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Other Autoimmune Disorders

Lauriann

By Lauriann
in Related Issues & Disorders

Recommended Posts

Lauriann Rookie
Lauriann
Posted

hi everyone..its been a while since i have visited this site. But i was wondering if anyone else suffers from other disorders. I was just diagnosed with Lups and Sjogren Syndrome and Raynauds on top of having Celiac. I feel like my body is being put through the ringer. I can even begin to tell people how sick i feel everyday...but i was wondering if other people are also effected with disorders..

thanks...Lauri

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Mother of Jibril Enthusiast
Mother of Jibril
Posted

Hi Lauri,

You're definitely not alone... here's another thread about this topic:

https://www.celiac.com/gluten-free/index.ph...c=54932&hl=

flourgirl Apprentice
flourgirl
Posted

Hi Lauriann. You definitely are not alone here. Many have other autoimmune disorders, they seem to travel in groups (like preditors trying to wear you down). I have Raynauds as well. I was recently tested for Sjogrens. My blood test was negative, but I have all of the symptoms. The Rhuemy doc thought I had it in spite of the bloodwork. I passed on doing a lip biopsy or eye test, simply because it would be a waste of time and money. There doesn't seem to be much you can do for it anyway. (I can't have Prednisone or it's cousins because of allergy). My ANA was still quite elevated...which according to the Rhuemy doc. just indicates autoimmune disorders. She kind of threw up her hands because she is not up on Celiac, and felt she had no help to offer. I'm at the end of my rope with doctors overall at this point. Her advice was......you need to learn to sleep at night and then you'll feel better.

Anyway, I hope you find your answers. My mother (who denies that she could have Celiac) also has Lupus, IBS, Arthritis, Fibromyalgia, on and on. I guess for her it's just one more thing. Her health history puts fear in my heart! But she deals.....so I deal....so we all learn to deal. Good luck and good health!

cyberprof Enthusiast
cyberprof
Posted
hi everyone..its been a while since i have visited this site. But i was wondering if anyone else suffers from other disorders. I was just diagnosed with Lups and Sjogren Syndrome and Raynauds on top of having Celiac. I feel like my body is being put through the ringer. I can even begin to tell people how sick i feel everyday...but i was wondering if other people are also effected with disorders..

thanks...Lauri

I've had symptoms of Sjogren's for about 6 months now and Reynauds symptoms for a few years that come and go. I have not been tested for either. The Reynaud's seemed to get better going gluten-free. The Sjogren's seemed to come after going gluten-free, but now the symptoms are much less than a few months ago.

My theory is that gluten aggravates the other immune system responses, and going gluten-free may help if you haven't had a lot of damage done already. How long have you been gluten-free? I hope it gets better for you.

One thing my eye doctor told me is to take Flax Oil for the dry eyes and it has really helped. I had been taking a lot of fish oil, but he said that doesn't help, try Flax. So I did and noticed a difference! Take the recommended dose of Flax daily for six weeks, then you can take 4-6 weeks off and start again. Try that. I use Nature Made brand Flax oil that I get at Costco.

Good luck Lauriann (from a Laura Ann)

~Laura

mslee Apprentice
mslee
Posted

Hi Lauri!

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

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

anyways here if you have questions or need to talk :)

good luck!

nasalady Contributor
nasalady
Posted
hi everyone..its been a while since i have visited this site. But i was wondering if anyone else suffers from other disorders. I was just diagnosed with Lups and Sjogren Syndrome and Raynauds on top of having Celiac. I feel like my body is being put through the ringer. I can even begin to tell people how sick i feel everyday...but i was wondering if other people are also effected with disorders..

thanks...Lauri

Hi Lauri,

As the others said, if you have one, you are MUCH more likely to develop more autoimmune diseases. I have 6 that I know about: Hashimoto's, asthma, psoriasis, autoimmune hepatitis, rheumatoid arthritis, and celiac disease. I may have Sjogren's Syndrome (I have all of the symptoms and it's associated with RA and autoimmune hep).

Some of the recent theories indicate that celiac disease is literally the mother of all other autoimmune diseases. It works like this: you have celiac disease, maybe from babyhood. Celiac disease causes your intestines to literally leak stuff into your bloodstream that shouldn't ever be there, like viruses, bacteria, even foreign substances like gluten, etc. This puts your immune system into overdrive, it starts attacking everything in sight, including your own organs. Bingo! You have multiple autoimmune diseases.

OK so I simplified it a little. But that's basically what this medical abstract by Dr. Fasano says:

Open Original Shared Link

Hope this helps....good luck with everything!!

JoAnn

1morething Explorer
1morething
Posted

I have diabetes and thyroide disease for 27 years now. Last November my Dr. decided to test me for Celiac. Well guess what....another nail in my coffin.... Makes me wonder what else is in store for me with these auto-immune diseases. Why is my body shutting me down....

Oh well, "Live, Love, Laugh" as much and as long as you can...

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chatycady Explorer
chatycady
Posted

Me too. Pernicious anemia, liver trouble. But I'm not giving up. I really believe that if I fix my gut and get it back to normal, I can stop the cycle.

I read somewhere that the autoimmune system is fed through the gut. If the gut is messed up the immune system goes haywire.

Don't ya like my big medical terms!

Alison Rookie
Alison
Posted

My mom had polymyalgia rheumatica, an inflammatory muscle disorder (different than fibromyalgia). She tested negative for celiac, but went gluten-free with me the day I got my celiac diagnosis. She no longer has any pain from polymyalgia like she did before and no longer takes any medication for it, unless she has gluten -- then the symptoms come back!

  • 6 months later...
NeanOf9 Newbie
NeanOf9
Posted
hi everyone..its been a while since i have visited this site. But i was wondering if anyone else suffers from other disorders. I was just diagnosed with Lups and Sjogren Syndrome and Raynauds on top of having Celiac. I feel like my body is being put through the ringer. I can even begin to tell people how sick i feel everyday...but i was wondering if other people are also effected with disorders..

thanks...Lauri

ann72601 Apprentice
ann72601
Posted
hi everyone..its been a while since i have visited this site. But i was wondering if anyone else suffers from other disorders. I was just diagnosed with Lups and Sjogren Syndrome and Raynauds on top of having Celiac. I feel like my body is being put through the ringer. I can even begin to tell people how sick i feel everyday...but i was wondering if other people are also effected with disorders..

thanks...Lauri

ann72601 Apprentice
ann72601
Posted
hi everyone..its been a while since i have visited this site. But i was wondering if anyone else suffers from other disorders. I was just diagnosed with Lups and Sjogren Syndrome and Raynauds on top of having Celiac. I feel like my body is being put through the ringer. I can even begin to tell people how sick i feel everyday...but i was wondering if other people are also effected with disorders..

thanks...Lauri

I sound like everyone else here with a garden variety of illnesses on top of illnesses too depressing to put in print. I have been doing the GAPS diet for almost 3 months and very slowly starting to make a bit of progress. I was told to think in terms of years, not months and it's proving to be true.

The diet addresses many illnesses and it's aim is to heal the gut. While it's doing that, most other ailments begin to improve. It explains the gut/brain connection to the entire body. It's called GAPS for two reasons, for those of us who fall through the gaps and the title is actually the Gut and Psychology Syndrome written originally as a diet for those who were not able to do the SCD diet, which was based on the work of Dr. Haas who found the original 'cure' for celiac. It's the only thing that's made sense and takes some time to really absorb the content but well worth the read. There's a website: www.gapsdiet.com. I also found a site that has menu-planning for GAPS. www.heartofcooking.com.

I went to the doctor today and learned that my bloodwork has improved in every respect. My blood pressure was down for the first time since January to 124/72!! It's not all wonderful, believe me. I haven't been able to leave the house without an escort since July but I can now see that it can happen one day. Keep looking for answers and don't give up. It's basically a 2+ year plan and take dedication but for some of us, what ARE our options???

I wish you well.

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      Thank you all for your advice and the dermatitis herpetiformis article. The latter made me realise I had stopped taking my antihistamine, which I will restart today. The Dapsone has cleared the rash entirely but I still get quite a bit itching, absolutely nothing to see though. I know its notoriously hard to clear and its still relatively early days for me.  The iodine issue is very interesting. I do eat quite a bit of salt because I have Addison's disease and sodium retention is an issue. I also have autoimmune hypothyroidism, not sure how a low iodine diet would play into that? Because of my Addison's I am totally steroid dependent, I take steroids 4 x daily and cannot mount any defence against inflammation. I need to increase my meds for that. Now that I know what is wrong I can do just that if Im having a bad day. Life is very sweet, just so damn complicated sometimes! Hey ho, onwards. Thank you again for your advice.  
    • trents
      how much gluten do I need to eat before blood tests?

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    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

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    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
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