Sjogren's, Celiac, or both?

[Eggs]

Hi! This is my first post here. I'm wondering if anyone else has had a similar experience.

I'm in the diagnostic process for Sjogren's, which my rheumatologist is very sure that I have even though my dryness symptoms are very mild. (I am positive for SSA, the autoantibody associated with Sjogren's.) 

The symptoms I initially went to my GP with are:

fatigue, hair loss, irregular menstrual cycle (very unusual for me), headaches (migraines, almost daily), elevated temperature, weight loss

My GP did not do the blood test for Celiac disease. She opted not to because when she asked me if I had loose stool, I said "No, actually, I've been constipated every day for the last 10 years." She said, "Ok, no Celiac then."  ????????

During the diagnostic process, I also lost a pregnancy. 

When I eliminated gluten because of recommendations from the Sjogren's Foundation website, almost all of my symptoms disappeared. I still have the hair loss, but no headaches, fatigue is better, cycle is regular, and I'm back to my normal weight. Even my temperature is closer to my norm. I feel like an entirely new person. I still sometimes have mild dryness symptoms but nothing that would have prompted me to go to the doctor without the other symptoms.

Should I make an appointment with my rheumatologist and try to get tested for Celiac disease? Has anyone had a similar experience? And how hard do you think it will be to get tested? (Like most doctors I've worked with, my rheumatologist likes to be the one who makes the suggestions.)

Thanks for any input!

Kristen

[cyclinglady]

Welcome!  Unfortunately, you would have to go back on gluten to get tested (8 to 12 weeks for the blood test and 2 to 4 weeks for the endoscopy).  Here are the tests:

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I am sorry that your doctor is so mis-informed! There are over 300 symptoms attributed to celiac disease and some celiacs are considered "silent" with no symptoms at all!  I personally was anemic and had no tummy issues that I was aware of at the time of my diagnosis.  

There are other forum members who have Sjogren's who might have some good advice (@Gemini).  

I wish you well!  

[ravenu5]

I'm still new to the board too and even though my blood test and symptoms are suggestive of Celiac I am still waiting on my appt with GI. 

For my symptoms however, the only time I got diarrhea was after I did a gluten-free diet for 3 weeks to see if it would make me feel better, then going back on gluten.  I had horrible diarrhea for the first week back on gluten.  Then it was back to horrible constipation, which is what I had before going gluten-free.  

My symptoms include constipation which nothing seems to help (regular miralax, stool softners, separate and together), sore and tender upper abdomen, lower abdominal cramping, excessive fatigue and I'm sure there are a million others I could list! But those are the most predominate.

Hopefully you can talk your dr into at least some blood tests or perhaps get a second opinion.  

[Gemini]

Yes, you absolutely need to be tested for Celiac!  Sjogren's seems to be another close friend to Celiac, unfortunately, and if your SSA was positive, then you have Sjogren's. I have both diseases and found myself that my Sjogren's symptoms calmed down once I had been gluten-free for awhile.  I still have moderate symptoms but they were almost unbearable pre-Celiac diagnosis.  The fact that your symptoms greatly improved on the gluten-free diet speaks volumes and should be looked into.

I am terribly sorry about your miscarriage. That has got to be so tough to deal with. Miscarriage is another problem that can occur with Celiac because of the vitamin deficiencies and other reasons.  It is very important for you to rule Celiac either in or out if you want to try and have children. Good luck and if you have any questions, feel free to ask away!

[Eggs]

Thanks for the input!

cyclinglady - I've been trying not to be mad at my GP for ruling out Celiac at a time when I didn't know any better, but now I'm PO'd! Going back on gluten is going to suck. I was accidentally exposed last week, and I didn't go to the bathroom for two days, had my first headache in months, and wanted to sleep all day. Eight to 12 weeks sounds awful! I wish she would have done that test when she was taking blood by the pint for all sorts of stuff I didn't have. Blerg.

ravenu5 - Thanks for sharing about your constipation. I didn't know how normal it was to not have diarrhea. But my constipation was also basically untreatable by normal means. I used to laugh when people suggested prunes. I could have probably eaten them by the bucket (though the most I ever tried at once was a dozen or so). I was so shocked when I started going to the bathroom regularly after eliminating gluten. The last time going to the bathroom wasn't an issue for me was when I was a kid!

Gemini - It's nice to hear from someone else with Sjogren's! I haven't met anyone else in real life with Sjogren's, and I've never posted on a forum before. And thank you for being sorry about my miscarriage. It super-duper sucked. The miscarriage drove me to a third rheumatologist because I felt like I needed to know what was wrong with me. With two healthy, full-term pregnancies in the last five years and no history of problems, my risk of miscarriage was low, and I felt like the timing (all these new symptoms and the miscarriage) probably wasn't a coincidence. (But my kids have been a huge comfort. My youngest turned a year old the day after the miscarriage, and I feel so terrible for anyone who has to go through a miscarriage without a baby to cuddle. I don't know how it's done!)

The first two rheumatologists I went to after my positive ANA and SSA said I didn't have Sjogren's! (Is there a space on this forum for doctor rants?)

Anyway,

Thank you so much for sharing with me. It's really nice to hear other voices on these things.

 

[Fenrir]

Everything you listed above very well could be Celiac Disease and not Sjogren's, but people with one autoimmune disease are at a higher risk of getting another one. 

Your GP clearly is working with old knowledge in regard to Celiac Disease. There are probably more people who suffer from constipation from Celiac than loose stools. I know for me I never had diarrhea at all, but I was backed up something fierce. 

I also had swollen joints, headaches, abdominal pain, memory issues, high liver enzymes, fatigue and general cloudy head.  Not many of these are symptoms an uninformed Doctor would think to associate with Celiac. 

You really have to show up prepared to be your own advocate, tell the doctor that according to many of the GI specialists who work with Celiacs (see University of Chicago's celiac disease Center) these are all symptoms that warrant a proper workup for celiac disease. 

It took me 6 months, two biopsies and an unneeded surgery to get diagnosed and that isn't as bad as some. 

[cyclinglady]

Well, you do not HAVE to get tested, but since Celiac Disease is genetic and you have kiddos, you should seriously consider the pros and cons.

Take for instance, my hubby.  He went gluten-free over 15 years ago per the very poor advice of his GP and my allergist.  "Try giving up wheat and see how you feel."  Well, it worked.  No more sinus infections, feeling achy like he had the flu, etc.  He seriously struggled the first year without a proper diagnosis, but eventually good health became more important than rye bread.  Twelve years later, I was anemic (well I have been all my life)  and went for a routine colonsocopy because all my friends were getting them (the perks of the over 50 club).  During my GI consult he recommended getting scoped at both ends because he suspected celiac disease.  I could not believe it!  But blood tests and my biopsies proved that I had celiac disease.  

Hubby will be the first to say that I have had more medical, family and friend support with a formal diagnosis.  He refuses to do a gluten challenge.  His mom was diagnosed with MS and literally died from malnutrition, so we suspect she had celiac disease.  He definitely has a problem with gluten.   Thankfully, my dx has allowed for my daughter to be tested every few years (even without symptoms).  She does not have celiac disease or any other autoimmune disorder yet.  I say yet, because the gene pool for AI issues is huge on both sides.  Good news is that cancer is rare but you never know.  

So, this is a decision you will have to make.  An endoscopy requires a much shorter challenge.  Something to consider.  Gene testing too will help rule out celiac disease and might be the first thing to consider as you do not have to be on gluten for that.  

I wish you well! 

[cyclinglady]

4 minutes ago, Fenrir said:

Everything you listed above very well could be Celiac Disease and not Sjogren's, but people with one autoimmune disease are at a higher risk of getting another one. 

Your GP clearly is working with old knowledge in regard to Celiac Disease. There are probably more people who suffer from constipation from Celiac than loose stools. I know for me I never had diarrhea at all, but I was backed up something fierce. 

I also had swollen joints, headaches, abdominal pain, memory issues, high liver enzymes, fatigue and general cloudy head.  Not many of these are symptoms an uninformed Doctor would think to associate with Celiac. 

You really have to show up prepared to be your own advocate, tell the doctor that according to many of the GI specialists who work with Celiacs (see University of Chicago's celiac disease Center) these are all symptoms that warrant a proper workup for celiac disease. 

It took me 6 months, two biopsies and an unneeded surgery to get diagnosed and that isn't as bad as some. 

Hey, happy to see your posting, Fenrir.  I hope you are doing well!  

[Fenrir]

2 minutes ago, cyclinglady said:

Hey, happy to see your posting, Fenrir.  I hope you are doing well!  

Doing great! Been gluten-free for two years, now. No symptoms, antibodies are almost nil and certainly where they should be. Been glutened really bad twice (ate 4 slices of bread I thought was gluten-free once, and ate pasta I thought was gluten-free once) was in bed for three days each time and felt like crap for a couple of weeks. Learning experiences, not done that in quite a while. 

[Eggs]

Fenrir, I'm so sorry to hear about your diagnostic process! That sounds pretty traumatic. Thanks for the input. I'll check out that info and maybe bring it with me to my next appointment. Is this something I can bug my rheumatologist and my GP about? Either of them could write a script for the blood test, right?

Thanks for the info, cyclinglady. As much as I hate the idea of experiencing a flare up of symptoms, I do think I'm going to pursue a diagnosis. You make a good point about the kids! And I've actually suspected that something might be going on with my youngest. He's very small for his age (at 18 months he's often mistaken for a 12 month old) and irritable beyond what anyone we know thinks is normal for a fussy baby. His hemoglobin always tests ok, but they haven't checked anything else (which I understand because I know that he could just be short and really, really fussy). I don't know if children that young are ever affected, but it would be nice to rule out Celiac because now I'm worried about it. (I'm glad that your daughter has had good health and hope it continues!)

As far as going back on gluten for the test, I would like to get the blood test over with as quickly as possible, especially since my husband is a teacher and has a lighter schedule right now. It usually takes me a while to get an appointment with my rheumatologist. Is there any downside to going back on gluten now and scheduling an appointment 8-10 weeks from now? I'm scared that no one will agree to test me, but I've seen such dramatic improvement in my symptoms that I almost can't imagine it being a problem!

[Gemini]

On 5/5/2016 at 8:47 PM, Eggs said:

Gemini - It's nice to hear from someone else with Sjogren's! I haven't met anyone else in real life with Sjogren's, and I've never posted on a forum before. And thank you for being sorry about my miscarriage. It super-duper sucked. The miscarriage drove me to a third rheumatologist because I felt like I needed to know what was wrong with me. With two healthy, full-term pregnancies in the last five years and no history of problems, my risk of miscarriage was low, and I felt like the timing (all these new symptoms and the miscarriage) probably wasn't a coincidence. (But my kids have been a huge comfort. My youngest turned a year old the day after the miscarriage, and I feel so terrible for anyone who has to go through a miscarriage without a baby to cuddle. I don't know how it's done!)

The first two rheumatologists I went to after my positive ANA and SSA said I didn't have Sjogren's! (Is there a space on this forum for doctor rants?)

Anyway,

Thank you so much for sharing with me. It's really nice to hear other voices on these things.

 

You probably don't know any others with Sjogren's because doctors suck so badly at diagnosing it!    Symptoms that stem from Sjogren's usually do get better on the gluten-free diet, so that is why doctors become confused.  There is so much symptom overlap with AI disease, patients usually can figure it out before their doctors do, by tracking symptoms. I knew I had it long before any doctor tested me but my symptoms are classic for Sjogren's, along with all the dental problems that occur with dry mouth.  We won't go into how messed up my eyes are, especially during allergy season.  I will say that post gluten-free and with the use of Restasis eye drops, things have improved dramatically for the better but I still have my days where the pollen and mold prove to much and my eyes hurt.  But please get tested properly for Celiac because it's important...those 2 diseases seem to like each other and occur frequently together.  My older sister and niece also have Sjogren's so it's a party in my family.......

[Willgetthruthis]

Hi, I am so happy I found this! I was diagnosed with Sjogrens at age 28. Fir years, my symptoms we're very mild. Something changed last year, though. Last year (I'm almost 40 now)  I began to experience a slurry of awful symptoms that appeared after eating wheat of any kind. Symptoms include crazily varied things from extreme insomnia, depression, sensitivity to caffeine, weight loss, gastritis, pain in my side, low fever 99-100° that wouldn't subside, awful tremors (intentional mostly), severe joint and leg pain, severe anxiety, headaches and neck pain,  Raynaud's, joint swelling in finger joints, dry eyes, peripheral neuropathy, constipation and diarrhea alternating,  weird heavy feelings in legs, restless leg syndrome, tinnitus and ear pain,   as well as Geographic tongue, burning and itching tongue,lips,  hands, and feet after eating,  among other things. I had Sjogrens for so long with minimal symptoms that I was terrified it was cancer, Ms, etc... Hence, I went to a bunch of specialists through a bunch of diagnostic testing (MRI, 24 urine test, CT scan, x-rays, endoscopy, blood and other urine tests) and my gastroenterologist said they were confident I also have Celiacs! I had quit eating wheat and refused to start eating it again for the so called "Food Challenge" in order to get a 100° accurate diagnosis,  but my gastroenterologist is positive I have it and accepted that I didn't want to have to live through that misery ever again. So, I quit all grain and I slowly began to recover, even gaining weight. However, I introduced other grains back into my diet recently and boom! All of my symptoms came back, argh. I have learned the hard way that I cannot eat ANY grain except, oddly, tapioca. Anyway, I wanted to warn you even though this is an old post so I might save you some misery. Celiacs and other immune system disorders are very specific for each person meaning people can have very little in the ways of symptoms or can be a wreck like I have been when eating grain but I just wanted to give you a heads up :-).  Anyway, thanks for your post! Knowing someone else who is experiencing these multiple immune system disorders has made me feel less alone. I am so sorry that you too are going through this misery, though! I do know that avoiding grain helped me to the point that I became a bit lax and  sloppy ( meaning I began to eat "gluten free" prepared foods like "bread" without gluten to fake Mac and cheese,  I paid hard for it.)

I have found the same thing you have- that we CAN  heal once we avoid a few things - the immune system aggravating substance which can be just wheat or wheat, milk products, other grains, etc..., as well as doing good self care, so meditation, anti depressants when necessary, exercise, sleep (another reason I had to go back onto antidepressants- my insomnia is horrible without them, I have become very despondent over these diseases) and basically giving oneself the permission to take a break if needed without guilt as Sjogrens can flare without any logic. But avoiding grain definitely helps one avoid frequent flares, I have found. I am so tired of these illnesses but thank God it wasn't something worse. I'm trying to keep perspective, lol. Anyway, hope you are doing well and thanks so much for sharing your experience. We are all in this together! ?? 

PS If anyone else has advice, please let me know! Especially about the darn tinnitus and joint pain. It drives me crazy! ?

[Willgetthruthis]

On 5/9/2016 at 9:38 AM, Gemini said:

You probably don't know any others with Sjogren's because doctors suck so badly at diagnosing it!    Symptoms that stem from Sjogren's usually do get better on the gluten-free diet, so that is why doctors become confused.  There is so much symptom overlap with AI disease, patients usually can figure it out before their doctors do, by tracking symptoms. I knew I had it long before any doctor tested me but my symptoms are classic for Sjogren's, along with all the dental problems that occur with dry mouth.  We won't go into how messed up my eyes are, especially during allergy season.  I will say that post gluten-free and with the use of Restasis eye drops, things have improved dramatically for the better but I still have my days where the pollen and mold prove to much and my eyes hurt.  But please get tested properly for Celiac because it's important...those 2 diseases seem to like each other and occur frequently together.  My older sister and niece also have Sjogren's so it's a party in my family.......

I'm curious about your eye issues? I have horrible eye problems in relation to allergies (I think?) With my whole eyeball swelling, turning red and painful, as well as burning awfully during allergy season. Is that also partly Sjogrens? Thanks, S. 

[Gemini]

16 minutes ago, Willgetthruthis said:

I'm curious about your eye issues? I have horrible eye problems in relation to allergies (I think?) With my whole eyeball swelling, turning red and painful, as well as burning awfully during allergy season. Is that also partly Sjogrens? Thanks, S. 

Yes, I would definitely say you have "in your face" Sjogren's symptoms!    My eyes are the worst but not everyday.  When exposed to outside molds during allergy season, they become very red and somewhat irritated.  I use OTC moisture drops and Rx Restasis.....which you may want to give a try because it has helped me quite a bit.  The problem will always be there but you can mitigate symptoms by hydrating the eyes often with drops and trying Restasis.  It doesn't help everyone but I always say to give it a whirl because you never know.

When you have Sjogren's and have very dry eyes, you cannot wash away allergens that end up in your eyes on bad allergy days.  You have to do it manually, with drops.  Allergens are the worst triggers for it.  I went on vacation to England in May and had the pleasure of the "change of environment" improvement.  Their vegetation and mold are different strains than in North America so I was not reacting to them. My eyes felt great and they were not red in any way. I had forgotten what that was like. It was also humid and that helped to moisturize my eyes without the reaction to mold.  At home, entirely different story.  We have had a fair amount of rain here this year, which makes everything look beautiful and lush. But my eyes are not liking the mold. Sometimes I feel I cannot win, ever. But I stay inside air conditioned home and work on the bad days. People wonder why I love winter so much........