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Other Heath Conditions..????


Star382000
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I am trying to look into what all else I might have in conjuction with POTS. I know there is a history of celiac sprue in my family (as well as depression and all that fun stuff which I've perviously been dx'd with) And am looking for all thoughts and information on what all to look into and any tips or just anything at all. This is so distressing to me because things that I have been living with for a long time now all seem to be falling into place and into categories and just any help and thoughts and information would be so wonderful. Thank you so much!!

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the only way to find out is to get tested. if you have symptoms, a lot of doctors will do all kinds of tests just to rule things out. the problem is the autonomic system is just tied into everything, so can get so confusing as so many things overlap. it's as frustrating to doctors, (the good ones anyway) as it is the patient. if you are having some specific problems it's best to see a specialist in that field. having said that, so many tests come back normal it can be an effort in futility. but the only way to know is to rule it out. this has not been helpful, i'm sure, but it's about the best i can do. good luck! morgan

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Celiac and ANS problems can co-occur, but it's unclear what relationship exists between the two things. I have been told by my GI doc that while I don't have the antibodies currently, he feels I have a problem with gluten that I should plan on no longer eating any. I'm better at following the diet when my life isn't hectic--I've been pretty bad with cheating lately--had a dinner roll last night, and some pretzels today. Both are big "no-no's".

If you want resourse of where to go for Celiac information and also where to buy good gluten free foods, let me know. I'll email you with links.

Nina

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Kate

I have celiac too. It also runs in my family. You can have a simple blood test done for it. Just explain to your doctor that it runs in the family and that you've been having GI symptoms and you need to rule this in or out. Here's a link for more info

http://www.csaceliacs.org/

There are many other helpful sites on the web as well. Just make sure you haven't stopped eating gluten before the test, as it may give you a false negative result. I've had celiace for 4 years now, so if you do test positive for it, I'd be glad to give you resources for GF lists of food brands and places to order them, etc. Best of luck.

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Gena, my doc felt my blood work was negative because I had already been off gluten for more than 4 years. Just before the test, I ate gluten for a few weeks, and felt HORRIBLE... however, my GI doc thinks that I probably didn't eat enough of it for long enough to build up a blood level of the antibody--and that based on my symptoms alone, we're going with the diagnosis. Star, I'll post some links later today.

Nina

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Hi Nina,

Yes I agree that you probably hadn't been ingesting it long enough. I think I read somewhere that you should at least be eating it regularly for 6-8 weeks before the test. However, for some people it just makes them feel too miserable so instead of getting the test they just go gluten-free and skip the test. Even those that do not test positive for celiac can still have problems with gluten intolerance. I think we've all learned to trust and listen to our bodies in spite of what the medical tests say! :)

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I've never been tested for celiac, but I went gluten-free probably about 18 months or so ago. My goodness - the bloating and discomfort disappeared! A few months ago, after absolutely no gluten for a number of months, I allowed myself 3 pieces of pizza one evening and was fine. However, over the past 2 months or so I've really let down on this and allowed myself a tiny bit of wheat fairly regularly, and I'm back to feeling bloated and uncomfortable. So I think that after having "cleared" my system it could handle that one-time splurge, but the constant (even tiny) cheating recently is what created my current backward slide.

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kate,

as i said in an earlier post...i think in your case you might want to look in to celiac, simply b/c it can run in families.

there are so many conditions that can mimic pots, it is hard to know just where to start.

as for celiac...i had the blood test twice and it came back neg. for celiac, probably b/c both times i had already been on a gluten-free diet for a long time. i just cannot tolerate gluten or dairy. i honestly could not eat what nina ate and not be completely deblitated from eating that stuff. i have to be super careful. i really don't know if i have celiac or not, but the diet works for me big time. it doesn't solve everything, but it works.

elimination diets are a LOT of work, but one of the best ways to figure out your food intolerances. it also takes a while after you stop eating foods like gluten to really let your body heal and see results.

later alligator!

emily

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Thank you for the link and information from your experiences. Now I have definatly more of an idea where to start in this. I am trying not to become paranoid and worry about having so many things most of which I don't even know :D:D I definatly want to add what you all've said to my list of things to look into, thank you so much :D

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Here's a good source of information:

http://www.celiac.com/st_main.html?p_catid=2

and a good listing of safe and forbidden foods:

http://www.celiac.com/st_main.html?p_catid=12

This is where I shop:

http://www.glutenfreemall.com/

the site allows you to buy directly from the companies that make the items--I have some personal favorites:

pastariso brand of mac & cheese--all flavors are good and are a great substitute for my favorite mac and cheese from a box (or as my sister calls it, "crappy mac"). :D

Also, I've had many of the other Pastriso branded products.

I'm a carb NUT-- and I like most of the Glutano brand cookies, my favorites are the ones that are like oreos.

As far as things from the regular grocery: Safe grains include oats, corn and rice. Products that are safe to eat can be found here. In general, all fruits and veggies are safe, as well as meats and protein sources EXCEPT for texurized vegetable protein--also called "saitan"--it's made completely from wheat gluten and can be found in many vegetarian products like vegie burgers and veggie dogs.

When I have a carb craving, here's the list of things I go for:

safe foods include corn chips, potato chips, rice cakes and chips, soy based chips. I also like Barbara's cereals--the Puffins line is all mostly oat based.

If you have an organic grocery or Trader Joes nearby, they have some pretty good brown rice based pastas. Tinkayada is my favorite brand. I get it at my local health food store, but I've seen it at Whole Foods as well as at Fresh Fields. Trader Joes own brand is good. No other types have come close to the correct texture for pasta.

Nina :D

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Interesting topic. Interesting to see how many of you have celiac sprue, even though it is fairly uncommon. Just another correlation to wonder about.

I've got the following "other stuff:"

Asthma

Complete Heart Block/pacemaker dependent

Dysautonomia

Chronic ulcerative colitis

GERD

Migraines

Psoriasis? Eczema? some weird thing I never bothered to go to the doc about....

Arthritis (workup in progress)

Bilateral plantar fascitis (currently with cast on one leg, immobilizer on the other)

Neuroma in R. foot

Expressive aphasia

Cholecystitis w/ gall bladder out this spring

Metrorrhagia w/ hysterectomy slated for Dec. 7th (Day That Will Live In Infamy)

History of viral meningitis

History of beryllium exposure

And I've blown out a disc but had it repaired (L5-S1) and am doing well

I do believe that all of this is autoimmune in nature and somewhere there is a big ol'diagnosis just waiting to happen. It just hasn't revealed itself yet.

But I'm doing fine. Never, NEVER confuse the physical ills with free will and one's ability to make choices about one's life!!!!!

For the record: Crutches suck. They do a job, but they suck. If all goes well, I'll get the cast off six days before my hyst. Woo hoo! Freedom is mine!!!

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Once again thank you so much for the information Nina! I am looking into them now and it's all very interesting, and the food is making me hungry :P Ooh and now I have a reason to get my mom to shop at Trader Joe's! I love that place :P

Herdswoman ~ it's great that you said you're doing fine :) Can't wait for you to be free of the evils of crutches

Never, NEVER confuse the physical ills with free will and one's ability to make choices about one's life!!!!!

I do my best not to, just do want to look into these things so as to not be ignorring my body's talking to me especially when it's something very important :)

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i have been told that they think that my POTS is autoimmune in nature. My ANA is only minimally positive and not all the time. however, i seem to have many autoimmune disease issues. I am getting worse all the time too. Here is dysautonomia+ something list:

severe hemiplegic migraines

myofascial pain syndrome and arthralgia (so painful, looks like RA or Lupus)

gastroparesis

lower GI rapid motility

GERD and esophageal spasms

allergies, seasonal and food

celiac?

female hormone problems

ovarian cysts, irregular cycles

TMJ

I also have eczema, hmm

breast adenoma removed

iron deficiency anemia

low potassium/hypokalemia

muscle weakness

gallbladder problems

frequent kidney infections and skin staph infections

insomnia! grr

adie's pupil (the left one is larger than the right and reacts differently to light)

my mom and dad both have hasimoto's thyroiditis and my thyroid is borderline low. my mom also has MS. Her brother had celiac and has insulin dependent diabetes. Her mom had diabetes and some sort of GI problem plus heart palpitations and autoimmune leukemia. My mom's aunt has rheumatic heart. My mom's cousin has alopecia. There is much more, but that is the autoimmune family history. It seems like I am likely to have or get an autoimmune disease. I think it would help a lot to get a solid diagnosis and a different treatment plan. I am 23 so I do not want to have too many toxic treatments just yet. I wish I had a more solid and accurate diagnosis though. I keep getting more and more things. I have suffered badly for almost 8 years now and have had some symptoms (GI and migraine mostly) since infancy. I would like an end to these issues, or at least control of them and the prevention of more. I still have an organ or two that works normally and I would like to maintain these and improve others. LOL.

Leah

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I am also gluten intolerant. I refused the test for Celiac only because I am a big sissy (they wanted to do a small bowel biopsy), but the blood test showed sensitivity to gluten. I also find that a gluten free diet makes me feel much better, in addition to my avoiding my other problem foods (dairy, eggs, & peanuts).

I highly recommend food allergy testing for anyone with dysautonomia who has unexplained gut problems...it's very simple and can change your life! While there are other possibilities such as gastroparesis, I think allergies are easiest to rule out and treat if needed.

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