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Auto Immune And Pots


Rocknrobinz
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I believe I have autoimmune issues.

I know I have elevated Achr antibodies - antibodies to acetylcholine receptors, which denotes myasthenia gravis. But, I have no symptoms other than the bloodwork?

I also have interstitial systitis, a bladder inflammation of unknown origin which I think may be autoimmune.

I also have chronic gastritis - another inflammation, this time in my stomach and I suspect something autoimmune.

All in all, I'm a puzzle. My mother told me she just read an article in the medical section of her newspaper saying that autoimmune stuff manifests itself very differently in each person and that doctors don't know what to do about it.

Now, I'm paraphrasing what she said and I'll have to read the article myself to see what it says.

In any event, I think that in me there is a link between the autimmune stuff and my POTS, though I came back negative to antibodies to ganglionic Achr antibodies (a marker in some serious POTS cases).

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I have tons of autoimmune issues and no one seems to know what's going on. I've been DX with Myasthenia Gravis, yet, MY bloodwork came back negative, so now I've been told that I don't have it. (Whatever) I respdonded well to the treatments for it; which incidentally include Mestinon. I also had IVIG treatment for it and improved greatly with that. So, who knows?

I'm being worked up right now for Vascular Ehlers-Danlos Syndrome. Now, I'm not sure if that's technically an autoimmune thing or not, but, what it boils down to is an inability to produce and use collagen properly. For me, it's manefesting itself in problems with bleeding, bruising, skin issues and a MVP.

Can I ask, what's POH? I've never heard of that one before?? I didn't "qualify" for POTS because my heart rate was 2 beats per minute shy (again, WHATEVER!!!). I was also told that my BP was too low to have POTS. Okay.............so........then, what's wrong with me? I've been fainting for years and have EVERY other symtpom, and I mean, EVERY single one. HEAVY SIGH!!!

Anyway, I guess that lots of folks do indeed have POTS and autoimmune issues.

Good luck on your journey!!

Bec

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Yes, I was told by Dr. Grubb that the autoimmune disorders effecting the gut such as ulcerative colistis and chrons can be a principle trigger for POTS in some people. The autoimmune reaction that starts in the gut then can decide to go on to attack the ANS. I was diagnosed with gluten intolerance, considered an autoimmune, about the same time as POTS. As you know with one autoimmune disorder you have greater odds of developing another,

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Hi everyone, I'm new here. :unsure:

I have Celiac Disease, which is an auto-immune disease triggered by ingesting wheat, rye, barley, oats, and anything that may be cross-contaminated with them. Some people refer to this as a "gluten allergy" but it is in fact not an allergy at all; it is an auto-immune disease. I struggled to get the CD under control for over 2 years, and now finally my blood tests are clean, so that's one problem down, several to go! I've had POTS and neurocardiac syncope since 03', but because I've spent so much of the past few years concentrating on the Celiac plus other issues, I haven't learned as much about POTS and its treatments as I would have liked. Finally I found this message board, and I'm hoping to learn as much as I can (I know the basics of course, but I'm not well enough yet to even work part-time or do my own errands, so apparently I've gone wrong somewhere, or my doctors have!) I have always read that Celiac and POTS kind of go hand in hand, though, so just thought I'd mention that.

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How do you know that you have Celiac Disease? I've read a lot about it here and there and this site, but, I really don't understand what it is.

I was told when I was a teenager to cut out all yeasts, molds, spores and fungus'. That meant bread, nuts, mushrooms, etc. I was put onto a strict diet, following those guidelines and I have to admit, that I felt much better (in time, of course). The doctor that placed me on this diet, never told me what the condition was called (as far as I know. My Mother isn't very good at relaying information, if it isn't to HER benefit, so who knows...). Could this be the same condition or not??

Bec

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Bec,

No its not the same as Crohn's disease or intolerance to gluten. Your Mom's doctor probably thought you had sensitivities (or allergies maybe) to the foods you mentioned. Maybe you do have nasal allergies to molds?

I know that one "alternative" doctor I went to suggested the same to me a while ago because, as she put it, I was allergic to mold, so my gut was probably also sensitive to fungus (on breads, fruits) and mushrooms.

I really don't know if that is true, (about foods potential to affect my health) but I know I don't do well with yeast (in breads) though I still eat bread. I know not to eat too much bread and I really don't eat mushrooms that often, and I tend to avoid fruits. Mainly, with the bread, I try to eat it fresh and not too often.

Not very healthy sounding. Oh, well.

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The terms "Celiac Disease" and "gluten intolerance" are slightly different, only because with Celiac Disease, there has been an official diagnosis through blood work and biopsy; whereas when someone calls themselves "gluten intolerant" they may simply be saying they are intolerant the same way one could be intolerant to dairy, let's say, and they get unpleasant symptoms but are not actually in danger of developing stomach cancer, lymphoma, or a secondary auto-immune disorder if they continue to ingest gluten. That being said, of course all Celiacs can't have any gluten anyway, so i suppose it doesn't matter how one describes it! :unsure:

I was diagnosed with CD at the Mayo Clinic through blood tests, which showed extremely elevated antibodies (Ttg, IgA, Igg) and then through an endoscopy of my small intestine, where several biopsies taken showed my villi were wiped out by the damage of the disease. I had lost about 30lbs and was very very ill at that time, and this may have caused the POTS to develop a few months later.

Anyone who has gastro problems and suspects it may be more than simple "IBS" ( which is really just the doctor's way of saying they don't know what's wrong) should request a thorough antibodies blood test for Celiac. Make sure your dr is knowledgable, though. Many don't know about CD and don't know which tests to even order.

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Actually, I am considered gluten intolerant based on a positive biopsy that showed the autoimmune reaction. All my blood work was negative but the biopsy is the gold standard I guess. I was put on a gluten free diet and a year later the biosy was in normal range. I requested the gene test and it was negative for celiac disease so that's why I don't say I have celiac disease. My gastro said to stay on the gluten free diet since they have not identified all the genes associated with celaic. I think mine was caught very very early but the POTS came on within 2 weeks of going on the gluten free diet. My gastro who is an expert in celiac believes 1 in 150 people is likely gluten intolerant. Dr. grubb thinks celiac/gluten intolerance, because it is an autoimmune disorder, is a possible trigger for POTS.

The terms "Celiac Disease" and "gluten intolerance" are slightly different, only because with Celiac Disease, there has been an official diagnosis through blood work and biopsy; whereas when someone calls themselves "gluten intolerant" they may simply be saying they are intolerant the same way one could be intolerant to dairy, let's say, and they get unpleasant symptoms but are not actually in danger of developing stomach cancer, lymphoma, or a secondary auto-immune disorder if they continue to ingest gluten. That being said, of course all Celiacs can't have any gluten anyway, so i suppose it doesn't matter how one describes it! :)

I was diagnosed with CD at the Mayo Clinic through blood tests, which showed extremely elevated antibodies (Ttg, IgA, Igg) and then through an endoscopy of my small intestine, where several biopsies taken showed my villi were wiped out by the damage of the disease. I had lost about 30lbs and was very very ill at that time, and this may have caused the POTS to develop a few months later.

Anyone who has gastro problems and suspects it may be more than simple "IBS" ( which is really just the doctor's way of saying they don't know what's wrong) should request a thorough antibodies blood test for Celiac. Make sure your dr is knowledgable, though. Many don't know about CD and don't know which tests to even order.

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Hey there!!

Futurehope wrote - "No its not the same as Crohn's disease or intolerance to gluten. Your Mom's doctor probably thought you had sensitivities (or allergies maybe) to the foods you mentioned. Maybe you do have nasal allergies to molds?"

Actually, I don't have any nasal allergeries at all (that I know of). I'm not one of those folks that gets all sniffely every spring or fall or whatever.

What the doctor told me back then (now, again, this was 18 years ago, so they may not have known a lot about this stuff yet) was that my body didn't tolerate any sort of yeast, mold, spore or fungus. That is was "attacking" my gut and my body in general. She suggested that I didn't need any "treatment" really, but rather to change to this strict diet, in order to be "well". I had just been hospitalized for six weeks and no one could figure out what was wrong with me. I was super thin (seems funny to say that now......boy I am so NOT super thin anymore....) and couldn't keep much food down, had severe diarrhea, was running a fever and had almost nonstop migraine pain. The funny thing is, in hindsight, I think that I was having a POTS/Dysautonomia and/or VEDS flare up. Weird, really, to look back and be able to pinpoint all the times that doctors have been wrong!!!

Anyway, I guess that my point is that, I don't know "what" precisely THAT episode was, but, I can say that I felt much better after going off of all gluten, cheese, nuts, mushrooms, etc.

Also, back to the topic of autoimmune issues. I was DX with Myasthenia Gravis last year. Although, I've since been tested for "some" of the antibodies and it came back normal, my Neurologist still believes that I have this autoimmune disease. I, myself, don't really know what I think anymore, to be honest with you. I do, however, believe that I have something of an autoimmune sort. I don't know if EDS falls into that category or not, but I know in my soul that the test for VEDS will come back positive, as does my Geneticist.

It does seem odd how many of us either had before, or now have an Autoimmune issue. Kinda makes me think that POTS may be some sort of Autoimmune "type" issue as well (underlying, at least).

Bec

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I have Hashimoto's Thyroiditis, which is an autoimmune disease, and I also have Chronic Orthostatic Intolerance. Soon after the diagnosis of Hashimoto's, I began having "episodes" - heart palpitations, pressure dropped, fell down, pressure spiked. Perhaps they are related.

BGina

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Dr1713:

Yeah, your dr is right...gluten intolerant is the correct term is you don't have the gene for Celiac. Celiac Disease is the term if you do. Of course either way you could have the damaged villi, as you did. Whether it be an intolerance or the actual disease, gluten free always feels more comfortable, so that's the way to go! :)

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Hi Gillian -- Now that I have a diagnosis of POTS by Dr. Grubb I have been relieved to find others who also have the gluten connection. It seemed too much of a coincidence to me but none of my local Drs. could draw the connection until Dr. Grubb. The good news was the gluten free diet resolved all my gastro symptoms but none of my POTS symptoms -- if anything they got worse...until I found Dr. Grubb and got the right medication.

quote name='BGina' date='Aug 22 2006, 03:26 PM' post='62457']

I have Hashimoto's Thyroiditis, which is an autoimmune disease, and I also have Chronic Orthostatic Intolerance. Soon after the diagnosis of Hashimoto's, I began having "episodes" - heart palpitations, pressure dropped, fell down, pressure spiked. Perhaps they are related.

BGina

Hi Gillian

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Yeah it's a funny connection between POTS and Celiac/gluten intolerance, isn't it? I've been hearing that, too, and don't know why that is, but they are inter-related. I was the same as you. I went on the diet, my Celiac went into remission and my antibodies disapeared, but my POTS is worse. I haven't found a decent pill combination yet for POTS, either, so I'm still really struggling.

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I am currently working with an immunologist. I am on Cell Cept and it has been helping the neuropathy that occured with my most recent POTS flare. I was almost normal for 3 years taking prednesone once every 6 months for sinus infections. I had the worst flare of my life in December after not having prednesone for about 9 months. The POTS has not gone away, but the weakness and numbness on my left side has.

I have am happy to have someone trying to adress my immune system issues. I hope my POTS will improve with more time.

Good Luck.

Rhonda

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  • 2 weeks later...

This is an interesting topic.... I have always wondered about a connection between autoimmune and POTS. I have two sisters, and one has iritis (an autoimmune disorder). My other sister's autoimmune system attacked her thyroid, and she presented with symptoms somewhat similar to POTS. Also, both of my sisters have panic attack disorders.

I honestly have not researched this topic, but it just seems that there is a connection of some sort. Who knows.

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my recent IVIG treatments are under the supposition that my progressive neuropathy/ autonomic failure is autoimmune in origin. while they haven't brought any benefit to me (at this point) , many of the top autonomic docs believe that there is an autoimmune connection for many with dysautonomias...and not just those with the currently identified antibodies that can readily be tested.

:( melissa

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I also had ulcerative colitis. I am going to Mayo in 2 weeks for testing to see if I do have POTS (which I'm sure I do, just don't know to what extent).

The interesting thing is that back in 1995 my colitis got out of control after I had a viral infection. I wound up having my entire bowel removed. Here is where it gets interesting...after surgery the surgeon told my husband "it wasn't as bad as I thought it would be". Did I just have a surgery I didn't need to??

Mayo also did my bowel surgery, so it will be very interesting to see if they think there is a relationship.

Best of luck my friend. I wouldn't wish ulcerative colitis on my worst enemy.

Karen

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