BB22

P.S.S.

Oh yeah the leg cramps too. Something awful. And indeed, post glutening that came back too. The symptoms are so long & so diverse - I guess I want to give them, the docs, some credit for not figuring it out - but alot of me is pissed off. On my behalf & on everyone in my family's behalf. Did you also have restless leg syndrome? I sure did, since I was 20. Not typical RLS, but then I'm not typical anything.

I've been walking into walls & catching desks with my hips forever. I just thought I was a puppy in a big dog's body. Where to stop & start with all the crazy reactions to everything. Feeling very overwhelmed.

I too have weird symptoms. I have nodes growing on my thyroid & a liver covered w/ little cysts. Thyroid functions apparently ok, liver off. - what else weird? I swear I've been weird since I was born.

Oh yeah, neck pain & back pain. I too thought it was from a car accident, well me as pedestrian vs. car, & the neck pain & jaw pain & joint pain & head pain and foot pain. All seemingly better Gluten-free Casein-free soy free.

p.s.

I also have funky fingernails. Ridges & spots & especially not so good post chemo. and all the other odd symptoms & allergies. injected Iodine. I love salt. I guess I should be iodine free. And all the bleeding episodes and the bruising and the bug bite allergies & the not wanting to eat anymore.

What about Hansen's natural soda. I'm confused about natural flavoring & flavoring some other kind, artifical? - one is ok? and one is not?

thanks

I wake up at about 2-3:00am . I feel famished. Like I'm starving. Either I'm hungry or thirsty or I need to go to the bathroom. Continues - post Gluten-free Casein-free soy f.

I want my sister to join this conversation. I just e-mailed her this page. She has been so sick for so long. She gained weight with chronic d. I lost weight, but thought it was due to stress. I spent my life savings on dental guards because I started breaking teeth (molars). I was sure I had a brain tumor - the headaches were that bad. Finally a diagnosis of TMJ. But the hair loss started years before that. I went to a doc & said - I'm going bald. He ran his fingers through my hair & said - oh yes you are. My hair lets loose too easily. He said I probably had a vitamin/mineral deficency & also rx'd rogaine. So I've alway eaten well, lots of whole grains, whole wheats etc.

I've posted else where & explained that I have been through medical hell. All my complaints, seem to be classic celiac. & in addition I most recently went through breast cancer treatment. Why did no one along the way consider diet? I did go back to all my old docs (new job - new insurance) & say - I think it is Celiac. But now I feel like I want to be on tv or in the paper. - it would have been so different, if someone had thought of this 20-45 years ago. How long have I been sick? It truly is hard to remember when I last felt well.

I do hope my blood work (post diet change) will confirm, celiac, then I don't have to wonder if it is simply a gluten intolerant. Because it would be nice to not have to be so obsessed with this, but I suspect Celiac disease is the culprit. I think it explains a life time of problems.

I think so because I feel that much better on the diet, and so does my sister. I want it all to clear up & go away. I'm terrified of poisening myself again.

I want my entire family to go gluten-free. I wonder if we all have it? So many bizzare & difficult symptoms. Anybody else share it with all their sibs &/or kids? The sister who is well again, called one day to say she had suddenly stopped clenching and grinding her teeth. I think mine is better too.

I also find the fatigue is lessoning, the brain fog is lifting, the pain is almost gone, the headaches are gone, the itching is improving, the vomiting is gone, the d/c is almost gone, the nerve flashes are gone, the freqent urination continues, the post nasal drip/ cough/ gross/ continues. The heartburn is gone, my irritation with people is lessening, the depression is lightening (though recent doubling of anti-depressants helped). I figured anxiety was part & parcel of all the prior pain & cancer. But maybe this entire journey can be explained by this self-diagnosis.

I continued to worry that it might be a plaseibo (how do you spell that?) effect. But when I glutened myself last weekend. I no longer had doubts. I can't have it. So Gluten-free Casein-free & soy free am I

bb22

how to do it & ever leave my house again????????

Wow - I so recognize my own symptoms. Only I'm 45 & have been doing this since I was your age. It started with my hair falling out, then lactose intolerance then headaches then TMJ & more migraines. I could never get off the couch I have been so tired. so tired. Then I started vomiting & getting dizzy spells. Then freak body pain, depression, lypoma (fatty tumor), toe then partial numbness in foot (that's how we found the lipoma) but by then it was both feet & both hands & my chest & my arms. Then nerve tingling up my legs then foot pain so severe I could no longer walk or stand. I did every know foot therapy & saw neurologists & dermatologists & reumotogist & cardiologist. I would say again & again I am not ok. At that point no one cared that my left abdomen always hurt and that I had alternating d/c - that was the least of my problems. Ultimately I begged for a wheel chair & they put me on neurontin/gabapentin - which allowed me to walk again. When the breast cancer was finally diagnosed I thought hallalujah I told you I was dying. Now everything will be better or I will be dead.

In hindsight, I think the chemo seemingly rebooted my entire GI track. It kills hair cells (why hair falls out) & it kills the gi from mouth to the other end, because those are the fastest growing cells in our bodies (i.e. cancer cells). The docs warned me that if indeed I had an auto immune disease that it might enjoy chemo. I was too sick to notice. But during radiation all the symptoms kicked in again. Except the migraines never really left anymore. - I became more depressed than ever. 2 years later. I'm still here & still complaining. Likewise, the sis just younger than I, has been sick for even longer. (well we both had med oddities as kids too)

Anyway it was that sister who figured this out. She tried the gluten-free diet and was Healed almost instantly. I thought that was impressive so I started in Nov 2005. I poisened myself last weekend & with in hours the migraine & vomiting were right back- the first since NOV! I have complained of every complaint on the symptom list, (except a couple - & those are suffered by my other sibs.) I think this is the answer we've been looking for.

Never however, until I started reading this site, did I realize how difficult it was going to be.

We'll see if my blood work, post diet (Gluten-free Casein-free soy free) shows anything. The itching oh the itching, it too is diminishing. I think back to how I had gotten to where I never used to want to eat. I was always famished, but I never felt good after eating. I had unknowingly gotten to where I lived on bananas & popcorn.

Going Gluten-free Casein-free it literally feels like a veil lifting. The grey cloud is lifting in my head. The thinking had been that some people take longer than others to recover from cancer. - But know so many symptoms came back the minute I ate that unidentified sauce & had a margarita. oh it was bad. Still suffering the effects. & then I ate beets & forgot I ate beets, so that is always a scare. What are night vegetables by the way - tomatoes & beets? I don't want to poisen myself any more. Now I'm scared of c/c everywhere I don't want to touch anything I don't know how to leave my house. Another friend has just reiterated how bad microwaves are for all food it apparently kills any nutrients in food - gluten-free or not. Good grief this is difficult.

I can't unzip any downloads from delphi & in text or mac or ...

So my question at the moment is - Is there a "print friendly" way to print out the collective knowledge on THIS site? I can't afford ink as it is, I don't want to repeatedly print the ads & the original message.

BTW I posted elsewhere asking for assistance locating a really good c/c list - it was here. - I think under FAQ additional things to beware of.

Thanks from long-winded.

BB22

It was the pain that kept sending me to doctors. It started in my feet & got so bad that I begged for a wheelchair. The pain spread and flashed everywhere. Before that it was the TMJ after that it was terrible migraines. Pain Pain Pain. Neurontin helped me walk again. Chemo helped & then everything got bad again. And the pain was now a dull roar & not a scream. I too had nerve condution tests. I've had one poisening since November. It was last weekend & I'm still paying for it.

I really think this is the answer for me. I do feel night and day different & I'm hoping it will continue to improve, because I still have some complaints, but am essentially pain FREE!!!!!!!!!!!!!!!!

bb22

Hi,

Wish I knew what "I so posted to this" meant? Does posted mean pissed? & are you talking to me? Did I offend? I certainly did not mean to. I wonder, is the blood work really do-able in 8 hours? & I wasn't suggesting that the tests not be run. I've just been in so many hospitals & it is hard to stop a rolling train. The work we all do to weed through the Medical system is hard work - ...... we do what we can.

Or maybe posted means - tune in? & I'm simply paranoid & full of angst. I am 45 & new to web lingo.

Hoping to hear that your Mom is recovering with or without the surgery.

bb22

If you want to try this route. (anti-depressants) You have to be willing to try. The first or second might not be right, but if you double the third's dosage that might be just the ticket.

A doc doubled my dosage about 3 weeks ago. Gluten-free Casein-free & soy free + anti-depressants have changed my life. Now, that the pain has abated, perhaps I can address the rest of my life.

BB22

Hi,

I too am in Seattle, north end.

Do y'all go to any of the local support groups? Or is this the place?

bb22

Hi,

I hope your entire family is hanging in.

But can I just say that a day before surgery is a hard time to make dramatic decisions.

What does your Mom want? What does your Dad say?

I am new to Gluten-free Casein-free (november) self-diagnosed. My sister figured it out for herself & I followed. We think celiac explains all the medical weirdnesses of our family, with my Mom leading the way. But to her, a life without gluten is not a life. So far, she won't even consider this as a possibilty. She however is nearly 70 & has been suffering since she was 20. For me it's been about 20 years & at least that many for another sister.

I guess I just want to say that I've recently been through a bunch of surgeries, for breast cancer. Hospitals ramp up everything. Do what you can do. You can only do so much.... And I know what my mother is like, though don't know about yours. Mine has strong opinons.

So I hope you all hug eachother & find answers along the way.

hug yourself (I'm told we should all get 4 hugs a day)

regards,

bb22

Hi

New to all this, both message boards and Gluten-free Casein-free (soy restricted). I want to print out all your good recommendations, but I seem to get "everything" - is there a print friendly version available for your messages?

Thanks

BB22

Hi

I'm new to this too. I've been searching like a mad woman. Gluten-free Casein-free soy-free since November, I gluttened myself this past weekend. Oh I Never again will doubt.

Like most of you, I am a new person on the diet. I found a great page somewhere on the www, I printed it & gave it away to one of my docs & now I can't remember where it was. A great listing of all the hidden cross-contamination potentials - i.e. the butter dish. Do any of you happen to know? I went back to delphi forum - & if there I can't remember where.

Any concise lists that I can put in my pocket, to go to the grocery store as well , would be most appreciated.

I don't cook. I'm living on a pot of gruel; morning noon & night. greens, rice, protein & ok soup stock. Fruit, and veggies. I hate corn tortillas. Why did I read cooked greens, but fresh spinach? All the cans of beans say "processed in a plant w/ wheat"... Then I read to be careful of scoops in bins of natural food stores. Do you folks buy beans & lentils dried & packaged & then wash them??? Do I wash dishes before I eat, when ever I am away from home? What about the keyboard that we all share at work. Do I have to ask them all to wash after eating the donuts? Am I mistaken or are my dried apples bothering me too?

Does anyone else have skin like tissue paper? Does anyone share this disease with many family members?

Hi. new to this site & message boards in general. I just posted somewhere under post diagnosis recovery/treatments. I'm not offically diagnosed - but - Gluten-free Casein-free diet since November has changed my world. Pain has always been one of my main & many complaints. Joint pain, foot pain, hand pain, TMJ, headaches, flashing pain, dull aches, shooting pain, nerve tingling. Most of which is gone. Had mystery sauce few days ago & terrible migraine that very night.

I'm new too. Self diagnosed, went Gluten-free Casein-free in November. I am a new person.l Ate questionable sauce two days ago & the migraine & vomiting returned that night. My story too long. Age 45, been telling "them" I was not ok for many many many years. I've seen zillions of doctors & had zillions of complaints. (I wish I could count how many times they told me to see a shrink, which I happily did). 2 years ago during chemo therapy the pain got better. Chemo works on fast growing cells, including hair & entire GI tract, so in hindsite it makes sense that the intestines were refreshed. Then radiation started & all the pain & depression and fatigue and headaches and constapation and diarreah and everything returned. Not surprised "they" all said. Things in my head got really bad. So up the anti-depressants and yada yada. BUT NEVER IN ALL THESE DECADES DID ANYONE SUGGEST DIET. My Entire family has not been ok. We've been seeking answers for so long, trying too figure out what it could possibly be. Sister, very sick for 25 years, went gluten-free this past summer & boom got better. I stopped & boom I was better.

I recently got a new job, which meant out of the HMO. My new internist did blood work for celiac, even though I was already on the diet about 6-7 weeks. She agreed, I sound like a classical celiac sprue. However she didn't think an endoscopy was necessary, rather a colonoscopy was in order? comments? I see her again in a few weeks.

She said she did not believe my entire family could have it, but I'm willing to bet. My brother just stopped glutten 1.5wks ago, we'll see. We want other sister to try, and how to get Mom to try? Life without bread is not a life...

But that is not my question. I want the down and dirty, food on the fly info. Who has done the research? Where can I get FREE information. all in one place? Please tell me what hand lotion, soap, shampoo, toothpaste, floride rinse, I can use? Do I really have to call the manufacturers?

I am currently Gluten-free Casein-free & soy free (due to breast cancer). How do I find out if my cancer drugs have hidden binders? What candy can I have? I heard star-burst ok but not licorice? true? What do you pack for a road trip. I also heard McDonald's french fries are ok. I figure breakfast must be the safest meal out. Eggs and greens & fruit. But what to do in a Thai restaurtant. Soy & vinegar must be in everything including the rice? I'm eating the same thing for every meal. A vat of gruel. Soup & veggies & greens & protien & rice. If I'm only slightly lactose intolerant can I put butter & yeast & salt on my airpopped popcorn. What's the problem with herbal tea, all herb tea? What's ok. Tell me what brands. I realize the new labeling act is a huge blessing, but do I really have to worry about crumbs? Are you kidding me. Can I have a margarita or a scotch, obviously beer is out. What about Tobasco sauce?

Please provide more info - i.e. someone mentioned a delphi list - what's a delphi list & where does one find it?

Thanks