deesmith
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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995
Everything posted by deesmith
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I agree with you. I think until you have other tests, you won't know how to get better. I had lots and lots of blood tests before the biopsy, etc., but my calcium levels were never tested. I didn't not know I was deficient in calcium until my specialist ordered this test (I had the opposite problem, my regular doctor wouldn't order certain tests)....
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This is a great idea. Thanks. I'm considering this. But if he tests positive we'd have to get further tests done anyway. So I was thinking about skipping this part and starting with the blood test. But I don't know. $150 is a good start and then we'd at least know if it's in his genes or not. I might look into this. Thanks.
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I won't put my son through another blood draw right now but next time he need blood drawn for anything I'll make sure they do a gene test. My sister's doctor wouldn't test her and she is very sick and clearly has symptoms so I helped her find another doctor.
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Thanks for all your replies. I'd like to go in and "educate" the doctor with information. But I think my first plan of action is to call the new doctor that I just switched to. I went to him to have some tests run (like bone density). He thought I was going to him for the initial celiac test (which I'd already had) so he gave me his little celiac speach...
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I am so upset today! My son (19) is home from college for the summer. I thought it would be a good time to get him tested. I called his doctor last week and left a message with a nurse to see if we could get my son in to get him tested for celiac. I told them I was positive. She said someone would call back. They never did. I called today...
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ARCHIVED Please Help Me Find Out What Wrong With Me
deesmith replied to whattodo's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
Somebody said that it is rare to get a negative biopsy if you have celiac disease. Not so. It isn't rare at all. It is actually quite common. Dr. Peter Green told me this. But he also said all the other stuff I wrote. He gave me reasons why it's not impossible, such as the lab screwing up, etc. He diagnosed me even though my biopsy was negative. ... -
ARCHIVED Please Help Me Find Out What Wrong With Me
deesmith replied to whattodo's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
Hi, Jay: Everybody is different. For me, there were many factors involved for me wanting to know if it was really celiac or something else. For instance, I have a sister with Lupus. I wondered if undiagnosed celiac disease caused her Lupus or not. I wondered if the entire family should be tested. (And that's just one factor) Anyway, you said... -
ARCHIVED Think I Have Celiac - How Do I Get My Doctor To Test?
deesmith replied to allysmom's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
Right-- as tarnalberry posted to you. Also, you'll see "cc" everywhere. just in case you didn't know, it's cross-contamination. It's a really big deal for us. For instance, at first I forgot to buy a new toaster and wondered why my gluten-free waffles made me so sick! I learned the hard way how cross-contamination (the leftover bread crumbs in my old... -
ARCHIVED Think I Have Celiac - How Do I Get My Doctor To Test?
deesmith replied to allysmom's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
Throughout all these tests, my dr. remained convinced that I have IBS. This is typical. Many of us have been diagnosed with this or misdiagnosed with this, including me. My symptoms are left upper abdominal pain, bloating, flatulence (lots of it), and tiredness. Although these may be from other conditions, these are typical symptoms of celiac... -
ARCHIVED Can Everyone Post Their Genes
deesmith replied to confused's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
Having two copies of a gluten sensitive or celiac gene means that each of your parents, and all of your children (if you have them) will possess at least one copy of the gene. Two copies also means there is an even stronger predisposition to gluten sensitivity than having one gene and the resultant immunologic gluten sensitivity or celiac disease may be more... -
ARCHIVED Can Everyone Post Their Genes
deesmith replied to confused's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
It's a genetic panel test. You can ask your doctor about it. But I would be concerned with which lab they chose to send it to, some are more reputable than others. -
ARCHIVED I'm Going To Give Up Eating
deesmith replied to isiskingdom's topic in Coping with Celiac Disease
Happy anniversary. Sorry to here you are still so sick from eating. It took me quite a while. I've been gluten free for maybe 7 months. But I don't think that's a true number because I messed up a lot for at least the first 2-3 months. I found that the most difficult things are hidden gluten and cross-contamination. I've also found that I'm very sensitive... -
ARCHIVED Constip/anemia/fatige Etc.
deesmith replied to sashamay23's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
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ARCHIVED Genetics Test Results
deesmith replied to deesmith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
Thanks for your help! That's interesting to know. -
ARCHIVED Cheek Swab Testing
deesmith replied to clh's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
Hi, I can't answer you the testing your child part. My children are 24 and 19 and I have talked to them about doing testing, but we have to figure out insurance stuff first. But on the Kimball Genetics, I can tell you that Dr. Peter Green from the Celiac Center at Columbia Univeristy uses them. They have a 1 day turn around time (but it took me... -
ARCHIVED Genetics Test Results
deesmith posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
I'm just curious about my genetics test results and was hoping some of the experts here could help me. I know they are positive for celiac disease, because it says that all over the printout. But, I want to know a little more. For instance, someone on the board stated something once about being a Double DQ2. Here are my results: DQ2 ... -
this is off the subject, but I just thought I'd mention that your user name caught my eye. My family is from Ireland and their last name is Davey. (but I'm sure you use it because of David) Anyway, I like your user name and icon!
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Yes, we're glad to see your post today. Glad you made it to work. As hard as it is, sometimes we have to cut people out of our lives in order to cope. In time, I'm sure it will make you a stronger person. It's just so hard while you're going through it. But you're not alone. As you know, this board has some really supportive, caring people. I'm...
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Are you still online? Are you okay? If you want to talk to someone I can give you my email/instant message address. Just let me know.
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Oh thank God I'm not alone! I felt so stupid the day I saw Dr. Green at the Celiac Center. He asked how old I was and I said "I don't remember, 43 or 44, one of those! haha-- so glad we can all laugh at ourselves here!
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Hi, To me gluten-free means no gluten ever again. Just to add to what others have stated: According to the Celiac Center at Columbia University's "The Ulitmate Guide to Gluten-Free Living" the host in which there is less than 0.01% gluten is below what is considered gluten-free. These hosts can be obtained from the Benedictine Sisters of Perpetual...
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You're right. Thanks for the advice. Today I told him about hidden gluten like in "natural flavors". He seemed interested and intrigued. I just need to calm down and be more patient with educating people around me. I've just been getting frustrated lately. I used to be so mellow!
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Yeah, I thought it was a stupid question. Your answer makes sense. Thanks!
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I changed PCP because, as I posted on another topic, my former Primary Care Physician would not do the tests that Dr. Peter Green ordered. So today I saw my new doctor. He seems ok, and he said he'd do most of the tests, so I guess I'll keep going to him, for now. But I did have a minor issue with him: He started to tell me about celiac disease and...
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Thanks everybody for your support! Today seems to be going better. I agree with Margaret, I do think I have a good boss and she will come around. It takes time. I had my appointment with new PCP. I just got back and stopped by home before heading back to work. It went ok. He's going to order the tests that Dr. Green ordered. In fact, he drew...