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Member Since 28 Apr 2010
Offline Last Active Jun 04 2015 05:53 PM

#814500 Some gluten-free Bread May Not Be Gluten Free!

Posted by on 28 July 2012 - 08:22 PM

I will try and find out.It did not say "ALL" research. You must admit, there are many (many) celiacs following all the rules and still suffering. You bother, as I do, to understand what affects us negatively and positively. You are correct, medical research recommends the gluten free diet. The question is, is corn gluten free?

Osborne, from the gluten free society, is not only saying that corn is bad, he is saying that ALL grains are bad, including rice, quinoa, etc. I get his updates all the time but he charges a heck of a lot of money to join his Gluten Warrior club. I kinda resent that because he is making alot of money off of what he says the medical community is not telling us, which is his angle to get people to pay his yearly registration fee plus the monthly charge... I think its an insult really.
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#755213 Peripheral Neuropathy

Posted by on 09 December 2011 - 08:16 AM

Darn it! I have had so many of these symptoms, why couldnl't I have the "loss of hair on legs" one??? :D A forst still grows :blink:

interesting. I posted a topic a few days ago asking if I had MS because I have experienced most of the symptoms for the autonomic system.

I have had bladder issues, reflux, no hair loss on legs but definitely brittle and ridged nails (toes mostly).

I really like my Celiac doctor but I have to admit something that really bothers me: I continue to experience these symptoms and when I ask my doctor
if it could be related, I am told no, because all of my antibody tests are now in the normal ranges.... Now, does that make any sense??? as if 40 years of being undiagnosed with celiac, suddenly all of my problems are gone with no residual or lasting damage in the nervous system etc.??
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#723359 Brand New

Posted by on 16 August 2011 - 05:55 PM

I am just beginning to think this is where I need to be. Would someone please describe to me how you felt just before you were diagnosed? What symptoms brought you to the doctor?
I have an ultrasound cooking. Waiting for results but my gut (ha ha) feeling is Celiac or at least gluten intolerance.
Thank you.

Hi Peg,

welcome to the forum. I was diagnosed with Celiac through biopsy via Endoscopy. I had suspected Gall Bladder disease or a possible ulcer due to pain in the upper right quadrant. I was surprised when the diagnosis came back with celiac.
My only indications of celiac were an increase in bathroom visits beyond my normal bodily schedule. Other symptoms that were involved were nausea, anxiety, panic attacks and rib cage pain from bone loss.

as to your ultrasound, what is your doctor looking for with that procedure. Duodenal biopsy will reveal villi damage and determine if you have antibodies indicative of celiac, in addition to the blood test.

any questions, just post. hope this helps.
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#721262 Undiagnosed For So Long…What Can I Expect?

Posted by on 06 August 2011 - 10:12 PM

Hi all, Thanks to anyone willing to tackle this. Just diagnosed 3 wks ago (I'm 45), likely this has been going on since childhood…was always referred to by family and friends as a hypochondriac even though this MORTIFIED me. I felt like I was a warrior, strong, overcoming each new and constant physical and mental hurdle that was inevitably placed before me. Not a fun thing to go through…and it went on for so long that I've had years of chronic hives, bouts of IBS, crippling GERD and reflux, chronic sinus and other inflammation problems, stomach ulcer, lactose intol, chronic plantar fasciitis, low immunity so I catch everything, brain fog, fatique, loss of concentration. Doc says that because it went unchecked for so long, I've likely got Hashimoto's and have developed a host of other food allergies.

So, given that it's only been 3 weeks, I'm sane enough to realize that I will not be one of the "overnight relief" people with the glorious lifting of any and all symptoms 3 days into gluten-free diet….but I'm hitting the point of being a bit depressed over the multitude of things I'm dealing with, now that I'm acutely aware that they are NOT all in my head. It's like I have the freedom to actually admit that all these things are happening, they are real, and hopefully will now clear up with some time and energy. But it's a lot to take in. (obviously, part of "dealing" was a serious dose of denial! :blink: )

I don't have another visit with my new doc for a few wks (he confirmed all this on first visit, with all my bloodwork and tests in hand, sent me away with basic info and a good bunch of helpful supplements and said he'll see me in 5 wks) for awhile, so I'm hoping to hear from others here who might have started their journey in a similar spot. Wondering how long it might be before I notice any kind of a change…what to expect. I'm 45 and feel like the last 20 years were pretty much a blur except for the very lucky times I was in the care of people who were incredible healers (but still didn't know it was Celiac).

Can anyone share any advice or wisdom with me to get me through these few weeks. I'm also smart enough to know that after the initial ELATION of finding out I was not insane and that all I had to do was rid my diet of some irritants, I am now experiencing a bit of normal low….but it would still help to hear what the next year might hold for me…

Thanks for any input!

I was diagnosed at age 48. I had to push for alot of tests after doing my own research. I asked my doc to run blood work to test for vitamin deficiency. Major Vit D deficit which took a year to resolve. 50,000 IU's twice a week for 6 weeks finally pushed that up to normal levels of D. also, had osteopenia and I was always into working out etc but the inflammation was blocking calcium and vit D as well as other essential minerals to build bone, so make sure your bones are ok and your vit D level is ok.
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#684011 Extremely Vivid And Weird Dreams Since Diagnosed?

Posted by on 16 March 2011 - 06:13 AM

Hey guys! I've been having REALLY vivid dreams of me being pregnant, and having children, :P and I've also had a few where I'm being chased by murderers! :o ever since I've been diagnosed.
I literally wake up every morning exhausted by these dreams, does anyone else have really weird dreams?

I have had those dreams all my life too from early childhood into adulthood. My crazy dreamlife just started up again after dx last april. Now my nightmares are of forgetting I cannot eat gluten and freaking out after eating a bowl of pasta or a slice of pizza and then realizing in horror what I had done. I usually collapse in the dream overwhelmed by fear of the gluten reaction.... argh... hang in. its good to talk to someone about it if they continue.
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#674128 Still Having Bad Cramps

Posted by on 10 February 2011 - 05:06 AM

So I've been diagnosed with celiac for 3 weeks, and all my symptoms have seemed to get worse since I've been gluten free,
is this normal? :)

Yes. I was dx'd in April and got worse after that. My advice it to stay away from milk and dairy for awhile depending on what level damage you have to the brush border of your small intestine. I wound up getting used to the Pacific brand of their Almond drink. at first it is just awful but I have gotten quite used to it now and it satisfies my milk cravings.

but sorry to say, all my symptoms got worse for several weeks after going gluten free. Just because you stop ingesting gluten doesnt mean your intestines are healed and the toxins will leave your system immediately. it takes time to repair, but you WILL get there!!
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#665688 Who Else Just Went Through Their First Holiday Season Gluten-Free?

Posted by on 05 January 2011 - 06:04 PM

It was pretty good here, my roller coaster of emotions hasn't calmed quite yet, but my family is awesome!!! Thanksgiving and Christmas were at my Dad's and he is wonderful about my diet, he made roast beef for me and made sure no one touched anything until I got my plate. Your right the dessert part is tough, oh how I miss those wonderful sugar cookies made with white flour. I did make pumpkin pie though, I just didnt have a crust, and you know what....who cares the pumpkin with whip cream was fantastic. Also money is pretty tight so I just started researching cookies and cakes without flour, I have made peanut butter, peanut butter chocolate chip (these are amazing!!!!), no bake cookies, monster cookies, and a flourless chocolate cake that is pure heaven.

This holiday season was tough, and I was feeling pretty sorry for myself, you know how it is with the restricted diet and the huge lifestyle change, but everyday I feel better, I have a husband who loves me and takes care of me, four beautiful daughters, and a sweet grandson who reminds me everyday that I am loved. So here is to a new year filled with new beginnings, healthier bodies, and a whole lot of happiness!!!! We deserve it :)

This was my first Christmas gluten free. Being a bachelor who ate out ALOT, I used my stove for the first time. yes, it's true. My sister came up from NC and she prepped the turkey for me so all I had to do was put it in my oven. I am glad to know that my oven works.... haha. The rest of the family chowed down on stuffed turkey and the typical Italian meal before the turkey which consisted of homemade ravioli's. Oh well. I found some gluten-free ravioli for Christmas. I also cooked the turkey here for Christmas and had friends over. So in a way celiac has opened my horizons!!! :)
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#656084 How Long Did It Take To Start Feeling Better

Posted by on 24 November 2010 - 03:48 PM

Welcome Dennis429!
It is good that you have had some relief. Everyone is going to heal at a different rate. Be patient it will come.
Were you diagnosed with celiac?
One of the things you might need to do in the beginning, while you are healing, is to remove dairy and possibly soy too and don't eat too many processed gluten free foods.
Make sure to come here often and ask lots of questions.

Hi Dennis, welcome to the forum.

I was dx'd in April. I felt worse for the first few months after going gluten free. It's like your system is screwed up and it takes time to peak before the auto immune response starts to settle down. So just hang in. One week is only the beginning unfortunately... but i am doing SO much better but it took until the 5th month mark.
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#645993 Celiac With/without Fibromyalgia (And Canker Sores Too!)

Posted by on 13 October 2010 - 08:37 AM

I have been living gluten free for 3 months now after being dx'd with Celiac. Prior to the diagnosis, my primary care doctor was treating me for possible fibromyalgia with meds for the pain, muscle relaxers and sleep aids. I was really hoping that the change in my diet would "cure" the fibro, as alot of the Celiac symptoms are the same. I finally went back to my primary dr, because the increase in aches and pain, plus the lack of sleep has actually gotten worse. My stomach symptoms have gotten better.

I know that she is not an expert in Celiac, but she thought that the symptoms I have could still be Celiac related. Because it is an autoimmune disease, as your body is ridding itself of the antibodies, she thought that you could actually feel worse before you get better. Apparently this happens with people with Lyme Disease-as they take meds to help rid themselves of the disease they get worse.

Regardless, she gave me some new meds for the sleep and pain, and a referral to get some more PT. I am just curious if others had Fibro and had a similar experience or not. Any information would be helpful.

Also, I am having an increase with my canker sores-enough to warrant a prescription to get rid of them faster. I have always been prone to them, and then I learned they can be a symptom of Celiac. But instead of getting fewer, I am getting more. It seems like I always have one brewing.

I feel like I have been pretty good about avoiding gluten-but maybe I need to take a 2nd look.

I suffered from canker sores for years.seems like every month I had a horrible one that needed to be burned with silver nitrate.
I have found great success with a brand of toothpaste that does not contain SLS (sodium Lauryl Sulfate) which has been shown to be an irritant. the canker sore formula toothpaste I use is expensive but it has been such a blessing to not suffer from them anymore. I started using the toothpaste long before I knew I had celiac by the way... so maybe check into what is in your toothpaste or mouthwash.
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