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Lupus Or Other Immune Disorder Where

debmidge

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debmidge Rising Star
debmidge
Posted

anyone familar with these disorders? wondering about symptoms my husband has....

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2kids4me Contributor
2kids4me
Posted

There are numerous connective tissue disorders. Check this site out for info on them - Open Original Shared Link

The home page has link for patient information, click on that and then choose which disorder you want to look up.

The unfortunate part about immune mediated disease is that many have variable symptoms and symptoms that could go along with other disorders.

eg: late stage B12 deficiency has neurological symtoms and can look like MS

Myasthenia gravis can come and go with symptoms

Lupus has 'flares" that come and go and not everyone has the classic symptoms - for Lupus there are specific blood tests that look for ANA (Antinuclear antibodies)... the results have to evaluated carefully because anyone with a pre-existing autoimmune disorder may have positve ANA .

Celiac is of course known as the "great imitator" since symptoms can vary so widely and look like other conditions. Who would think to look at the intestine as a cause for severe migraines? My daughter has not had a migraine since we found out she was celiac and started gluten-free.

To have autoimmune conditions investigated, you will need to be refered to a knowledgable rheumatologist or internal medicine doctor. Try contacting John's Hopkins autoimmune clinic and they may be able to give you a list of doctors in your area.

Open Original Shared Link

Nancym Enthusiast
Nancym
Posted

I was recently diagnosed with ankylosing spondylitis, which explains why my joints, muscles and tendons have been hurting me since I was in my 20's.

kb8ogn Rookie
kb8ogn
Posted

I have several autoimmune diseases. I am being tested and treated for lupus although my test results have been negative. With Lupus you can test falsly on just about anything. I am also being treated for RA(in my hands mostly), Reynauds, Fibro and a severe vitamin D deficiency in addition to the Celiacs which was misdiagnosed as IBS for 3 years.

Lupus can imitate a great many of other autoimmune which is why it can take so long for a diagnosis. I am going on 5 years. I have everything but the positive ana and the butterfly rash.

I belong to another board that deals with all autoimmune diseases. I don't know if I am allowed to promote other boards here, but if I'm allowed, someone please let me know and I will post it for everyone.

Shelli

nikki-uk Enthusiast
nikki-uk
Posted

My husband has Psoriatic Arthritis.

Bloods were negative for Lupus and Rheumatoid Arthritis.

Hubbie had a small patch of psoriasis on his knee-this lead the rheumatologist to the dx.

Hubbie was dx with this 2 yrs before the dx of celiac disease,although when I think back,the stomach symptoms arose around the same time as the aching ,stiff swollen joints.

What symptoms does your husband have?

Shelli,I'd be interested in looking at your 'autoimmune' board.(I've posted links to other boards before with no probs)

ebrbetty Rising Star
ebrbetty
Posted

I have discord lupus, have had it about 5 years now

kb8ogn Rookie
kb8ogn
Posted

The other message board is aptly named, butyoudontlooksick.com

There is a wonderful story there. It is called the spoon theory. It has helped me explain my illnesses to quite a few people including my own family.

The people at the message boards are wonderful and they have illnesses ranging from celiac's to lupus to ms and so on...

There is a wealth of knowledge there about all different "invisible illnesses".

I love this site because it is very detailed about celiac, the other site is where I park my car at night if you know what I mean.

Shelli

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penguin Community Regular
penguin
Posted

The spoon theory is heartbreaking, but so true. It would be a great way to explain any chronic illness, including celiac. Thanks for the info!

nikki-uk Enthusiast
nikki-uk
Posted
The spoon theory is heartbreaking, but so true. It would be a great way to explain any chronic illness, including celiac. Thanks for the info!

Yeah,absolutely,what a great analogy.Although it's my husband that's ill,obviously I am very aware of how his illnesses have impacted on all our(me + kids) lives.

Interesting message board too,when I get more time I will have a good read through.

Thanks Shelli :)

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    • knitty kitty
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      Hello, @NanceK, I'm glad you're willing to give Benfotiamine with B Complex another go!  I'm certain you'll feel much better.   Yes, supplementation is a good idea even if you're healing and gluten free.  The gluten free diet can be low in B vitamins and other nutrients. A nutritionist can help guide you to a nutrient dense diet, but food sensitivities and food preferences can limit choices.  I can't consume fish and shellfish due to the sulfa hypersensitivity and iodine content, and dairy is out as well.  I react to casein, the protein in dairy, as well as the iodine in dairy.  My Dermatitis Herpetiformis is aggravated by iodine.   Blood tests for B vitamin levels are notoriously inaccurate.  You can have deficiency symptoms before blood levels change to show a deficiency.  I had subclinical vitamin deficiencies for years which affected my health, leading to a slow downward spiral.  Because the B vitamins are water soluble, they are easily excreted in urine if not needed.  It's better to have it and not need it than need it and not have it.   Wheat and other gluten containing grain products have vitamins and minerals added to them to replace those nutrients lost in processing.  Manufacturers add cheap vitamins that our bodies don't absorb or utilize well.  Even normal people can suffer from vitamin deficiencies.  The rise in obesity can be caused by High Calorie Malnutrition, where people eat more carbohydrate calories but don't get sufficient thiamine and B vitamins to turn the calories into energy.  The calories are stored as fat in an effort to ration out diminishing thiamine  stores.    It's time to buy your own vitamins in forms like Benfotiamine that our bodies can use well.   Not sleeping well and fatigue are symptoms of Thiamine deficiency.   I'm certain Benfotiamine with a B Complex will help you immensely.  Just don't take them at night since B vitamins provide lots of energy, you can become too energetic to sleep.  Better to take them earlier in your day.   Do keep me posted on your progress!
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      Oh wow! Thanks for this information! I’m going to try the Benfotiamine again and will also add a B-complex to my supplements. Presently, I just take sublingual B12 (methylcobalomin). Is supplementation for celiacs always necessary even though you remain gluten-free and you’re healing as shown on endoscopy? I also take D3, mag glycinate, and try to get calcium through diet. I am trying to bump up my energy level because I don’t sleep very well and feel fatigued quite often. I’m now hopeful that adding the Benfotiamine and B-complex will help. I really appreciate your explanation and advice! Thanks again Knitty Kitty!
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      Is this celiac?

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    • Trish G
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