glutenexpat

I think we all need to sit back and think about what we are doing before we fly off the handle with knee jerk reactions to anything having to deal with Gluten, Celiacs Disease, and possible injustices or attacks on us. Before reacting think about how you will come across. Do we really want to piss off the general public and make them the enemy, or de we want to educate them in a positive manner so that they will want to be more accepting and understanding?

I doubt anyone would say to a diabetic that their intolerance to sugar is bothersome to the general public. They would not mention that the special "treatment" a diabetic needs/recieves somehow puts them off. Q:Why is that? A: because many have a general understanding of how damaging sugar is to a diabetic's body. Diebetes is known for the serious disease that it is, but I am sure that it has not always been that way. It is our job to bring Celiac Disease out of the darkness and into the light, but we need to do it in a way that we are not attacking those who do not understand. Be careful not to offend individuals who though ignorant of celiac disease, may attack our way of having to live, or inconvience them, and instead educate them. Tell them about the possible fatal effects of gluten to someone with celiac disease. Tell them how sick ingesting gluten can make us, not to mention how disruptive to normal everyday life it can be. Make them aware that this not a fad diet, but a mandatory Medical neccessity and that you are not being intenionally difficult. (I know there are those that are giving us a bad name by trying to turn the gluten-free diet into fad diet, or who are choosing to be gluten-free because they want the special treatment, why they would want to do this I have no idea, insanity maybe.) I think if we go out of our way to educate the ingnornant/unknowning population that gluten can be just as damaging to someone with Celiac disesae as sugar can be to someone with Diabetes, then we will do more good for our cause and earn more support and understanding then if we fly off the handle bad mouthing those who really just do not understand. If we do the ground work now, then our children and our children's children will not have to face the ugliness that we do, and they will be just as accepted as diebetics are today.

Just some food for thought.

I saw my pain management doctor today, we discussed my recent worsening insomnia. He is a great doctor and very proactive in treating my pain and other issues that have come up related to my arthritis, facet syndrom and degenerative joint disease. He gave me some samples of Rozerem and suggested I give them a try to help me get to sleep. I have checked my Clan Thompson Smart list, and read the inactive ingredients list posted on the drugs website. I am wondering if anyone has taken this medication? Is it Gluten Free? If so what has been your experience with it. This medication is supposed to be non addicting and good for inducing sleep in people with insomnia. The doctor did worn me that people who take this medication tend to have very vivid dreams, but end up getting a good nights sleep without the possible side effects of the others.

I subscribe to the year plan and have found both the food and drug list very helpful. As the others have stated they update the lists every 3-4 months and sometimes the changes are pretty significant. I highly recommend paying the extra money as reading a list that is 6 months to a year old could have out dated information and cause you to ingest gluten as manufacturers often change ingredients or suppliers.

I hope that you find your palm and the smart lists as helpful as I have.

Thank you all for your information and replies. Since I was dx'd in Oct. 2004, I have learned everything I know about celiac disease from the internet or from reading books. I did see a dietician, several months after being diagnosed, but that turned out to be fruitless, as I knew more about the gluten free diet than she did. I am finding that there are not many if any doctors here in NE Florida that have much if any knowledge of celiac disease or the proper follow-up/treatment of the disease.

I do belong to a local support group, and they seem to be having the same struggles I am having locating someone to take charge of follow up testing etc. If anyone is located in this area that has a doctor that is on the right track and is knowledgable about celiac disease, please let me know, I need someone to handle the follow up tests that I should have had done a year and a half ago.

I look forward to learning from you all and sharing with you what I have learned by trial and error.

Take care.

I am new to the boards here, so please excuse me if this question has come up previously. I am wondering what type of doctor do you see for your celiac disease? I am most interested in who you are seeing for follow up work and ongoing care?

I was diagnosed almost accidently in November 2004. I was having an endoscopy and colonoscopy for ongoing stomach problems during the procedure she just for the "fun of it" she decided to take a biopsy of my small bowel though she told me I really doubt you have Celiac Sprue, I am going to have the biopsy checked anyway. Low and behold it turned out positive, then she ran the blood tests and told me I needed to go on a gluten free diet. She gave me a very brief hand out, told to come back in 4 years for a follow up on a seperate finding from the colonoscopy, and told "good luck on the Gluten free diet and in dealing with your Celiac Disease." I was never told about follow up tests, never given exact results of the blood tests other than they confirmed the diagnosis, and was never told who I should be seeing for "treatment" I realize that there really is not treatment other than the gluten-free diet, but I am learning that there is much more to celiac disease than just trying to be gluten-free.

It was a rude awaking when I went to my primary doctor after this episode with the GI, to find out that most physician know very little about Celiac Disease. When I asked my primary doctor about having my child tested, she said "what harm could it do your child to go on the gluten-free diet. it could not hurt to any of us to eat more healthy." She just does not get it!

Anyhow I would appreciate your thoughts and input.

Like many of you, I also have been struggling with sleeplessness. I had no considered the possiblilty that it could be a symptom of celiac disease, as I have other health issues that cause pain and fatigue, so I have just chalked the sleeplessness up to being related to those problems. The past two weeks it has been unbearable, I lay awake for hours, usually until 5 or 6 am, then I fall to sleep for an hour before it is time to get my child up and off to school. I usually return to bed and it takes another hour to get back to sleep. I usually wake then at about noon and feel that I have waisted the entire day. That leaves me about two hours to get my chores and errands run, before it is time for my child to return from school.

This is effecting every aspect of my life and despite trying various non-medicine related tatics to get to sleep, I am still suffering. I am at the point that I am going to have to consider yet another medication in order to get some sleep and be a useful member of my family and society. All this to say that I feel your pain and hope for a better nights sleep for all of us!

-T