Lupus?

[twinkle-toez]

Hello,

It's been a long time since my last post, and I'm not entirely sure exactly why I'm posting here; probably just for support and to vent I suppose.

I have been gluten free for 7ish months, and free of dairy, soy, corn, legume, grain and refined sugar for 5 weeks (although those items have only constituted minor portions of my diet for the past 3 months). As of this past summer and fall I was under suspicion of multiple sclerosis. The results of all my imaging however revelaed no demylelination within my CNS.

Where the story stands as of now is that I have 3 peripheral neuropathies - a multiplex mono-neuritis as the neurologist called it. This past month I have had joint pain that has awoken me at night. I've had chest pains since age 14 (I'm now nearly 27) which have evaded all diagnosis (echos, EKGs, dopplers etc) which have also flared. For the past year I've had random stabbing pains in my abdomen. I also develop a malar rash at ballet, where we dance under fluorescent lights, which I understand, emit UV radiation. My muscles are knotted and I have pretty serious inflammation through my left hip flexor. My ANA titer ranges between 1:40 to 1:80. I'm RF negative. I've also had pretty extreme fatigue. As a ballet dancer trying to train for a major exam, and a graduate student trying to earn a PhD, I find all this rather debilitating.

On the recommendation of a close friend, I adopted a strict no nuts, no eggs, no nightshades paleo diet for 6 weeks in January. Four of those six weeks were spent very low carb - with no fruit ingestion either - this low carb deal specifically seemed to just absolutely shoot my system to hell. I now have the symptoms of adrenal fatigue and hypothyroid. I'm wondering if anyone knows of any credible sources connecting low carb diets to development of adrenal insufficiency/ hypothyroid.

More importantly, I'm looking for advice, dietary or otherwise about the lupus. I'm pretty upset right now as last night was when I finally realized that fluorescent lights emit UV light, thus explaining the butterfly rash on my face at dance. Is there something else I should be doing with my diet to try and heal my gut? I have resisted all anti-inflammatory meds to date, although I do take gabapentin for the neural pain and parasthesias. I also supplement with EPA and DHA, and 4000IU Vit D/ day (as well as B/C vitamin complex).

I'm so tired of struggling and doing this alone. I feel so incredibly hopeless right now. For the past 15 months I've had continual problems with my health - if it's not one symptom, it's another. I can't progress in dance, and I LOVE dance more than I can possibly express. And progress in my degree at school is frustratingly slow as well, yet my supervisor makes me feel awful and judged about the fact that I can't seem to get my health under control.

I just want to cry.

[AzizaRivers]

Wait, have you actually been diagnosed with lupus? Or are you just suspecting it in light of your symptoms? If you haven't actually been diagnosed to have it, you need to go to your doctor ASAP and talk about it. I understand your ANA is a little higher than the normal range. Lupus isn't something to play around with so if it turns out that's what it is, you want to start treatment right away. I'm sure you understand that people with one autoimmune disease (like celiac) are more prone to develop others as well. Go get serious with your doctor--if you're really concerned about lupus, don't leave without a referral for more testing or another doctor.

While you're at it, mention the other conditions you think you have symptoms for.

[twinkle-toez]

Wait, have you actually been diagnosed with lupus? Or are you just suspecting it in light of your symptoms? If you haven't actually been diagnosed to have it, you need to go to your doctor ASAP and talk about it. I understand your ANA is a little higher than the normal range. Lupus isn't something to play around with so if it turns out that's what it is, you want to start treatment right away. I'm sure you understand that people with one autoimmune disease (like celiac) are more prone to develop others as well. Go get serious with your doctor--if you're really concerned about lupus, don't leave without a referral for more testing or another doctor.

While you're at it, mention the other conditions you think you have symptoms for.

I'm currently under the care of an extremely competent neurologist. He is monitoring me, but I don't want to go on the typical meds for lupus - the anti-inflammatories can do horrible things to your intestinal lining from what I've read, and steroid treatment isn't desirable either. I do believe there is a great deal of power in diet. I guess my thoughts are that if my body can heal itself, I want to allow it that chance and give it all the advantages/tools to do so that I can.

I have not as of yet been formally diagnosed with lupus. The neurologist has shared with me that his suspicions are that that is what I do have. I am in contact with him and keeping tabs on my symptoms and any progress/ regression.

I'm just not sure where else to go on the diet front, or how long to expect to wait to see improvements. I know I am definitely a celiac (resolution of PCOS, GI issues, mood issues (except those now being rooted in frustration over this whole autoimmunity problem) resolved a couple of months into a gluten free diet).

[cassP]

I'm currently under the care of an extremely competent neurologist. He is monitoring me, but I don't want to go on the typical meds for lupus - the anti-inflammatories can do horrible things to your intestinal lining from what I've read, and steroid treatment isn't desirable either. I do believe there is a great deal of power in diet. I guess my thoughts are that if my body can heal itself, I want to allow it that chance and give it all the advantages/tools to do so that I can.

I have not as of yet been formally diagnosed with lupus. The neurologist has shared with me that his suspicions are that that is what I do have. I am in contact with him and keeping tabs on my symptoms and any progress/ regression.

I'm just not sure where else to go on the diet front, or how long to expect to wait to see improvements. I know I am definitely a celiac (resolution of PCOS, GI issues, mood issues (except those now being rooted in frustration over this whole autoimmunity problem) resolved a couple of months into a gluten free diet).

should u also be seeing a Rheumatologist? for routine lupus panels? when i was being tested as a teen- i saw a Rheumy... but i was never dx, and do not have it. i TOO had the butterfly rash- but mine has gone away going gluten free. i agree that i would not want to take lupus meds either- as long as you're continually getting routinely tested for Lupus- just to stay on top of it- then that's a good thing.

i know of NO correlation between a paleo/low carb diet and adrenal fatigue and thyroid issues.

i DO know- that a paleo diet is not for everyone- some of us feel fantastic on it... and others will get kidney problems if their body was not made for a heavy protein load. u know- some people feel better as vegetarians.

if you have Hypothyroid & Adrenal Fatigue- it is most likely due to having been genetically predisposed- just as many of us with Celiac or other autoimmune diseases are. you most definitely should be getting routing thyroid panels done- as undiagnosed hypo &/or hyper can lead to all kinds of health complications that you dont need to suffer with.... getting a proper dx and treatment can turn someone's life around!

also- u should get your vit levels checked- esp. Vit D & B12.

good luck- hope u get it all figured out

[twinkle-toez]

Thanks for the response.

A rheumatologist is probably the next step I'm assuming. Prior to the malar rash discovery of last night (or rather my cluing in to what it actually was that was happening on my face every time I dance ballet) there was still alot more guessing room. My rashes obviously haven't cleared up in the 7 months I"ve been gluten free. I wish they had. It's odd b/c I don't remember having the rashes last year, but possibly my memory is subjectively biasing here.

Vit D and B12 are both fine (both checked and I suplement).

As far as thyroid goes - my TSH always comes back normal, and for the life of me I just can't seem to convince the doctors to test T3, T4, the bindng protein or rT3. And while the neurologist is great, I suspect that when I ask for the extra thyroid tests to do a full panel he will say no, as he thinks I'm obsessing and that it's not mentally healthy for me.

[cassP]

Thanks for the response.

A rheumatologist is probably the next step I'm assuming. Prior to the malar rash discovery of last night (or rather my cluing in to what it actually was that was happening on my face every time I dance ballet) there was still alot more guessing room. My rashes obviously haven't cleared up in the 7 months I"ve been gluten free. I wish they had. It's odd b/c I don't remember having the rashes last year, but possibly my memory is subjectively biasing here.

Vit D and B12 are both fine (both checked and I suplement).

As far as thyroid goes - my TSH always comes back normal, and for the life of me I just can't seem to convince the doctors to test T3, T4, the bindng protein or rT3. And while the neurologist is great, I suspect that when I ask for the extra thyroid tests to do a full panel he will say no, as he thinks I'm obsessing and that it's not mentally healthy for me.

i understand your frustration.. i really lucked out with the T3 and T4- even my PCP was testing those from the beginning- it's not a crazy request- dont feel bad about asking for it- you have every right... TSH is only one guess really- not everybody is textbook.

and my PCP wouldnt order the RT3, and i had to beg her to test my antibodies.... but my Endocrinologist has been GREAT- she agreed to test my Graves last visit- and she added the RT3 test to my next labs

hhmmm wondering about the rash... mine AND my sisters went away after going gluten free... one of my best friends (gluten intolerant with endometriosis & hysterectomy)- developed the same rash in recent years, and just went gluten free, dont know if it disappeared yet.

gluten intolerance goes hand in hand with several autoimmune diseases- just stay on top of all the tests- break a leg

[Gemini]

I'm currently under the care of an extremely competent neurologist. He is monitoring me, but I don't want to go on the typical meds for lupus - the anti-inflammatories can do horrible things to your intestinal lining from what I've read, and steroid treatment isn't desirable either. I do believe there is a great deal of power in diet. I guess my thoughts are that if my body can heal itself, I want to allow it that chance and give it all the advantages/tools to do so that I can.

I have not as of yet been formally diagnosed with lupus. The neurologist has shared with me that his suspicions are that that is what I do have. I am in contact with him and keeping tabs on my symptoms and any progress/ regression.

I'm just not sure where else to go on the diet front, or how long to expect to wait to see improvements. I know I am definitely a celiac (resolution of PCOS, GI issues, mood issues (except those now being rooted in frustration over this whole autoimmunity problem) resolved a couple of months into a gluten free diet).

An elevated ANA does not mean you have lupus. I am wondering if you may have fibromyalgia (sp?), as your symptoms sound common to that disease.

To show you how screwy this can all be, my most recent ANA titer was 1:1280, which is an improvement over the 1:2530 I had 3 years ago. I have absolutely zero symptoms of RA or lupus so have refused a referral to a rheumatologist. They are there if I need them but I like to do my own monitoring, thank you, as I feel pretty good right now. I do not take any meds, except thyroid replacement for low thyroid. Diagnosing lupus is not an exact science and I know this because my niece has lupus. I also suspect she has gluten problems but she doesn't want to hear it. After speaking with a number of doctors about my numbers (my RF is elevated also but that has come down in the past 3 years too) they concur that it might be the fact I have 4 autoimmune disorders in total and those elevations may be from that. I manage them all well and have done fabulous on the gluten-free diet.

It has taken me almost 6 years of the gluten-free diet to feel as well as I do. Yes, there are days when I am fatigued and a bit off but the general population without Celiac has these issues too. Having 4 autoimmune diseases does affect me but, like yourself, I push myself and don't want them to hinder my life. You are having symptoms of something but it might be hard to pinpoint. Not sure if a rheumatologist would be very helpful...I have heard many stories from annoyed patients about how un-exact that science is. Because so many autoimmune diseases overlap with symptoms, it can be very difficult to figure out what the problem is. Stay on a strict gluten-free diet and be patient as it may take a while for you to feel markedly better. Keep dancing because physical movement and exercise will help improve the function of your immune system. If you have an off day, make sure you rest well but keep that body moving! I know it can be depressing....my Achilles Heal at the moment are 2 dental implants I am having done due to bone loss from Celiac and my eyes are so dry from Sjogren's Syndrome, I recently had punctal plugs put into my tear ducts to try and help with moisture levels. I feel OK and exercise and all but these 2 things are such a pain in the butt at times I want to cry. Focus on the light at the end of the tunnel because you will get there!

[Wolicki]

I was sadly diagnosed with lupus (wrongly) for over 10 years and took some really nasty drugs. When we finally figured out it was celiac, all my symptoms (most same as yours) they all went away. So, don't assume you have lupus. I was under the care of a very good rheumy for 9 years. And I didn't have lupus. Is it possible that you are still being exposed to gluten, or cross contamination? Have you checked all your beauty products, household cleaners, etc?

I was so lucky that all my symptoms went away with the total elimination of gluten. Good luck to you and for sure, get yourself to a good rheumy.

[cassP]

twinkletoez-> have u considered that u may have additional food intolerances??? many on here get arthritic pain from nightshades. i do from potatoes...

gemini-> which 4 do u have? sjorgens, celiac, hashimoto's.. and_________ ? i always hear people say they come in 3s.. so i really hope im not getting a 4th one like u

[twinkle-toez]

CassP: I have indeed considered intolerances to foods other than gluten - namely: dairy, soy, eggs, nightshades, nuts. I know that I'm sensitive to diary and soy and have removed those from my diet, and I don't consume corn products so that can't be a contender either. Basically I eat a very 'whole foods' diet.

Wolicki: I have indeed checked for cc - the only possible source that I've come up with is a glutamine supplement that I was using for awhile. It doesn't state where the Gln is derived from on the label, but online I found that alot of Gln supplements are derived from wheat protein. As such that supplement has been discontinued. Aside from that snafu I"m super vigilant, and my fiance is super vigilant about guarding my diet and keeping me gluten-free as well. He actually has gone gluten free for about six weeks now and says he feels more energetic and healthy, which makes our kitchen a bit easier to deal with. We live with another man whom is not gluten-free, but there isn't sharing of cooking ware between us, and I'm hyper vigiliant about counter wiping.

Gemini: I know that the symptoms of fibromyalgia and lupus can overlap - but I"ve never read any source stating that the malar rash in response to UV is typical of fibromyalgia. As a test, I wore sunscreen this evening at ballet class to see if the fluorescent (UV emitting) lights still caused a rash, and they did not. I do hope that your conditions continue to improve...

I think that I"m starting to come to terms with this now and feel a bit more okay about life. There are far worse things than lupus, and I don't need meds at this point. It will flare up and flare down, but it doesn't have to define me or my life - simply means that I need to take extra good care of myself during flares, as well as to prevent flares as much as possible. I'm definitely on a learning curve here!!!

Thank you to all for the support and replies!

[cassP]

u know TwinkleToez- it's always POSSIBLE that avoiding gluten forever will keep the lupus at bay....

there's so much the public and medical community dont know yet about gluten and disease- and it seems from this and other online communities- people are finding relief from going gluten free...

i think someone on here said her Sjorgens went away after going gluten free... i know another person had MS SYMPTOMS go away... i, like others have done in the past, am hoping that months or years of being gluten free will quiet my Hashimoto's and Grave's...

so, that's a definite possibility i would say

[Gemini]

twinkletoez-> have u considered that u may have additional food intolerances??? many on here get arthritic pain from nightshades. i do from potatoes...

gemini-> which 4 do u have? sjorgens, celiac, hashimoto's.. and_________ ? i always hear people say they come in 3s.. so i really hope im not getting a 4th one like u

The last one is Reynaud's Syndrome and it was particularly bad the last year before dx of Celiac. I am happy to report that the Reynaud's has vastly improved since going gluten-free and, as I live in New England and we have real winters here, it still has not bothered me that much at all. I can shop for food in the frozen foods department and not wear gloves anymore. The only autoimmune problem that still is a problem is the Sjogren's. I just had punctal plugs put in one of my eyes to see if that would help with moisture loss. I wanted to do one eye only at first to make sure the plugs wouldn't cause a problem themselves.

I think my lachrymal and salivary glands were pretty much trashed by 25 years of undiagnosed Celiac. And my PCP wonders why I have such a problem with doctors.....

[twinkle-toez]

As an update - I was formally diagnosed with lupus last Friday evening. I meet 6 of the 11 necessary diagnostic criteria, plus a slough of the extra 'non-diagnostic' criteria.

It seems I've had symptoms of the disease for the past 12 years - so since age 14. I'm really glad that I didn't know back then. Comparatively speaking, my lupus is mild, and for that I"m very thankful. I went through a rough couple of days really coming to terms with this diagnosis, but then realized that in those 12 years I've passed 2 major ballet exams, ran 2 half-marathon races and numerous 10km races, earned an undergrad degree and started a PhD. I'm relieved to finally have an answer tying together my odd slough of symptoms, and even more relieved that my disease is mild and thus it's not such a scary diagnosis for me right now, and I really feel blessed that although I do have an autoimmune disease, it falls on the mild end of the spectrum.

It was also ascertained that my thyroid function is quite low, and I am now having that addressed by an alternative health practitioner. He also decided to do something called a Myers cocktail, and it came to light just how starved for nutrients my cells are. I did not feel well after it, but plan on doing another next week. Gluten truly is my nemesis it seems. Despite being gluten-free for 7 months I still have issues with malabsorption.

Gluten = Evil.

[Gemini]

As an update - I was formally diagnosed with lupus last Friday evening. I meet 6 of the 11 necessary diagnostic criteria, plus a slough of the extra 'non-diagnostic' criteria.

It seems I've had symptoms of the disease for the past 12 years - so since age 14. I'm really glad that I didn't know back then. Comparatively speaking, my lupus is mild, and for that I"m very thankful. I went through a rough couple of days really coming to terms with this diagnosis, but then realized that in those 12 years I've passed 2 major ballet exams, ran 2 half-marathon races and numerous 10km races, earned an undergrad degree and started a PhD. I'm relieved to finally have an answer tying together my odd slough of symptoms, and even more relieved that my disease is mild and thus it's not such a scary diagnosis for me right now, and I really feel blessed that although I do have an autoimmune disease, it falls on the mild end of the spectrum.

It was also ascertained that my thyroid function is quite low, and I am now having that addressed by an alternative health practitioner. He also decided to do something called a Myers cocktail, and it came to light just how starved for nutrients my cells are. I did not feel well after it, but plan on doing another next week. Gluten truly is my nemesis it seems. Despite being gluten-free for 7 months I still have issues with malabsorption.

Gluten = Evil.

I am happy that you have a diagnosis, although it's not a diagnosis anyone would rejoice over. However, like myself, you have realized that not every diagnosis is a disaster and that life can and will go on and you most likely will be able to do the things that bring you joy in life. I think there is a certain amount of soldiering on you have to do when you have autoimmune diseases that give you some grief but it won't always be like this. Seven months is pretty new to the gluten-free world and healing. I went a few years before the major symptoms all totally resolved and I got my energy back but it can and does happen. I am doing well these days and I think the reason is that I keep doctors at a distance and use them only as needed. They can be such gloom and doom people!

Good luck to you and stay patient...you'll get where you want to be!