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Gemini

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Gemini last won the day on May 12

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  1. Hello keven,

    I'm Eloise and 14.Im not so very good with words rigght now but wanted to try and writ somthing.

    I no that you are scared but I think that you will be okay too once you give it a little bit more time like the lady said.

    I no what hosspitals are like they are not nice at all.I no what it's like to be sick everey day of your life not nice either but you learn to acept it and realise that allot of people are worse out there.

    When I was born the doctors tolld my parents i would be lucky to see age 12.I have cystic fibrosis.Im 14 now and well they were wrong and I'm hoping with two of my sisters in heaven now that they'll be abel to giv me some of the years that they lost and maybe the doctors will find me a lung when I need it.

    When life gives you something that makes you feel afraid that's when life gives you a chance to be brave.Thats what the poster says on the bacck of my door.

    Be brave keven.One day at a time.Thats what I do.Thats what my sisters did too.

    You know, Eloise, every time you post here you just keep on impressing the hell out of me!  You are guts, grace and dignity all rolled into one nice package.  Keep up that fighting spirit and I love that poster on the back of your door!  :)

     

    Kevin.........my older brother, who turned 60 this year, has had Type 1 diabetes for many, many years.  I also suspect he has Celiac too but he is in denial about it.  You are lucky that they caught both diseases at such a young age because it may just prevent you from having worse problems as you age.  I know this is hard and I certainly share your loathing of hospitals because they are no place for young people but please give this more time and be patient.  You will feel better down the road and life will be much better for you!  It takes time for a Celiac to heal, especially when you have diabetes also.  I am extremely fair skinned and thin, like you, and I remember all too well the ignorant remarks from people about my skin tone and weight.  I have gained 20 pounds since being diagnosed 10 years ago, although I am still fair skinned.  The weight will come for you and you will feel better but it doesn't happen overnight.  Hang in there and visit here often when the need to rant comes on.....we totally understand your frustration!


  2. I have thyroid disease and Celiac and am post-menopausal.  I eat soy and do not worry about it at all.  I am healthier than I have ever been and do not seem to have any side effects from anything I eat. Most of what I eat is whole foods but I do throw in some processed stuff like bread because I exercise hard and if I don't eat some carbs, I lose weight.  You also need some carbs when weight training.

     

    This issue depends on family history and other factors, I think.  If you have had breast cancer, then you may want to have a hormone panel done to see if you are estrogen dominant, which is the main concern after menopause.  But having said that, I was estrogen dominant for awhile, as most women are when you enter menopause.  Progesterone is the first hormone to tank so, at some point, you could be dominant for a bit until the estrogen goes.

     

    The more you weigh, the more estrogen is stored in fat tissue.  I am thin and have had hot flashes in varying degree's of annoyance for almost 20 years so the soy that I do eat can only help, as far as I am concerned!  I am not trying to minimize any concerns you have but I think medicine has a habit of freaking women out on this issue. I just read an article about how the use of mammography has resulted in over diagnosis of "problems" in women.  Most of what comes back as questionable is nothing of concern yet women are rightfully worried to death when it happens.  Some doctors are trying to find ways to minimize this happening, which is good.

     

    I always tell people the most important thing you can do is to lessen the amount of inflammation in your body by following a strict gluten-free diet and exercise.  There can be no cancer without inflammation so concentrating on that is all important.  I wish you well with your biopsy and hope everything turns out in your favor.  Taking soy out of your diet is something that you will have to decide, based on your medical issues and whether you feel it agrees with you or not.  I never noticed any difference in my thyroid or anything else from eating some soy.


  3. I have had that experience before where you have to double check that something is gluten-free because it is so good and it always involved bread.  The gluten-free bread in Britain and Ireland was so good, I was nervous thinking it was not gluten-free.  It was!  :)

     

    I'll let you know when we come to NY.  I have been before, of course, but want to go again. Fabulous restaurtants in NYC and the Hudson River Valley but I am always open to suggestions!  Thanks!


  4. I am so happy to hear that!   Yeah....Woodman's is deadly and I am glad I do not live too near to it or I would weigh about 500 pounds.  Best fried seafood anywhere

    and, as a New Englander, I know my seafood. 

     

    I am happy you told me all the places you ate because I have not been to a few of those and now I know they are safe to eat at.  Always good to have other options.

     

    If you need additional advice for your next trip, I am here............I am happy you enjoyed yourself and ate well and safely!  :D


  5. Yes, I have 3 other AI diseases on top of Celiac but all of mine have either stabilized or my symptoms were greatly reduced by following a strict gluten-free diet.....which is very good because I am not a fan of doctors and would rather manage my AI problems by diet and exercise.  I have been gluten-free for 10 years and I am not the same person I was pre-diagnosis so that goes to show how much the gluten-free diet can keep things under control.  There is no reason to believe that you cannot achieve this also, if you follow the diet as you should.  Liver issues can resolve on their own by following the diet.  The liver becomes especially irritated by gluten, if you have Celiac Disease.  I had elevated liver enzymes pre-diagnosis and they resolved on the diet.

     

    I have always worked so have had good health insurance for when I needed it.  As far as racking up medical bills, pricing on tests can be negotiated, if you live in the US. Tell them you want the best price possible, if you don't have insurance.  I would also only pay them what you can afford comfortably because as long as you are making payments, they cannot do anything about it.  I think everyone should pay their debt off because it is all about personal responsibility but if it takes a bit longer, then so be it.  They'll get their money eventually.  ;)

     

    Glad you are feeling better!


  6. So sorry to hear this. Over a period of twenty years, we have been owned by seven cats. One is still with us; she is 10-1/2 yo. We said goodbye to our 15-1/2 yo tortie a month ago--her kidneys were failing and she had stopped eating. They are part of the family. Hugs {{o}}

    Oh, my!  Isn't it the truth that we are actually owned by our cats?   :)


  7. I'm very nervous for my biopsy tomorrow. Not so much that I'll be diagnosed with Celiac, moreso that I WON'T. It would actually be somewhat of a relief to have an answer to my symptoms and a plan for how to get better. I'm scared that if I turn out to be biopsy negative, I'll seem like a hypochondriac if I go gluten-free based on serology. From what I read, my test results indicate I have it regardless of biopsy, but then again I keep reading about biopsy being the gold standard so I'm confused.

    Here are my results:

    Endomysial IgA Autoabs, IFA - 1:20 POSITIVE

    Immunoglobulin A - 272 (in normal range)

    Gliadin IgA Ab - 25.6 H (normal range is under 15)

    Gliadin IgG Ab - 106.9 H (normal range is under 15)

    Transglutaminase IgA Ab - 80.2 H (normal range is under 15)

    I went to the doc because I had blood in my stool. I had been ignoring stomach issues for a while. Also, in August I went for fatigue/joint pain and had a positive ANA/speckled pattern so was referred to a rheumatologist who ruled out Lupus but said I "probably" had Sjogren's based on symptoms and a positive test, but she said she couldn't be sure because the test for Sjogren's is not very specific.

    I feel like I shouldn't have had to go back to my PCP for this additional testing... why didn't the rheumatologist test for Celiac's in August?? What kind of doctor would I go to to actually look at everything not just the little piece they are responsible for? I'm in information overload :(

    With a panel like that, you have celiac disease!  It still irks me to no end that a doctor could look at a lab report like that and think you may not have it. 

     

    I also have Sjogren's Syndrome and there is a blood test for it, besides the ANA.  They check for antibodies called SS-A and SS-B, also known as anti-Ro and anti-La antibodies.  The ANA test is not specific to any one medical condition, just a check for general inflammation.  I already knew I had Sjogren's when I found my present physician but she insisted on testing so I agreed to the blood work.  Of course, it was positive!  My symptoms are severe so tell me something I didn't already know......LOL!  If you want to find out more, even though it sounds like you are sure you have it, ask for this test.  However, it's like celiac testing.  Being autoimmune in nature, soemtimes the blood work will not show what is happening, even if you have symptoms.  I do not go to a Rheumy because I don't think they are especially helpful. You can learn a lot about these conditions yourself.  I have found that they say things that do not match what I have learned myself.  My symptoms became less severe the longer I was on the gluten-free diet, as it brings down that inflammation.  But I still have it and need to be proactive about treating symptoms with OTC mouthwashes and eye drops.  I also use Restasis eye drops and it helps me tremendously for the dry eye.  That is a prescription.

     

    I would recommend you find a good ophthamologist to track your eye issues.  They have been much more helpful than the Rheumy was.......


  8. The only issue that I have is that I am STILL losing the weight! If this takes 2 months to even out, at this rate, I will have lost almost 40 pounds! I was 6'2 and only 175 when this started. I already have absolutely no energy during the day, I suppose as a result of losing 3.5 lbs a week.

     

    Can I expect the weight loss to slow down at some point soon? 'm completely wiped out during the day. I barely have the energy to cook for myself. Seeing the scale drop EVERY DAY is scary.

    This was my experience also and it sounds like you have what I have.....classic Celiac Disease.  This was how most people presented years ago but that has changed.

     

    I am female and am 5' 4" tall.  I went from 105 to 97 pounds in 5 days and after that, it was 1 pound per day until I figured it out and requested the blood panel.  Doctors had failed me repeatedly over many years.  The weight stabilized about 5 days after going gluten free but I had stopped weighing myself by then.  I could have dipped to as low as 90 pounds.  The extreme weight loss usually occurs in those who have no villi left and are not absorbing jack squat.  That was the point I reached.

     

    I would suggest eating calorie dense foods and shakes.  Please don't worry....with numbers on your testing like those, you have Celiac and if I can recover, so can you!  I also ate 3 meals per day and snacks in between......it actually was kind of fun to eat all the time and not feel sick.  10 years later, I am 112 pounds and feel pretty good!  All symptoms have resolved, including the horrible, watery diarrhea.  :)


  9. Keeping in mind that everyone is different, I will add that when the rare glutening happens to me, I no longer suffer for days.  In fact, having been gluten-free for 10 years now, my gut is the lesser of the reaction now and that is a huge change because I used to have extreme gut reactions.  Neuro symptoms like anxiety come into play and more minor, manageable gut reactions.  I think it is because I have healed well and now my gut doesn't go into a week long frenzy when it happens.  So......I would say that things do change and the longer you are gluten-free and heal, the reactions may be much lower in severity or you suffer for a couple of days only.  That was my experience so keep the faith it will not always be this way for you!


  10. I am so sorry, bartie. :(   Been there, done that with 2 previous kitties I have had and there will be another time for me with the present kitty, but not for a long while as Sophie is not all that old.  I think it is a gift when we can be with them in their last hours and although hard to go through, it is still a comfort emotionally to be there for them.

     

    May Grommit rest in peace and the memories you have of her last a long time. 


  11.  

    But as we all know gluten is hidden in a lot of product, envelope glue, the glue on the first paper towel possibly, lip balm, certain flavoring and so on.  So, some of the accusations may in fact be true

     

    This is what I am talking about........the envelope glue and paper towel glue do not contain gluten.......but I can only speak for those living in the US and I would suspect, Canada.  They use glue, not gluten.  Lip balm may contain gluten but many do not.  You have to learn to read a label correctly or yes, call the manufacturer.  There are also many flavorings which do not contain any gluten.  If there was that much "hidden gluten" in products, no one would heal.  It all comes down to experience and time living with Celiac and learning about food ingredients. 

     

    There is definitely work involved with a Celiac diagnosis and work involved with living with this disease but it's very do-able.  If nothing else, it teaches poeple how to eat much better than they normally would have and that's a good thing!


  12. Kareng is right.....there is so much misinformation on the internet about Celiac Disease, this is where the confusion comes from.  Celiac is not a confusing disease by itself.

    There are many great books out there, written by medical professionals who have a background in nutrition and the human body, with all you need to know about how to manage this disease.  Unfortunately, too many people do not read them. 

     

    The most basic information a person can take away with them once diagnosed is that, in the beginning, you will react to foods that have no gluten content. You are healing and it takes more time than most people can fathom because they are used to taking a pill and feeling better in 24 hours.  If you react to a food, then do not eat it again for awhile and stick to whole foods.  I can assure you that down the road, you will be eating many more foods again you could not tolerate at diagnosis.


  13. icelandgirl.........after 10 years gluten-free, I present with dairy the same way.  I am good with a little but once I go over a certain amount, which usually means multiple servings in a day, I feel like crap.  I have healed well so do not suffer from diarrhea but too much dairy acts like a laxative on me and I go to the bathroom a LOT for a day or so.  I also get cramping so I have to be very careful about amounts in a 24 hour period.  But I cannot eat ice cream at all.  I don't mind, at this point, and do not miss it.  I still have cookies so all is well!  :)


  14. Ha, Ha, Ha!!!!!!!  I am pretty good with sweets, as far as not eating too much at one sitting. But it's hard to resist the chocolate-peanut butter combination.......or toffee.

    God, I love toffee!  The English have this dessert called Sticky Toffee Pudding, which is like a gingerbread cake with toffee sauce and sometimes they even give you cream to pour over the top. That thick, rich English cream that is so good and artery clogging!  LOL!

     

    I'll let you know how it goes and then you too can order by mail and descend into chocolate/peanut butter/toffee heaven....... :P


  15. Yeah, I thought the separate oven was not necessary as mixed batter is not something that flies around.  Maybe they do that as an extra measure to appease those who think it might be necessary in order to ensure a decent business for the effort they put into making a gluten free line.  I would assume that they use parchment paper for easier clean-up anyway but will make an effort to ask them about that.  This place is dangerously close to home and I am not sure that is a good thing..... :lol:


  16. I wanted opinions from my expert Celiac friends here on whether or not you would try a product with this information on their gluten free line of treats.  It is a shared facility and I usually never eat a bakery product unless it is from a dedicated facility but this place is near to my home and the cookies and brownies look so damn good.......would you or wouldn't you eat these products?  :)

     

     

    Sue George, the founder of Harvard Sweet Boutique, started baking gluten-free items in response to requests from consumers at local farmer’s markets.  Sue started with products from their regular line and modified them to fit the needs of gluten-free customers.
    Their gluten-free products are made in the same facility as their normal, gluten baked goods.  It turns out that the production line has dedicated days for gluten-free production.  The equipment is cleaned between each production type to reduce cross-contamination.  Additionally, they take the extra precaution of having dedicated gluten-free mixers, as well as gluten-free ovens.  I like the dedicated days for product manufacturing because it reduces the risk that someone will accidently grab the regular flour when doing a gluten-free order.

     

    In case you all are wondering, I'll provide the website link so you can see where I am talking about.  I have held off on going there because of the shared facility thing and yes, I do eat some shared facility items but not baked goods.  The flying flour thing kind of makes me wary about that.

     

    https://www.harvardsweetboutique.com/c-86-gluten-free.aspx

     

    Thanks!


  17. That sounds like the tTg IgA antibody test, which looks for intestinal damage.  The EMA is usually reported back as a titer or just a positive or negative.  Either way, the positive result may be the answer to your daughter's stomach pain.  It would have been helpful if the doctor had done a full panel but I would wait to hear what he/she has to say.

     

    The EMA is very specific to Celiac and if that was the test they ran and it was positive, your daughter most likely has Celiac Disease.  Is there a family history?


  18. That's a good point.  I think this is just another case of being overly worried about a non-issue.  They test the product in at 5 ppm's and that is not an amount that is going to cause damage in the vast majority of Celiac's.  For those who love beer, they should not fear trying the product.  If it doesn't agree with you, then don't drink it again. It really is as simple as that. 

     

    Same case as with oats.  There are still those who choose to believe that a celiac should never eat oats, as it will damage your gut.  I love oats, eat the certified gluten-free ones and have never had a problem.  My blood work is always really good so I'm sticking with my oats!  :)


  19. The article stated that they will treat this gluten-free barley like gluten-free oats.......processing, storage and transportation will be separate from gluten containing grains. That should take care of that problem.

     

    5ppm's of gluten is considered gluten free by most standards and the number of people who would react to such low levels would most likely be tiny, compared to the number of people with Celiac Disease.  So....it is correctly labeled.  I think this is a great idea for those people who really miss their beer. I would not drink it, as I dislike beer in any form, gluten-free or not.  The only problem I could see is in the amount a person might drink.  The ppm's might add up if you went crazy and drank a six pack or more.  ^_^


  20. No problem....always glad to help a fellow Celiac find good and safe food.  ;)  

     

    Woodman's is not really a restaurant but a New England clam shack with indoor and outdoor seating.  They serve beer and wine but if you want to have a drink, you have to sit indoors.  Because of those damned liquor laws, you cannot take any alcohol outside.  They have plates of fried seafood or boxes so you could always get the half pint size of fried something.  Or share a plate with someone because the portions are HUGE.  Definitely enough for 2 adults.  The fries and onion rings are really good also but they can only do the onion rings when it is not so busy. 

     

    Finz is located at Pickering Wharf, an historic New England seaport.   It's a nice area to walk around in, after you have dinner.  There are so many buildings from the 16th century and lots to do and see.  I look forward to your report when you return....have fun!


  21.  

    No doctor. The only one I liked or could afford moved away.

    As much as I think you should find one because of your symptoms, I totally understand your feelings. It is not easy finding a doctor you feel comfortable with and can trust. Up until I was 46 years old, I never went to doctors.  Could not find one I liked and the ones I did see screwed up so badly with the Celiac thing, the trust was gone.  But if you keep on having bloody stool, that might make you have to go to one....and I wouldn't like it either!

     

    As for your other symptoms, some of them could be thyroid related.  I have Hashi's so know what the problems are.  Insomnia, swelling, joint and muscle pain/ cramps could all be from a malfunctioning thyroid.  Is there no place to have some basic testing done? 


  22. Are you sure this is food related, Barty, or another AI problem rearing it's ugly head?  Plus, with the issues you are having with your stomach and stool, maybe you ought to go see a doctor?  It could be something entirely different.

     

    I hope this goes away and you feel like your old self again.  It's tough enough feeling bad but when you have to work, it can be downright torture, I know!  :(