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fetchfelix

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  1. I tried searching this here but couldn't find much and what did come up wouldn't load. Anyway, diagnosed Celiac 1 year ago, been gluten-free since Jan, also diabetic so I've found this very difficult to cope with. I work irregular hours and am on the rd a lot and have little ability to keep food safely with me so its very challenging. I was never symptomatic, except now if gluten I get mentally foggy and have to nap big time. Initially I found my bowel movements were stable, regular etc. But Ive since become very constipated, and its getting worse. I know the regular foods that are supposed to help but Im wondering if folk have had success with certain foods? Im really trying to avoid stool softners or laxatives, but if you've found you needed to go to that which ones have proven most helpful? Thanks in advance!

    Felix


  2.  pot noodle type stuff that only needs hot water has been recommended to me for my trip to China coming up. I don't usually eat this stuff anyway so I wouldn't have a clue where to get it, but can anyone give me suggestions where the best stores are that might sell gluten free type will be available? Someone suggested Thai Kitchen stuff. Im not a fan of noodles anyway so if anyone has any other suggestions that would be helpful. Apparently I will have access to a kettle for hot water but no microwave. Thanks.

     

    Felix


  3. Ok thats what I thought although not familiar with Red Robin and I thought I read that McDs were not gluten free, so thats good to hear. We ate out last night at Pizzeria Uno because I read  it was one of the better places, although their gluten free selection was very limited.........and you couldn't have fries so its difficult to explain to an autistic child why he can't have fries but his siblings can. Learning curve. I read   someone said they took their own buns to Five Guys and had burgers there, but wouldnt transferring the meat from their bun still have cross contamination? We will clearly be eating our a lot less...........

     

    Felix


  4. Im barely 2 weeks into my diagnosis and I;ve read a couple of times that you should avoid french fries, or at least restaurant french fries. Why is this & is there any fast food place that has gluten free fries? Im not so bothered for me but for my 7yr old with Down Syndrome who barely eats & one of the few things he loves in McDs FF, & I know they are now off limits........is this true of every FF place?

     

    Felix


  5. It would probably be a lot easier if I felt ill eating gluten, but as I don't notice any difference its difficult to get used to. Every hour Im thinking of more and more things I can't eat. Yes its easy to say focus on the things you can, and I know those desires and cravings will go away but its still a loss........places we can't go anymore, favorite treats & places to eat out. I understand gluten is a poison to me, as is sugar. Getting off sugar is very difficult too. Trying to get off both will take time, and extra planning. I know in the long run it will be easier, but it will mean a lot of planning and a lot of will power resisting donuts and pizzas at staff meetings and the like. Im sure its a lot easier if you get sick right after eating stuff like that, but I never had. The only reason I was tested is because my son was diagnosed, so its quite a mind frick. I've literally had nightmares about it the last 2 nights.........

     

    Felix


  6. I certainly don't plan on cheating, I never did..........I just wanted to understand the options. I know my diabetes very well and  as someone else said I "eat to my meter" as conventional diabetic wisdom  is weak in my opinion. What can we expect from a Govt that has fundamentally gotten nutrition wrong for 30 years. Im looking forward to seeing the movie "Fed Up". Today I have started trying to stay 100% gluten free but i know its a tradition and its depressing realizing all the things I won't eat. Its not terrible though, I do actually already avoid pretty much anything processed, but now will have to be even more strict than I previously will. Im now keeping a very strict food log to see if I feel any different. Im hopeful I really will as my son is a different child in just 2 weeks!

     

    Felix


  7. I posted my labs earlier, my understanding is that this is pretty definitive already. The only purpose of the endoscopy is to confirm the diagnosis and see what damage has been done. I just know that due to my work schedule, and about to travel to China for 3 weeks I won't be able to get an endoscopy for a while anyway. I really don't want to bother seeing ANY more Drs. I've truly had my fill these last few years, if there's really nothing to do but go gluten-free & recheck labs in 2-3 years I don't need to see a GI or any other Dr every 3-6months, It all takes time, money & co-pays! I go regularly for my diabetes anyway, if this is  something that can just be managed by regular Dr without any further testing that would be fine by me!

     

    Felix


  8. So it looks like I have celiac disease. This is an autoimmune disease. My brother has RA, my son has CVID and celiac disease. My Mom had her thyroid removed when I was 6 weeks old (no idea why and she is iong dead). 

     

    Who should I see? a GI Dr, Immunologist, or a Rhumatologist? Or all three? I read somewhere, don't change your diet until you've been tested / screened for everything that can be related. My regular Dr has just sent me to see a GI Dr in the future at some point but is just telling me to go gluten free now. Im just wondering what screening I might need, and who to really see. Any advice warmly welcomed. 

     

    Felix


  9. Thanks for the links. I already do mostly follow a whole food diet anyway, switching entirely to gluten free probably won't be too difficult. However I've learned a great deal about nutrition the last few years and I take issue with simplistic responses like "you choose what to eat and whether to be ill or not". If it really was THAT simple this nation wouldn't have the obesity problem it has. I've become utterly convinced our food supply is deliberately tampered with to make us crave and eat junk and terrible food. I did switch 100% to no processed food and felt so much better, but I did fall off the wagon and  am really struggling to get back to that............now of course I have more incentive. Its extremely difficult for me to resist foods I really like. The easiest way is not to have access to them...........but that requires everyone else in the household to be deprived also. I LOVE Dorito chips, but I know they spike my sugar way, way high. Most of the time i can resist them, but if Im at work or a party it can be really difficult. I used to   be very critical of very obese ppl, but now I understand that there really is true addiction to sugar, and other items the food companies put in that junk. There is a lot of evidence now that kicking processed food, sugar, HFCS etc can be as difficult as getting off drugs. I do feel some here have forgotten how difficult that can be. Maybe it wasn't for you. 

             

    Felix


  10. You are being helpful, and the whole reason I am here is I know pt forums are far better for getting information than most medical sites. LauraTX - my son has CVID also  and gets IVIG every 2 weeks. We are certain hoping his autism & behavior issues will improve going gluten free. He is mostly non-verbal but we know he feels awful at a lot of the time, but figuring out why is the issue. Im quite celiac disease is a big part of it. You are absolutely right, perhaps my health issues of the last few years were all related to celiac disease. The problem is Drs only look for their specialty, & celiac disease was never on my radar until my son was diagnosed, and that was only due to his GI suggesting it after his growth fell off. We have been unable to toilet train him, but in the 2 weeks he has gone gluten free he has not pooped in his diaper even once..........He is also doing well in school, so Im quite sure many of his issues have been misdiagnosed for quite sometime. 

     

                When I finally see a GI it will be interesting to see what he thinks of my recent history. I've certainly had every cardiac and neuro test there is going, but having syncope without any obvious cause is an issue. Seeing cardiomyopathy as a complication of celiac disease was certainly interesting as thats what they were thinking I had earlier. Its pretty obvious that I have auto-immune issues and perhaps thyroid too, although thats all been monitored closely. The whole reason I am here is because some years back I had back issues & went through every treatment and therapy only to be told I needed surgery. I knew enough to know I wasn't having that & then joined some forums. That led to me finding an alternative therapy that made sense & fixed my back within a couple of weeks - it also proved to me that the physiotherapy I had been receiving which was conventional treatment was flat out wrong and making it worse. 

     

             There is no substitute to forums like this where you meet hundreds of ppl with real life current experience. I value the information gathered here highly. You can rest assured that having heard from everyone that 100% gluten free is the only way to go..........thats what I will do. My daughter is adopted and is from China so we are not testing her. My other son was negative. My wife is being tested Tuesday & I will be surprised if she is negative. 

     

             So for anyone who has had syncope from celiac disease, what caused that? What is the physiology that explains that? In my testing I had ANSAR testing that was abnormal, I KNOW that my autonomic nervous system doesn't respond normally right now, but the question is why? I think I did read that celiac  can affect that also. I just know my cardiologist did a test (CSM) and I reacted the exact opposite to what I should have. 

    Yes, I have a great deal of stress in my life, and a very stressful job. Ever since my event in April I have been working to change all of that, but so far haven't been able to. I need to make life changes & a huge part of that is trying to move somewhere cheaper, but before I can do that, I need to fnd a new job, and Im struggling with that. Thank you for all the answers, its been most helpful. 

     

    Felix


  11. So.........for years I recorded everything I ate trying to fix my diet, & stave off diabetes, and lose weight & failed miserably, In the end I did lose 25lbs & 6" and pretty much maintained that. I haven't followed my diet in that manner for a couple of years. Just wondering if there are any APPs that help track your diet, help ID gluten products etc etc.........anything of use that people recommend?

     

    Felix


  12. Yeah, that would work...............I only just discovered Five Guys last year after 20 years in the USA.........its not like I  go there much. I really don't eat much bread or really anything with gluten anyway, so the burgers were the 1st thing I thought of......LOL. I feel bad for my son, he doesn't eat well to begin with and pretty much everything he has has gluten. Understand he has down syndrome, autism, primary immunodeficiency, asthma, hypothyroidism and now celiac disease. We're hoping that the gluten free will really help with all those, especially his behavior. But at this point the poor kid (developmentally 4-5) just knows we're taking away ALL his favorite foods..........although my wife has already found some awesome alternatives its still very early days, only a couple of weeks for him and 24hours for me.........

     

    Felix


  13. What is LCHF diet? 

     

     have researched diabetes and I was not impressed about the ADA recommendations. There is a lot of controversy regarding diabetic care. It is confusing for most patients.<<<<<

     

    Yes, exactly my point. I eat to my meter & know exactly how to control my sugars. For me at least the whole glycemic index is BS, my body just doesn't react the way those indexes say it should. Through a lot of trial and error it has taken me time to figure out what I need to do, and it is still extremely hard. Easiest way to avoid bad foods & junk food is to not have access to it, but with 4 non-diabetic family members thats hard. Adjusting to my sons diet is difficult enough - I would love to have the house go over to a diet based almost entirely upon Michael Pollens "Eat food, not too much, mostly plant". We have way too much junk in our home, even though its WAY less than most. 

     

                My wife is yet to be tested, but frankly Im kind of hoping she is celiac too as that will make it a whole lost easier. Her mum certainly had issues, and reading the symptoms I would say she has a much higher risk of me having it. She gets tested this week, and if she is positive too then it will be a  lot easier to change everything, except for the expense and time preparing foods. So far she is finding it takes a lot more time to organize everything, in shopping and food prep. Understand we already have a lot of other things going on with his other health issues and we are very financially strained. We are about to adopt two older children from China, so we will be cooking a lot more Chinese food anyway which tends to be more gluten free anyway. Before anyone judges me for doing all this, there have been other changes in our life this past year beyond our control. I am now trying very hard to move to a cheaper part of the country, but medicaid issues in different states, and not getting hired is making that tough. 

     

    When you go gluten-free, I bet you will feel an improvement in your health -- you just probably chocked it up to aging.

     

    I certainly hope thats true - I certainly feel very aged in the past 4 years. I have been monitored closely for several years. Im fit, not overweight,yet have several complications of diabetes already, HTN, some eye issues and bowel issues which i now know may well be from celiac disease. Everyone assumed it was all diabetes. My 4 admissions in the past few years were for "syncope of unknown cause". Ive had a week long video EEG, multiple MRIs, and MRAs, and had an arrhythmia monitor implanted for 2 years. That was removed I was cleared  & there was no clear diagnosis and I had no issue for 3 years. Then this year I ended up being diagnosed with cardiomyopathy, but then that was reversed (actually very difficult to diagnose correctly) and I had multiple tests and was not allowed to work............at a time when I am extremely financially stressed. Adding the expense of going gluten free is something I will do if I know I have to, but the point is I have to be sure. Look at diabetes. When I started my career Type II never needed insulin, but now they know most type II WILL need insulin eventually. There's just so much we still don't know and understand. Im glad celiac disease does appear to be more cut & dried. 

     

    Felix


  14. Here's what I was told "Your blood tests are consistent with Celiac disease.

    I do recommend upper endoscopy with plan for small bowel biopsy to confirm the extent of this, but regardless of findings, lifelong wheat gluten avoidance is recommended."

     

    My actual results - 

     

    INTERPRETATION:   SEE NOTE Serological evidence for celiac disease is present. TISSUE TRANSGLUTAMINASE ANTIBODY, IGA   35 Value Interpretation
    ----- --------------
    <4 No Antibody Detected
    > or = 4 Antibody Detected IMMUNOGLOBULIN A 81 - 463 mg/dL 193

     

    ENDOMYSIAL ANTIBODY SCR (IGA) W/REFL TO TITER NEGATIVE POSITIVE

     

    ENDOMYSIAL ANTIBODY TITER <1:5 titer

    1:20

     

    So is this all pretty definitive? I know I need to see a GI & get an endoscopy but Im unlikely to be able to get that done in the next 6-8 weeks anyway as Im about to travel overseas for a month. I've read about gluten challenge, but Im not going to be agreeing to that. I just don't eat that much gluten to begin with. Im VERY reluctant to go through a lot of testing, a. for time and money spent, and b. for confidence in it. Earlier this year I was diagnosed with a potential severe life threatening heat condition, and visits with 3 different cardiologists ended with that all being reversed. Even now I've been recommended to see someone else, but they are not covered by insurance & if I do have THAT disease I will be permanently disabled from my current job. Now that my symptoms are totally resolved Im reluctant to do that until I have another job, which has proven problematic. Being in school & the medical profession I have access to all the information my Drs do & the bottom line is that the medics themselves disagree on diagnostic tests & significance. In the end, the final cardiologist said if the initial diagnosis was correct it would change my life & so they had to be certain. His final diagnosis was something much more benign. As I understand it an endoscopy is the only way to be 100% certain I have the disease, or are these labs definitive? 

                 If there's one thing I know from  working in healthcare its that best medical knowledge if often incomplete, or changes, and we ask people to change their entire lives sometimes on minimal evidence. Going  totally gluten free is something I really don't want to do, and won't unless Im certain it will be worth it. But I don't think for me it will be very hard as I have little gluten now - so how do these results stack up with that? My diet is already mostly based on Michael Pollens advice "Eat food, mostly plant, not too much". My brothers are even more medically skeptical than I am - one is in big Pharn and knows how corrupt that research can be, and nutritional research even more so. If you look at the way medicines are researched you can see huge gaps...........but nutritional research is far worse. So  all in all I won't to make my brothers aware, but only when my diagnosis is pretty certain. Thanks

     

    Felix


  15. My Dr has told me that based on my blood tests I have celiac disease, but as I understand it this can't be 100% confirmed until biopsy through an endoscopy. I can't do that for a couple of months. I have 2 brothers, who I have little contact with. I know I should make them aware but is this something I should make them aware of now, or only after having it confirmed?

     

    Felix