So Dairy Is Gone Now...

[sarkin]

Z,

My swirling theories don't exactly match yours, but please know I'm ruminating right along with you. I do believe that for some of us (and specifically, for you and for me), an underlying gluten sensitivity has been like having an enemy agent on board, for a long time, so we're more susceptible to these other factors. That alone won't do the trick, as you say - more like the gluten issue leaves a back door open for the real trigger-puller to get in, and/or to do greater damage.

I do agree that MC is the *result* and not the cause... of whatever it is we're talking about. And I think science both overdescribes and underdescribes, which is why you can have an issue for a GI doc, another for a dermatologist, the fun prospect of a rheumatologist... and no one looking at the whole patchwork.

I thought of you this morning - when, for the first time in a long time, I tried a corn tortilla (which my husband said were especially good - should that not have been a warning flag?)... and then checked the ingredients. I'm not even pissed off, just kind of resigned that he is not going to stop saying "I just assumed..." and he is not going to read labels, and that I will always, always, be the sole responsible party for my health (really, how could it be any other way). OK, yeah, I'm also somewhat pissed off. I have a social evening tomorrow, so even if the morning wakeup D is mild, I'll be walking right into another booby-trap.

Oops, I believe that was a tangent

Glad you're mostly feeling OK. I don't blame you for being concerned about that malar rash.

I would love to have a better way to know what's going on, overall, as far as inflammation and autoimmune activity are concerned.

[MBombardier]

Thanks for the link, Z!

I am with you and Sara on thinking about the epidemic of autoimmune disease. I thought i was the only one who had noticed it. Kind of like buying a new car and then noticing how many other people drive the same car. My problem is that I have developed a medical mind out of necessity not affinity, so I don't find it as fascinating as you do. I wish I didn't have to be thinking about it, either for myself or for my three daughters. And my son and granddaughter, who gets it from both sides.

After just a few days relief from removing dairy from my diet, I went into the worst flare I think I have ever had. My body is acting like I am doing a colonoscopy prep. On top of that, the palms of my hands and the skin on my abdomen itched horribly for a couple of days but are now doing better. I have taken my diet down to chicken soup with carrots and banana, and applesauce for two days now. I'm not taking any supplements except my thyroid medicine.

*sigh* I suspect eggs, though there were five or six foods that I was eating consistently before the symptoms derailed me. I am not a cursing woman, but this disease is like an unfaithful lover. Not a real good analogy there... maybe the movie, Jaws is a better one.

Sara, I am so glad that your episode with gluten was not the major trauma that you expected. Feels like you dodged a bullet, hmm?

[Gabes-Apg]

Sara and Marliss

i clicked into page two of this thread and got a giggle at what you are both discussing and pondered ' how the heck did the discuss get to here??? I dont want to click pack to page 1 as it could wreck the giggle (does this make sense)

marliss - love the analogy

but this disease is like an unfaithful lover

an unfaithful lover that rips apart your beliefs, your routine, your trust in your body, alienates you from your favourite things.... cappacino with real milk, ice cream, warm croissants with real butter, wine, stress free eating out.


thanks for the friday afternoon giggle!!

[tex]

Marliss,

I'm sorry to hear that you're having a flare, especially one that's so intense. Since the itching suggests mast cell involvement, are you aware that not only the eggs, but the bananas are also a histamine-releasing food?

Tex

[Zizzle]

LOL Marliss!!

I like your analogy too.

Kind of like buying a new car and then noticing how many other people drive the same car

I know so many people with AI diseases, and that's just the ones they are willing to talk about!! I'm wondering if there's something in our tap water responsible for it all. My husband has prohibited me from saying the word "diarrhea" in public, no matter how medical and involved my conversation has gotten with someone. He's one of those guys who would like to believe women never poop or fart either. Of course, if someone asks how I knew I had a problem, well, I suppose I say I had IBS symptoms, and then people open up to me about their IBS too. I swear, I think IBS is universal.

I finally decided to go to the best possible doctor I could in my area to put all my puzzling pieces together. I took the advice of a celiac dietician I once visited and decided on Dr. Gary Kaplan. http://www.kaplanclinic.com/index.php He deals with people with chronic pain and chronic diseases, but has a special interest in gluten intolerance, and even diagnosing Ehler Danlos Syndrome (which I've been suspected of having). If he can't figure this all out, no one can. Problem is, he doesn't participate in any insurance plans, so I risk paying $525 just for the first visit! But I have a sizeable flex-spending plan paid for by my employer for opting out of their coverage. My appt is November 14. And my MRT testing should finally happen next month too. Can't wait!!

[sarkin]

Z,

I hope the doctor helps - it seems like a worthwhile shot, and a potentially valuable use of your flexible spending plan. And I truly hope you don't have EDS, but seeing a doctor who understands it can only be useful, either way.

I use the phrase 'digestive symptoms' (or 'nightmare digestive stuff') on occasions when I feel the big D word is uncalled for Not everyone I know has 'IBS' - but when you add in the GERD, the aches and pains, the migraines, and as you say, that's just what people are admitting to casually, it is quite a picture. (And then add in the anxiety/depression, the insomnia, and who knows what people *aren't* admitting to...)

Marliss, if this disease were *enough* like an unfaithful lover, I believe we'd have kicked it to the curb long ago, and thrown its toiletries out the window to boot. I am sorry to hear you're in a flare - may it be short-lived. And yes, I do feel as though I dodged a bullet. I was dumber than a bucket full of hammers yesterday - it so reminded me of my first days on this board, when I'd forget what I was saying mid-sentence... my husband and I are terrible interrupters, so he'd throw a reminder about something in while I was speaking, and I'd immediately have to ask him what I had just been saying. Truly, the digestive stuff is the tip of the iceberg with gluten sensitivity, celiac or otherwise, but the digestive stuff is plenty rough going during a flare. Wishing you speedy healing.

Love,
Sara

[Gloria]

Marliss,

You're definitely having a bad flare, especially if it's accompanied by terrible itching. Like Tex, I would suspect mast cell involvement. You may want to eliminate the banana and applesauce if you don't completely improve.

It sure would be nice if there were more doctors familar with mast cell issues. I don't want to waste my money going to someone who will use me as their study case.

Gloria

[MBombardier]

Applesauce too?? Geez...!! Okay, okay... I am trying to crawl out of my denial shell here. I guess I will study up on histamines now. The itching on my palms is better, but I am having random other itching not only on my abdomen but my back, my feet, my arms... It kept me awake last night. I've been watching for my granuloma annulare to flare, but it's been a little lamb. Go figure.

Sigh...

[Zizzle]

Marliss,
I don't mean to alarm you, but itching, especially on the palms of your hands, can be a sign of liver trouble. It was my sister's only sign of cholestasis/fatty liver of pregnancy. Then again, it seems linked to thyroid trouble, vitamin deficiencies, IBDs and cutaneous mast cell issues, so who knows... I suppose we should all be itchy!

The internal causes for the itchy palms and soles are more difficult to discern. These include systemic and psychological disturbances at times:

•Systemic causes for itchy palms and soles. Chronic kidney failure, liver diseases, endocrine disturbances like hyper or hypothyroidism, blood disorders including polycythemia vera, Hodgkin’s lymphoma, leukemias, multiple myeloma and cutaneous mastocystosis cause generalized itching; which can, at times, start as itching of the palms and soles. Itching of the palms and soles and elsewhere on the body may be a presenting symptom of HIV infection and Crohn’s disease. Atopic dermatitis, senile pruritus and aquagenic pruritus can present with itchy palms and soles, in addition to generalized itching all over the body.
•Idiopathic causes for itchy palms and soles. Many a time, itching of the palms and soles appear without any apparent causes. These are called idiopathic itchy palms and soles.
•Psychogenic causes for itchy palms and soles. Stress and anxiety can induce, aggravate and maintain persistent itchy palms and soles, in the absence of any skin rashes.
•Vitamin Deficiency. Vitamin deficiency, especially that of Vitamin B12, B1 and B6 can cause burning and itching sensations of the hands and feet.
•Dyshidrotic. Palmoplantar hyperhidrosis, the increased sweating of the palms and soles, can cause eczematous itchy dermatitis on the palms and soles.


Read more at Suite101: Causes of Itchy Palms and Soles: Palmoplantar Pruritus | Suite101.com http://hanishbabu.suite101.com/causes-o ... z1b4IJ0Piz

[Lesley]

Zizzle,

I am 66, and clearly do not have the obvious scientific background that you display (although I have substantial medical knowledge, but I do know that the terrible things happening are not just to women aged 30-50.

Over the last 15-20 years I have lost so many people to a variety of different diseases, but most of them to cancer. My mom died 8 years ago. When one of my closest friends died several others were battling with everything from PD to autoimmune and cancer(some argue that PD is autoimmune,) I asked, more or less rhetorically, why she thought this was happening to those around me, and me too. I really didn't expect more than a shrug, which would have been fairly typical, but her reply sort of astounded me.
She said "because my generation screwed up the world. We were told we were doing, but we did nothing about it."

Don't get me wrong. My mom was super intelligent, educated and well read. She just didn't usually show that much insight.

I do know that most of the people I have known and treated usually did get ill in their 40s and 50s, though a lot (including me) are still struggling with their illnesses. However, some new ones, in their 60s) have joined the group. I have very few friends (among those left) who are healthy. I hope they are looking after themselves because I can't afford to lose any more )-;

MBombardier - are you including goat cheeses and yogurt in the dairy group? I am wondering whether I should give up those too. Giving those up will be as sad for me as it clearly is for you. )-;
I find it difficult to isolate what my sensitivities are because the vicoden I need in order to maintain independence (serious back injury) gives me C. I never know what has caused an explosion of D.

(Question - when I initiate a thread I can use a smiley, but if I post in a thread the smileys on the left hand side disappear. How do you find them?)

[MBombardier]

Lesley~

It probably has something to do with your settings. For me, posting to a thread looks the same as initiating one. And yes--I am counting everything as dairy, whether it comes from cow, sheep, or goat. Bummer, but I'd rather feel better than enjoy a taste/texture for a few moments.

I am sorry to hear about your back injury. I occasionally take half a Vicodin when I am flaring because often joint and muscle pain is a part of it, and Tylenol doesn't really cut it for me. I have not noticed a constipating effect from that, but I am sure that I would if I had to take much more.

Something that many of us do is keep a "Winning the Pooh" diary. This is just noting down what we eat and what the effects are, or aren't. After a while, a pattern will show itself. If your Vicodin usage is consistent, this may work for you, too.

Zizzle~

Thanks for the warning. I was thinking about the itching and wondering if it was related to my liver, but my liver values were fine in May. The AST was slightly elevated and the ALP was towards the high end of the scale, but I read that there is not a problem unless two of the three are elevated. I have been having some RUQ pain, but I figured that was flare-related.

But even though the Zyrtec knocked the itching out (see my histamine thread), the issue is still in the back of my mind, especially since I had a paternal uncle who died of liver cancer.

[Lesley]

Marliss - If I get to the pool and don't have too much to do and can rest, I can manage on one vicoden (prescribed 3x a day). I just don't walk around much. Most days I can manage with only 2 at the most, but there are some days, like some when coming off the prednisone, and a day like yesterday when the pain is excruciating, when I have to take the full dose.
It really constipates me, but when the D comes back it's an explosion. Trouble is I don't know to what food the reaction is because the reaction time is neither consistent nor predictable.
There are also other drugs I need to get off, but I cannot do it all at once.

I would do anything to feel well. Hasn't happened for years!

BTW - last time I was hospitalized my AST was also slightly elevated. My GE did a f/u test 3 weeks later, and sent me for a liver ultrasound. Everything was OK, but they are keeping an eye on it given all the other stuff going on.
My sodium and chloride levels are ALWAYS very low no matter what I do. If I can get it up to 130-132 I do feel better, but if not I drag myself around. The exhaustion is horrible.

As for the smilies - I don't have an option in my settings to see them for every post. No matter, not serious.

Thanks!

[tex]

Leslie,

I think there's something wrong with your browser, and it's misinterpreting the php code. There's a slight chance that the cookie that your computer is using for this board might have somehow become corrupt. Try clicking on the link below these messages, that says, "Remove cookies set by this forum", and follow the onscreen directions. That will delete the cookie, and force the system to set a new cookie on your computer, when you log on again. Be sure you remember your password, though, because when you delete the cookie, your computer will lose the record of your password, along with the other data connected with this board.

Tex

[Lesley]

I reset and remove cookies all the time. I am not worried about losing my password because I use roboform on a thumb drive which transfers to my laptop. I could never remember my passwords since I change them often and have a lot. It's a terrific program. Saved me oceans of trouble.
I will try again, but as I said, it's not serious. I can make my own smileys /=;

[MBombardier]

I love Roboform! I've had it since 2001, when it first came out. I use the Roboform Everywhere, so the passwords populate to all three computers I use. I have no idea what 99% of my passwords are since I use the password generator.