multiple autoimmune diagnoses

motsy · Post by **motsy** » Fri Sep 23, 2011 4:56 pm

For whatever reason, I have had a flurry of symptoms come together at once, so now my diagnoses are hasimoto's thyroiditis- (old diagnosis), MC, lymphocytic (new) and Sjogren's syndrome- (mucous membrane issues, dry eyes, mouth and asthma are my main symptoms)-arthritis everywhere- injuries and otherwise-

Good to pull it all together, but wondering if anyone else on the forum is in the same boat?

In my research, seems that it isn't uncommon for these to be lumped together in one person... common denominator is misbehaving lymphocytes-
just looking for info at this point, still undergoing tests and evaluations..

tx to all
Motsy

MBombardier · Post by **MBombardier** » Fri Sep 23, 2011 7:00 pm

It sounds like you could have the main celiac gene that also predisposes to other autoimmune diseases. I have that one. I have between three and five autoimmune diseases, depending on how much denial I am in. That's supposed to be morbidly humorous. Right now I am only focusing on two--MC and Hashi's.

You are in the right place to get a first-rate education on how to feel better. Welcome...

Post by **tex** » Fri Sep 23, 2011 7:43 pm

Hi Motsy,

Yes, most of us have more than one issue. You might be interested in the results of this poll, if you haven't already seen it:

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=3715

Tex

sarkin · Post by **sarkin** » Fri Sep 23, 2011 8:43 pm

Motsy,

All those conditions have a strong association with gluten sensitivity... so you may be able to achieve improvement or remission on multiple fronts, via diet correction.

(Marliss, you are funny this evening!)

Many of us have had relief of all sorts of nagging symptoms - some minor annoyance (in my case, many things I wrote off to "middle age"), and some quite serious. Please ask whatever you need to, to feel confident you're heading in a positive and healthy direction...

Sara

MBombardier · Post by **MBombardier** » Sat Sep 24, 2011 10:55 am

Okay, after reading Tex' list, let's call it 8 autoimmune diseases. That's a nice, round number...

But I no longer suffer from GERD or TMJ, if I am careful, and asthma is only a sometimes thing. I never really believed the diagnosis of ankylosing spondilitis. So I''m back down to four.

Seriously, Sara is absolutely right. Since I am fairly strict with my paleo diet, I seldom have trouble with MC, fatigue, aches and pains, and even psoriasis. As you determine what's right for you, with diet, medication, etc., etc., you will likely experience an improvement in your general health as well.

Post by **tex** » Sat Sep 24, 2011 11:34 am

Marliss wrote:But I no longer suffer from GERD or TMJ

Same here.

Tex

sarkin · Post by **sarkin** » Sat Sep 24, 2011 12:42 pm

WOW, Marliss, I didn't know you'd been 'threatened' with ankylosing spondilitis - so glad it's a wrong diagnosis!

When you consider how many AI diagnoses are delayed (if the condition is diagnosed at all), it's quite a collection we have, all of us together. And quite wonderful that we are shedding them, as much as possible.

Sheila · Post by **Sheila** » Sat Sep 24, 2011 12:49 pm

I didn't realize there were so many auto-immune conditions associated with CC/celiac. I guess osteo arthritis is not considered auto immune but it is rampant in my family and we are all loaded with auto immune diseases. I have not had celebrex for a few days and have come to the conclusion that going GF does not decrease the pain from OA. I am going to start back on celebrex tomorrow as the pain in my hand, wrist and back make life miserable. I also have rosacea, TMJ and gallbladder (removed). My chiropractor works on the TMJ and does a great job of easing the pain. He also works on my esophageal spasm and helps with that too. Everyone in my family has esophageal spasm, inherited from my mother.

I am having a very bad reaction to something I ate yesterday and cannot imagine what it could have been. I ate no gluten at all but did have pasta fagiole with parmesan cheese. It was completely GF. Could beans make me feel sick? Tofutti?
Sheila

Post by **tex** » Sat Sep 24, 2011 1:27 pm

Sheila wrote:Could beans make me feel sick?Tofutti?

Yes, most people who are sensitive to soy are also sensitive to most/all legumes. It could have been the cheese, also. If that was commercially-processed pasta, the pasta could have been a problem, too. It sounds as though you might possibly be regularly eating foods that contain ingredients that you are sensitive to. Your osteoarthritis symptoms are almost surely coming from what you are eating. I used to have TMJ so bad that I could barely open my mouth wide enough to get a teaspoon between my teeth so that I could eat soup. All that totally disappeared after I adopted the diet, and I have never had a problem with it since then.

We have to be very strict with the diet - otherwise, it won't work, and we will continue to have certain symptoms - not necessarily as many symptoms as we have if we eat unlimited amounts of our food-sensitivities, but certain aggravating symptoms can persist, if we continue to eat traces of foods to which we're sensitive.

Tex

sarkin · Post by **sarkin** » Sat Sep 24, 2011 1:53 pm

Sheila,

My personal experience goes along with Tex's - and with his expertise, as someone who's been putting together a lot of information about MC, both from his research and reading and his thoughtful pondering of the many stories we've all shared anecdotally here.

And... yes, rosacea is another issue that is known to be triggered by gluten sensitivity.

I'm away with my husband, his mother, and a dear friend. I am the only one with a (diagnosed) chronic, autoimmune, inflammatory health problem. I am in less pain, have fewer complaints generally, and am sleeping less than anyone else (what a bunch of nappers!), because I am 100% in control of my diet. I find that interesting

You may indeed "lose" some OA symptoms, as you figure out what works best for you. I hope so! And - I just glanced at a list of ingredients for various Tofutti products online, and there are several possible suspects on that list. Soy is the #1 red flag, but maltodextrin, carrageenan, locust bean/guar gums, are all possible, as (I believe) is potassium sorbate... pretty much anything with this many ingredients is a bit of a spin of the roulette wheel. I'm not saying you should never eat it, but you might take Tex's rule till you're feeling better - eat nothing packaged with more than about 5 ingredients. (Easier on the eyes, while label reading, too.)

Feel better,

Sara

Deb · Post by **Deb** » Sat Sep 24, 2011 7:02 pm

Sheila, I've also noticed that when I don't take my fish oil for a couple of days my osteo seems to creep back in. I especially have had problems with my thumbs and hips. When everything is working I really don't have pain anymore. When I was in my forties I felt like an old lady and like I envisioned I should feel when I got "old". I am now 59 and feel much better than I did then.

motsy · Post by **motsy** » Sun Sep 25, 2011 3:59 pm

Tx for all your replies- have had the biopsy for celiac and it was negative, blood tests for gluten sensitivity, also negative- understand from all of you that I can still have some gluten intolerance. Getting ready to go on vacation, so it's a lousy time for an elimination diet, but plan to start with a version of paleo/Atkins when I get back. Glad to have so many people willing to share information, as MC is difficult to research. I am hoping that alot of this will settle down when I get my food intolerances figured out.

Post by **tex** » Sun Sep 25, 2011 4:22 pm

Enjoy your trip, and good luck with your diet program, when you return. If you're like most of us, you'll be absolutely amazed at how many symptoms will fade away, as you get those misbehaving lymphocytes back under control.

Tex

Sheila · Post by **Sheila** » Sun Sep 25, 2011 4:56 pm

Thank you for your replies and suggestions. I have gotten such great information from Tex and from so many others, Sara too. Even with all that, yup, I had tofutti last night. I am very, very careful about keeping gluten out of my diet but I do let some of the rest slide if it is something I LOVE. So, as to the penalty??? I had one of the worst head aches of my life, nausea complete with burps/belches, painful joints, exhaustion. I didn't get out of bed until 5 pm. I guess this is what I get for ignoring all the wonderful advice and doing as I please.

I think I need to get into the "acceptance" mode and stop trying to find things that I can "sneak" into this diet. I've been eating the Tofutti and thinking it didn't bother me at all. After being so miserable today, I'll get with the program.
Sheila

Post by **tex** » Sun Sep 25, 2011 7:54 pm

Sheila,

I'm sorry to hear that it was so hard on you. That's the pits. Maybe you can find a recipe that will allow you to make your own version, that would not only be safe for you, but just as delicious.

FWIW, I found this comment on a celiac board:

This is the response I received from Tofutti regarding any of their products being gluten free:

"All of our products are always dairy free. We do not sell any of our products as being gluten free"

Needless to say I won't be retrying the products again. Although wheat is not specifically listed as an allergen on the label, I am reacting to something and it may be a gluten containing item not from wheat. Just wanted to pass on this important statement from the company for others to consider.

The red emphasis is mine, of course.

http://www.celiac.com/gluten-free/topic ... ti-update/

We have to remember that "wheat-free" does not mean "gluten-free". The labeling laws do not require labels to show a specific warning about rye, barley, or oats. Only wheat has to be specifically declared. Unless a product is specifically labeled as gluten-free, it probably is not.

I hope you'll be feeling much better by tomorrow.

Tex