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to the Team!
I tested negative on the blood test so I assume I have a gluten intolerance vs Celiac. I have been 2 yrs GF now .
If I get gluten, I'm a sorry, miserable puppy for a few hours.
Dotslady, thank you for the encouragement. I am hopeful! I'm actually taking fish oil, magnesium, B-complex, D vitamins... They're all helpful, particularly the magnesium for reducing muscle spasms (and therefore helping me sleep better!)
I am sure that I will be needing support and advice so I'm really, really glad I found you folks!
I think my fibro toned down a bit last week. Today, my headache is back, I'm not as well-rested, I feel run-down and I'm hurting a lot. I did feel better last week (off gluten), even fibro-wise.
Charity, I hope I follow your experience. Right now, I'm back on Gluten -- hoping to get tested soon. I was only off for a week. My asthma is really challenging, I feel lousy, I was actually itchy when I had a muffalata sandwich (lots of bread). I'm trying to eat more moderate amounts of gluten for awhile instead of loading up like that. I feel a mild revulsion when I eat gluten foods now because I know they're going to make me feel badly. I'm going to see if I can't get in to get my tests this week. We'll see if the doc says it's too soon. I just don't like struggling with my asthma if I don't have to.
It is worse, after being off for a week... to start eating gluten again. You're right.
Hi, I read your post. It sounds more like full on Celiac disease. I am undiagnosed because I went through tens years of misdiagnoses. When I stopped, I felt amazing, lost weight and had boundless energy. The thing is when you go on a GF diet and your body reacts positively, any gluten in the future will set off symptoms worse than before. I always know when something is contaminated with Gluten. My face breaks out with these dry itchy spots. It is hard but I love living symptom free, with that being said if you can get the Celiac diagnosis, get it first. I have read it is a tax write off.
I was dx with fibro almost 20 years ago and with gluten intolerance a little over 10 years ago. Going GF has not had any real affect on my fibro. My flares are very much tied to weather, temperature and stress.
I've just begun treatment with a Network chiropractor and that does seem to be helping somewhat.
Oh, yes I CAN!
I have fibro, too (self-dx). Before I was CD dx, my body screamed in pain and I couldn't sleep - esp if I overdid it. I was trying to lose weight with a trainer and never seemed to get my muscles to stop aching even after the "2 week" break in period where it's supposed to get better. I didn't know I had CD, I certainly never thought about fibro at that point. The sheets on the bed hurt. I also had Restless Leg Syndrome and never slept. You know the drill.
After CD dx, the gf diet helped SO much. So did getting adequate vitamin D, sunshine, adequate iron and all the other vitamins. Since I dx myself with fibro after this recovery, I can't say if it was really fibro or some other type of myalgia or myositis ... I can tell you it is affected by depression or lack of serotonin, however, and THAT is very fibro from what I've been reading. I'm having another hard time w/keeping up my serotonin by getting enough sleep. I know it helps.
I can tell you that gf diet and getting nutrients has alleviated most of my body-wide pain, and what's left of my pain is in the largest muscles: my hams and quads (which prevents hard workouts or jogging, and this makes me depressed a bit! what a vicious circle). I just went to a more holistic doc who recommended "Myer's Cocktails" ( en.wikipedia.org/wiki/Myers'_
cocktail which coincidentally, I'd read on another site for dysautonomia. I'm taking a lot of supps, but maybe my body needs more. I see a muscle specialist/neurologist next Friday.
Anyway, gf diet is helpful to help fix a leaky gut - as are taking out other food allergens. Elimination diet is helpful to figure out offending foods. I'm working on taking out dairy, which I wish I'd done years ago now that I've been reading ...
Re: asthma. Can tell you I've read that it might have to do also with avoiding allergens, and also with gut pH - and the foods you eat affect gut pH. You might also want to check into taking cod liver oil or omega-3 oils, magnesium, ... so many ideas help different people. DH has asthma; his mother was celiac. His bro has celiac and asthma, also, but they are not actively pursuing help. I keep my eye on info for them though, and that's what I've come up with.
Keep a good thought. I have overcome a lot; more to come, so be encouraged. ;0)
Recently went to listen to holistic doc who suggested for healthy gut: no gluten, no dairy, no sugar, no alcohol, no caffeine. fyi
Edited by: DOTSLADY at: 6/13/2010 (12:42)
KNOWLEDGE = POWER. BODY = TEMPLE. FOOD = MEDICINE. PREVENTION IS THE CURE. YOU ARE WHAT YOU ABSORB!
One person's food is another person's poison.
Celiac Disease: An autoimmune reaction from eating gluten grains: wheat, rye, barley and contaminated oats=nutrient deficiency=cancer. Have 1 of 300 symptoms? bit.ly/cdsymptoms
CD stories: bit.ly/cdstories
Hi and welcome to the team.
I'm allergic to mold, so that makes some sense! I wonder if pasta would be the same thing. I'm going to try some pasta tomorrow, I think, and try to observe my reactions. I know that if it is an allergy, the system kinda gets REVVED UP and can respond to just about anything.
Do you happen to know anything about how your uncle found out that's what was going on?
I'm so glad to hear what you said about fatigue and pain. Right now, fatigue is my biggest issue. Lyrica was controlling the pain but it was making me so, so drowsy in the daytime (I take my dose at night). I was also (predictably) gaining weight on it. I think I'll take a brief break before I switch to Topamax unless I'm in a lot of pain when I stop the Lyrica. I want to see if the gluten-free diet is enough to help me avoid adding a med.
Doc wasn't thrilled with giving me Topamax, either, but I could stand to benefit in a few ways -- the daily headaches (which were lessened with gluten free) and seeing if it helps me sleep or gives me energy (different things for different people), it can help with weight loss and my PCP said I may have simple partial seizures -- we're not sure. I will see a neurologist at some point soon who specializes in seizures so I may be learning a lot. Maybe.
Thank you for your reply. It was very helpful! Please, do PM me. I do a lot to manage the fibro pain (besides meds) but I'm glad to trade ideas. I got this awesome massager from Brookstone to work on spasms... unfort, I had to pay $50 but I'm glad I did.
My uncle had a situation where he was so allergic to bread molds that he had to avoid wheat and other grains to control his asthma, it's possible that your have the same type of thing.
Also, I've tested negative for celiac, just antibodies no endoscopy, and I also have fibromyalgia. I had gotten most of the pain under control actually with a lots of yoga and stress control techniques, but when I went gluten-free I noticed a drastic increase in my overall fatigue levels (I was already taking a tricyclic antidepressant at night which helped a lot but not completely) and some in my pain levels. With the combination of things I do (which I'd be glad to discuss privately by sparkmail if you like) I almost have no fibro symptoms anymore.
No day but today ...
-Jonathan Larson - Rent
"You have to laught at yourself, because you'd cry your eyes out if you didn't"
Emily Saliers - Indigo Girls
Co-Leader of Project Mayhem
Co-Leader of Living Healthy with Insulin Resistance/Low GI Diet
Nobody in my family wants to get tested. They think if they don't pay attention to it, it's not there. My aunt, uncle and mother all have/had bowel issues. My dad had bowel issues he doesn't tell doc about.
Another relief I had this past week was that my fibromyalgia was so much calmer. I don't know if I was having a good week because it's summer. It's hard to say. Winter will be the true test. I had fewer aches and my headaches were really, really mild to sometimes non-existent.
I wish the fibro would go away with this. Folks with fibro have a tendency to want to find other things to explain their symptoms because it's really a bizarre constellation of symptoms and medical help is somewhat limited. However, I'll certainly settle for less pain and fatigue. That was quite a pleasant surprise.
Hoping it wasn't just a good fibro week when I was gluten free -- hoping I can look forward to some relief.
Today, my pain is revved up a bit and I took a rare nap. Usually my meds don't allow me to nap, which is OK. I'm tapering off Lyrica so there's a chance my increased pain is from that.
Things aren't simple. I'm so, so glad to hear from folks. I have so many loose puzzle pieces in my life right now. I'm being sent to a neurologist by a neurosurgeon who suspects I may have increased spinal fluid pressure and I may need a spinal tap. I freaked out and tried to get out of making the appointment but they said I should. I hope that I can report a consistent decrease in headache symptoms -- I might be able to avoid a spinal tap. It all seems so drastic. I saw the neurosurgeon because I apparently have mild Chiari malformation but he confirmed it's non-surgical (but that I have symptoms).
So, I'm just glad to talk to folks. Eager to learn from you all. At times, things have gotten kinda scary lately and I don't feel like I'm in the driver's seat when it comes to my health issues at times. The gluten free diet actually helped me regain some sense of control once I realized it wasn't impossible.
I think whether you test positive or not, being GF would be a good thing for you. I have never been tested, but being GF helped with skin allergies and itching, as well as intestinal things. I have been GF for several years. This year, there are 2 confirmed cases of Celiac in my family, including my sister. I know I feel better without it. I don't plan to eat it again by choice.
Life isn't about how to survive the storm, but how to dance in the rain.
"Even on the days you just don't feel like going to work, you still go, right? It's the same with exercise." -Professional Volleyball Player Gabrielle Reece
Remember, we all stumble, every one of us. That's why it's a comfort to go hand in hand. - Emily Kimbrough
The cure for anything is salt water - sweat, tears, or the sea. --Isak Dinesen
I think gluten can cause an overall inflammation, which would definitely effect asthma.
Edited by: SFISHOME at: 6/12/2010 (18:14)
Hi folks. I'm wondering if I have gluten issues. I tested negative in the bloodwork (twice). I also had allergy testing for a wheat allergy a few years ago and was negative.
However, last Saturday, I listened to the dietician and started a gluten-free diet. I was gluten-free for six days.
During those days, my asthma improved and I had less sinus congestion. I lost five pounds without trying, I wasn't as hungry, I felt less bloated, and generally just felt better. What DID happen was that I had more issues of constipation instead of loose stools, but I guess that was just an adjustment.
On Friday, I decided I wanted to let the doc do the endoscopy (and colonoscopy) that I'd put off because of my asthma. So, I called his office and I'm going to hear back from the nurse on Monday.
Knowing that I have to be eating like I was before I started the gluten-free diet, I decided to start off with a bang -- a big muffalata sandwich (lots of bread). That was lunch. Two and a half hours later, I feel some intestinal bloat, my skin is ITCHY (!!!!?), I'm puffing up like I'm retaining fluid (Er??? Just a bit, on my arms for instance)... I go home and feel like lying down. I wake up five hours after lunch (about 2 hr nap), am slightly gassy, still itchy, and I use my inhaler while I'm just walking around the apartment -- not doing much. But the weird thing is, my mucus membranes in my nose feel swollen -- I am having a harder time breathing through my nose.
Can anyone relate to this? My asthma is pretty severe -- very reactive. I know that gluten sensitivity isn't an ALLERGY as such, so that's where I'm feeling confused. Thank you SO much! (Oh, and how long do I need to be eating breads and such before I can get the endocopy/small bowel test done??? -- I was off gluten only for SIX days).
Edited by: GREYBEH at: 6/12/2010 (18:09)