Jump to content



Celiac.com Sponsor (A1):



Celiac.com Sponsor (A1-m):


fetchfelix

Advanced Members
  • Content Count

    31
  • Joined

  • Last visited

About fetchfelix

  • Rank
    Star Contributor

Recent Profile Visitors

1,742 profile views
  1. MY thought was... If you don't feel a gluten-free diet is important for you... Why would you think it is important for the child? I am glad that your wife is watching over him and feels it is important. You are an adult and a nurse and can read and understand the medical information.<<<<<<<<<<<

     

    Why do I think its important for my child? Because he has symptoms and isn't growing, we both think its important for him for goodness sake Im talking about me and my choices. 

     

    >>>>>>> You are an adult and a nurse and can read and understand the medical information.<<<<<<<<<<

     

    Yes, and I've watched that change over time - MANY things I did at the start of my career are considered wrong today. Look at the history of dietary fat and heart disease as just one example. 

     

    >>>>>>>>Let me ask you this.... As a nurse, would you advise a patient to "cheat" on a diet?  I hope not.<<<<<<<<<

     

    Im a realist. I tell patients what they need to know, but very, very few are 100% compliant 100% of the time with anything. 

     

    You know the progression of diabetes in a noncompliant patient: blindness, amputations, dialysis, kidney transplants. <<<<<<<<<<

     

    Yes, I & know that the key to avoiding those is keeping my sugar below 140 at all times (not the 180 the ADA  recommends). I achieve this 80-90% of the time. I know certain foods will put my sugar up over that number, and  I know that at that time damage is being done........and i live with that. Thats my choice, I might not live long enough to have all the above. Fact is most of the time I keep my sugars lower than the 180 the ADA recommends. Overall I follow Michael Pollens dietary advice, but as he says 80% of the time. Its very difficult to be good 100% of the time.

     

    >>>>>There is a progression in celiac. If you are non complaint you have a higher risk of intestinal cancer, lymphoma, not to mention all the 300 other symptoms that are associated with celiac disease.<<<<<<<<<

     

    Ive read that but the cancer risk and especially lymphoma risk is still very low. 

     

    >>>>>>>free pass to cheat, tell you it's ok.  Even the people on here that are asymptomatic.<<<<<<<<

     

    Im not looking for a free pass - look at my original post, i asked what the consequences were of occasional cheating, specifically if I ate a burger & fries at 5 guys very occasionally. I know the effect on my sugar, and the damage that causes, which science currently shows as nerve damage for  the time the sugar is high, which may only be a couple of hours. Im prepared to live with that risk for the pleasure of eating the foods I eat. What I don't know, and still haven't found, is the consequences of that on celiac disease. Does it cause immediate damage, does it cause inflammation for a few days, weeks, months? I know some ppl are extremely sensitive and have symptoms. I understand I may in the future. Im just trying to find the science that says avoiding gluten 100% of the time makes a huge difference 100% of the time, for 100% of the patients. The medical literature is replete with examples of medical advice that was later proven to be without basis, or worse, harmful. 

     

                Yes, it is a grieving process to suddenly have to change your entire eating habits. Research shows it takes the average diabetic 2 years to fully accept the diagnosis and truly change their lifestyle. It was very hard for me and my work showed me the effects of non compliance every day. In my day to day work I routinely see people die from heart attacks & strokes. I don't see that from celiac disease which is why I was asking about long term consequences. Life is full of choices, and Im planning on being well informed, even if not 100% compliant. We are trying to be 100% compliant with my son..........but even that will be impossible as we're not with him all  the time and he gets into food he shouldn't. Only way to completely avoid that is to have no gluten in the house but that isn't fair on the other kids. I appreciate the help and links, and have read them. I said that 1st guys blog didn't answer any questions - he strongly believes all CDs should be 100% gluten free all the time, but human beings aren't that way. I just want to understand if its truly proven scientifically that ALL celiac disease pts should be 100% compliant all the time. I am well aware there are cases that need to be, some reactions like anaphylaxis prove that. motivating any pt is the most difficult thing - you all are special because you are highly invested in THIS disease & obviously devote yourselves to it. Not everyone will be that way, don't be offended, thats just life. As a nurse my responsibility is to educate & help people - they make their own choices, as do I. 

     

    Felix

  2. Well....this scares me for your child's sake. If you think celiac Disease and the gluten free diet as the treatment is a bunch of BS...... I am not sure how we can help you. I wish you well. And I hope you do the right thing for that child who can't decide for himself.

    Thats not what I said, and you are completely misunderstanding me, and again what I do for my child is completely different. We are already trying to go completely gluten free for him, not easy when he eats very little to begin with and has multiple other issues. As I keep saying, I was asking about me. Apart from anything else I am away from how when working so MY diet & HIS diet are frequently different anyway as we are not at the same meals. My wife is dealing with him more than I. I didn't say anything about gluten free being a bunch of BS, go read what I wrote again

  3. I have had symptoms of Celiac for over 30 years and was diagnosed 5 months ago.  Look at my signature to see what long term gluten eating does to a person when they don't know they have Celiac. There are a whole lot more people on here that have had the same.  It's not a fun life and a long hard road to recovery.  How are you going to take care of all those kids if you feel like s$#&?

    But thats my whole point, I don't feel particularly bad and have none of the issues you've mentioned. The only symptom I can say I've had at times is constipation. I don't feel great now but I have been off my diabetic diet somewhat & I need to fix that. 

  4. Did you check the link I gave you? It is an easy to understand website. It states that you must always be gluten-free, even if you think you have no symptoms.

    If you are changing your child's diet, you can go gluten-free with him. If managing your illnesses and his and your other kids and your job and school are too much, maybe you need to cut back a bit? You are just 1 person with 24 hours in a day.

    Yes, I was just reading it, and it tells me nothing. I've been in nursing 24 years, I've seen a lot of things come and go, a lot of diseases and treatment plans that were bogus. I've had 4 admissions for life threatening issues in the last 4 years, very unlikely to be celiac disease related but who knows. What I do know from a lot of reading and a lot self testing is that the VAST majority of nutrition or dietary advice is BS period. Who the heck knows what is truly healthy to eat? I've read so many books on that, and research studies and now understand how little is known and understood. Yes, I read that blog and right off the bat I discover that this community is divided................wow, shocker. I do know this, we are all different and no one advice suits everyone. I know how to control my sugars, and its based upon trial and error for me, not the BS put out by most nutrition or American Diabetic Assoc. So you see, right from the start Im suspicious because of my experiences there. 

               What is the right diet for diabetics? Any disease, has so much information available, but sorting the good from the bad is extremely difficult & time consuming. Ive had to make significant life changes in recent years, going gluten free will be another. I would LOVE to find that my admissions were somehow related to celiac disease as frankly thousands of dollars in testing & admissions haven't turned up anything else. At 46 maybe this is all complications of celiac disease. Do you develop this or have I always had it? As for cutting back..........LOL. Do you think Im choosing to work 4 jobs & do FT school? Long detailed story. I am trying desperately to make changes, but a lot of things are out of your control. The added burden financially & time wise of this diagnosis is significant and depressing. Believe me, I intend to be around for my kids, but Im not going to completely & utterly change every aspect of my diet until I fully understand. Listen, for 20 years I followed all  the Govt BS about eating FAT to avoid heart disease. And guess what, for 30 years they've been completely wrong. Dietary fat has no bearing on fat within your body. Thats one thing Ive proved to myself easily. Increasing my fat helped all my lipids, and helped my blood sugar control. Notice I came here 1st, because I want to hear from ppl with the disease 1st & foremost, I don't have a lot of trust in official sources. 24 years in healthcare makes you a little cynical!

     

    Felix

  5.  

    For your son's health - PLEASE take a few minutes and read some info about Celiac.  He will depend on you to keep him healthy and "ignoring" the gluten free diet will make him sicker and sicker.  I would think that keeping yourself healthy would help him, also?  

     

    http://www.cureceliacdisease.org/living-with-celiac/guide/treatment

     

    You misunderstand, of course I will learn for him.........we already are. But he clearly has signs and symptoms of celiac disease, and has multiple health issues to take care of. We have already seen a significant improvement in him. I am talking about me..........I have no, or minimal symptoms. Its been hard enough adjusting to being diabetic, and i fully understand all the diseases that causes, I see the effects of diabetes all the time. But I don't have symptoms of celiac disease. I will in time read and learn as much as I can and will be an expert........but right now, today, I have 4 jobs, full time school, 3 kids one of whom has special needs and behavioral issues and we are soon to adopt 2 more special needs children from China. Suddenly finding I have to radically change my diet is.............daunting.  Thats why I had specific questions for what to do now. If I understood the long term consequences of not following, or "cheating" occasionally it might help me. I understand ppl who "cheat" have immediate symptoms and feel much worse, and who knows maybe I will feel much better after going gluten free. But Im not really aware of any symptoms now.............Motivating people to change their lives is notoriously difficult, thats what Im needing immediate health with

  6. I have SO much going on in my life........I know I could find all this online but don't have time to go searching and figured I would start here. 

    I have Diabetes / HTN / Asthma & over past 4 years several admissions for "syncope of unknown cause" for which I've had extensive work ups

    My youngest son has Down Syndrome & multiple health issues including Primary immunodeficiency, and was recently confirmed to have Celiac disease & so I was tested too. 

     

    Im waiting to hear back from my Dr, but from test results Im pretty sure Im positive too, so a couple of quick initial questions that I need to get answered quickly to get me going. 

     

    1. Is an endoscopy essential to confirm, can't you just go gluten free?

     

    2. What are the consequences of not going gluten free?

     

    3. Do I need any specialist or can family Dr manage this

     

    Looking at the lists of things to avoid........french fries? Am I supposed to NEVER have a burger & fries from 5 Guys anymore? Can you cheat a little? Im a nurse, and a diabetic & know it takes an average of 2 years for Pts to really switch their diets.......its incredibly difficult. I can't imagine going 100% gluten free 100% of the time. Im also pretty asymptomatic, maybe some constipation issues sometimes, but I would never have guessed I'd be positive. I know the consequences of not following my diet for my diabetes, and even knowing that Im going to cheat sometimes.........eating is one of lives main pleasures and so I will choose to shorten my life a little to enjoy it more while alive. So my initial thought is just to ignore this. Im 46 and essentially symptom free - so the 1st thing I need to know is what is the consequences long term if I just ignore it? Thanks in advance.

     

    Felix

×
×
  • Create New...