Testing For Other Autoimmune Disorders

[Mother of Jibril]

One of my autoimmune symptoms is a lack of moisture... dry eyes (Restasis helps a LOT), dry nose, dry mouth, dry skin, etc... Earlier this month I was tested for Sjogren's syndrome and with the exception of ANA (which was low and "speckled") everything else came back normal.

So here's my question...

I've read about a lot of people who had a negative blood test... numbers that were higher than zero, but not considered positive for celiac (myself included). They went on a gluten-free diet and felt better... so maybe they caught celiac at an early stage before too much damage was done to their intestines.

What about other tests for autoimmune disorders? I was tested for ESR, RF, SS-A and SS-B. Do numbers that are above zero, but not "positive" have any predictive value? It's not like I want to have Sjogren's (or some related disorder like lupus)... I just wonder what else seems "normal" for me, but is not really normal I also wonder if having another baby would put me and/or the baby at risk... lupus anticoagulant (SS-B antibody) is a known risk factor for miscarriage. Pregnancy seems to have been the trigger for most of my autoimmune problems.

I know we're not doctors and nobody has a crystal ball. Just curious.

[ravenwoodglass]

I have wondered about that also, hopefully someone can shed some light on the subject. There have been many autoimmune illnesses that I have fit over the years but the tests always came back negative. My celiac gene is an RA gene here in the US but I never showed positive for the antibodies even with definate RA symptoms. Most now in remission gluten-free thank goodness. I have wondered the same thing as you though since I was finally diagnosed. I do know that the specific tests you spoke about if you research them a bit do have false negatives rates. Whether they are as high a rate as with celiac I don't know.

[Mother of Jibril]

That's interesting about the false negatives. I've also read a lot of articles that say you can test negative and still have the disorder... especially if you're not having a flare. I know the gluten-free diet is helping me too. I feel a LOT better. The scary thing about lupus (which runs in my dad's family) is that flares can be triggered by UV light, not just food.

I have an appointment with a rheumatologist in March, so I'll be interested to hear what her perspective is. I definitely have antibodies and inflammation going on in various parts of my body... it just doesn't seem to add up to any particular diagnosis.

[Gemini]

One of my autoimmune symptoms is a lack of moisture... dry eyes (Restasis helps a LOT), dry nose, dry mouth, dry skin, etc... Earlier this month I was tested for Sjogren's syndrome and with the exception of ANA (which was low and "speckled") everything else came back normal.

So here's my question...

I've read about a lot of people who had a negative blood test... numbers that were higher than zero, but not considered positive for celiac (myself included). They went on a gluten-free diet and felt better... so maybe they caught celiac at an early stage before too much damage was done to their intestines.

What about other tests for autoimmune disorders? I was tested for ESR, RF, SS-A and SS-B. Do numbers that are above zero, but not "positive" have any predictive value? It's not like I want to have Sjogren's (or some related disorder like lupus)... I just wonder what else seems "normal" for me, but is not really normal I also wonder if having another baby would put me and/or the baby at risk... lupus anticoagulant (SS-B antibody) is a known risk factor for miscarriage. Pregnancy seems to have been the trigger for most of my autoimmune problems.

I know we're not doctors and nobody has a crystal ball. Just curious.

I have Celiac, Sjogren's, Hashi's and Reynaud's....at least these are the ones I know about! I had the SS-A/SS-B testing for Sjogren's and they were high so mine was a positive on that one. I also have the symptoms to back it up. Tell me, can you swallow a piece of bread without drinking anything? Honestly, I think that is a better predictor of Sjogren's than the test itself, for some!

I also have tested very high on my ANA and RF testing and my PCP wanted to refer me to a rheumatologist, which I have blown off and I'll tell you why. From all I have learned from picking the brains of specialists, what usually happens with autoimmune is that symptoms appear first. Which makes sense because this is what drives people to seek medical care. I have zero symptoms of RA or lupus and I believe my PCP thinks I have these also, judging from my results. What bothers me is how can a person have an autoimmune disease like RA or lupus and have absolutely no symptoms of either? Doesn't make sense. What I firmly believe is that anyone who is a full blown Celiac will have screwy blood work, period. Autoimmune diseases overlap with symptoms so this is why it's so hard to diagnose them. Most specialists never definitively give a diagnosis unless there are symptoms present to back up the blood work. Maybe someday I will see that rheumatologist but I am feeling really good so why muck things up?

Having said this, I also firmly believe you can have symptoms but test negative on blood work. Autoimmune problems are notoriously unstable but if you have just one autoimmune problem, you can have more.....that's a given. If you have really dry eyes and mouth and use Restasis with very noticeable results, you most likely have Sjogren's. The bread test is another factor, however low-tech it is!

I don't think the numbers on the test are predictive, they work like the Celiac antibodies. Nearly everyone produces antibodies but there is a normal range for them. The higher the number is outside of range, the worse the attack is. Thyroid antibodies are also the same....there is a normal range for those also. It sounds like you just are not showing Sjogren's in your blood results yet. Were you diagnosed with celiac disease using blood work? I also wonder if some will never show antibodies enough for a positive, like some do with celiac disease, yet still have the disease state.

My sister's daughter tested positive for Sjogren's but the doctors blew it off because they told her she has lupus and it "threw" the test. I say BS! She has BOTH of them and it was driving her crazy because they told her no but she has flaming symptoms of Sjogren's also. I have learned that even the most esteemed physicians don't know a lot about autoimmune disease and it's really hard to get a definitive diagnosis....you have to go with symptoms sometimes and your gut feelings.....like celiac disease. Unfortunately, my sister's daughter also has celiac disease but her doctors tell her she doesn't have it. She is a carbon copy of my symptoms and disease patterns but she is in denial about the celiac disease and prefers to believe the doctors. At 22 years old, I doubt she has enough damage to diagnose the AMA way but has loads of autoimmune problems, along with stomach issues!

I would suggest getting re-tested every year or so because it can take awhile for the antibodies to show in your blood. Having celiac disease will probably keep your ANA high for life but that's just a general test for inflammation and not much help. Sounds like you have Sjogren's to me and I would keep using your Restasis because it makes a huge difference. As for having another baby, yes, that can aggravate problems and be a risk but if you really want to have one, I say go for it!

[Mother of Jibril]

Tell me, can you swallow a piece of bread without drinking anything? Honestly, I think that is a better predictor of Sjogren's than the test itself, for some!

I don't think the numbers on the test are predictive, they work like the Celiac antibodies. Nearly everyone produces antibodies but there is a normal range for them. The higher the number is outside of range, the worse the attack is. Thyroid antibodies are also the same....there is a normal range for those also. It sounds like you just are not showing Sjogren's in your blood results yet. Were you diagnosed with celiac disease using blood work? I also wonder if some will never show antibodies enough for a positive, like some do with celiac disease, yet still have the disease state.

My sister's daughter tested positive for Sjogren's but the doctors blew it off because they told her she has lupus and it "threw" the test. I say BS! She has BOTH of them and it was driving her crazy because they told her no but she has flaming symptoms of Sjogren's also. I have learned that even the most esteemed physicians don't know a lot about autoimmune disease and it's really hard to get a definitive diagnosis....you have to go with symptoms sometimes and your gut feelings.....like celiac disease.

You raise some interesting points! To answer your questions...

My mouth is not bone dry. I noticed that it was getting harder to eat bread and especially crackers before I stopped eating gluten. It's a little hard to compare now that I've cut 99% of processed foods out of my diet, but plain meat (like turkey) is still slow going. Chocolate doesn't melt in my mouth like it used to. I've also had a lot of cavities over the last three years for no good reason. I brush, I floss... I hardly have any tartar. Lack of saliva seems like a reasonable explanation. I also notice the dry mouth when I give lectures and when I wake up in the morning with a "mouth full of cotton" feeling.

The dry eyes are much worse and they're inflamed, so the clinic is monitoring me for signs of glaucoma. With Restasis my eyes feel a lot better. They're no longer bloodshot, and I can't believe how crisp everything looks. Wow.

I started the gluten-free diet on the advice of an allergist, but she didn't tell me I should get tested for celiac first! By the time I figured out that I should get tested I had already been off gluten for six weeks and the tests were negative (although not zero). However... since I have the DQ8 gene, a couple of other autoimmune disorders, my mom has celiac, and I had a positive response to the diet (including the resolution of some pretty awful GI symptoms) I assume that I also have celiac disease... or would have tested positive eventually if I had not stopped eating gluten.

I also have Hashimoto's... my TSH was waaay out of range when I was diagnosed back in July, but nobody has ever tested me for antibodies (even though an ultrasound revealed a goiter)... I have an appointment with an endocrinologist in March.

That is BS about your sister! Lupus + Sjogren's = "secondary Sjogren's."

From what I've read about Sjogren's, all you can really do is treat the symptoms. So far I don't seem to have a problem getting prescriptions... but it does worry me that I'll have to find new doctors if we move in the next year or two (which is a definite possibility). Will they be as understanding about treating the symptoms without a firm diagnosis?

The SS-B situation also worries me. I've already had one pregnancy loss for "unexplained" reasons (unexplained because the CNM did not have a clue about autoimmune disorders!!). What if my levels are high enough to cause a problem, but not high enough for a positive result on the blood test? There is a treatment... taking baby aspirin and injections of low-dose heparin... but I can't imagine that any OB would do that without a firm diagnosis. I would love to have another living child in two or three years (so would my husband), but there are just SO many unanswered questions. I was hoping these tests would finally give me some answers. I wish these were problems I could fix on my own like celiac disease.

[mslee]

Hi Guys

I know I have talked to some of you a little about these autoimmune conditions. I have a couple & suspect a couple more...

In 2001 they said I have lupus, I saw several Rhuematologists and that was the consensus. They also always said "ah, your thyroid is a little off" but never treated it.

symptoms progressed, no meds helped

Summer 2008 my blood work showed autoimmune hep, which lead to my celiac dx.

My GI says the celiac caused my lupus & other autoimmune issues and going gluten free should heal them all...

in the mean time my old Rheumy dropped me due to insurance issues, so I have not discussed any of this with a Rheumy. I have an apt with a new one in March. I can't wait to hear what he has to say!

also next week seeing my first endocrinologist for my thyroid & some blood sugar issues.

So I say yes go though with your Rheumy apt. they can run blood work for other autoimmune conditions. And knowing that autoimmune runs in your family it is probably something you may want to check on every year or two.

Keep in mind not all docs are good docs, not all docs are up to date, some are critics....autoimmune conditions are mysterious to most dr.s your lucky to find a good one. Don't get discouraged if the first does not work out.

good luck!!!

[mslee]

also wanted to add that testing for other autoimmune issues is alot like testing for celiac because...people can go years without a dx, some dr are skeptical or non believers, symptoms do overlap, you can go in circles for years and not get very far...all that fun stuff!

Best of luck to you!

[flourgirl]

March must be Celiacs Go To The Rhuemy Docs month! I also have an appointment in march to address some of these issues. I have been complaining to my doc for 2 years that my throat feels tight and it's hard to swallow.....severe pain in almost all of my joints which is getting worse, I use eyedrops. Her response was to give me an antidepressant.....which she told me would ease my pains and help me to sleep at night ?? Anyway I finally have the app. to see what is what. I'm convinced it's Sjogrens. I don't eat anything that is dry anymore because I can't get it down! Good luck to all of you!

[Gemini]

Mother of Jibril.....with all of your symptoms, autoimmune problems and a mom with Celiac, you should never, ever doubt yourself that you do indeed have celiac disease. This is how a diagnosis used to be made, before doctors got cocky and relied solely on a biopsy or blood result for everything. Many of us here have multiple autoimmune problems and the last thing we need is to be jerked around by doctors who may give us a hard time about a "proper" diagnosis. That terminology exists in their minds only.

Sjogren's can present with varying degree's of dryness but when someone tells me that they have trouble swallowing food without drinking liquids, it's a no-brainer, especially if they have celiac disease. I also have severe dental problems, not cavities but gum recession and bone loss, along with teeth that have ridges on them. celiac disease will cause that but Sjogren's will aggravate the problem also because saliva contains enzymes which protect your teeth from decay and other issues. Little saliva = tooth and gum problems. But you know what....it could be worse! One other clue.....I have found that when I eat chocolate, or anything for that matter, I get the chocolate ring around my lips. With lack of saliva, a person doesn't even have enough spit to clear away food from your lips, like anyone else without Sjogren's. So when I eat, I have to always wipe my mouth to make sure I don't look like a 2 year old who has just devoured a chocolate bar! It's a blast when you have minty lifesavers because I look like I have rabies, with all that white stuff on my lips! I am the queen of lip balm!

You have a tough decision to make about having another baby and I can understand your fears. Autoimmune problems are a real pain because you just never know when a flare-up may occur, plus pregnancy puts stresses on the body which complicates things. What is this baby aspirin and heparin combo used to treat? That sounds dangerous in itself. What if you consulted with one of those high risk pregnancy specialists? They might have answers for you to help make a more informed decision.

To be honest, I never had children and when I look back at my health in those days, when I was text book Celiac and suffering, I doubt I would have carried to term. I was a mess and didn't realize how bad until I was diagnosed and went gluten-free.

As for a doctor saying that going gluten-free will cure these other autoimmune problems.....yeah, right! It helps alleviate symptoms somewhat but I am not and never will be "cured"! I went too long without a diagnosis.

To all the others who responded with their stories.....I think what needs to happen is the medical profession should be studying Celiacs with other autoimmune disorders. If they compiled all of our stories and data, think of what they could learn! My family are all in denial about having a problem with gluten and yet, they have many, many autoimmune disorders, all related to Celiac. I blew off the Rheumy because I had discussions with some doctors who still don't get the connection and think I just have a propensity towards autoimmune problems. Well, yeah I do but I still firmly believe that a long time without a diagnosis by the so-called professionals resulted in my having these problems. I'm not going to sue anyone but just want honest answers. At some point I will go to see one but honestly, if I do have more autoimmune problems, I don't want to hear about it right now. Within a 4 year period, I figured out all my issues and requested testing, and they were confirmed. I need a break from bad news. Luckily, I am doing fairly well and my eyes are my only main problem, which I see an opthomologist (sp?) for. In this economic climate, you just can't be leaving work early to see all these doctors!

To those who will see a Rheumy soon, please post what you can about your experience. I would love to compare notes so we can learn as much as possible. Very few Celiacs just have Celiac Disease so I think this could be interesting, to say the least!

[Mother of Jibril]

Mother of Jibril.....with all of your symptoms, autoimmune problems and a mom with Celiac, you should never, ever doubt yourself that you do indeed have celiac disease. This is how a diagnosis used to be made, before doctors got cocky and relied solely on a biopsy or blood result for everything. Many of us here have multiple autoimmune problems and the last thing we need is to be jerked around by doctors who may give us a hard time about a "proper" diagnosis. That terminology exists in their minds only.

You have a tough decision to make about having another baby and I can understand your fears. Autoimmune problems are a real pain because you just never know when a flare-up may occur, plus pregnancy puts stresses on the body which complicates things. What is this baby aspirin and heparin combo used to treat? That sounds dangerous in itself. What if you consulted with one of those high risk pregnancy specialists? They might have answers for you to help make a more informed decision.

Thanks for your supportive message I really appreciate hearing about your own experience.

Interesting that you mention talking to a high-risk OB. I did talk to a perinatologist back in August. He basically said, "Well... we could test you for some things if you want to ... but it's expensive and you still might not get any answers... and I don't think you have APS because you've only had one loss." Then he went on to tell me that the rate of loss is highest in the first trimester (because of chromosomal abnormalities), dips to around 1% in the second trimester, and climbs back up to around 5% at full-term. Now... I'm no doctor, but my loss was in the second trimester... the time when it's MOST unusual to have a loss. Wouldn't that be a good reason to run some tests? How many losses did he think I was planning to go through without looking for some answers?

In addition to the rheumatologist, I also have an appointment with a new GYN at the end of March who I've heard is really good. Maybe one of them will suggest some more tests... I don't know. I think if I'm ever going to get pregnant again, what I need is a specialist who is willing to work with me throughout the pregnancy to monitor my symptoms and levels of antibodies and offer treatment right away if a problem develops. Not just "wait and see."

What happens with lupus anticoagulant is that it promotes blood clots... not necessarily in the mom (although DVT is a possibility), but in the placenta. That can cause the fetus to stop developing or even die from lack of oxygen Even more dangerous... you could have a placenta abruption. If you can prevent clots from forming (with baby aspirin and low-dose heparin) then chances are good that you can have a healthy, full-term baby. Untreated hypothyroidism and celiac disease are very dangerous too, but I seem to have those issues under control. Maybe that's enough. I don't know.

The biggest problem is that this is such a new area of research... a lot of OBs don't know about it. And of course, there are concerns about giving treatments that are unnecessary. It's better not to be on blood thinners if you're forced to have an emergency c-section, for example.

I'll definitely let you know what the rheumatologist says!

[georgie]

What about other tests for autoimmune disorders? I was tested for ESR, RF, SS-A and SS-B. Do numbers that are above zero, but not "positive" have any predictive value?

I am absolutely sure that this can happen. Antibodies fluctuate day to day and I know for a fact that in autoimmune Addisons that the Addisons Antibodies will disappear to zero if you have had the disease for a while before you have the test. A Pathology Dr told me this and my lab wrote much the same on the test I had done. And the same with Hashimotos Thyroid Antibodies - once again - if the Thyroid is 'dead' tissue because it has been attacked by antibodies - it can no longer makes the antibodies ....So I am sure that there are many other autoimmune conditions like this. Blood tests are never 100% accurate.

[Gemini]

Interesting that you mention talking to a high-risk OB. I did talk to a perinatologist back in August. He basically said, "Well... we could test you for some things if you want to ... but it's expensive and you still might not get any answers... and I don't think you have APS because you've only had one loss." Then he went on to tell me that the rate of loss is highest in the first trimester (because of chromosomal abnormalities), dips to around 1% in the second trimester, and climbs back up to around 5% at full-term. Now... I'm no doctor, but my loss was in the second trimester... the time when it's MOST unusual to have a loss. Wouldn't that be a good reason to run some tests? How many losses did he think I was planning to go through without looking for some answers?

This is all very interesting, even though it is a subject I know nothing about. However, I will add that my mother, who I KNOW has celiac disease or GS because of her flaming symptoms (the ones she is in denial about), was a product of the 50's when there was little to no birth control. She was pregnant a total of 8 times and miscarried 4 of the pregnancies. I am not sure if they were all in the first trimester or not. It's not a subject I push with her. I thought that was a large percentage and I think it was probably because she most likely has celiac disease and has never been diagnosed. She now has flaming osteoporosis and Celiac teeth, plus she is shrinking at an alarming rate. When I look at her it's another reminder of how important being gluten-free is!

I can understand your ambivalence about another pregnancy, what with losing the child in the second trimester. That has got to be so hard. I agree with your idea of testing now and think the doctor kind of jerky for saying what he did. Only one loss? Good grief, that's not something I would want to have happen twice!

[mslee]

Well had to bump my Rheumy apt to the first week of April, but have PLENTY of questions for him when I see him. I'm excited because he seems like he will be a good Dr. in an area where they are doing lots of Lupus research.

So will post what he says...

Also Mother of Jibril,

Lupus pregnancies are usually high risk, and can cause flairs in women...meaning it makes symptoms worse. Although there are some cases where women feel better during the pregnancy. Lupus is confusing! I'm coming to terms with not having kids because I know my little body can't handle it. And my heart & mind can't handle a miscarriage. But thats just my choice, may adopt down the road.

Good Luck!

Hope all work out for you!

~ali

[Mother of Jibril]

When I look at her it's another reminder of how important being gluten-free is!

That's how I feel about my mom too. She has many wonderful qualities, but health-wise I do NOT want to be like her.

I can understand your ambivalence about another pregnancy, what with losing the child in the second trimester. That has got to be so hard. I agree with your idea of testing now and think the doctor kind of jerky for saying what he did. Only one loss? Good grief, that's not something I would want to have happen twice!

Also Mother of Jibril,

Lupus pregnancies are usually high risk, and can cause flairs in women...meaning it makes symptoms worse. Although there are some cases where women feel better during the pregnancy. Lupus is confusing! I'm coming to terms with not having kids because I know my little body can't handle it. And my heart & mind can't handle a miscarriage. But thats just my choice, may adopt down the road.

There are days when I feel like I could handle trying for another child. I've learned a LOT about pregnancy loss, autoimmune disorders, how to take care of myself... Maybe all the changes I've made... diet, supplements, thyroid medication, learning to manage my stress... have been enough. Losing another child would be HARD, but I'm not the same person I was when it happened the first time. Maybe everything would be fine! We could end up with another beautiful child and our family would be complete.

And then there are days when my health is not optimal (I glutened myself last week) and it's like... "What am thinking???" I am HAPPY right now. My existing children are amazing, my marriage is finally recovering from the stress of losing a child, I seem to be getting my autoimmune problems under control... why should I risk it? For what? For the CHANCE that I could have one more living child... and who knows what that child would be like! Some kids are easier to raise than others My son is the happiest, most easy-going child... my daughter is hilarious, but a LOT of work to keep up with (grandma calls her the Energizer Bunny). Sometimes, love does NOT conquer all. Plus, pregnancy has been a big trigger for my autoimmune problems. Like you said, mslee... I could be risking my own health.

One step at a time, I guess I could see myself being happy (or regretful... or maybe even miserable...) either way.

[Jaimepsalm63]

It would be so helpful is there was at least one place doctors would just study people with Celiac. Of course I dream. I too have not just Celiac, but also gastroparesis (autoimmune), Sjogren's (autoimmune), reynaud's (autoimmune), and now they also suspect lupus???!!! I mean seriously, can some doctor or group of upcoming doctors catch on and actually do research on people like us. I'm willing to volunteer not just to hopefully get some relief for myself, but to help other people so they don't sit there like I was/am for the longest time thinking there must be something psychological (which one doctor suggested to me because I just wanted attention...sure...ugh).

Mind you I'm fortunate that I have an awesome GI doc. He's the one who listens to all my symptoms and doesn't just concentrate on the stomach complaints (even though that's what is really killing me at this point).

That's just my two cents. Too bad there aren't med students reading these posts saying..."Wow, these people need me to do something for them". Bummer...

[mslee]

It would be so helpful is there was at least one place doctors would just study people with Celiac. Of course I dream. I too have not just Celiac, but also gastroparesis (autoimmune), Sjogren's (autoimmune), reynaud's (autoimmune), and now they also suspect lupus???!!! I mean seriously, can some doctor or group of upcoming doctors catch on and actually do research on people like us. I'm willing to volunteer not just to hopefully get some relief for myself, but to help other people so they don't sit there like I was/am for the longest time thinking there must be something psychological (which one doctor suggested to me because I just wanted attention...sure...ugh).

Mind you I'm fortunate that I have an awesome GI doc. He's the one who listens to all my symptoms and doesn't just concentrate on the stomach complaints (even though that's what is really killing me at this point).

That's just my two cents. Too bad there aren't med students reading these posts saying..."Wow, these people need me to do something for them". Bummer...

I know in San Diego there is a big Celiac research group...here is a link for more info Open Original Shared Link

So I saw my new Rheumatologist & the news is not so good. Yes Gemini he said the celiac is just one of several autoimmune disorders I have. Being gluten free will help the celiac....I wish that GI had never said that "oh it will heal everything" false hope & all. Now they want me on heavy duty meds & I'm pretty scared.

I have "very clearly" SLE Lupus with a very high ANA, Celiac, Hashimoto's, Raynaud's, Autoimmune Hep. & as a result of all these fibromyalgia.

He wants me to start a low dose of the chemo drug methotrexate to get my immune system under control. I am debating this, I can try a med I have tried in the past agin, try to do it all naturally, or try the chemo drug...those are my choices.

Most with lupus don't have to use that drug, so I don't want to scare anyone...it's just that the other meds don't work on me & I keep getting worse.

Anyone else have updates??? Would love to hear from you guys, curious how many with Celiac also have Lupus or other more serious autoimmune conditions. & How you are doing.

thanks,

~ali

[Mother of Jibril]

I have "very clearly" SLE Lupus with a very high ANA, Celiac, Hashimoto's, Raynaud's, Autoimmune Hep. & as a result of all these fibromyalgia.

Anyone else have updates??? Would love to hear from you guys, curious how many with Celiac also have Lupus or other more serious autoimmune conditions. & How you are doing.

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?

[mslee]

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.

[Mother of Jibril]

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

Me too! I should have seen one a long time ago... I've been having abdominal pain for more than a year. At first I thought it was afterpains (from giving birth), then cramps from the IUD, then gluten intolerance (the gluten-free diet made a HUGE difference), then corn intolerance... but there's still something going on and it's definitely time to figure out what.

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.

Unfortunately, I didn't know about the protein in my urine when I saw the rheumatologist. One of my aunts has lupus and I have the gene for it (DQ7)... I'm definitely keeping that in mind.

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 predisone treatment for IA starts with 60mg for six weeks, then every other day, then you taper down by 10mg per month. The hope is that you can bring about a remission and get off the prednisone entirely. Otherwise, you stay at whatever dose keeps the attacks away. I had the same experience as you... lots of allergies in my family, but they were never a problem for me until I went gluten-free

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.

Liver biopsy... ouch I'm glad to hear that your labs are looking better.

My allergist wants to follow up on the urinalysis in three months. I'm thinking of making an appointment with my GP to ask if she's the right person to do that. Why are my kidneys releasing protein? I don't have diabetes or high blood pressure... is it really OK to just wait and see? I'm also thinking of going up to Chicago to consult with a doctor/researcher at Northwestern University who specializes in IA and other mast cell disorders (unless he can recommend somebody in Indianapolis).

I hope the prednisone works for you!! How long are you supposed to be on it?

[mslee]

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!!!

[Mother of Jibril]

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.

thanks for sharing!

Good luck!!!

Yes, I did use Enterolab. I wish I knew my HLA-DR genes too... those are also involved in autoimmune disorders. There are labs that can run that test, but a doctor has to order it.

The Wikipedia HLA-DQ page is a good place to start learning: Open Original Shared Link You can also google specific genes like *0301 (the main DQ7 beta). It's amazing how much information is out there if you keep searching.

Good luck to you too!!!

[Gemini]

So I saw my new Rheumatologist & the news is not so good. Yes Gemini he said the celiac is just one of several autoimmune disorders I have. Being gluten free will help the celiac....I wish that GI had never said that "oh it will heal everything" false hope & all. Now they want me on heavy duty meds & I'm pretty scared.

I have "very clearly" SLE Lupus with a very high ANA, Celiac, Hashimoto's, Raynaud's, Autoimmune Hep. & as a result of all these fibromyalgia.

He wants me to start a low dose of the chemo drug methotrexate to get my immune system under control. I am debating this, I can try a med I have tried in the past agin, try to do it all naturally, or try the chemo drug...those are my choices.

Most with lupus don't have to use that drug, so I don't want to scare anyone...it's just that the other meds don't work on me & I keep getting worse.

Anyone else have updates??? Would love to hear from you guys, curious how many with Celiac also have Lupus or other more serious autoimmune conditions. & How you are doing.

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.

[mslee]

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!

[Gemini]

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!

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!

[mslee]

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!!!