptoms that don't fit thyroid & Celiac. Warm wishes, Vee

P.S. I forgot to say, some of my doctors embarrassed me, too, some deliberately, totally inexcusable in my book! I was in my mid-20's when GI problems hit hard (a kind of embarrassing condition in the first place). The women doctors I've seen have mostly been better on this count.

But I've become more pragmatic as I've aged. I stay put with whichever seems to know his/her job the best, meaning I don't have to "like" a doctor, I just have to feel I'm doing better because of his/her expertise. But of course you have to get yourself into your PCP's office, else nothing can happen. If you can't do that easily, without butterflies in your stomach or nausea or whatever, I hope you do find a new PCP, and soon.

Old 11-17-2012, 03:38 PM   #4
Join Date: Nov 2012
Location: South Carolina
Posts: 4
silverspiral HB User
Re: Got any ideas?

I've only met a few doctors who haven't tried to embarrass me.
I've been on a gluten free diet for the past 2 years. I've spoken with my gastro doc and he says the rashes aren't from that. In all honesty, I feel so much worse on my gluten free diet, but I am careful and don't mix anything. I do have a dietician who has helped a bunch, but all of these strange new symptoms are emerging. My thyroid levels keep coming up normal and my endocrinologist said to me "98% of the time, we're just guessing with people's issues. I've got no idea what's wrong with you."

I was just thinking with these autoimmune disorders, maybe there is one that I and the doctor's have missed. I've had my primary care doctor bring his other associates into the room and I had my top off and they are all staring and touching my back trying to figure out what it is. They didn't do this in an embarrassing way. I actually thought it was kind of funny with 5 doctors watching the redness and welts start forming before their eyes. But, even they had no ideas and kept saying "I haven't seen anything like that."

I even had one patient tell me she had the exact same symptoms and was diagnosed with lupus after 15 years. I obviously don't want it to be lupus or anything, I just want to know what's going on.

Old 11-18-2012, 03:18 AM   #5
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Re: Got any ideas?

Silverspiral, good morning. What you just wrote caught my eye because I had rashes for 8+ years that 8 suburban dermatologists never dx'ed correctly, despite bloodwork, scrapes and two deep-punch biopsies.

What does your rash look like & feel like? Is it episodic (appear, fade, and reappear)? How long does each batch last? Does it scar or depigment? Do you see any correlation to UV rays (sun &/or tanning parlor)? Does it occur ONLY on photoexposed skin? (UV correlation could be VERY meaningful.)

My rashes were on upper arms & back. Early ones were merely raised red bumps, like mosquito bites, 3-4 batches a year. In 5th year, those same bumps would recur but EXPAND. First into perfect red circles with clear centers, then expand into larger oblong shapes, then fade. At the end I had overlapping lesions in all stages = bumps, circles, and oblongs. Barely itched or burned (but I think that can vary among patients).

In my pre-rash years, I'd struggled with wicked GI problems, dx'ed as IBS, enough to get me hospitalized. Urinary (cystitis, plus one total blockage from stones). Joint pain & pain along long bones of arms/legs (since age 13). Migraines. Hair loss (esp. hairline). Non-stop periods (12 weeks sometimes, with anemia). Fatigue. At times ESR elevated & WBC depressed. B-12/Folate anemia often. Last came the rashes, and so much nerve tingling that I thought I had MS, albeit with a very weird rash.

I finally found a pic of my own rash---said WHOA---and took myself to a metro teaching hospital rheumatologist. He also sent me to a dermatopathologist for one final biopsy. Dx: systemic lupus, the very rare kind where ANA stays negative, but anti-Ro and anti-La are positive. The rash was "subacute cutaneous lupus erythematosus" (SCLE). I've been on Plaquenil for years & must avoid sun religiously. Am MUCH better that I was, although I still get tired & hurt.

Here's some of what I "learned" from all this (quotes b/c I'm only a patient).

Most drs. can recognize malar & discoid lupus rash PDQ, but there are maybe 12-15 lupus rashes overall, although only 2 are "useful" (common) enough to "make" the lupus criteria list. But if you have ANY kind of lupus-specific rash, you DO have lupus to some degree. By that I mean, cutaneous-only vs. systemic (and there are 2 other forms as well).

My rash was SCLE annular (ringlike) form. BUT there's another SCLE rash called papulosquamous (a/k/a psoriasiform) that looks like psoriasis (but isn't). Anti-Ro and anti-La are often (not always) found in people with SCLE rashes. Yet ANA is positive perhaps only 2/3 of the time (who knew?!?). It's thought that in such people, ANA is positive but is being "masked".

SCLE rashes favor women of western European backgound.

A rash suspected to be lupus-mediated can be deep-punch biopsied; but an *essential* second step, when the patient doesn't quite fit the diagostic critera, is immunofluorescent stain testing. The stain tests can reveal linear bands considered virtually diagnostic of lupus. This test is essentially a "lupus band test" (LBT), I think. (My suburban dermies never performed those stain tests, and, not knowing that, I trusted their half-baked work.)

Re: my GI problems, my city rheumatologist wasn't in the least surprised, said GI problems are common in lupus. (Who knew?)

Re: skin specialists, a dermatopathologist is BOTH a dermatologist and a pathologist, and thus can do his own labwork (mine did). They're rare: I believe you find them mainly at teaching hospitals. Doctors at this level (researchers) trade skin samples back & forth like baseball cards! He had me recall my two previous punches (frozen for several yrs.), then retested them properly, also did a new punch. All were "grossly positive".

Teaching hospitals see the AI's in all their shapes & forms: the law of large numbers means they see just about everything, I bet. Are you near any?

Lupus varies widely and can remain "subacute", meaning there's no major organ involvement (heart, lungs, kidney, CNS). The easiest cases to diagnose are the more severe ones: malar rash, ANA, anti-ds-DNA, and kidney involvement spell lupus to even a neophyte doctor.

Lupus has 11 diagnostic criteria. Also, a world-famous rheumatologist developed a list of "alternative criteria" that's fascinating. You can read those both in the "sticky posts" section of the lupus board. There are several other "stickies" there, too.

On the lupus board, people have described all sorts of rashes. Some turned out to be lupus-specific rashes, some were rashes also seen in lupus that aren't lupus-specific, and others were neither.

Re: your CELIAC TESTS. What were your lab and/or biopsy findings, were they unequivocal? (Only curious, you don't have to answer.) But of course Celiac can co-exist with other AI's, as you already know.

Anyway... I hope you post again on anything that catches your eye. Good talking with you. I'm really sorry you're struggling. Your comment that you feel WORSE on a gluten-free diet made me think of the summer I ate (you'll love this) only Jello, bouillon, and crackers, yet still had terrible GI symptoms despite the restricted diet & GI meds. Bye for now, thinking of you, Vee

P.S. Just recalled someone's posts on her weird rashes (whorling & wheal-like, I think, but I'd have to locate & reread) and awful GI problems. Her doctors suspected lupus for some time, but got no confirming blood or biopsy findings. Finally dx'ed as allergic to potatoes! It seems these things can go many ways, some so unexpected that it's mind-boggling. Bye again, V.

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