mslee

Thx for your response. Yeah, that is very technical- so are you saying that CD4+ and CD8+ T cells are the same cells that are in the celiac intestine? That is very weird! I wonder if a Rheumatologist would know of this connection.

It just seems that these syringomas are so rare and I found an article saying that the first case of eruptive syringomas was reported in 1987, that is so recent. I doubt a lot of Dr's would have insight to this since it seems so abnormal/rare.

It does seem coincidental though. I have my follow up appt to go over the endo biopsy Friday with the GI Dr, so I will ask him, but I doubt he will know

I've just had so many weird symptoms this year, I am wondering if they are all connected somehow. My other weird symptom was 2 enlarged left axillary lymph nodes that no one could figure out. They were painful too. They were enlarged for about 6 mos, but on my last ultrasound they were back to normal size. It was scary, I was referred to an oncologist for fear of lymphoma.

Thanks!

Well after 30 years of symptoms & 16 years of countless Doctors & labs I can tell you pin pointing which autoimmune condition you are dealing with is no easy task. About 9 years ago they dxed me with SLE Lupus, gave me treatments that didn't work for me...I just kept getting sicker & sicker. 2 Years ago they found celiac & I can't get a straight answer if I have both or just celiac....some Drs say yes both, some say untreated celiac caused lupus, now they say they doubt it's lupus. Anyways with autoimmune conditions if you have one you are likely to have others. Some scarier than others. I do have hashimoto's, celiac, arthritis, allergies, asthma, colitis, are other autoimmune conditions that run in my family... that's another thing they do run in families. For many autoimmune conditions the treatment is the same regardless of the name they put on the condition...they are all some form of your immune system attacking your own body.

I think spinal tap is needed to dx MS but they can run MRI's & nerve tests to see if they find any abnormalities. Those tests are less invasive I've had them...no so bad.Had never heard of syringomas, but just googled them & have seen them before...look like in most cases they are harmless. Also lots of people I know with lupus have enlarged lymph nodes that are not because of cancer or anything. Probably good to have it checked out but try not to worry too much.

ANA is the basic autoimmune condition test but as I have found out celiac & hashimoto's can cause this too, as well as having a family member with an autoimmune condition, or it's just normal in some people.

A Rheumatologist is supposed to be the Dr to see for autoimmune conditions but I have found they focus mostly on arthritic conditions. Have very little input on non arthritic autoimmune conditions - like celiac...they send ya to the GI who focuses on the gut not the other symptoms...so sometimes it feels like there is not a specific Doc to help with the confusion of autoimmune illness.

Still I would see if your primary will refer you, if your Dad had MS it's probably worth looking into. They can run a bunch of tests, some pick up on specific autoimmune conditions other are more general.

Hope your having some luck! Feel free to ask me questions any time.

On Aug 13, I was officially diagnosed with Celiac Disease and 12 days later, was diagnosed with Autoimmune Hepatitis with Stage 4 Fibrosis...wondering what is next???

I have only been on my gluten-free diet for 2 weeks and 2 days ago, started taking Prednisone and 6-mp for the AIH and am having issues again with everything that I eat! I have dropped 6lbs in 2weeks and scared to lose anymore weight but eating is making me very sick.

My whole story is on my profile page but I would love to hear if others are/have been in the same boat. I just don't know what to expect with all of this.

TIA,

Hi There!

I wanted to let you know you are not alone, I was dxed with celiac in July of '08 I have been gluten free ever since. A couple months before my celiac dx they thought I had autoimmune hep. my labs had shown it for almost a year. So they ordered a liver biopsy, & they said the results really surprised them....my liver was very healthy with only minor inflammation. My GI thought my liver labs would normalize going gluten free...& they have! It did take almost a year. But they have stayed normal since.

Now healing varies from person to person, I'm one of those who needed to do alot more than just gluten free & two year later still have alot of healing to go. I found out pretty quick my body would not tolerate soy, cow dairy, or most grains. I had a bunch of new food allergies & sensitivities. My Drs now think leaky gut is a problem.

So don't get discouraged it's a major life change & takes some experimenting but over all we feel much better off gluten-free than while consuming gluten.

As for the autoimmune stuff...I also have hashimoto's, colitis, raynaud's, sjogrens & possible lupus. & Yes they say if you have one autoimmune condition you are likely to have more. Most are not too serious (a few are but they should see those in labs/symptoms) most are treated the same way...prednisone & it will reduce inflammation, help the pain & make you gain weight. If you are on it long term it has some side effects so try to stick with it as needed.

I get mixed info about my autoimmune combo, some say I have all some say some, some say the untreated celiac caused them & they may get better with time & being gluten-free.

Just wanted to share, hang in there!

Ask any questions you need...hope you feel better!

thank you for the replies!

Nasalady have you been through treatment for lyme?

amcken3, I hope you are doing ok! & have been able to cut gluten out of your diet. I have been fighting with the yeast issue but have come to the conclusion healing my gut is the first step to getting rid of that...the diets did help but only went so far because of all the food sensitivities. Check in with us if you like, it's nice to have support.

Well I have talked to a couple more Doctors, I still get mixed info. some say celiac ould have caused lupus, some say hey are a common combo, some say no that's very uncommon to have both, some say you may "only" have celiac.

I see a new Rheumatologist next week, hope it goes well & I get some good info.

just wanted to touch base I feel like a feak of nature. lol wahhhh

my new GI did acknowledge leaky gut & said it could be why I have a ton of other food sensitivities.

Hi Nasalady!

I think I have it, I have a dx of sle lupus & fibro as well as hashi's & celiac. They have checked out my heart a couple times & my lungs, no cause of pain found so we (Drs & I ) are guessing inflammation somewhere in the chest..which can be a symptom of lupus or fibro. didn't know it could be a symptom of celiac.

good luck! hope you are feeling better!

Yes they are both autoimmune, I have sle lupus & have been trying to understand the connection. After talking to a few Dr & other with these medical conditions it seems the when you have one autoimmune condition you are likely to have more than one. A couple Drs I saw said it's possible the untreated celiac might have caused my lupus.

I get another opinion next week, but if you start showing symptoms of more serious autoimmune conditions see a Rheumatologist, some show up in labs I'm pretty sure scleroderma does.

Good luck!!! Sure hope you don't have to deal with that.

I have both,

& sle lupus dx 97

2008 told I've had hashimoto's antibodies since 2001 (no treatment until recently)

2008 celiac dx

I never really had typical hypothyroid symptoms other than fatigue, cold body, & dry skin. They found abnormal labs & I have been on levothyroxine for 4 months but haven't noticed any huge difference in the way I feel...my limbs do feel warmer that's about it.

Oh I did see a new GI yesterday he & a couple rhematologists have told me celiac & hashimotos are a common combo.

Thanks for that.

I'll guess I'll just have to wait and see, finally got my referral for an endoscopy this week. So at least I'll know the outcome of that before seeing the rhumatologist.

This may be a stupid question, (I haven't done much research on what positive ANA, ENA etc actually means and if they can change!) but have those blood work results improved, or stayed the same since going gluten free? Just wondering whether I should have more blood tests done after going gluten free, but before seeing the rhumatologist?

Hello,

I was dxed with lupus & then with celiac 8 years later. Many symptoms have gone away, but some have also changed... Like I feel more muscle pain now than before going gluten-free, also a bunch of new food sensitivities. I have been strictly gluten-free/soy free for almost 2 years & mostly dairy free as well. My ANA has stayed the same.

My liver enzymes were high & they thought for sure I had autoimmune hep right before they found the celiac. They even did a liver biopsy which confused them because it came back very healthy despite what my blood labs showed. My enzymes quickly normalized after going gluten free.

Anyways, I saw your post & wanted to say HI!

Curious how your apts have gone. I get to see my new Rheumy in a little over a week to get another opinion on the whole issue. Will post what I find out.

I had posted about Lupus there were a few others with input if you are able to find that thread it may be helpful too you.

Good luck! Hope you feel better!

Hi Guys!

I don't know if you remember me, but I haven't been around for a while either...but I have a bunch of autoimmune stuff going on too.

I posted about Lupus, I have been wanting to get back to you but had an insurance mix up & still waiting to see new Rheumy to get another opinion about lupus & celiac. See him in a little over a week...finally!

Mother I'm glad they finally put a name to your condition, sounds interesting...sorry it's been no fun. Will look into it more, had never heard of it until you brought it up.

Anyone ever hear of Oral Allergy Syndrome? I'm wondering if I'm dealing with that as well. Seems everything I eat makes me sick in some way or another.

Glad to hear your ok & have a dx, will be in touch...

have a good one!

catching up on the links! thank you they are helpful & interesting!

I found this one (some up dated info on zonulins) while looking further into it..,

Open Original Shared Link

Just now getting to this post...lots of helpful info here, Thank You!

I'm rusty on the labs, glad you got some answers.

Yes as for the 11 dx criteria, it counts if you have had the symptoms in the past.

I never thought I had the malar rash (do have sle lpus), because the it was never itchy or raised...looked like rosacea. But recently it looks just like that pic you posted with rough patches

I have also learned that the sun sensitivity does not always mean you get a rash, it causes dizziness, headaches, drained feeling, intense sleepiness.

Typically the treatment for most connective tissue/overlap/lupus like conditions is the same regardless of the exact condition...so you are on the right track.

Gemini, Hi we spoke a while ago...hope you are feeling better. I hope you can find a GOOD rhuemy, just to make sure everything is ok. I know it's no fun, but the earlier lupus is caught the safer we are. Just make sure your organs are in good shape. The Lupus Foundation has this page to help find Drs in your area...

Open Original Shared Link

Chez, I agree going about it as a naturally as possible is the best route. I am young, so I have opted not to take the pain meds or any meds I don't need to save organs. As of now I am med free...but think things are progressing so I don't know how long that will last.

Plaquanil is supposed to be one of the safer drugs to take, the eye damage is typically reversible once the med is stopped. But it never helped me, so I don't take it.

I do take the omega3's & heavy duty antioxidants to fight inflammation, plus vitamins & eat lots of those spices you listed. The gluten-free diet has forced me to eat pretty ridiculously healthy

Hi,

Just wanted to let ya know I'm still here, the end of the year is always crazy!

I have some apts coming up with highly recommended Dr.s so I am hoping for some more info soon. Have been discouraged by the whole health care bill thing...hoping for the best. I am lucky I have decent insurance...just not any options for one covering an LLMD.

Lyme sounds so complicated, but I have heard they think it can trigger autoimmune conditions (which I do have a lot in the family too.) The symptoms are so similar to Lupus, I guess it can be hard to pin point if it's one or the other or both...so hard to be patient but I'm trying!

They found I had celiac about a year & a half ago, before that they dxed me with autoimmune hep. since going gluten free my liver labs have normalized...hopefully yours will too, nasalady.

Sounds like we have alot of similar symptoms/conditions if you like keep me posted I will let ya know what my Drs say...if they come up with anything interesting.

Have Happy Holidays you guys!

thank you for the replies!

I have had a busy weekend & have not had a chance to read up on all the links but will for sure!

Nasalady, I too have had some lyme labs come back positive recently...but due to insurance issues I may not be able to get treatment for a while. I'm wondering if the lyme could be the root. I will get back to you t his week, I am happy to have someone to talk to about all this...sorry that you have to go through it

Wolicki, That is wonderful news!

My ana has remained abnormal for over a year but it's time to have it checked again, still I have started getting the malar rash for the first time in my life & have pleurisy, joint pain that has gotten worse even since going gluten free. I'm not giving up hope, will continue to be patient & hope with time things get better.

At least my liver labs have normalized that is positive.

Hi,

Just wondering if there are others out there who have lupus (I do), or who were diagnosed with lupus before celiac & had it turn out to be "only" celiac.

I am surprised how little info there is here on the subject.

I have had 1 Rheumatologist say it is common to have both & another say it is very uncommon.

If you have any info I would like to talk to you.

Thanks!

oh, wanted to add I had to play with elimination diets to pin point problem foods. I think there was such severe damage that my only chance to get better was to cut out problem foods.

It will be a couple months until I have labs run again (for lupus/sjogrens/raynauds/liver etc) but will let ya know if there are changes.

Hi Chasbari,

I'm guessing with sjogrens your ana remains positive?

I'm not sure if I read it on the LFA site, or in one of the many books I read trying to understand all this...but I know lots of people with lupus do claim florescent lights bother them. Sun exposure is a known trigger of lupus.

They always said they don't know what causes lupus, but it seems to be coming out that like celiac if you have the gene + triggers you end up sick.

There is a drug induced lupus, I am not sure if antibiotics are on that list, if I find out I will post it for ya.

Do you still see a Rheum.? Do the still suspect lupus or do they say it was celiac instead?

good luck to you! take care!

Hi,

I have SLE Lupus & some autoimmune thyroid activity, also pre sjogrens & was developing autoimmune hep. when they found the celiac.

The liver has normalized after being gluten free for a year and a half. But other autoimmune conditions continue.

I posted in this thread

https://www.celiac.com/gluten-free/index.ph...mp;#entry580569

I have to run for now, but wanted to share... seems gluten free helps but how much is 100% reversible can only be told with time...I just have to wait & be patient.

There are meds for sjogrens, also you could focus on anti inflammatory diets & sups...like the Mediterranean diet, omega 3s, antioxidants, reduce red meat & saturated fats etc.

Hang in there! Good luck!

I have sle lupus it was diagnosed 7 years before they found the celiac.

I have seen two highly respected GI's, 2 Rheumatologists, 2 Internists & a Natropathic Dr since my celiac Dx. They all think the two conditions are related, 1 GI & 1 Rheumy claimed it was probably "only" celiac all along. But I saw neither of them long term & the other Rheumy said I very clearly have both. It is common for people with one autoimmune condition to have several at the same time.

I have been strictly gluten free for a year & a half now & the only lupus symptoms that have improved were brain fog, abnormal liver enzymes & fatigue. Actually some symptoms have gotten worse, I am coming into a flair now... so I do not believe it was "only" celiac...the theory is gluten was/is a trigger for my lupus.

My GI who dxed me, told me to cut out dairy with gluten & remain dairy free for at least 6 months while I heal. I gave it a year it still made me sick, now I eat a little here & there...but it still doesn't set right & is hard to avoid since letting it back into my diet.

There are theories that casein is so similar to gluten to our bodies that our bodies can react to cow dairy as well as gluten. Others that Dairy is just not tolerated by all people weather its because of lactose or casein. Some say it can cause mucus & respiratory problems. & That people of Native American or Asian decent have more problems with lactose than others.

I go to a Lupus forum & have talked about celiac & gluten intolerance, most don't seem interested but there are several people there with lupus who are gluten free & a couple who have also been dxed with celiac.

I can't do soy, msg, some grains, nitrates either.

Hope this info is helpful, good luck to your co worker...nice to know when we are not alone

Hi Lauri!

Yes I have SLE Lupus as well as celiac, also allergies, hashimoto's, autoimmune hep & probably raynauds too (waiting on some labs)

Check out the thread Mother of Jibril posted, but yes there are more of us here...when you have one autoimmune condition it is common t o have several. lucky us!

anyways here if you have questions or need to talk

good luck!

Mother of Jibril,

You could try the ophthalmologist, like someone mentioned they can do some tests...although I have a friend w/lupus who tried that & she said the test they did was stick a little piece of paper in her eye & it hurt so bad!...she made them stop & gave up.

But if they do put you on prednisone it will probably help with any autoimmune inflammation you are having, sjogrens included...in fact it's one of the few treatments for so many A.I. conditions that some docs give up on pin pointing & just do a round to get all inflammation under control.

lets hope it doesn't come to that!

good luck!

Oh I hope it's not a sign of glutening!

I have had badly chapped/split lips since going gluten free, I have tried everything...no chap stick/lip gloss (in case there was an ingredient I was sensitive to), tried straight olive oil or coconut oil, tried all natural brands like badger balm, tried petroleum based like "chap stick" or nivea, tried taking more B vitamins..still there & I am SO careful with my diet.

I have heard some vitamin deficiencies can cause cracking of the lips but I'm not sure which.

Before the celiac dx I would get these little water blisters in my mouth, those have gone away..except once when I got glutened real bad.

I have a couple oral ulcers that come & go but that is the lupus. fun!

I thank you for your words and honesty on this! My sister's daughter has been told she most likely has lupus so that little voice that maybe I have it too is always there. I am convinced she also has celiac disease from her symptoms over her short life but, so far, she doesn't want to hear that right now and her doctor's think I am wrong. Eh, what do they know?

I will read this over and you may be hearing from me with questions. I know having a high ANA and Rheumatoid Factor is not good but I wonder if the celiac disease is not responsible for some of the high numbers? I am totally asymptomatic for anything related to lupus or RA but does that really mean anything with high numbers? So many questions!

Take care of yourself......all the best!

Hi Again!

Yes I remember talking to you a little about your niece but lost the thread. I have a few in my family in denial, my sister tried going gluten free all her rashes she has her whole life cleared up but she said it was too inconvenient to continue "maybe someday if it really makes me sick". At least my Mom has gone gluten free & is better in many ways but still dealing with lots. I think I have planted the idea of gluten free on the Lupus board many are trying it & feeling a little better...probably have annoyed others people like their junk food!

Much of what I have found recently was from my own research (much of it here) & pushing my docs to test for this or that...same with my Mom...nothing they would have found if we had just left our care 100% up to them. sad.

Well I picked up a copy of The Lupus Book by Dr Daniel Wallace...it's considered the "lupus bible" & there is SO much detailed info on everything!

Here is a little info out of the glossary:

ANA: "Proteins in the blood that react with the nuclei of cells. Seen in 96% of those with SLE, in 5 % of healthy individuals, and in most patients with autoimmune diseases."

Rheumatoid Factor "Auto antibodies that react with IgG; seen in most patients with rheumatoid arthritis and 25% of those with SLE."

Of course beyond that you would have to see a Rheumatologist who would probably run other blood work to try to pin point exactly what you are dealing with...but it sounds like it's possible some could be from celiac...although I wonder if you are gluten free would you still produce positive ANA???

Well take your break, take care of you & try to get in when you can...just to be safe.

Good Luck!!!

Well....this gives me a warm, fuzzy feeling all over! I also have celiac disease, Sjogren's, Hashi's and Reynaud's, plus have a sky high ANA and

Rheumatoid factor but have not seen a Rheumatologist. Considering my history, I feel pretty good right now and have no active symptoms of anything else so am not going to go to any more doctors for awhile. I've had it and need a break. I also have shown protein in my urine but don't worry about that....it's been that way for a long time and I'm not dead yet! I had no idea this could be a symptom of lupus but now I know.

There are probably more autoimmune problems lurking in the background but until I start to have problems, I am on hiatus. I don't think I can deal with any more bad news right now.

oh! I'm sorry to bring up bad news

I know what it's like needing a break for Dr.'s especially when you throw a few jerk Dr.s in there!

I would recommend keeping an eye out for a GOOD Rheumatologist in your area, you can find

pretty good reviews on citysearch & google maps. Or see an internist & have them run labs. Because now a days it is rare for people to die from lupus but it can happen when they do not go to Dr.s & stay on top of their labs & meds. I know a couple people hanging on

that being said, I am debating on seeing a natropath or some sort of natural healer to see if we can get my ANA down without chemo. But I will stay on top of my labs to be safe. I had hoped my major diet changes would have at least helped.

When Lupus attacks the Kidneys it is called Lupus Nerphitis here is some more info:

Open Original Shared Link

Open Original Shared Link

The chemo is scary & hard for me to say yes to because I don't feel that bad...My joints & muscles do hurt but they have my whole life so I'm used to it. But I don't have swelling, my kidneys are not involved. I would not have guessed I was that bad off. My Doc says the combo of symptoms I have is pretty common as far as lupus goes & I can feel pretty confidant it's not going to jump to my kidney's or brain...just keep on working on what it has been: joints, thyroid, liver, muscles...etc.

eh. fun stuff!

well try not to worry because stress can make lupus (or any health issue im sure) worse...just keep it in mind & when you are ready see a good rheumy.

If you want to do research, there is a chat board at the Lupus Foundation Of America...I'm msalilea. or you can always ask me any questions here...I have dealt with this a long time.

Sorry to be a downer, good luck... I wish you the best.

Thank You Mother for the genetics info!

Hmm that does sound like alot of prednisone, I hope they don't have to put you through that If they do make sure you are taking calcium & D.

I'm not sure what they are going to do with me, I left a message for my Doc about my concern of the metotrexate... but he had gone home early so will not know until next week. There are not a whole lot of options unfortunately.

The whole allergy thing is bizarre! & hard to dx I guess. I had kinda done the elimination diet thing. But still wonder about many foods & the effect an allergic reaction has on the inflammation in my body & my immune system as a whole.

Did you get your genetic testing through entero labs? Do you have a good resource for explaining genes & illnesses related to them?

Yes keep the lupus stuff in the back of your mind, mention that your aunt has it in your forms you fill out before apts...you may even want to have the kidney labs faxed to the rheumy you saw see if they have any input.

oh the liver biopsy was not too bad, I made them dope me up GOOD & didn't look at the needle!

thanks for sharing!

Good luck!!!

Sorry to hear that mslee I hope you find a little relief very soon.

After seeing an allergist, ENT, a gynecologist, endocrinologist, a rheumatologist, and having surgery to remove a swollen lymph node (which turned out to be perfectly normal) I've ruled out a LOT of things... I don't have lupus, Sjogren's, RA, psoriasis, or any other connective tissue disorder, my reproductive system is just fine, my thyroid is under control, and my adrenal glands are working great. I don't have lymphoma and my CBCs and CMPs are looking beautiful.

I do have some food allergies... and for some reason, my kidneys are releasing a little protein into my urine... still trying to figure out why. I also have a low positive ANA and I've started having mild abdominal pain again (no matter what I eat). I have an appointment with a gastroenterologist next month. I'm currently collecting stool samples to check for parasites and bacterial overgrowth.

The big question is why I keep having anaphylactic reactions. I had another one last week At this point, it looks like I either have idiopathic anaphylaxis (mast cells that go off for no apparent reason) or systemic mastocytosis (too many mast cells). IA is more common. The "good" news is that 85% of the time you can cure it by taking a course of prednisone. Yikes. I'd like to get rid of the attacks, but some of my aunts have taken prednisone and I know it can do scary things. On the other hand, mastocytosis would be even worse... the only way to stop the mast cells from multiplying (or get rid of some) is to take chemotherapy drugs.

By the way... how did you find out about the autoimmune hepatitis?

Wow you have been busy! I kinda did the same thing, went & saw a specialist for every system of my body that was having problems. You have mostly good news! good!

I'm glad you are seeing a GI, that's when I finally got some answers!

Did the Rheumatologist see that your kidney's were releasing protein? Lupus nephritis can cause that. Just be aware that Lupus is similar to celiac in testing because it is often missed in the tests, the ANA can go from positive to negative...it's very tricky to dx. So just keep an eye on any lupus like symptoms.

I have never heard of IA or mastocytosis, but know about those treatments. Prednisone is not SO bad if it is short term. Long term is scary. Learning about the chemo. no matter what chemo is scary...even in small doses. Allergy issues are difficult. They run in my family I never had any until removing gluten. After removing gluten it seemed I reacted to everything & have had to by trial & error rule foods out.

The allergist testing did help. My Rheumy suggested my problems with corn may not be an allergy but the fact that it is high in omega 6's which cause inflammation & since my body is very inflamed the omega 6's might just be agitating that. Who knows it's so complicated...I wonder about other foods I react to if they are high in omega 6.

Well I was dxed with lupus in 2001, I had gone a few years without treatment due to insurance issues. When I went back into the Rheumatologist they found my liver labs were coming back with high enzymes...this went on for a year & the numbers just kept going up. At that time I was having the celiac symptoms (but had never even heard of celiac) so I went to a GI who did more liver labs. He did the endo/colonoscopy and found the celiac & lymphatic colitis. Then did a liver biopsy & told me I have minor inflammation that should go away being gluten free. My labs have almost normalized being gluten free, but he said the risk of autoimmune hep would be there for life. When I saw my new Rheumy last week he said no, it was the Lupus attacking my liver...aka...autoimmune hep. That it's not too bad now but the risk for it to get bad is there & I need treatment to get my Lupus under control because my ANA is so high and I have gone without treatment for so long.

I think I'm going to ask for a short term of pred. & try plaquanill one more time first. Chemo just sounds too scary.

that's where I'm at, going to talk to my cousins wife this weekend about it she is a Dr. maybe will have some input.

Good luck with your allergy stuff. A short run of prednisone may be a huge help...just to get things under control.

I did a search most threads are pretty old. Didn't look like there were too many but a small handful of celiacs here with lupus or mixed connective tissue disorder.

I've had it for a long time, but it's just now starting to get a little scary. Anyways would love to chat, see how you handle it & what types of treatment they have given you.

You can p.m. me or reply, it would be nice to hear from others.