Lupus, Sjogrens, Maybe Celiac?

[jenkay]

Hello,

My first post here, I'm Jen from upstate NY. Dx with Systemic Lupus three year ago and Sjogrens this past may. I also have Raynauds and many other lupus related issues including severe complicate migraines that sometimes cross over to seizure type events.

Being tested for Celiac today. What led me to the celiac test is I had my first seizure event of the season this past Tuesday after not having one for three months. Same pattern the past 3-4 years. I get migraines year round 10-20 a month but only get the complicated kind in the fall, winter and spring, so what is the trigger?

I found a site that mentioned daylight hour changes and low serotonin due to celiac. Made a lot of sense and would explain a lot of other symptoms such as muscle weakness in legs, etc. I really don't have significant gut issues but the gut does feel 'clean' when I sometimes take bread out of the diet.

Anyway, I'm so curious to get the initial labs back.

Would be interested in any feedback you have, may try the gluten free thing regardless of the labs.

Jen

[CarlaB]

Welcome! Please check out this thread. It's a fit for all the symptoms you describe so it might be something to look at.

Open Original Shared Link

[jenkay]

Thanks for the info,

I have a significant number of items on this list and have been tested for lyme several times and have had western blot which was negative. It is so difficult when there is so much cross over between these diseases.

[Lisa]

Welcome Jen,

Migraines can be a common symptom for Celiac, gluten intolerance or allergy. There is bountiful information on this site. Take a walk around and if we can help you in any way, let us know.

This is the panel that you doctor should have ordered:

Anti-gliadin antibodies (AGA) both IgA and IgG

Anti-endomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTG) - IgA

Total IgA level.

Hope you get some answers.

[CarlaB]

Thanks for the info,

I have a significant number of items on this list and have been tested for lyme several times and have had western blot which was negative. It is so difficult when there is so much cross over between these diseases.

If you had just regular Lyme testing at a regular lab, it was not adequate. Regular labs leave out critical bands due to a Lyme vaccine that was temporarily on the market.

Complicating it all, the CDC's tracking standards are used for diagnostic purposes even though the CDC says they shouldn't be.

Also, the IDSA was recently investigated by the CT attorney general for anti-trust violations with their Lyme diagnosis and treatment guidelines which all the docs refer to. Those guidelines have not yet been rewritten.

On top of all this, Lyme is a clinical diagnosis based on symptoms supported by testing .... it is NOT supposed to be based on a test result.

I would encourage you to read through the thread. There are a lot of good links and other info there.

[jenkay]

Thanks again for the info. I went to my gp this moring and he did a celiac and lyme test. I asked about the lyme test being neg and the possibility of still having lyme and he said it is possible but unlikely. He was very willing to give me a script for three weeks of an antibiotic used to treat lyme (script is hard to read but... Doxycyclin or something like that) which I took but will wait to fill.

He was kidding around with me saying, "Jen you have lupus not lyme" I said yeah I know but I've been sick for 4 year and only get worse. Say I had lyme this whole time, whould taking this antibiotic for 3 weeks really help things????

Jen

[CarlaB]

No, Jen, three weeks, if it's Lyme, will do nothing but make you feel worse. Lyme is much more complicated than three weeks of abx and doctors underestimate how severe it can be.

Check out more of the Lyme thread.

Also, check this out. www.underourskin.com

BTW, I was bedridden by Lyme, which was undiagnosed for years. My doctor told me I had adrenal fatigue and leaky gut .... and the rest was psychosomatic.

[jenkay]

I do have the name of an LLMD in NY, I'm guessing this is my only way of finding out about a lyme dx???

[CarlaB]

I do have the name of an LLMD in NY, I'm guessing this is my only way of finding out about a lyme dx???

Pretty much, yes.

[mslee]

Hello,

My first post here, I'm Jen from upstate NY. Dx with Systemic Lupus three year ago and Sjogrens this past may. I also have Raynauds and many other lupus related issues including severe complicate migraines that sometimes cross over to seizure type events.

Being tested for Celiac today. What led me to the celiac test is I had my first seizure event of the season this past Tuesday after not having one for three months. Same pattern the past 3-4 years. I get migraines year round 10-20 a month but only get the complicated kind in the fall, winter and spring, so what is the trigger?

I found a site that mentioned daylight hour changes and low serotonin due to celiac. Made a lot of sense and would explain a lot of other symptoms such as muscle weakness in legs, etc. I really don't have significant gut issues but the gut does feel 'clean' when I sometimes take bread out of the diet.

Anyway, I'm so curious to get the initial labs back.

Would be interested in any feedback you have, may try the gluten free thing regardless of the labs.

Jen

Hi Jen Welcome!

I am fairly new here too, they DX me with SLE Lupus a few years ago I kept getting sicker and sicker.

They just found the Celiac since going on the Gluten Free diet I am feeling SO much better. It's amazing! Defiantly worth considering, remember the blood tests are not always accurate.

I am still in the process of getting a correct DX at this point I don't know if they mis diagnosed me with Lupus or if I have both, I have more Dr apts over the next couple weeks to find out.

Just wanted to say Hi and welcome...apparently if you have one autoimmune disease it is very common to have others.

I just found this website may provide some insight

Open Original Shared Link

Open Original Shared Link

[Gemini]

Hi Jen Welcome!

I am fairly new here too, they DX me with SLE Lupus about 5 years ago I kept getting sicker and sicker.

They just found the Celiac since going on the Gluten Free diet I am feeling SO much better. It's amazing! Defiantly worth considering, remember the blood tests are not always accurate.

I am still in the process of getting a correct DX at this point I don't know if they mis diagnosed me with Lupus or if I have both, I have more Dr apts over the next couple weeks to find out.

Just wanted to say Hi and welcome...apparently if you have one autoimmune disease it is very common to have others.

I just found this website may provide some insight

Open Original Shared Link

That's very insightful of you to question the lupus diagnosis after discovering your celiac disease. So many docotrs get this wrong and it's partly due to the fact that Celiac overlaps so many other symptoms for other diseases.

My 22 year old niece tested neagative via blood work for celiac disease, even though her aunt (me) has celiac disease and she has many of the symproms I had before going gluten-free. Of course, they told her she does not have celiac disease....period. Then they did other autoimmune testing on her and told her they thought it PROBABLY was lupus but never seemed to give a definitive answer. When I looked at her blood work, I noticed she had tested positive for Sjogren's, which I also have. You know what the doctor's told her.....nothing. I told my sister (her mother) that she has Sjogren's and I got the rapid blinking for a response. My sister called the doctor and their response was she did not have Sjogren's and this test was a false positive because of the lupus! My niece has many of the symptoms and problems that go hand in hand with Sjogren's so I told my sister the doctor's were wrong and she does indeed have Sjogren's. When my sister then told the doctor I had tested positive for Sjogren's, all of a sudden they recognized she had Sjogren's.

Moral of the story.....when it comes to autoimmune problems, many overlap with symptoms and trying to get any kind of correct diagnosis can become difficult. You have to go with your gut instinct and whether or not you are having symptoms. Having celiac disease can affect other tests and create false positive's so sometimes the medical profession discount the test when you do indeed have that problem. It's mind boggling sometimes. You may want to wait until you are gluten-free for awhile and see if that doesn't calm things down a bit so you can get more accurate testing results. I wish you luck

with it all!

[mslee]

That's very insightful of you to question the lupus diagnosis after discovering your celiac disease. So many docotrs get this wrong and it's partly due to the fact that Celiac overlaps so many other symptoms for other diseases.

My 22 year old niece tested neagative via blood work for celiac disease, even though her aunt (me) has celiac disease and she has many of the symproms I had before going gluten-free. Of course, they told her she does not have celiac disease....period. Then they did other autoimmune testing on her and told her they thought it PROBABLY was lupus but never seemed to give a definitive answer. When I looked at her blood work, I noticed she had tested positive for Sjogren's, which I also have. You know what the doctor's told her.....nothing. I told my sister (her mother) that she has Sjogren's and I got the rapid blinking for a response. My sister called the doctor and their response was she did not have Sjogren's and this test was a false positive because of the lupus! My niece has many of the symptoms and problems that go hand in hand with Sjogren's so I told my sister the doctor's were wrong and she does indeed have Sjogren's. When my sister then told the doctor I had tested positive for Sjogren's, all of a sudden they recognized she had Sjogren's.

Moral of the story.....when it comes to autoimmune problems, many overlap with symptoms and trying to get any kind of correct diagnosis can become difficult. You have to go with your gut instinct and whether or not you are having symptoms. Having celiac disease can affect other tests and create false positive's so sometimes the medical profession discount the test when you do indeed have that problem. It's mind boggling sometimes. You may want to wait until you are gluten-free for awhile and see if that doesn't calm things down a bit so you can get more accurate testing results. I wish you luck

with it all!

Thank You!

It is all very confusing, and it does take time...I'm trying to be patient

So many possibilities!

I should have them check for Sjogren's as well

Good Luck to you and your Niece

[jenkay]

Thank you all for the information. I'm very interested in the test reusults but I think it will be a week or two. I'm trying to be gluten free as of yesterday.

I'm I right in that the blood work is only an indicator and you need to have the biopsy to dx? If the blood work is possitive that is enought for me to try the diet as I guess a lot of folks with lupus my not have celiac but are still gluten sensitve.

Again, thanks and nice to meet you all.

Jen

[mslee]

Hey just an Update I saw my GI today;

He says the Lupus, Sjorgrens, and now they believe I also have Autoimmune Hepatitis are all autoimmune complications brought on by the Celiac being left untreated.

I have a Liver Biopsy, Rheumatologist apt, and more test results next week.

Oh also got my Celiac panel back, it was positive ...even after a couple months gluten free

He said my dairy intolerance should be temporary, until my body heals itself and can digest properly again.

From what I understand they call the Biopsy the "Gold Standard" diagnosis, I'm not sure if both blood and biopsies are needed. I found it strange he ran the Celiac panel after the biopsies and diet change but I don't think he expected to find Celiac during the colonoscopy...but they did, lucky me!

Really, Lucky me!

[Gemini]

Hey just an Update I saw my GI today;

He says the Lupus, Sjorgrens, and now they believe I also have Autoimmune Hepatitis are all autoimmune complications brought on by the Celiac being left untreated.

I have a Liver Biopsy, Rheumatologist apt, and more test results next week.

Oh also got my Celiac panel back, it was positive ...even after a couple months gluten free

He said my dairy intolerance should be temporary, until my body heals itself and can digest properly again.

From what I understand they call the Biopsy the "Gold Standard" diagnosis, I'm not sure if both blood and biopsies are needed. I found it strange he ran the Celiac panel after the biopsies and diet change but I don't think he expected to find Celiac during the colonoscopy...but they did, lucky me!

Really, Lucky me!

Yup.....you will acquire more autoimmune disease the longer you go without a diagnosis! I have 3 myself, besides the celiac disease but am doing just fine on the diet. Couldn't believe how many symptoms I had for years that went away after being gluten-free for awhile.

I am a bit confused, though......Celiac Disease cannot be diagnosed with a colonoscopy. It's the endoscopy that they use for viewing the small intestine. Was this what you had?

FYI...I was diagnosed with blood work alone and I had already gone gluten-free by a week. The numbers were very high, on all tests, so my doctor told me the endo would not be necessary, unless I wanted one. I was very sick at the time and had trouble keeping anything down so the thought of them shoving a garden hose down my throat made me skeeve. I assume I have healed because I am now at a normal weight for the first time in my life and am completely asymptomatic.

Yes, you are indeed lucky! Being told it was all in your head for years was only making me angry and sicker.

I just wish I could go back to those idiots who said that and shove my test results "you know where"!

[mslee]

oh yes they did a colonoscopy and an endoscopy at the same time, they also found colitis so I'm glad they did it.

My husband thought it was going to be unnecessary and I was putting myself through un due stress but I told him I thought it would give me answers I needed, and so far it has.

The years of guessing and being doubted were horrible, there are still skeptics in my family...skeptical that is possible they could have it too

"honey if I wanted to feel better I would quit smoking and drinking".... they have no idea how sick I have been and the effects it has had on my life.

Thank goodness to finally have some unquestionable answers!!!

[Gemini]

oh yes they did a colonoscopy and an endoscopy at the same time, they also found colitis so I'm glad they did it.

My husband thought it was going to be unnecessary and I was putting myself through un due stress but I told him I thought it would give me answers I needed, and so far it has.

The years of guessing and being doubted were horrible, there are still skeptics in my family...skeptical that is possible they could have it too

"honey if I wanted to feel better I would quit smoking and drinking".... they have no idea how sick I have been and the effects it has had on my life.

Thank goodness to finally have some unquestionable answers!!!

That is the biggest problem for a Celiac.....family denial. If you all could see my parents and siblings and how some of them look like text book Celiacs plus all the autoimmune problems related to celiac disease, it would make your head spin. I think they all have it, to some degree. My mother behaves like I am accusing her of passing on a disgusting disease (THAT'S NOT FROM MY FAMILY SIDE!) even though I have a double DQ2, which means I am the lucky recipient of having celiac disease on both sides of the family. She is currently sick with night time bouts of the Big D, as a Celiac would, and WILL NOT go gluten-free and WILL NOT admit she has it. She will probably die from complications as she is 76 years old and that is truly a sad thing. What really hurts though is having the door slammed in your face when you are only trying to help!

This diagnosis for me has made me somewhat estranged from the rest of the family, except for my younger sister. She is the only one who has listened and it's because her daughter had massive problems with behavior and GI problems. Since she and her daughter have gone gluten-free, things have vastly improved and they didn't get an official diagnosis.

Keep up the good work because having your health is THE most important thing in life.

[mslee]

Yes!!!

Most simply dismiss it, luckily my Mom and Sister seem to be interested which is good because I don't doubt for a second they have it. They have struggled with terrible allergies all their lives, it was always strange I never really had any until this.

Well I had been looking forward to my 1st apt with my Rhuematologist since my Celiac Dx tomorrow...

got home today and there was a message from them saying there had been some confusion with my insurance and they went ahead and canceled my apt until it could be straightened out.

I was pretty sure it was time for a new Doc anyways, this one didn't seem too familiar with Lupus, who knows about celiac.

So the question remains.....

Does Celiac cause Lupus?

From what I have read there is always a trigger for Lupus I''m guess the trigger could be Gluten???

Will post what my Dr. says...once I get in

Goodnight, thanks for the kind words and info!