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Autoimmune disorder

I was diagnosed with Hashimoto's disease awhile ago. I was put on 150 mg of pulse steroids to help it and then 60 mg of steroids every day for eight weeks. I am having neuropathic pain in my legs from the hip down that is a sharp needle sensation, bad headaches, back pain, dizziness, stiffness in hands,and  chest pain and pressure that feels like my chest just caved in. I am also drinking lots of water and I am really dry in the mouth all the time. My lips are always dry also as well as my skin. My contacts don't stay in my eyes because they are so dry. I also have sores in my ears. I also have trouble thinking and remembering and I cannot concentrate. My doctor's cannot find what other autoimmune disorder that is going on with me because of the steroids. I am getting taken off the steroids slowly. I have also just been diagnosed with steroid myopathy. Do you know what I could have? What are side effects of steroids?
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605522 tn?1220131803
Yep, you could have celiac disease, like me and 3 million other Americans, 1 in 133 people.  I suggest you read up on celiac and consider trying the diet, or getting the wheat gliaden antibodie tests done.  I have Hashimoto's also, and celiac.  The celiac came first and the Hashimoto's followed..  People with celiac can get a host of other autoimmune dieseases.
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Avatar universal
What is celiac? What symptoms do u have? Does it matter that I was on steroids? Do u have bad neuropathy pain in ur legs like sharp stabbing needle pain and awful headaches?
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605522 tn?1220131803
Hi Sportynik,

No I don't have neuropathy myself.  There are other celiac people who do have neuropathy though.  The celiac disease symptoms and associated conditions (autoimmune diseases) are variable.  Some people get one autoimmune diesease, (such as Hasihimoto's Thyroiditis, that's me) others get a different one or several.  The thing is they are all autoimmune diseases caused by the same thing, a leakage of a forgein substance into the blood stream through the gut,  and the bodys' natural attempt to defend itself, an immune response.

The thing is, many people have what they call silent celiac, where there are no gastro intestinal tract symptoms.  Then they have no clue that something is wrong until they develop an associated autoimmune disease.

I don't have silent celiac myself, I have the GI tract issues such as D and C, gas, bloating and pain.  I also now have problems sleeping due to my thyriod going into overdrive and secreting extra hormones as it is attacked by the immune responses of my body.  I have ridges running lengthwise on my finger nails due to non-absorbtion of vitamins/minerals.  That was recent, in the last year.  I have ringing in my ears, sinus problems, swelling of my feet and ankles, confusion, tiredness, not being able to stay awake at times,  and also some over chargedness at times.  All these symptoms improved after I started a gluten free diet.  I know, it sounds wierd that a celiac can change thier health by not eating a certain thing, but it is true.  People are aware of food allergies like peanuts, wheat, and so on.  They are caused by a more immediate response mechanism.  There are other slower immune responses that happen as well, and they are predominant in celiac.  The slower responses have a different affects on the body, they don't make such immeadiately recognizable symptoms, like hayfever symptoms, but take a more inward directed tack like in fighting a cold or flu.

The celiac diagnosis time is typically 11 years, due to the variability of symptoms and autoimmune diseases that it causes having different symptoms, and the plain fact that doctors often don't recognize it or believe it can be a problem.  My primary physician didn't even know what it was, and had never treated a case.  I went to a celiac specialist to get tested and diagnosed after my sister researched my symptoms.
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Avatar universal
Hi finepickle,

       Thanks for responding to me again. I do have GI tract issues also like pain, trouble swallowing, and the others you described. My doctors right now are thinking I have lupus. Can lupus go along with celiac disease? I also have hashimoto's thyroiditis and diabetes insupidus and steroid myopathy and also antiphospholipid syndrome. They are thinking I do have lupus cause I have all the symptoms of that including the rash on the face but they can't find it because of my steroids. How do you diagnose celiac? What kind of diet do you have to be on? Please respond back to me sorry for all the questions. Thank you so much.
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Avatar universal
Also do celiac patients not all but some have really awful neuropathy like pins and needle sharp pain? I have that and my rating is always an 8 on the pan scale. I probably have alot of different things going on so maybe that is what the neuropathy is from. Thanks again.
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482850 tn?1215066002
The symptoms you listed in your original posting sound like a possible fungal infection. Have you or your doctor(s) considered testing for fungal infections?
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Avatar universal
Thanks for commenting. No my doctor's haven't brought up anything about a fungal infection. What is a fungal infection? I am on steroids and have been for a long time do you have any other advice for me?
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605522 tn?1220131803
Hi Sportynik,

Yes, some celiac people have pain in the nerves.  I don't, just not how it hit me.  Also a skin rash is one of the associated conditions.  In fact, there is a type of skin rash/condition that only occurs in celiac people called dermatitis herpetiformis (DH).  Did I mention that celiac people have more fun?  Hmmm, probably slipped up on that one for some reason.  :-)    The diet is to eliminate any wheat, rye, or barley gluten (protein).  So, for me that means I eat a mostly rice based diet these days.  There are GF (gluten Free) breads in the the stores if you want them.  It does take a little learning process on doing the diet, because gluten is hidden in many products under different names (spices, natural flavorings, TVP, malt, caramel, etc.).  So the safest approach is to cook your own food at home from raw ingredients.  So I cook rice and veggies, and add some chicken or beef or shrimp or other dead animal.  Yum!  Celiac destroys the villi in the small intestine that absorb the nutrients from your meals.  So another side affect is malabsorbtion of vitamins and minerals that your body needs.  I did a search on lupus on a celiac site and got lots of hits, so it may be one of the associated conditions.  glutenfreeforum is the site, I don't know if it is ok to post a direct link here.

Here is a list of blood tests for gliaden antigens from the Celiac Sprue Association site:
(gliaden is the protein in wheat the causes the reaction in celiac)


http://www.csaceliacs.org/celiac_diagnosis.php

Quote \\"Blood Tests

A number of tests, sometimes collectively referred to as the Celiac Blood Panel, will aid the physician in diagnosis. The tests may include, but are not limited to:

    *
      Serologic Tests

         1. EMA (Immunoglobulin A anti-endomysium antibodies)
         2. AGA (IgA anti-gliadin antibodies)
         3. AGG (IgG anti-gliadin antibodies)
         4. tTGA (IgA anti-tissue transglutaminase)
//  End quote

Some doctors also say that an endoscopy is needed to confirm the intestinal damage.  Some celiac people think (me included) that if you have the antibodies circulating in your bloodstream that is proof enough.  The antibodies cause the damage to the intestine.
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Avatar universal
Thanks again for commenting. How do you get celiac disease? What do you mean celiac patients have more fun? With celiac disease do you have trouble swallowing without water? I do think I have lupus as well as my doctor's but the tests aren't coming out positive because of my steroids but I did test positive for antiphospolipid syndrome which is connected to lupus. Do you have any other advice for me? Please write back. Thanks.
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Avatar universal
Also what doctor deals with celiac disease?
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605522 tn?1220131803
Hi Nik,

Just kidding about the fun, dumb joke I guess.  A gastroenterologist is one doctor who would check for celiac.  Some people see an endecrinolgist instead.  Celiac is a genetic condition, not a pathogen like a bacteria or virus.  I read somewhere that 1/3 of the USA population have some of the gene markers for celiac.  But only a fraction of them actually develop celiac.  They say that for some reason it becomes active in people due to some trigger.  Which can be about anything it seems, a cold, stress, anything.  What they mean is that people can go through life with no symptoms and then suddenly develop symptoms, although they have had the genes all along.  Other people have symptoms at birth though.  The biopsy is done with an endoscopy, they take samples from the samll intestine.  A gastroenterologist is the doctor for that test.

There is only one treatment for it, and that is the diet.  There are a few celiac research centers around, if you can find a center close to you that is the a good place for testing.  There is one at University of Maryland and another at  University of Chicago.  There is another one in CA at San Diego I think.  Your primary doctor should be able to do the celiac test panel though.  They just draw some blood and send it to a lab for testing.  Just make sure to ask them for a complete set of tests, like the list I posted.  Sometimes they only test for one antigen, and that is not good enough.

I do have trouble swallowing at times, but I think that is because of my thyroid problem.  I also get sweat head at night when sleeping, I wake up with a sweaty head sometimes.  That is also due to thyroid.  People with celiac can develop a variety of other autoimmune diseases.

Have a look at this list:

http://www.celiaccentral.org/What_is_Celiac_/Related_Diseases/98/
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Avatar universal
Thanks for commenting. How do you live with celiac is it really hard? How many different diseases do you have? Are you having alot of problems now? When were you diagnosed with celiac  disease? The symptoms that I have are dizziness, can't walk without walker, bad hedaches, trouble typing stiff hands, muscle aches, body aches, horrible neuropathic pain in legs (pins and needle sharp stabbing pain), dry mouth, dry eyes, nausea, chest pressure ( feels like my chest is sinking), short of breath, and trouble reading and concentrating. Does celiac disease go along with those?
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Avatar universal
Sorry I forgot you said something about a rash. What does that look like and where is it usually located?
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Avatar universal
Hi finepickle, with celiac disease do you have hair loss?
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605522 tn?1220131803
Hi Sportynik,
There are many varying symptoms of celiac.  Celiac can lead to a variety of different autoimmune diseases.  I found out I had it because my sister looked up the symptoms of my thyroid condition and also my GI tract (digestive) symptoms.  I did go to a specialist to get tested later, although it took 4 months to get the appointment.  I went gluten free (GF) last Dec-07, and didn't get to see a specialist until May.  Since I went GF my symptoms have reduced, and I feel much better.   I  used to have sinus problems a lot.  I still have ringing in my ears that comes and goes.  My feet and ankles used to swell up a lot and turned all blotchy looking but have started to look kind of normal now.  And they feel warm now which is very different.

Ok, now thyroid by itself can cause a lot of different symptoms, hair loss being one, dizzness another, sweating, tiredness, confusion, the list just goes on.  The thyroid affects your body metabolism, so it can really throw things out of whack.  I looked up lupus and it does sound like a tough thing.  Have you tried any diet changes to see if they help you?  It is a fairly simple thing to do if it does help.  I know it made a big change in how I feel.

I have hair loss but also my father and 2 uncles had the same pattern baldness.  I haven't felt like it was related to celiac or thyroid but maybe there is a link.  Hmmm.
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605522 tn?1220131803
Hi Sportynik,

Also, many celiac people have poor food nutrient absorbtion due to damaged gut linings.  Celiacs are often vitamin B deficient.  They say that vitamin B deficiency can cause nerve damage and pain.  I take a liquid B-12 supplemnt for that.  It is just a liquid that you squirt in your mouth and hold it for 30 seconds so it gets absorbed in the mouth.
I also take a regular B vitamin pill with all the B vitamins for extra measure.  I use Spring Valley brand liquid B-12 (made b Nature's Bounty Co), but there are other brands available.
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Avatar universal
Hi finepickle,
        No I have not tried the gluten free diet but I am going to see a specialist soon so maybe they will suggest that. My thyroid is under control now and the Hashimoto's is better so the dizziness and all those other symptoms my doctor's think they have to do with lupus. What kind of sinus problems did you use to have? My feet and ankles are swollen up but they also think that is because of something else because they do not go blotchy. I have extreme hairloss and that has just started happening in the past couple weeks and they also think that is because of lupus. Do you have any thing like lupus or any other autoimmune disease?
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Avatar universal
How do you know if you have poor food nutrient absorbtion? I am taking a B-12 supplement right now and have been for a long time but that isn't helping me. Did you notice a difference after you started taking the B-12 supplement?
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605522 tn?1220131803
Hi Sportynik,

Good to hear you are taking a B supplement.  The doctor can test your blood for vitamin deficiencies.  I don't have any other auto-immune disease besides the Hashi's.  It has taken many months for me to feel better after going gluten free.  I started feeling better within a few weeks, but it took months for me to learn how to avoid eating gluten.  

Here is some info from the National Foundation for Celiac Awareness site.

This is a list of test for celiac that doctors do to find the different antibodies.

http://www.celiaccentral.org/What_is_Celiac_/Related_Diseases/98/

    * Total IgA
    * IgA antitissue transglutaminase (tTG)
    * IgA antiendomysial antibody immunofluorescence (EMA)
    * If IgA is deficient, IgG tTG test should also be ordered. At the discretion of the doctor, antigliaden IgG can also be ordered.

This is a list of related auto-immune disease that people with celiac tend to get, also from the NFCA site.  Some people get onf of these, or two, or more.  It kind of depends on each person, and one of the factors is how long they have had celiac and kept eating gluten.  Once people stop eating it, they tend to get better, but it is not that all their autoimmune diseases go away.  They just don't tend to get worse.

Related Diseases

People with Celiac Disease often suffer from other illnesses, such as:

    * Autism
    * Dermatitis Herpetiformis
    * Type 1 Diabetes
    * Thyroid Disease
    * Infertility
    * Osteoporosis/Osteopenia
    * Depression
    * Sjogren's Disease
    * Juvenile Idiopathic Arthritis
    * Intestinal Cancer
    * Peripheral Neuropathy
    * Down Syndrome
    * Turner Syndrome
    * Williams Syndrome
    * Liver Disease
    * Migraine


I think you are wise to do reasearch on your condition.  Please don't make any changes to what you are doing for your health/diet etc without talking to your parents first and getting their approval.  They need to know what is going on with you so they can help you.
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Avatar universal
Hi finepickle,  Thank you so much for all of your help and I hope I didn't bother you. My parents are totally aware of what is going on but we don;t want to do anything different till we talk to my doctor in a couple weeks. My mom also is a nurse so she knows alot about what is going on she also think I might have sjogren's disease and they tested me but we still haven't found out what the results are. Right now we are just doing research and waiting to see because of my steroids we don't want anything else to go wrong. Me and my mom think I have lupus and my doctor's do too but we can't find it because of the steroids right now. Do you have any other advice for me?
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605522 tn?1220131803
Hi Sportynik,

Well, surprise!  I found another list of diseases related to celiac.  This one is from the NIH site National Digestive Disease Information Clearinghouse NDDIC.  They include lupus as one of the related diseases!

Please do consider getting a full celiac test panel done.  If you do turn out to have celiac, the good news is that it is easily treated by changing your diet.  Since celiac is a genetic condition, it is often true that other people in the celiac person's family will have celiac, or other auto-immune diseases.  You might want to ask your mom about that.  If there is a history of any of the related diseases.  In my family two of my uncles had colon cancer, my younger brother had crohn's disease, my dad had diabetes, my sister has endometriosis, and my dog had fleas!  Well, maybe that last one doesn't count.  :-)  It's great that your mom is a nurse, she can really help you a lot!

http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/#8
Diseases Linked to Celiac Disease

People with celiac disease tend to have other autoimmune diseases. The connection between celiac disease and these diseases may be genetic. These diseases include

    * thyroid disease
    * systemic lupus erythematosus  ******
    * type 1 diabetes
    * liver disease
    * collagen vascular disease
    * rheumatoid arthritis
    * Sjögren’s syndrome

Hey, no you didn't bother me.  I am glad to try and help.  I had to go 12 years before finding out  I had celiac.  That is not unusual in celiac.  My doctors just didn't think of it.  It is slowly becoming more widely known now.  But still a lot of doctors don't test people for it when they should.
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Avatar universal
Thank you for your help. Ya I have done research and lupus is related to celiac disease. I will talk to my mom about us asking the doctors to do the test panel. My dad has hyperthyroidism and my mom used to but it is fixed, and my aunt has antiphospolipid syndrome and lupus. Do you have to stay on the diet for your whole life if you have celiac?
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605522 tn?1220131803
Hi Sportynik,

Yep, the diet is a life long thing.  It is not bad though, the food is better for you than what most people eat.  There are a lot of gluten free foods in stores these days too.  I make mostly rice and veggies with some kind of meat.  Corn chips are ok and corn tortillas. There are some restaraunts that have GF foods now also.
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Avatar universal
Thank you for all your help. You have answered a bunch of my questions. I will talk to my doctor's about doing the test panel for celiac disease. If you have any other advice please let me know. Thanks.
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