Finally Getting Some Different Test

[sandiz]

Well after 2 yrs and symptoms back I finally have some new tests to do. New celiac blood work up, referral to gastoroligts(sp) and blood work for lupus. Has been a struggle to get these tests as doc has not been on board with me and my pleas.

Does anyone else have lupus symptoms?

[beebs]

Yes - I have many. I also have negative blood tests though - so I see a rheumy and have been for 5 years and at this stage all we know is there is some kind of connective tissue thing going on but no official diagnosis. Nothing is ever easy in terms of diag with me arrghhh!! Good luck with your tests - I hope its not that for you

[UKGail]

Yes. I am under the care of a rheumatologist who is just observing at the moment. He would feel happier I think if I would accept a prescription for Presidone(sp?), but I am trying to avoid this and am hoping the gluten free diet will alleviate my symptoms. It seems to be helping with many things, but am still not sure that it is tackling everything. In particular it doesn't seem to have had any effect on photosensitive swelling and rashes. There may be an element of food intolerance or gluten withdrawal at play here though. Still trying to work it all out. The blood work has been more or less ok, except for a very high ESR (SED rate).

[beebs]

Yes same here - always high ESR. Negative ANAs, negative for RA, negative for Sjogren's on the bloods.

I too have been sitting and waiting to see if the arthritis and sicca and photosensitivity would go into remission after I went gluten free - but its all just getting worse. I have been gluten-free for 10 months - boo!

[UKGail]

Beebs - Yes, everything you mention is the same for me. Do you also swell up with the photosensitivity, or get the rash only? My hands and forearms swell, as does my abdomen if I get a bit of warm sun on me. I can't take any heat over about 25 degrees C either, makes me feel unwell. I tested negative for Celiac, but have 5 other family members who are, and most of the rest don't want to be tested but have suspicious symptoms. The diet is helping with the joint and muscle pain, and heartburn, and there are changes in digestive behaviour, but the latter has not normalised by a long shot. I have had previous thyroid problems, and my TSH level varies,but is mainly sub-clinical at the moment.

5 years seems a long time to be watching for trouble. I feel for you. However I guess a firm diagnosis is no fun either. Lets hope it all settles down for both of us.

[mushroom]

I am negative ANA, negative RF, for years was extremely high ESR and CRP. (Never tested for celiac because I stopped gluten before I knew about it.) Stopped gluten for psoriatic arthritis -- first diagnosed ffibromyalgia in my 40's, then polymyalgia rheumatica in early 60's, then RF negative rheumatoid arthritis, finally psoriatic arthritis (which is often RF negative). So I quit gluten about the same time as the psoriatic arthritis diagnosis. Ended up on Humira having failed all the standard DAMARDs, so of course this suppresses the immune system. I have also lipedema which makes me susceptible to cellulitis, and whenever I get that I have to stop Humira. I have been off Humira now for three months with an infection and no return of the rheumatoid arthritis so far (previously it has flared up and caused me horrible pain). My psoriasis is fighting to come back but I am trying to send it away. The diet does seem to have had a positive effect, after 3-1/2 years, on the RA and the psoriasis is having a hard time breaking through right now although my scalp is getting bad. With my leg nearly fully healed, I think I will take a TNF shot next week and then see what happens. This Humirra-free experience has been totally unlike the others.and the longest I have gone without arthritic pain on the gluten free diet. It could be just that I am in a non-flare period (it has happened,) or it could be a dietary effect. I will experiment.

[lynnelise]

I have many lupus symptoms. In fact every new doctor I see and tell my issues to asks if I've been checked for lupus. I have many times and my blood work is always fine. The rhuematologists says she is 95% sure it cannot be lupus. Sadly no one seem to know what it can be and I'm sick and tired of being sick and tired to say the least! For now it seems I'm told it's CFS.

Hope you get some answers soon! Uncertainty is so frustrating!

[Reba32]

I was tested for lupus, sjogren's and systemic sclerosis/scleroderma a couple of weeks ago. Initial blood work showed worrying levels of ANAs, and she said "I think you have lupus, I hope you don't, but I think so". So she took more blood and urine samples, and now she hasn't called back (she's rather annoying that way) so I have no clue what is going on. I have an appointment next Tuesday and I'm just going to ask for a referral to a rheumatologist and to send me for an MRI anyway. I'm not going to just keep having blood drawn every couple of weeks to entertain her I can barely stand up most of the time, so something is wrong, and I'd really like to figure it out!

[beebs]

Its just a red rash on my face - it kind of looks like a malar rash but not a bad one - doh. I also can't see in sunlight or bright cloudy days and get stabbing pains in the backs of my eyes and I am losing my night vision. I get nose ulcers and stuff as well. My Rheumy has mentioned psoriatic arthritis as I have psoriatic nails which gives me a 30% chance of the arthritis. I also have sicca - I scored 0-0 on the schirmers test (where they put paper in your eyes for 5 minutes and see how much tears you produce - so I produced none) so she thought it was sjogren's at first. My arthritis moves around the body but always the same on each side, ie both hips, then both knees, then both ankles etc etc.

Does anyone else have low body temp with it? I have read that it can be autoimmune related. But its like - I get fever with chills if I get 99 f, normal body temp for me is around 95 f.

I am really hoping that all this will go into remission without the gluten although can't believe it can take so long. I hate to think that undiagnosed Celiac could have trigger more autoimmune diseases.

Mushroom -what is Humira?

Reba- I hope its not that for you

lynnelise - totally get your frustration. But I have decided at this point that no news is good news. I used to what a diag so badly cause I felt as if I was going crazy- but now I am happy that every time I see the rheumy its a big "I don't know!"

[mushroom]

Mushroom -what is Humira?

It is a TNF inhibitor which suppresses the immune system (Tumor Necrosing Factor), which is why I have to stop taking it when I have an infection, to give my immune system a chance to fight back

[beebs]

Aha. Right. I was on plaquenil for awhile - do not like it at all! I reckon the drugs sometimes have worse side affects than the diseases.

Anyway OP - I really hope it turns out to be nothing for you!!

[mushroom]

Aha. Right. I was on plaquenil for awhile - do not like it at all! I reckon the drugs sometimes have worse side affects than the diseases.

I was on Plaquenil for quite a while; fixed my arthritis but drove my psoriasis crazy. Eventually stopped working for the arthritis..... Yes, I agree about the meds. It was only because the arthritis was so totally disabling and none of the pain meds will work for me. I am of three minds about going back on Humira at the moment, because it takes a while to take effect and I keep thinking about the pain....

[UKGail]

normal body temperature for me seems to be about 35 degrees C, which I think equates to about 90 degrees F. When I feel really feverish, and am laid out in bed, it is usually around 37 degrees, which is barely above normal. I always thought it was just an inaccurate thermometer reading!

My symptoms are roughly similar to yours,although I think I just mild eczema rather than psoriasis. My Schirmers test was eventually ok, just slow getting there.

What I can't figure out is my rash which burns, as it comes up both in sunlight and also when I eat certain foods which might contain traces of gluten, so I can't even be sure yet if it is also a food intolerance problem. I tried a peanut butter sandwich on gluten-free bread yesterday for the first time, and ended up with stomach ache and wooziness for my trouble, and woke up with a burning flushed face this morning. Hey ho, back to meat and veggies!

[beebs]

normal body temperature for me seems to be about 35 degrees C, which I think equates to about 90 degrees F. When I feel really feverish, and am laid out in bed, it is usually around 37 degrees, which is barely above normal. I always thought it was just an inaccurate thermometer reading!

My symptoms are roughly similar to yours,although I think I just mild eczema rather than psoriasis. My Schirmers test was eventually ok, just slow getting there.

I converted it to F - but yeah- my normal temp is about 35.2 and fever and chills I'm at 37! Its so bizarre and I am sure its autoimmune - I've read stuff that points to that. So did you have one shirmers test or more that?

How long have you been gluten free?

[lynnelise]

My normal temp is around 94. Even when I'm very sick the highest my temperature gets is 99. I think normal body temp is a fever for me!

I also get terrible rashes in the sun and keep a mild pink rash across my cheeks.

I can see the no news is good news theory but after being sick constantly for 3 years I just fear my job will be at risk. With no diagnoses I really have no good excuse in the eyes of an employer!

[UKGail]

I converted it to F - but yeah- my normal temp is about 35.2 and fever and chills I'm at 37! Its so bizarre and I am sure its autoimmune - I've read stuff that points to that. So did you have one shirmers test or more that?

How long have you been gluten free?

Just the one - Doc was happy, and to be honest it hasn't been as bad lately, and other symptoms have been more annoying.

I've only been gluten-free for about 6 weeks. It is still very much work in progress, as I am struggling to eat much due to nausea/lack of appetite and unpredictable reactions. It helps when the weather cools off. The diet has helped with my hormones, joint/muscle pains, and heartburn, but the other gut and all the skin symptoms have worsened. The weird tingly feelings and occasional allergic style reactions are still around too.

[UKGail]

lynnelise - the rashes are not fun. Does yours vary with any foods/gluten, or just with the sun? I know where you are coming from re the job and a diagnosis. I have been struggling for about 3 years too. The celiac diagnosis and ongoing medical appointments help me manage employer expectations for the moment, but of course you never want to let colleagues know how rubbish you are really feeling.

For me I don't think I will end up with a lupus diagnosis. There is obviously something going on, but still hope that if I am strict enough with the diet and be careful with nutrition levels etc, that it might all settle down in time.

[lynnelise]

The rash doesn't seem to vary with gluten exposure. It pops up every time I venture outdoors. I feel like a vampire! lol!

I've been gluten free 2 years and while a lot of symptoms have improved some have not. The worst being fatigue, especially after exercise. A lot of days I wake up and feel like I'm getting the flu. Body aches and exhaustion. I keep swollen lymph nodes. Just had a lymph node biopsy and thank goodness it was not cancer! Right now the doctors seem kind of clueless. They are saying chronic Epstein-Barr and chronic fatigue syndrome.

[UKGail]

Oh yeah! I have had chronic fatigue and sore lymph nodes for 25 years, and just learned to live with it as the docs weren't interested (just "post viral fatigue"). It has varied with my general health and stress levels. It has gradually been getting worse recently , particularly the last six months.

I know what you mean about waking up feeling grotty. How I feel when I wake pretty much sets the pattern for the day. However on good days since going gluten-free, when I think I might be succeeding in getting the gluten out of my system, I notice that the glands go down and ache less, and I feel pretty good, but the feeling is a bit fragile still. Haven't exercised in a few months, and am hoping to get back to it before too long. At the moment just getting through a busy day is enough.

I had blood drawn again today, and see the rheumatologist for a review next week.