Lupus

[mslee]

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!

[nasalady]

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!

Hi Ms. Lee,

I was just recently diagnosed with SLE, within the past two months....I have a long laundry list of AI diseases now in addition to lupus: Hashimoto's thyroiditis, psoriasis, celiac disease, autoimmune hepatitis, and rheumatoid arthritis. I also have fibromyalgia, which may or may not be autoimmune, but is at the very least closely associated with AI diseases.

I was diagnosed with celiac disease a year ago.

My rheumy thinks I may have CNS lupus, because I have a number of unexplained neurological symptoms. Actually he says I have "rhupus", which is apparently lupus + RA.

On top of all of this, I've just found out within the past couple of days that I may have Lyme disease! My Lyme ELISA test was positive, although I haven't had the Western Blot test yet, which seems to be the gold standard.

I've always blamed celiac for the other diseases, because of the following article:

Open Original Shared Link

But now I'm wondering if Lyme could have triggered many of them, or if it could be mimicking some of them?!

I've just got way too much going on with me medically speaking.....

But I would be happy to talk with you!

JoAnn

[nasalady]

P.S. With regards to Lyme disease mimicking AI diseases, including lupus, please see an old thread of mine: https://www.celiac.com/gluten-free/index.php?showtopic=62079

and the following links (which I believe were given to me by Fiddle-Faddle):

Open Original Shared Link

Open Original Shared Link

Interesting, eh?

[nasalady]

P.P.S. With regards to the rarity of celiac and lupus occurring in the same person:

Open Original Shared Link

J Clin Gastroenterol. 2008 Mar;42(3):252-5.

Adult celiac disease followed by onset of systemic lupus erythematosus.

Freeman HJ.

Department of Medicine (Gastroenterology), University of British Columbia, Vancouver, BC. hugfree@shaw.ca

BACKGROUND: Celiac disease has been associated with autoimmune disease (eg, autoimmune thyroiditis) and the appearance of different autoantibodies (eg, antidouble-stranded DNA). Conversely, tissue transglutaminase antibodies have been detected in autoimmune disorders, including systemic lupus erythematosus (SLE), but cases of celiac disease with SLE have been only rarely recorded. METHODS: In this study, 246 patients with biopsy-defined celiac disease were evaluated for a prior diagnosis of SLE on the basis of American Rheumatological Association-defined clinical and serologic parameters. RESULTS: There were 6 patients with celiac disease and SLE, or 2.4%, including 4 females and 2 males. Their mean age at diagnosis of celiac disease was 44.7 years and SLE 50 years. In all patients, the diagnosis of SLE was established from 2 years to more than 10 years after the diagnosis of celiac disease, with a mean of 5.3 years. The celiac disease in all 6 patients responded to a gluten-free diet with histologic normalization of the small intestinal biopsies. Despite this small bowel biopsy response, SLE appeared later in the clinical course of the celiac disease. CONCLUSIONS: This study suggests that SLE occurs far more frequently in biopsy-defined celiac disease than is currently appreciated, and detection may be more likely if the period of clinical follow-up of the celiac disease is prolonged.

PMID: 18223501 [PubMed - indexed for MEDLINE]

[Wolicki]

I was diagnosed with Lupus 10 years ago. Through the years, I took prednisone, methotrexate, plaquenil, cortef, florinef and probably others that I can't remember now. In June I was diagnosed with Celiac. All of my "lupus" symptoms miraculously vanished. I've been off all drugs for 5 months and feel fantastic most of the time. All inflammatory markers are now completely normal.

[mslee]

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.

[Wolicki]

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.

I never got the rash, but I did have pleurisy constantly, joint pain, fevers, fatigue and malaise. All of it went POOF when I went gluten-free, within 3 days! I have a whole new bunch of symptoms to deal with, but these are easier than the constant pain, for sure! Wishing well for you!

[nasalady]

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

That is really interesting....I've been reading that people who are being tested for lupus, RA, MS, etc. should probably be tested for Lyme disease as well, as part of the diagnostic process.

My family has a long history of lupus and other AI diseases....I have aunts and cousins with lupus that live in other parts of the country; some of them I've never even met. So I'm fairly confident that I do actually have a number of AI diseases.

But the original set of illnesses that I know I've had since childhood were Hashimoto's, psoriasis, and asthma. Then about 18 months ago began this incredible EXPLOSION of diagnoses: autoimmune hepatitis, fibromyalgia, RA, celiac, and now SLE. I probably had celiac since I was little but it was just diagnosed.

Now my Lyme ELISA test is positive.....I wonder if I contracted Lyme sometime in the past few years and it triggered all these new AI disorders because I already have a genetic predisposition to developing these conditions??

I'm so sorry to hear about your insurance issues....it's absolutely appalling that people who need medical care can't get it!! And now that the Democrats in the Senate have apparently rolled over and are playing dead, the insurance companies will probably get what they want....

[mslee]

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!

[mslee]

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

[nasalady]

Hi MsLee,

Thanks for the link.....that's very interesting research!

I've recently found out that LLMDs rarely accept ANY type of insurance. I'm paying for everything up front (including the Igenex Western Blot test), then I have to present it to the insurance company to see if they will reimburse me. It is expensive! The Western Blot is $475 and the first visit with the LLMD will be $625!

My liver enzymes have been approaching normal, probably because I've been on such high dosages of prednisone and Imuran. But recently during my "rhupus" flare, the enzymes drifted a bit higher. I was told that's pretty typical for a flare. They're coming back down now, since my rheumy upped the pred dosage.

Take care.....

Happy Holidays to everyone!

JoAnn

[gfp]

P.P.S. With regards to the rarity of celiac and lupus occurring in the same person:

Open Original Shared Link

J Clin Gastroenterol. 2008 Mar;42(3):252-5.

Adult celiac disease followed by onset of systemic lupus erythematosus.

Freeman HJ.

Department of Medicine (Gastroenterology), University of British Columbia, Vancouver, BC. hugfree@shaw.ca

BACKGROUND: Celiac disease has been associated with autoimmune disease (eg, autoimmune thyroiditis) and the appearance of different autoantibodies (eg, antidouble-stranded DNA). Conversely, tissue transglutaminase antibodies have been detected in autoimmune disorders, including systemic lupus erythematosus (SLE), but cases of celiac disease with SLE have been only rarely recorded. METHODS: In this study, 246 patients with biopsy-defined celiac disease were evaluated for a prior diagnosis of SLE on the basis of American Rheumatological Association-defined clinical and serologic parameters. RESULTS: There were 6 patients with celiac disease and SLE, or 2.4%, including 4 females and 2 males. Their mean age at diagnosis of celiac disease was 44.7 years and SLE 50 years. In all patients, the diagnosis of SLE was established from 2 years to more than 10 years after the diagnosis of celiac disease, with a mean of 5.3 years. The celiac disease in all 6 patients responded to a gluten-free diet with histologic normalization of the small intestinal biopsies. Despite this small bowel biopsy response, SLE appeared later in the clinical course of the celiac disease. CONCLUSIONS: This study suggests that SLE occurs far more frequently in biopsy-defined celiac disease than is currently appreciated, and detection may be more likely if the period of clinical follow-up of the celiac disease is prolonged.

PMID: 18223501 [PubMed - indexed for MEDLINE]

Why oh why do researchers always want to start out by making a study invalid from inception?

Why biopsy proven ? They are happy to use the serological testing for SLE but not celiac disease???

Hmm.. sounds a bit like GI's being over possessive about celiac disease and making sure it is classified as a GI disease not auto immune.

They have completely missed the point here. Any idiot genetics researcher knows that the auto immune HLA carries the MHC. There are established markers for antigen response to gluten in celiacs which the GI's have chosen to completely ignore.

Some very cheap testing of immunoglobulin response could have actually shown who had SLA and celiac disease and perhaps even identified the genetics responsible in HLA-DQ2 & DQ8 but instead they set out to produce a misleading study that keeps celiac disease firmly as a GI disease.

How hard would it have been to monitor the IgA ad IgG response in the patients and establish a correlation (or not) between them and SLA?

[Guest dyscelia]

I dont have any "scientific evidence" to back this up, but just in my own life I have seen a connection. My mom has lupus and I have celiac, and the same is true of my friend and her mom. Neither of our parents have been tested for celiac though and neither are on a gluten free diet!!! soo.. it really makes me think that either there is a very strange and very strong connection between lupus and celiac, OR in some cases they are one in the same.

Dont know if that helps at all, but I just thought I would share that .

[nasalady]

Why oh why do researchers always want to start out by making a study invalid from inception?

Why biopsy proven ? They are happy to use the serological testing for SLE but not celiac disease???

Hmm.. sounds a bit like GI's being over possessive about celiac disease and making sure it is classified as a GI disease not auto immune.

They have completely missed the point here. Any idiot genetics researcher knows that the auto immune HLA carries the MHC. There are established markers for antigen response to gluten in celiacs which the GI's have chosen to completely ignore.

Some very cheap testing of immunoglobulin response could have actually shown who had SLA and celiac disease and perhaps even identified the genetics responsible in HLA-DQ2 & DQ8 but instead they set out to produce a misleading study that keeps celiac disease firmly as a GI disease.

How hard would it have been to monitor the IgA ad IgG response in the patients and establish a correlation (or not) between them and SLA?

gfp,

You're correct of course.....my original point in giving that as a reference was that it was one of the few studies I had seen that quoted the "low" frequency of celiac and lupus occuring in the same person. But, as you've pointed out, in this paper from the Journal of Clinical Gastroenterology, they *are* apparently trying to slant things to make it appear that celiac is not autoimmune. Which is ludicrous.

It's possible that the incidence of celiac and lupus occurring in the same person is much higher than reported, but because people see specialists for these things, they only talk to the rheumy about lupus and they only talk to the gastro about celiac, the rheumy and the gastro don't really care about the other illnesses that lie beyond their purview.....??

What do you think?

dycelia,

There's actually plenty of scientific evidence to back up a link between celiac and many other autoimmune disorders. Celiac is known to produce high levels of the cytokine, zonulin, which increases the permeability of cell walls.

This can actually cause so-called "leaky gut" syndrome, where molecules that belong ONLY in the intestines manage to sneak through into the blood stream, which in turn causes the immune system to go into high gear and frantically start manufacturing all sorts of antibodies to combat the invaders. Current theory is that this can lead to some sort of "confusion" on the part of the immune system, causing various autoimmune diseases, where the immune system is attacking the body's own organs (mistaken identity?).

You can read all about at this link (given also in an earlier post of mine in this same thread):

Open Original Shared Link

Best wishes,

JoAnn

[gfp]

gfp,

You're correct of course.....my original point in giving that as a reference was that it was one of the few studies I had seen that quoted the "low" frequency of celiac and lupus occuring in the same person. But, as you've pointed out, in this paper from the Journal of Clinical Gastroenterology, they *are* apparently trying to slant things to make it appear that celiac is not autoimmune. Which is ludicrous.

It's possible that the incidence of celiac and lupus occurring in the same person is much higher than reported, but because people see specialists for these things, they only talk to the rheumy about lupus and they only talk to the gastro about celiac, the rheumy and the gastro don't really care about the other illnesses that lie beyond their purview.....??

What do you think?

dycelia,

There's actually plenty of scientific evidence to back up a link between celiac and many other autoimmune disorders. Celiac is known to produce high levels of the cytokine, zonulin, which increases the permeability of cell walls.

This can actually cause so-called "leaky gut" syndrome, where molecules that belong ONLY in the intestines manage to sneak through into the blood stream, which in turn causes the immune system to go into high gear and frantically start manufacturing all sorts of antibodies to combat the invaders. Current theory is that this can lead to some sort of "confusion" on the part of the immune system, causing various autoimmune diseases, where the immune system is attacking the body's own organs (mistaken identity?).

You can read all about at this link (given also in an earlier post of mine in this same thread):

Open Original Shared Link

Best wishes,

JoAnn

One of our family friends is a GI; he is one of the nicest guys you could hope to meet. After the Tsunami he gave up his (well paid consultancy) job and flew to Sri Lanka ... so he is in no way simply a self interested GI ...

However: Trying to get him to acknowledge the AI and neuro parts of celiac disease is like talking to a blank wall.

He sees celiac disease as GI and that is about it!

My considered opinion of Medical Doctors on the whole is that they have the science removed when they start med school. Perhaps we have a gland somewhere and young Med Students get it taken out?

More seriously though: this is the difference between science and medicine.

MD's are told to believe clinical trials and ONLY clinical trials ...the whole science part seems to completely bypass them.

It might be outstandingly obvious to a scientist that we are talking about a known AI gene sequence and HLA is one of the most completely studied of the human genome. It is even named so that we know what it does .. Human Leukocyte Antigen ...

We know the markers for celiac disease (at least mostly) and we know what tests can be done to identify the antigens.

It strikes me as incredible they did serology on the SLA and then threw away the blood before testing for IgA, IgG and the other well known markers???

Instead of biopsy proven Y/N and SLA they could have had quantitative results ?? Is there a link between celiac disease antigens and development of SLA? Which ones?? Then we could look at some preventative measures instead of "Uh, more people with biopsy proven celiac disease get SLA than we thought".

There is a certain amount of protectionism as well in my opinion and this is readily exploited.

To be cynical the number of cases of celiac disease are increasing and this is a potential cash cow to someone. The GI's would prefer it to be them. If this is defined as a AI disease then this will not be them.

As Fasano stated, this is a multi billion dollar business!

The most distressing part for us is that scientific studies are buried.

The UK Coeliac Society funds research but then buries the research not in it's interest. (specifically, its interest is not that of its members)

The drug companies have little to no interest in something they cannot turn a profit on in the short term ...

This leaves a few pure academic studies which are then ridiculed by the pharmaceutical companies and bodies of professionals who view it as not in their interest.

The reason I post infrequently is because of a discussion on adoption of the WHO/FAO CODEX standard on gluten-free and the position of the GIG. Cynthia Kupper admitted that there was no evidence that CODE standard starch had no detrimental effect on celaics but wants to adopt it anyway. The 'evidence' is that the mortality and morbidity is not particularly worse in Europe (which already adopted the standard) than the US which has not.

This ignores outright the differences in life expectancy between the US and European countries (where the US falls not only below the European countries but many third world ones too).

Secondly it does not address the fact many Europeans get ill and so choose not to eat the CODEX <20ppm wheat starch.

Thirdly it fails to consider that many European and especially UK coeliacs are also diagnosed with non specific IBS.

Indeed the normal course of diagnosis for a confirmed coeliac in the UK who continues to have GI symptoms is to diagnose non-specific IBS.

Fourthly, cause of death in celiacs is rarely attributed to celiac disease per-se. To take an extreme if celiac disease is a contributer to bowel cancer then cause of death is usually cancer; not celiac disease. Given the diversity of symptoms and complications however from other auto immune conditions I would have to ask how the mortality rates are linked to celiac disease.

Lastly: Even if it's not a direct killer is it acceptable to make millions of people ill?

It amazes me that the simple study of two groups of celaics and monitoring of markers and symptoms could actually give some hard scientific evidence not "mortality/morbidity is no higher in Europe".

What really annoys me is this then takes away our choice. We cannot rely on a label saying gluten free: however back to the point, is this science?

If it is then it on a grand scale involving potentially making millions sick in order to find if .. well they are sick?

The biopsy itself is the next key: What makes the biopsy a gold standard (excepting history)?

Regardless of the result of a biopsy what is the condition on someone who as a result of eating gluten has massively raised antigens permanently?

To put this in context, what is the difference between celiac disease and SLE in terms of diagnosis?

Well SLE has no known single markers yet it can be diagnosed on serology for different non-specific tests.

My Aunt died of Lupus (SLE and contributing drug induced Lupus): Well, not exactly ... her immune system started rejecting her insulin so she died of diabetes although she slipped into a coma and her kidneys failed and ultimately she died of heart failure ??? I could stretch a point and say she died of undiagnosed celiac disease but that is conjecture.

Still, we all die ... however why make it unpleasant and earlier than necessary?

My aunt suffered GI symptoms her whole life ... my mother, her sister has celiac disease.

Are they linked?

Well my guess is if we are to find out we need to compare oranges with oranges, we cannot compare biopsy results with people claiming to be gluten-free with SLE ... regardless of the biopsy development (or not) of SLE needs to be monitored with serological markers for celiac disease and dietary compliance.

Just my 2c, but then I'm not publishing the Journal of Clinical Gastroenterology ... and perhaps they would never publish since if I was to write it would not firmly place celiac disease as a GI only disease!

[amcken3]

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!

I was diagnosed with Systematic Lupus (severe) and gluten intolerance yesterday. I also have a multitude of lipomas (fatty tumors) everywhere. I am praying all will clear up when I go gluten free. I am mourning pretty heavy. Didn't realize how addicted I was to wheat (and oats etc.) I'm going to try a special diet that a few people said got rid of their excess weight gain in the middle and lipomas within the next month or so. May do a candida cleanse first.

[ravenwoodglass]

I was diagnosed with Systematic Lupus (severe) and gluten intolerance yesterday. I also have a multitude of lipomas (fatty tumors) everywhere. I am praying all will clear up when I go gluten free. I am mourning pretty heavy. Didn't realize how addicted I was to wheat (and oats etc.) I'm going to try a special diet that a few people said got rid of their excess weight gain in the middle and lipomas within the next month or so. May do a candida cleanse first.

Don't overwhelm yourself. Start out concentrating on being gluten free. Some of that 'middle weight' may be bloat from the effects of celiac. I went from a size 12 down to 2-4 within the first month due to a loss in the bloat that I had to buy larger sizes to accomodate. Also the gluten free diet may help with some of the lupus symptoms or some that are being attributed to the lupus that are actually related more to celiac. I am not saying you don't have lupus, just that some of the symptoms of celiac and lupus can be similiar. Welcome to the board, read as much as you can as this diet can take some learning. Go with whole unprocessed foods as much as you can to start, you'll heal faster and have less chance of a slip up that way.

[mslee]

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.