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sroggio added a topic in Gluten-Free Foods, Products, Shopping & MedicationsProsciuttoDoes anyone know whether prosciutto is gluten-free? I believe the prosciutto I've had is the prosciutto di parma, with only salt and pork listed as the ingredients. But I've had a reaction the last few times I've had prosciutto, so I was just wondering if anyone else has had problems or knows whether some prosciutto is not gluten-free.
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sroggio added a topic in Celiac Disease - Post Diagnosis, Recovery/Treatment(s)Gluten Intolerance Vs. Celiac Disease?Hi all,
I'm new here, and here's my long story ...
About 18 months ago, out of the blue, I started having vaginal pain during sex (sorry to be graphic, but this is the condition that led to my discovery of a problem with gluten). After several doctors, tests and creams that didn't relieve the pain, I was referred to a specialist who diagnosed vestibulitis.
Not much is known about the cause of vestibulitis, but one theory is that it's nerve damage (infections were ruled out by other tests). So, my doctor put me on a low dose of an anti-depressant called Imipramine, intended to help reduce any pain from nerve damage. I also introduced some hygiene changes, such as switching to fragrance-free soap and laundry detergent to avoid any irritants.
The pain went down, but it didn't go away completely. About six months ago, this specialist referred me to a physical therapist who specializes in pelvic pain. She helped reduce muscle pain that had developed throughout my pelvic region, but it didn't really do anything for the vestibulitis pain. But, she's the one who suggested I see a nutritionist when I told her I was frequently constipated (she pointed out this was only adding to the overall pelvic pain, so it would be a good idea to try to solve the problem).
Through blood tests, the nutritionist determined that I had a low red blood cell count and wasn't properly absorbing calcium, magnesium and iron. I also had an abnormally high level of c-reactive protein (4.5 mg/l; normal is 0-1 mg/l), which suggests an inflammation in the body. She suggested I go on an 8-week gluten-free, yeast-free diet (including no alcohol), and had me start taking acidopholus, a multi-vitamin and magnesium supplements daily.
A few weeks into the diet, I realized that my body felt different. For the first time ever, it seemed, I started having regular BM. A number of other symptoms I had been noticing also went away -- gas, bloating, tingling in my feet. After the diet, my c-reactive protein level was 1.7 mg/l.
I decided to get a blood test for celiac disease, and went back on gluten for the next two weeks. In addition to the gas, bloating and tingling coming back, I also experienced other symptoms that I realized I'd had before -- sores on my tongue, excema on my face, muscle cramps in my legs, pain in my lower back/hips/knees. During the 8-week diet, I read a lot about gluten sensitivity, and discovered that the dental defects I have in my teeth and the fact that I've always bruised easily are also common signs of this problem.
I tested negative for celiac disease, but I decided to go back off the gluten to see how I felt. Within days, the symptoms began to disappear (except for tingling in my feet, which I get anytime I have alcohol. I've also found I get ringing in my ears after alcohol.). My husband was having a hard time believing me, and I wanted to confirm it for myself, so I decided to order a stool and gene test through Enterolab, which tests for antibodies solely in the intestines, not just in the blood.
The stool test came out positive for gluten sensitivity, with an antigliadin antibody level of 133 units. The gene test came out positive for the HLA-DQ3 gene, which Enterolab said predisposes to gluten sensitivity. They said I do not have either of the genes primarily associated with celiac disease, HLA-DQ2 or HLA-DQ8.
So ... my questions are: Has anyone else here tested positive for gluten sensitivity only, versus celiac disease? Does anyone know what this means? For example, does that mean I'm at any less risk of damaging my intestines by eating gluten than someone who's been diagnosed with celiac disease? How "gluten-free" do I really need to be? I am feeling better by not eating gluten, and I have noticed spikes in the vestibulitis pain if I accidentally eat gluten, so I think there is a connection ... although the specialist I'm seeing has never heard of one.
My primary care physician does not have the answer to my questions and has referred me to a gastroenterologist who specializes in malabsorption. But, he's not available until mid-April. I'm trying to stay as gluten-free as possible, but it's been frustrating for both my husband and me -- especially when dining out. At home, he thinks I shouldn't worry about things like toasting my gluten-free bread and his wheat bread in the same toaster. And my answer is, I don't know, but better safe than sorry.
If anyone has any insights into gluten intolerance vs. celiac disease, I'd love to hear them. I'm also curious whether any other women here also have vestibulitis/vulvodynia. A couple women on the vulvar pain listserve I'm on have the same gene I do, and we're starting to wonder whether there's a connection ... Thanks so much for reading this long post, and I promise to be more brief in the future!
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