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About mari-lyn

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  1. Yes, as a dietitian and also as a close family member with celiac disease (actually 4), I am aware of the problems and especially concerned with young people and teens. There support is needed...hope we can meet the challenge. Just an FYI..the patient was referred to counseling ...with the added assurance that the Dx. of celiac disease was part of the Dx. Fortunately the therapist is open to dietary diagnosis.
  2. Not sure where to post this problem but I am sure there are doctors caving in to patients that refuse to go gluten-free. I am a dietitian working in a Critical Access Hospital ( that means we are a rural hospital with no more than 25 beds - our average patient count is around 8). There is a woman that has repeatedly been admitted with migraines, nausea and vomiting...also small bowel obstructions. She told me one year ago that she was diagnosed with celiac disease. Today, she said that she tried the diet for 2 months and gave up - it did not make her any better. She has given statements to her doctors (a new one about every 4 months) that it is not celiac disease. I called her GI specialist that did the initial diagnosis...just to get documentation. Yes, blood tests are positive and the biopsy was "suggestive" for celiac disease. The current doctor is not ordering a gluten-free diet because the patient it telling her she will not eat it. Now, if a doctor knew that a pill would be toxic to a patient ...would they give the OK to give it to her? On another level I am very mad... that she is in denial...not only for her own health (she is 41)...OK...but her frequent ER visits and hospitalizations are costing lots of money. They did a CT on the head today ... Ok, I am venting and frustrated but this process has helped me. I am going back to her (new) doctor who is very open to my comments, and present my case....let me practice..."If a pill caused your patient to become very ill would you continue to let her take it?.....
  3. I will see if my sister still has an article written by a Mom of a Wisconsin student and how she handled the food service. My niece has celiac disease and Type I DM and just went away to college. Will post if I can get that from her again.
  4. Margaret and LaVern? Yes, we also go to church with them. October we are meeting for a potluck on Thurs. Oct 19th at 6:30. Whole foods like fruits and vegetables are a great addition. One fellow is assigned lplain potato chips. The hospital provides a meat and we usually have lots of food. Otherwise our meetings are the second Thursday of each month. Sometimes we take Dec. off. Starting at 1:00 they last about an hour - an hour and a half. No, we do not bring anything, though Margaret usuallly brings something to share and sometimes I make a sample of something that I might have found. But it is not a lunch. That would be great! I haven't looked here in a few days...sorry for the delay. Hope to meet you soon. Marilyn PS. If we have new members we share stories and introduce ourselves. Get caught up on any challanges from the previous month. Update with any new research....
  5. Our support group in Anamosa has about 20 people on the mailing list with 6 - 8 regulars. If interested please contact. Potluck, Thursday, Oct. 19 at 6:30 at Jones Regional Medical Center. Nov. - 2nd Thursday of the month at 1:00. We take off December and resume 2nd Thursday in Jan. at 1:00. The Annual All Iowa conference is next weekend at the Aegon building in Cedar Rapids. I do not have the email address with me (it is at work) but if interested, again send a reply and I can forward the information to you. Marilyn
  6. Thanks for all of the info - especially the % - etc. Glianid Anibodies (IGA) - 4.1 Reticuluin AB negative (no numbers) Tissue Transgultn 5.6 (range 0 - 30). Anyway, have to run off to church but I sure have appreciated everyone's advice and time. I am the founder of the support group at the hospital where I work so I am not far from celiac disease each day and all of the wonderful people that I have met.
  7. There is a saying that life is too short for regrets and you certainly have helped me to look at that and start a new day. I would like to have the opportunity to share your story with a 50 year that I see as a patient about every 2 months. Here blood work indicates she has celiac disease, however, she is in some denial about it and says that "my doctor says that I just need to look for the symptoms - I only have Pre-Celiac". My lecture of either you do or you don't is not working. She is also has a rare blood disease and figures that this is the route of all of her problems. If you are anywhere close to Anamosa Iowa give a reply - we have a new person every month to our support group at the hospital there - Jones Regional Medical Center. We have a good time and help each other along. We will be having our second annual potluck the third Thurday in October. Marilyn
  8. Kraft - American. I haven't looked to see what is in them yet. We stake a few and then either cut or tear. You can sprinkle them with garlic or onion powder.
  9. Will search recipes but my weight mgt group came up with a "goldfish cracker" using just processed chesse. Put them on an oiled sheet and they puff and crisp. I made some of the pieces to look like animals...teddy bears mostly. This was to have the protein without the carbs...works for me.
  10. Thanks, even though there are lots of people out there, sometimes you feel pretty lonely. Marilyn
  11. My mother's twin sister was dx. 45 years ago at Mayo, so, I grew up knowing about celiac disease. She had the weight loss and GI problems. The Mayo clinic wanted my mom to come for "tests". She was in Ohio with 4 children and they were not going to reimburse for travel,etc. So, it did not happen. I have a niece (dx at 15, dx with Diabetes at 9). Most likely my oldest sister had it (she has passed away) and when her daughter held her stomach after a meal I suggested that she go get tested. Anyway, I asked for a blood test after a suspicious rash about 2 months ago - on feet and then hands (fairly symetrical). My question is - genetically, celiac disease is strong, but no one has DH...I am a little confused. Are all people with DH also Celiac or are people with DH gluten sensitive. I am sorry if this has been addressed in the past messages...it was a question that just came to me. I have read the info on this site. I understand that many people with DH may have celiac disease and that people with DH respond to a Gluten free lifestyle. Hopefully, I get the results tomorrow. They had to be mailed to Mayo. Thankfully, my doctor did not question my request. She FAXed over the order and I went upstairs to the lab. (I work in a small critical access hospital - 25 beds- average patient meals - 10 {however, 4 today}). But after reading here it seems that I might need a skin biopsy? - the blood test might not tell me about the absence/presence of DH. Isnt' technology wonderful. What did people do before they could talk with everyone? Marilyn
  12. ...or did it come from my computer. Anyone else have this happen? How inappropriate, especially on a weight management message board. Hi, I am new to this board but not to the celiac site. Until this week I visited because of my profession as a dietitian at a Critical Access Hospital (we have 25 beds in a rural area) and my interest because of family members. However, yesterday I had blood taken for a screening - suspicious skin rash. There is a strong family history with my mother's twin sister dx. 50 years ago at Mayo. Mom probably had it but was asymptomatic (she died at 58), her sister died at 80 of pnemonia, not celiac disease related (as far as we know). Have a niece, probably 2, with celiac disease. Good chance that my oldest sister had it, but she died at 42 - she was always very thin and a very picky eater - I think it made her feel bad (only a theory). Probably because of my family and also because of a couple people at church I started a support group for people with celiac disease and we keep growing. Having a doctor in this town of 5,000 with celiac disease helps awareness. People are just more aware - however, we never will get over the issue of asymptomatic celiacs...everyone expects the GI stuff. Having 30 pounds to lose myself I thought this might be a good place to check in. I completed the coursework and exam for a Certificate in Adult Weight Management. Have lots of resources available. We are getting a recipe section together. Online support can be very helpful. Could we start our own daily cheering section? Marilyn
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