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Newbies: How Is Everyone Doing?
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I just thought I would find out how all the newbies are doing. There were a lot of us that were diagnosed in the last few months.

I am still not right, but I have noticed that I am getting better. My hairdresser (who I hadn't been to in years since she moved) said that I had a lot of new hair growing in. I'm taking that as a good sign (though I hadn't realized that I had lost any hair).

My intestines are still not working properly (going at least 4 times a day), but I think I have figured out what happens to me when I am "glutened." So at least I know that I am not accidentally ingesting it on a daily basis (right?). When I went to PF Changs and when I had a bbq at my house I believe I was glutened because both times I woke up in the middle of the night and urgently had to go to the bathroom (2-3 times). So I think that is the sign that I was glutened.

People at work are saying that I look a lot healthier, etc. so that's good too. I'm no longer foggy at work, or extremely hungry. It seems to have balanced out a lot.

Anyway, I'd love to hear how all the newbies are doing and will always take any advice the veterans have to give!

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I'm pretty new myself, I was just diagnosed in March 2007. At first it didn't seem so bad, I never really like bread or anything anyway. But now that I'm realizing just how serious celiac is I'm starting to get really depressed. The fact that we have to look at everything like shampoo, makeup, soap, toothpaste, laundry detergent, is very overwhelming to me. And how even the smallest amount can do damage to your intestines. I can't even really tell when I've been glutened, I don't get sick like everyone else seems too. I cheated once just to see what would happen and nothing did. That kinda worries me because I could be getting glutened all over the place and not even notice. What's going to happen to me if I can't get completely gluten-free? I live with my fiance and a roommate and having to watch them eat whatever they want is making me resentful. Not to mention they are probably cross contaminating all the gluten-free food in the house. It just seems very hard to handle right now and I'm turning into an emotional mess. I hope the other newbies are doing better than me.

Julie

Edmonton, Alberta, Canada

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hi,

I was just diagnosed with Gluten sensitivity in May 2007 & have been gluten free for about two weeks. My doc says blood work does not show celiac disease but I've been told blood work are not always acurate. I haven't noticed that much change, still have stomach pains, fatigue, brain fog, no energy..

not sure how gluten free I am though when you consider I use same pots/pan as everyone else in my house & not sure if my shampoo's & lotions are gluten free. right now it's overwhelming, I'm going to see my doctor tomorrow to just go over this & see what else he can test me for, what kind of damage gluten has already done.

Please advise what else I should ask my doc about or what other test I should get.

Thank You.

I just thought I would find out how all the newbies are doing. There were a lot of us that were diagnosed in the last few months.

I am still not right, but I have noticed that I am getting better. My hairdresser (who I hadn't been to in years since she moved) said that I had a lot of new hair growing in. I'm taking that as a good sign (though I hadn't realized that I had lost any hair).

My intestines are still not working properly (going at least 4 times a day), but I think I have figured out what happens to me when I am "glutened." So at least I know that I am not accidentally ingesting it on a daily basis (right?). When I went to PF Changs and when I had a bbq at my house I believe I was glutened because both times I woke up in the middle of the night and urgently had to go to the bathroom (2-3 times). So I think that is the sign that I was glutened.

People at work are saying that I look a lot healthier, etc. so that's good too. I'm no longer foggy at work, or extremely hungry. It seems to have balanced out a lot.

Anyway, I'd love to hear how all the newbies are doing and will always take any advice the veterans have to give!

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I'm starting on week 4 of the diet. I'm still figuring out what I can andcan't have.

I'm doing alot better. Now I just need to make sure all the gluten is out of my house. It is a little overwhelming to think I need to look at my makeup, hair care, and laundry stuff. I think all that is fine but to be honest I'm not sure. It's still tough to watch others eat things I can't have but I'm slowly getting over it. Although Saturday will suck. My friend is getting married and I won't be able to have a peice of cake. All in all though today has been decent.

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I thought I would post here, even though I am 6 months gluten free. Jan. I thought I was gluten-free, but seems I was gluten light-wow if I only knew then what I know now! So truly not gluten free until Feb.

Feb. I was OK with all of it, I was relieved to know what was wrong with me all those years. Still ate out way too much and took too many chances-this lasted until about March when I really started feeling better and then got glutened. Learned my lesson-no more. I made the switch to paranoid gluten girl and will eat it only if I can see it being made and I can verify it is Gluten free. Through April felt the best I have ever felt. I had a little set back at the end of May, Thyroid issues, but we are getting those under control.

I went through the whole mourning process, though I really didn't think I would because I never really was a big fan of bread type foods-they always made my stomach hurt. Now I am over that and have discovered the joys of gluten free cooking. I have made lots of meal substitutes that to me are better than the gluten counter parts. I have found I prefer my cooking to the prepackaged stuff, but I have always been that way. And I am not a fan of Chicken, though I eat it almost every day :huh:

So the moral to my long windy post it-hang in there, it gets better. I now have so much energy that I drive my poor ADHD husband crazy! Life is what we make it. This is so doable.

My substitutes list:

For shampoo, conditioner, lip balm, and lotion I use Desert Essence. The entire line is Gluten free and Organic

Make up is Bare Minerals. I hate make up anyway, so this stuff is perfect

Namaste is the BOMB! My family devours the brownies and I am the only one gluten-free

I can make better fried Catfish than any southern joint.

Redbridge Beer is better than no beer

Malibu Rum is Gluten Free

Whole foods hamburger buns are good biscuit substitutes.

Glutino Mac and Cheese is my fave!

Coconut flour pancakes are the best thing after a soccer game

We are very lucky to have the resource. I cannot imagine what is must have been like in the years before the internet!

Kat.

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Hi, I'm starting on week 4 too. I'm inthe hospital for celiac complications (iv vitamins, additional tests, etc), since sat and they said a few more days. The gluten-free food part isn't bad, but I also have to be DF and maybe soy free. My neuro symptoms haven't resolved; one kind of D has stopped, but I still have a lot of gas, pain, & D (they're doing tests on that too). I'm still losing weight, the vita. iv & fluids are giving me a little more energy, but I'm sleeping a lot, and I still have the brain fog, pain, and dizziness.

I've been very strict with gluten-free food, meds, but I have a hard time figuring out cosmetics; I'm nervous about getting my hair cut! I was excited when I found out that Target's method cleaning products are gluten-free so I could keep those. I'm luck I live alone so xcontam. is not has hard, but it's lonely/hard w/o the support. (I got a cat-she's gluten-free too :) )

The gastro who did the biopsy made it sound so easy - just don't eat gluten - you'll be fine in 2 wks! <_< It looks like it might take more time than that. I'm still hopeful that eventually I'll feel not just ok but healthy, and I haven't felt that in a long, long time!:)

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Hi all! I am not good w/ computers and am having trouble posting a rather urgent and important question.

I'm new to this site but diagnosed about 2 years ago. So were both my kids. It is still overwhelming for me at times because it can be so tme consuming to do things sometimes. I am having a birthday party for my son this Friday and the pwerson I thought who could make him a normal looking and tasting birthday cake is unable to. I hve baked many things successfully but now can't eat corn, potato, chocolate, dairy egg yolks, nor soy. Which makes it difficult to do the cake and the icing!! I really want him to like his cake! And his friends too! Does anyone know of a bakery in Lancaster, or even a dedicated kitchen where someone could bake me a somewhat professional looking cake for this Fri??? That's Lancaster, PA. I'm near the city too. Please, any help would be greatly appreciated. Thanks again. mee

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Hi all! I am not good w/ computers and am having trouble posting a rather urgent and important question.

I'm new to this site but diagnosed about 2 years ago. So were both my kids. It is still overwhelming for me at times because it can be so tme consuming to do things sometimes. I am having a birthday party for my son this Friday and the pwerson I thought who could make him a normal looking and tasting birthday cake is unable to. I hve baked many things successfully but now can't eat corn, potato, chocolate, dairy egg yolks, nor soy. Which makes it difficult to do the cake and the icing!! I really want him to like his cake! And his friends too! Does anyone know of a bakery in Lancaster, or even a dedicated kitchen where someone could bake me a somewhat professional looking cake for this Fri??? That's Lancaster, PA. I'm near the city too. Please, any help would be greatly appreciated. Thanks again. mee

Mee

I have found a good substitute if one is sensitive to chicken eggs. I eat duck eggs with no problems. That might be something to check into. They work just fine in baking. They are also richer tasting. I pay $6.00 per dozen.

Susan :blink:

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I just thought I would find out how all the newbies are doing. There were a lot of us that were diagnosed in the last few months.

Hi,

I have been gluten-free for a month and a half....I have finally stopped making regular mistakes! That is probably the hardest part to figure out, what to eat that is safe! My family gets together alot, and eating at other people's houses has been challenging. I made a stupid error yesterday and will pay for it the next few days with d, but it is a good reminder!

I too am feeling healthier and am so happy to feel "normal" for longer stretches of time. I have stopped losing weight. I have a blood draw today to see if my iron levels have gone up, since I am anemic.

Any advice on taking iron? I was given a very pure for of iron from my doc, but it makes me feel horrible right after I take it. It's not glkuten-related. I think it could just be hard on my system??

Anyway, best wishes to all the newbies, and thanks to the vets for all of your help and guidance. It is truly appreciated!!

Terri

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Hi all! I am not good w/ computers and am having trouble posting a rather urgent and important question.

I'm new to this site but diagnosed about 2 years ago. So were both my kids. It is still overwhelming for me at times because it can be so tme consuming to do things sometimes. I am having a birthday party for my son this Friday and the pwerson I thought who could make him a normal looking and tasting birthday cake is unable to. I hve baked many things successfully but now can't eat corn, potato, chocolate, dairy egg yolks, nor soy. Which makes it difficult to do the cake and the icing!! I really want him to like his cake! And his friends too! Does anyone know of a bakery in Lancaster, or even a dedicated kitchen where someone could bake me a somewhat professional looking cake for this Fri??? That's Lancaster, PA. I'm near the city too. Please, any help would be greatly appreciated. Thanks again. mee

Hi, Elizabeth on The View is a celiac and recently celebrated a birthday with I'm thinking a Baskin Robbins ice cream cake. You wouldn't be able to eat it but if your son can have dairy he could. :)

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Hi im about 3-4 months gluten free, and i feel the best that i have in years. I use to be so afraid to leave my house and now i cant seem to stay home. I use to miss alot of school and family functions from the anxiety of not knowing what was wrong with me. I am now coaching my sons baseball team, I can now go to baseball and tball games for hours and not worry. I can now go grocery shopping and not have the need that i have to run out of the store. I can take my kids to whereever they have to go and not say, no we have to wait til your dad comes home to take you. My sex drive is even back to where it was 10 years ago when we met. Hubby really is happy about that lol

I use to want to hide in baggy clothes cause of my bloated tummy. Now i wear what i want and feel good in it. Im still not skinny, but im happy with who I am.

I dont wake up in the middle night sick anymore. I dont get up at 1 and 2 am and stare at the ceiling anymore, when i hit that pillow im asleep til 5 am. I have became a better cook, since i dont rely on packaged stuff anymore. I just wish i had more time to cook and bake. I can look at packages now and know what stuff can be gluten, i still have to look up a few things but not as often anymore.

I had to go gluten, casein and soy free to feel this good. Yes i sometimes miss that cheese, but i love who I am now and would never think about cheating. I have learned everything can be made like the real stuff it just takes more time and more ingredients.

So all of you still sturggling with the diet, just know there is a happy ending at the end. You will get better and if you are not feeling better just off gluten, try and take casein or soy out and see if that helps.

SO happy a poster before me said malibu rum is gluten free, I have wondered just never looked it up. I am going to go buy me some of that tonight with my cranberry juice. I cant wait.

One more thing, i feel like an little kid when i find out i can eat soemthing that i thought i would never be able to eat anymore. Little things in life now bring me such pleasure.

paula

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Hi, I am 2 weeks into the gluten-free diet. I feel really good. I challanged myself last Friday and had a reaction. Since then, I have been recovering from that gluten and am starting to feel good again. No more gluten for me, no sir. I did have a little pitty party about it. Got all upset and depressed. But I am ok with it now and realize it is what is best for me. I think it is even helping with the myasthenia gravis.

My husband was kinda put out by it all at first. He sure has come around. Thanks to those who gave me advice on that. He is now one of my biggest advocates. He sticks up for me at restaurants and makes them redo my meal if it is wrong. He likes to see that I am finally feeling better after so many months/years of not.

I am so grateful for this forum. I am glad there are people out there that want to help and know how I feel.

Bakinghomesteader

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Hi all! I am not good w/ computers and am having trouble posting a rather urgent and important question.

I'm new to this site but diagnosed about 2 years ago. So were both my kids. It is still overwhelming for me at times because it can be so tme consuming to do things sometimes. I am having a birthday party for my son this Friday and the pwerson I thought who could make him a normal looking and tasting birthday cake is unable to. I hve baked many things successfully but now can't eat corn, potato, chocolate, dairy egg yolks, nor soy. Which makes it difficult to do the cake and the icing!! I really want him to like his cake! And his friends too! Does anyone know of a bakery in Lancaster, or even a dedicated kitchen where someone could bake me a somewhat professional looking cake for this Fri??? That's Lancaster, PA. I'm near the city too. Please, any help would be greatly appreciated. Thanks again. mee

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Hi, I am 2 weeks into the gluten-free diet. I feel really good. I challanged myself last Friday and had a reaction. Since then, I have been recovering from that gluten and am starting to feel good again. No more gluten for me, no sir. I did have a little pitty party about it. Got all upset and depressed. But I am ok with it now and realize it is what is best for me. I think it is even helping with the myasthenia gravis.

My husband was kinda put out by it all at first. He sure has come around. Thanks to those who gave me advice on that. He is now one of my biggest advocates. He sticks up for me at restaurants and makes them redo my meal if it is wrong. He likes to see that I am finally feeling better after so many months/years of not.

I am so grateful for this forum. I am glad there are people out there that want to help and know how I feel.

Bakinghomesteader

Hi, My name is micah,

I'm gluten free (I hope) for just 1 day. I made it 2 days before that, but then got glutened yesterday. I'm just learning what I can have, so I'm really on a limited diet right now...fruits, veggies, meat, dairy all with no additives since I don't know which additives contain gluten yet. I've been so sick for so long (9 years) - I always knew food made me sick but no idea what or why. Having been to so many doctors over the years with an IBS diagnosis and Chronic Fatigue Syndrome, Hypoglycemia, possible MS. Never have I gotten any help or any suggestions to check into diet. I went gluten-free for one month to try it out and my brain fog cleared and my legs (I have trouble walking) started gaining some strength. But I got off the diet to see what happened and didn't get back on until now a few months later. I instantly got all of the brain fog and severe fatigue back as soon as I went back on gluten. I'm hoping this will be the answer for me to feel better.

Nice to meet you! Micah

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I thought I would post here, even though I am 6 months gluten free. Jan. I thought I was gluten-free, but seems I was gluten light-wow if I only knew then what I know now! So truly not gluten free until Feb.

Feb. I was OK with all of it, I was relieved to know what was wrong with me all those years. Still ate out way too much and took too many chances-this lasted until about March when I really started feeling better and then got glutened. Learned my lesson-no more. I made the switch to paranoid gluten girl and will eat it only if I can see it being made and I can verify it is Gluten free. Through April felt the best I have ever felt. I had a little set back at the end of May, Thyroid issues, but we are getting those under control.

I went through the whole mourning process, though I really didn't think I would because I never really was a big fan of bread type foods-they always made my stomach hurt. Now I am over that and have discovered the joys of gluten free cooking. I have made lots of meal substitutes that to me are better than the gluten counter parts. I have found I prefer my cooking to the prepackaged stuff, but I have always been that way. And I am not a fan of Chicken, though I eat it almost every day :huh:

So the moral to my long windy post it-hang in there, it gets better. I now have so much energy that I drive my poor ADHD husband crazy! Life is what we make it. This is so doable.

My substitutes list:

For shampoo, conditioner, lip balm, and lotion I use Desert Essence. The entire line is Gluten free and Organic

Make up is Bare Minerals. I hate make up anyway, so this stuff is perfect

Namaste is the BOMB! My family devours the brownies and I am the only one gluten-free

I can make better fried Catfish than any southern joint.

Redbridge Beer is better than no beer

Malibu Rum is Gluten Free

Whole foods hamburger buns are good biscuit substitutes.

Glutino Mac and Cheese is my fave!

Coconut flour pancakes are the best thing after a soccer game

We are very lucky to have the resource. I cannot imagine what is must have been like in the years before the internet!

Kat.

So Bare Minerals is okay? I've been meaning to call them. Do you like the product? Is it worth the $$ ?

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So Bare Minerals is okay? I've been meaning to call them. Do you like the product? Is it worth the $$ ?

Bare Minerals is Okay. I love the product, but I hate the feeling or look of make-up. It covers all my little imperfections on my face without the caked on, clogged pore feeling of foundation.

I bought the starter kit at the end of Feb. for $65 and it lasted me until just now. I only had to buy more foundation because I spilled it :rolleyes: Otherwise, it would have gone another couple of months. I replace the mascara more often.

Kat.

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april 2007- acid reflux all my life, lactose intolerant 2years ago, celiac now.. I bake alot still playing around with how oats effect me however I think that they make my throat swell, there is so many hidden glutens in foods it's very difficut to find foods. aleast baked goods. vegies seem to be the snack of the day,water is the drink. My rosacea and adult acne has cleared up since my celiac diet.

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oh yeah , I discovered I don't like brown rice flour.. :(

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I have been doing okay...I have been on a gluten-free diet since around Mother's Day...and a dairy-free and soy-free diet for about the past 3 weeks. All of the above have made such a difference! I have tons more energy, am less irritable, and actually want to go out and enjoy life :) There have been a few set backs, I was glutened twice, and both times made me realize how sick I actually was for the past year, and it has made me a LOT more paranoid with what I eat when I am away from my house...but being paranoid is definately better than being sick :) It is ridiculous how sick you can be and not even know! And I have been trying to educate those around me (the question of "why can't you eat that" pops up atleast twice everyday...) I am just happy that I have found this forum to help me on this gluten-free journey :)

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I was diagnosed in Feb. and have been trying my hardest to be gluten-free ever since. At first I didnt realize what a serious and life altering disease celiac is. I am frustrated and confused to say the least, but have been doing as much research as possible to learn how to cope with everyday eating, life styles changes, etc. Im starting to wonder however, if I do not have more GI problems. Unlike most of the symptoms I read about here (diahrea, etc), when I eat gluten I just get intense left side pains and chronic constipation. Does anyone else experience these problems? I have had the blood test and the intestinal biopsy and was confirmed with Celiac disease, but cannot relate to most symptoms other celiacs describe.

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Unlike most of the symptoms I read about here (diahrea, etc), when I eat gluten I just get intense left side pains and chronic constipation. Does anyone else experience these problems? I have had the blood test and the intestinal biopsy and was confirmed with Celiac disease, but cannot relate to most symptoms other celiacs describe.

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good to know others have the left side pain. that is where most of my pain is & of course constipation, bloating, roaring/bubbling, brain fog, heart burn. the left side pain though is intense I have to sit up or lay down on my back to feel better.

Unlike most of the symptoms I read about here (diahrea, etc), when I eat gluten I just get intense left side pains and chronic constipation. Does anyone else experience these problems? I have had the blood test and the intestinal biopsy and was confirmed with Celiac disease, but cannot relate to most symptoms other celiacs describe.

I get major pain on my left side when I eat gluten and my small intestine roars at me! I got glutened yesterday and I will pay for three days at least!

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I hve baked many things successfully but now can't eat corn, potato, chocolate, dairy egg yolks, nor soy. Which makes it difficult to do the cake and the icing!! I really want him to like his cake!

I have a recipe book that has great recipes for baked goods without using gluten, eggs, dairy (and one other thing I can't remember at the moment). It's called "Cooking Free." I'd be happy to post a recipe for a cake and icing if you like. Also I have heard that Whole Foods (a grocery store chain near me) has a wonderful gluten free bakery. Here's a link to their store locations.

http://www.wholefoodsmarket.com/stores/list_PA.html

You can also order cakes from this store - I haven't tried it yet, but I hear from other Celiacs that it is really good:

http://www.stickyfingersbakery.com

I hope this helps!

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First couple of months were tough, Having to read EVERYTHING and coming to grips with places I could not go or things that I could no longer eat. But I dived into this wonderful site and got lots of cookbooks at the library and found reciepes on here and other places on net.

4 mo into this, I had to have some major surgery 2 weeks ago so I baked up some goodies ahead of time so I would no be so deprived and things hubby could just warm up. He now eats a lot of my gluten free items very easily.

Fathers Day I made a Choc Sheet Cake gluten-free and no one in family knew and this is their fav dessert.

Have learned to like mexican more and been more inventive in kitchen.

Bottom line- not counting breakfast (thats a yogurt daily) I have 14 meals a week to eat, if one is not so good, maybe next one will be. Even when I ate "normal" still had bad meals sometimes.

This has not solved all my probs nor did I expect it to but it has helped. (Left side pain person here too) I have found it worthwhile and made it a LIFE change, not a diet/ You go on/off diets. Life Changes are postive.

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Still experimenting with food elimination. Acne is not as cystic, still have it but not the big cysts. Eliminating casein milk the past day, feel much better. My depression seems better but is coming and going. I think my gum lines arent as receded. More energy, not as fatigued and exausted for no reason. Less nausea. I feel that I can eat more and not get bloated. Less brain fog, and probably countless other things I am not aware of. We'll see, only been a month...

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    • I too have heart palps, flutters, skips whatever you want to call them. Ecg shows nothing. I was told by my doctor it is due to my low iron which is due to celiac. They pretty much went away after being gluten-free. But occasionally do come back. I've actually been having them for the past 3 days. But I was glutened with really severe reaction about a week ago so not sure if its due to that. Or if iron is low right now. I am on supplements but it still goes up and down. I hear you about doctors. It seems if you don't do research yourself or ask questions they don't say or do or test for anything. 
    • For a number of years pre diagnosis I had irregular heartbeats - anything from a fluttering type thing to seemingly skipping one or more beats to rapid beats to something like a short drum riff. I had multiple ECG's which didn't find anything odd. It never did it when I was at the doctors or getting the ECG's. Sometimes it seemed to pound very hard & rapid, at these times I discovered if I just laid down flat on my back, it would restore normal rhythm almost instantly. These things happened at random whether I was at rest, sitting, standing, running or working hard. It was always short lived -- lasting only 1 to several seconds, perhaps the longest was close to a minute. I too have little faith in docs as I've had my share of being blown off, to misdiagnoses. The whole heart thing quit after I had been gluten-free for a while but if I get glutened, it returns.
    • My daughter had the HPV Vaccine last year. It was administered in three doses in April 2015, May 2015, and August 2015. Immediately after the third dose, she started having weird symptoms such has headaches, irritability, and a general feeling of being unwell (which she never had before). About three months later she started having gastro symptoms, most notably constant nausea. For several months we tried to figure out what was wrong and none of the doctors knew. After seeing many doctors and having a battery of tests, she was finally diagnosed with Celiac in August 2016. Her intestinal damage was a 3b Marsh score. No one else in our immediate or extended family has Celiac (myself and my other daughter were tested and are negative). No one else has symptoms or any indication that they could have Celiac. I feel like my daughter could have gone her whole life without being triggered and I'm feeling very guilty for making her get this controversial vaccine. I have done a lot of research and there seems to be conflicting studies regarding vaccines and autoimmune diseases. Some say there is no link, while others say there is a possible link, but it cannot be proven at this time. No one seems to know for sure what triggers Celiac...could it be vaccines? I'm wondering if anyone else feels that their Celiac Disease was triggered by a vaccine?  
    • Here is an article, albeit short, about Myocarditis and Celiac disease.  I have read before about a connection between the two and A-Fib is another one that can happen with undiagnosed Celiac. From one over-thinker to another......its the inflammation thing, along with maybe some genetic components to it.  I can't remember how long you have been gluten-free but it can take awhile for things to settle down, especially if your thyroid is wonky also.  I have Celiac and Hashi's so feel your pain, even though I have not had any cardiac involvement.  Some doctors really suck. I have a lifetime of bad with them so do not go that often, only when I have to and am leery about seeing any new ones. I am so done with that attitude of theirs. I think you need to find someone who has knowledge of Celiac and it's related conditions and who actually listens to the patient. That might be harder than finding a needle in a haystack but I wish you luck! 
      https://www.ncbi.nlm.nih.gov/pubmed/12045166
    • Older people often show clinically atypical symptoms of celiac disease, which can delay diagnosis. View the full article
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