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Newbies: How Is Everyone Doing?


Emily Elizabeth

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Rivergirl Apprentice

Today - I had my one month after diagnosis with Doctor's appointment. He asked the same question you are asking - How's it going? I told him FANTASTIC. I discovered in this last month how many things have gluten but how I do not miss any of it - simply because it makes me feel like crap! I must say when I see my friends eating pizza or sharing a desert I am not into it one bit. My migraines have went away, I dropped 12 pounds and still dropping, I sleep great at night and am not exhausted in the morning, my blood pressure is down, I am not retaining water - especially in my ankles, my bloating is going away, and my stomache does not kill me. My friends say I look fantastic - my skin complexion is much better. The doctor even noticed visible changes in me only after 4 weeks. I am so very thankful after 20 years of not knowing how sick I really felt, that I now know why I felt that way.I have much to learn - my job requires much travel and lots of client dinners and lunch meetings - which is not fun for me any more. I am not very trusting of restaurants - they say certain foods are gluten free and the next thing you know you are sick. Like someone else said on this forum, I too have become a gluten-paranoia , but that is ok if I feel better. In 11 months, the Doctor will check me out again and I expect if I stay on track my intestines will look completely different!


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erinjk Newbie

I'm very new to Celiac Disease. I've just had a biopsy done and it strongly suggests that I have Celiac's. I am waiting to talk to the Dr. to see if I need to do more blood tests before starting a gluten free diet! I can't believe how many products there are to watch out for :blink:

Am not sure how I feel about telling my close friends about this, as I am still having troubles dealing with this myself! :( We often go out for lunch but in my small town it's not going to be possible to find Gluten-free places to eat!

I keep hoping the Biopsy is wrong, but I guess I'll find out next week.

Crystalkd Contributor

If your biopsy came back like that I would at least start cutting back on the gluten now. You have nothing to lose by doing so. I started the diet the day after my biopsy. I feel better already! The diet was the only way one of my doctors figured it out. When I got my biopsy back it was negitive so I went to Mc Donalds and had lunch. BAD IDEA!!! I went to my Interenist and told him what was going on. He told me that the diet is the only true test and that if I had that reaction I had it and not to go off my diet agian.

Okay...couple of questions about foods. Are koolaid, miricle whip and hershey chocolate bars okay? If not could someone please point out the problem ingrediant. I'm still trying to get a handle on this stuff!

Emily Elizabeth Enthusiast

My gums were receded too. My dentist actually mentioned it and told me I needed to brush more lightly. I had no idea that was related to celiac disease.

I think my gum lines arent as receded.
chattyCathy Newbie

I have been gluten-free for 2 months and what a difference! My symptoms were brain fog, weight gain, constipation, low iron, "too good to be true" cholestrol and the list goes on and on. Within 3 days I noticed a difference. I am actually starting to lose weight! I have NEVER seen my stomach so flat, even though I'm still overweight. I have been on every diet known to man, so this diet is a breeze. In fact I have to smarten up now, eating nachos for breakfast every morning can't be good for you! :D I have so much energy and the crazy thing I've noticed is that I don't have to get up to pee in the middle of the night like I used to...what's up with that? My post-nasal drip (which I lived with most of my adult life and thought it was normal) disappeared. My hubby even noticed that I'm not sniffing all the time.

The way I discovered I am celiac (self-diagnosed) is that I decided to remedy my chronic constipation once and for all. I started eating big bowls of Fibre 1 cereal. I started throwing up in the middle of the day for no reason, lots of stomach cramps and my brain fog got so bad I thought I was literally dieing. I started thinking that 43 must be the pinnacle and then you start slipping into old age. Boy was I wrong! Around the same time my 9 yr old son was diagnosed with Type 1 diabetes. When I did research, celiace kept coming up and I had most of the symptoms! What a life-altering experience, to feel like moving and doing! I am proud (and embarrassed) to say I have been "going" on my own for the past month. Took me 20 years to get to that point. I was glutened only once and I knew it right away. My stomach blew up to pregnant size and I was exhausted. I still get acid reflux, but I notice tomatoes and anything with vinegar in it (like mustard) or too much pepper will set it off. I've read the debate on vinegar and I've decided it's not for me.

Anyways, just had to talk about it. Thanks to the people who post on this message board, I've gotten quite an education! One question though, is foot cramping a symptom? I get a lot of them.

Cathy from Saskatchewan, Canada

Emily Elizabeth Enthusiast

I keep wondering if I should go on a soy-free and dairy-free diet too. I am definitely feeling better, but I still know that I'm not right yet intestinally. I don't know if my intestines just need time to heal (strictly gluten-free since 5/15/07 - glutened 3 times) or if soy or dairy are the culprits. What made you decide to cut them out of your diet?

I have soymilk everyday. I guess I could do rice milk instead but there is less protein and calcium in that. Do you have suggestions for what to eat in place of soy and dairy?

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.
Emily Elizabeth Enthusiast
One question though, is foot cramping a symptom?

Yes! I used to get foot cramps all the time near the end of the day!! They have gotten better since I've been gluten free, but I still get them once and awhile.


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Emily Elizabeth Enthusiast

Good luck with your appointment next week. If you do have Celiac Disease, I would recommend getting a book about it. It really helped me cope with it. I would get very frustrated when people would ask me questions about it like I should be an expert already. The book I got is called "Celiac Disease: A Hidden Epidemic" by Peter H. R. Green, M.D. and Rory Jones. It helps you understand it better and you can explain it better to people as well.

About telling your friends, I wouldn't be embarrased about it. I think it is better to let people know. Imagine if they all surprised you with a birthday cake. That would be worse. Most people just think of it as an alergy to gluten. They don't look at me differently.

I'm very new to Celiac Disease. I've just had a biopsy done and it strongly suggests that I have Celiac's. I am waiting to talk to the Dr. to see if I need to do more blood tests before starting a gluten free diet! I can't believe how many products there are to watch out for :blink:

Am not sure how I feel about telling my close friends about this, as I am still having troubles dealing with this myself! :( We often go out for lunch but in my small town it's not going to be possible to find Gluten-free places to eat!

I keep hoping the Biopsy is wrong, but I guess I'll find out next week.

Emily Elizabeth Enthusiast

I know how you feel. I have been trying to be gluten free for about a month and I still wonder if I am getting small amounts from my makeup and such. I did find out that my lipstick had gluten in it and I stopped using it. It is truly overwhelming to begin this new lifestyle. I wish there were more dieticians out there that could help us through it. I would love for a dietician to come to my house and look over everything I use on a daily basis. That would be so helpful. We are already stressed out enough having to deal with the diagnosis, it's really hard to also have to figure out exactly how to "take the right medicine" too. We're not doctors or pharmacists, but it seems we have to be - and fast.

The one thing I would ask your doctor would be to test you for any nutrient deficiencies. I have been reading a book about Celiac Disease and they say that doctors should test for that. Mine didn't so I'm going to ask them to at my 6 week follow up appt which is approaching. Good luck!

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.

Emily Elizabeth Enthusiast

That must be really hard to not have a reaction to gluten that you can identify. The first time I was glutened since I was on the diet, I was so sick, but ironically so happy at the same time because I at least new that I could tell a difference. I definitely know what you mean about being resentful. It's hard to watch my husband eat things that I can't. I don't want him to change his whole lifestyle just for me, but its definitely hard to see gluten in the house. I don't even want to have it near me! They say that just 1/8 tsp of gluten will damage your intestines. If I were you, I would go back to my doctor after it has been six months from diagnosis and have another endoscopy done. That way they can see if your intestines are healing. Hang in there. Hopefully you will feel better soon!

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

Lollipop Newbie
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

Have you tried Namaste brownie mix. My whole family devours them and says that they're better than regular brownies. They also keep well when frozen.

becca

chatycady Explorer

Foot cramps, leg cramps, cramps in my hand and even jaw! I've had it all, now very rarely. I've been gluten free for about 4 months. I have had a few accidents and each time the cramps came back. Every week I get stronger and more symptoms go away.

I've also noticed this month, no monthly cramps! Alleluia!

Guest maybe I have celiac
My gums were receded too. My dentist actually mentioned it and told me I needed to brush more lightly. I had no idea that was related to celiac disease.

Emily Elizabeth,

Thanks for starting this string!

As far as the gum lines, i'm not sure but I think I noticed a small difference. Interesting comment regarding 1/8 tsp ruining the intestines. For me I think that gluten and casein have adversely affected my neuropathies to a greater extent than my intestines, but the more I read the more I see how subtle going gluten-free and CF has affected my brain and gut.

For a long time I have suffered depression, never done illegal drugs and I have been a moderate drinker and have always tried to do the right thing. I have been haunted by this disease and have read extensively about it as the doctors just want to perscribe meds. I did a lot of Internet searches and came across this link: Open Original Shared Link

The article mentions that grain free and dairy free cured a man of his life long depression. This article eventually led me to this site and I have been hooked on this site for the past month trying to learn everything that I can. Talk about small changes making very large changes in one's life; it is kind of stupid that I have been dogged all these years because I have been eating grain and drinking dairy. They are suppose to be healthy and after all grain is the largest part of the U.S. Government's food pyramid. So low and behold, I come across an article about a British commoner and have possible been cured of my severe depression!?! Goes to show you can always trust the British (and Canadiens) more than the US Govt and American doctors.

Off of my soap box,

Jim

Guest maybe I have celiac
I keep wondering if I should go on a soy-free and dairy-free diet too. I am definitely feeling better, but I still know that I'm not right yet intestinally. I don't know if my intestines just need time to heal (strictly gluten-free since 5/15/07 - glutened 3 times) or if soy or dairy are the culprits. What made you decide to cut them out of your diet?

I have soymilk everyday. I guess I could do rice milk instead but there is less protein and calcium in that. Do you have suggestions for what to eat in place of soy and dairy?

Emily,

Reading more of this, I have also cut out MSG, but not soy yet.

chattyCathy Newbie
Foot cramps, leg cramps, cramps in my hand and even jaw! I've had it all, now very rarely. I've been gluten free for about 4 months. I have had a few accidents and each time the cramps came back. Every week I get stronger and more symptoms go away.

I've also noticed this month, no monthly cramps! Alleluia!

Well that is so good to hear! I've had wicked periods too and I'm hoping things might settle down. The dr always blamed my low iron on my heavy periods, but now I know it's just another symptom of celiac. Isn't it great to finally find an answer? I have so much energy now I was wondering if my feet were cramping because I'm on them so much more! :D

Lollipop Newbie
I keep wondering if I should go on a soy-free and dairy-free diet too. I am definitely feeling better, but I still know that I'm not right yet intestinally. I don't know if my intestines just need time to heal (strictly gluten-free since 5/15/07 - glutened 3 times) or if soy or dairy are the culprits. What made you decide to cut them out of your diet?

I have soymilk everyday. I guess I could do rice milk instead but there is less protein and calcium in that. Do you have suggestions for what to eat in place of soy and dairy?

If you're using rice milk just be careful because some of it has gluten in it. I found that out the hard way.

becca

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

My boyfriend just bought me the starter kit (as a surprise! I've been eyeing it for ages... he even managed to get the right color!) about a week ago. It's incredible stuff. I'm not much for cakey makeup, and I hate looking "fake", so this stuff is perfect. The starter kit runs about $60 and comes with three brushes, a moisturizer, two foundation colors, a blusher, and the mineral veil. According to the enclosed catalog, the brushes that come with the kit would cost roughly $70 if purchased separately. It's cheapest just to buy the kit then.

I emailed the company a couple weeks ago to find out what was gluten free, and they told me most of the powder products were safe. This is the email:

Thank you for contacting Bare Escentuals. All bareMinerals products

are gluten free. This includes bareMinerals foundation, all over face

colors, blushes, eye shadows, glimmers, glimpses, liner shadows, brow

minerals and body minerals. Many of our i.d. Bare Escentuals products

are also gluten free, including lip sticks, lip liners, lip glosses,

quicksticks, and mascara.

If you have any additional questions, please feel free to call us at the

number below.

B.E. Beautiful,

Mayra

Customer Contact Representative

Bare Escentuals

1.800.227.3990

www.bareescentuals.com

The "rever-upper" moisturizer says it has "oat bran extract". I don't know whether or not this is really safe to use. I tried it for a couple of days but felt uncomfortable with that, so I switched back to my regular moisturizer for the time being. I've only been gluten free for about a week and want to wait a while to introduce anything questionable, out of fear that while I'm still healing I might not be able to "notice" the signs of anything wrong.

As for my own recovery... Well, it's been a week gluten-free for me. Luckily, I tried going gluten free before, for nearly a month, so I already had the hang of most of the major stuff. My shampoos, conditioners, lotions, and makeup are all gluten free already so I'm not worried about that. My mascara may not be gluten-free, but I'm not concerned since it just sits on my eyelashes. I feel like I'm recovering more slowly than I did the first time around, maybe it's just the shock of switching back and forth. Or maybe, I was so shocked to see any improvement at all the first time around that this time is not such a "wow!" moment. I'm not sure.

The good news is I have a bit more energy and I haven't been bogged down with nearly as much depression or anxiety. I haven't had D or C in the last week, which is excellent considering that on gluten I'd alternate between the two and never seemed to have any "normal" bowel movements at all. I've still been getting headaches, but not migraines like they were on gluten. I didn't get a headache at all last night, which is huge because when I went back on gluten I was having migraines every single night.

However, my skin is still really itchy and my hair is falling out even more than it was before. I just got a haircut about three weeks ago to deal with the excess hair-falling out, but it already it's looking really thin and ragged. I may go for a shorter cut this weekend just until my hair starts coming back in. In any case, it's summer and hot so maybe having short hair won't kill me :( I'm still having pretty intense nightmares, too, but gradually they're being replaced but just plain weird dreams (normal for me) and I'm not waking up as often in the middle of the night. I've already managed to sleep through a couple nights the whole way through, but when I was on gluten, I'd wake up and not be able to fall asleep again for quite some time.

The hardest part has been that I've been at my boyfriend's house every since I went gluten free. To make a long story short, I came home for college and there weren't any places hiring for summer where they live, so my boyfriend's family said I could come here and look. I'm already really close to his family so it's not a huge deal, but it's been stressful anyway. They're busy learning about the things I can eat, and it's not really my house so I still feel kind of uncomfortable bringing in all my own food and cooking it at odd times of the day. I'm considering cutting out dairy, but I'm not wanting to make it MORE awkward than it already is. Plus I've been really busy here, so I haven't had a whole lot of time to just sit on my but and "recover". On the other hand, there are a lot more restaurants here that can provide gluten-free food and as far as I know I haven't been contaminated yet. It would be hard to tell though, since I'm still healing and not feeling my best anyway. I usually get the big D a couple hours after eating any gluten, even without my knowing I ate it, and that hasn't happened yet. Oh, and there's a gluten free bakery pretty close to my bf's house. I've never been but we're going to try to go tonight. Yay!

So I guess then, there have been some ups and downs. I've had some success, but it's hard to adjust to. I'm still waiting to really feel better, so I wonder if cutting out gluten is even helping, or if it is and I'm just getting CCed. I'm trying not to freak out about that, since in either case it will take time to figure out and get used to. It will take time just to heal, in any case. I need to be more serious about the dairy thing, I think it might help.

Emily Elizabeth Enthusiast
Talk about small changes making very large changes in one's life; it is kind of stupid that I have been dogged all these years because I have been eating grain and drinking dairy. They are suppose to be healthy and after all grain is the largest part of the U.S. Government's food pyramid.

I am baffled by that too! It's ironic that when I really started trying to eat "healthy" (which of course included lots of wheat fiber) I ended up being diagnosed with Celiac Disease. I am reading that the body can't actually digest one of the amino acid chains in gluten. Not everyone has the reaction that Celiacs do, but I am starting to wonder how healthy it is for everyone. I also read that years and years ago wheat did not have the chain that it has now - so we could have eaten it then! Very interesting stuff. I'll need to read the whole book about 5 times before I really understand it.

Anyway, I'm happy to hear that you are feeling better! Thank goodness you found that article!

Emily Elizabeth Enthusiast
If you're using rice milk just be careful because some of it has gluten in it. I found that out the hard way.

becca

Yikes! Thanks Becca.

Guest maybe I have celiac
I am baffled by that too! It's ironic that when I really started trying to eat "healthy" (which of course included lots of wheat fiber) I ended up being diagnosed with Celiac Disease. I am reading that the body can't actually digest one of the amino acid chains in gluten. Not everyone has the reaction that Celiacs do, but I am starting to wonder how healthy it is for everyone. I also read that years and years ago wheat did not have the chain that it has now - so we could have eaten it then! Very interesting stuff. I'll need to read the whole book about 5 times before I really understand it.

Anyway, I'm happy to hear that you are feeling better! Thank goodness you found that article!

Yeah, I guess you could say if we started to eat paper or plastic our bodies would not know what to do with it and we would go crazy and get sick. It's kind of making sense. Wheat, grains, gluten have only been in the human diet for only 10,000 years so it kind of makes sense to me that my body sends signals that it doesnot know what to do with it, I am convinced that it makes me physically and mentally ill...

Emily Elizabeth Enthusiast

So last night I stopped eating about 4 hours before I went to bed (usually I eat up to 1-2 hours before since I go to bed really early - 8pm) and also didn't have any wine and was much better intestinally this morning. I still had soy today. I LOVE wine though, so I really don't want to believe that it is a problem! I did notice that I was worse on the days that I had red wine (my favorite of course) as opposed to white wine. I wonder if going to bed with an empty stomach is the key?

emorgan1985 Rookie

:(

Was just diagnosed this month with Celiac. Didn't realize you had to check your shampoo and soap?? Wow. If anyone has any advice they can give me for just starting out, Im feeling behind and I haven't even started yet! What kinds of things do I look for on ingredient labels on my food? How about on my shampoos, soaps, deoderants? AHH! Any help would be wonderful!!

Emily Elizabeth Enthusiast

I was just diagnosed less then 6 weeks ago so I am new as well. I was REALLY overwhelmed with the thought of having to check soaps, shampoos and cosmetics on top of adjusting to the new diet and avoiding gluten when I went out to eat. I would recommend focusing on the food at first. As long as you don't ingest your shampoo, lotion, etc. you will be okay. I do recommend confirming that any chapsticks or lipsticks that you use are gluten free. I found out that one of mine was not. We end up consuming a lot more of that then we would think. They say that 1/8 tsp a day is enough to do damage to your intestine.

When I was stressed out that I was not getting better (haha still am, so I should read this myself!), someone told me that our intestine has to heal just like a broken bone has to heal. Even if your bone is in a cast and your are treating it with the utmost care, it will still hurt and will not heal right away. Do your best to eliminate gluten from your diet, but don't feel like you aren't doing things right if you are not feeling better right away. Take even the smallest signs of healing as a sign that you are doing the right thing.

I recommend buying the dining cards from triumph dining if you like to go out to eat. Its much less stressful. The cards come in all different languages explaining what we can and can't eat - Open Original Shared Link. It worked for me at The Cheesecake Factory. By the way, the Godiva Cheesecake is gluten free! Also Outback Steakhouse, Bonefish and PF Changs all have gluten free menus. Just be sure to politely ask that they use freshly cleaned pans and serving utensils to cook your food. I got glutened at PF Changs even after ordering from the Gluten Free Menu.

There are also a lot of good lists on this forum for what is safe to eat. If I question a product, I simply type it into the search engine and it usually comes up on this site. Here's a link to a thread where people list things that are safe: Open Original Shared Link.

The last thing I recommend is buying a few cookbooks if you like to cook and a book that explains the disease. I felt much better when I could bake the things I used to bake and especially when I read more about the disease. I'd be happy to recommend a few if you like.

I hope this is helpful. This forum has been very helpful for me.

:(

Was just diagnosed this month with Celiac. Didn't realize you had to check your shampoo and soap?? Wow. If anyone has any advice they can give me for just starting out, Im feeling behind and I haven't even started yet! What kinds of things do I look for on ingredient labels on my food? How about on my shampoos, soaps, deoderants? AHH! Any help would be wonderful!!

erinjk Newbie
I'm very new to Celiac Disease. I've just had a biopsy done and it strongly suggests that I have Celiac's. I am waiting to talk to the Dr. to see if I need to do more blood tests before starting a gluten free diet! I can't believe how many products there are to watch out for :blink:

Well I received my results from the biopsy and they say I am at the very early stages of Celiac...which explains why I don't have any of the symptoms of Celiac except Low Iron. <_<

I will have to follow the Wheat/Gluten Free diet but if I get glutened I won't know it! I'm lucky in that sense but will find it difficult to stay on the "diet" since I don't react.

I am 27 now and am wondering if I will react to Gluten eventually? Or will I always have little to no symptoms?

stennis07 Newbie
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

Likewise, I was diagnosed in April...THE DAY BEFORE MY BIRTHDAY. C'mon. MY 18TH BIRTHDAY. Honestly.

My senior year in high school...needless to say it sucked. I am a very active runner...so there went my cross country season and track season down the toilet. Anyways, I also don't have very bad symptoms...thank the Lord. Then again, I don't know when I'm glutened. Actually, up until the summer of '06 I was "normal". No symptoms at ALL. Then BAM! All it took was three "attacks", each one two months apart, and a hospital visit to the ER, for me and my mom to say..."we need to figure this out". So we ended up at a gastroenterologist (still amazes me that I can spell it, let alone say it :) and he right away tested me for celiac----I WAS DIAGNOSED WITHIN LESS THAN 6 MONTHS. The average length of time it takes for a person to get diagnosed is 9 YEARS. Surely I have been shown mercy.

So, yea, no birthday cake for me...or cake at my open house for graduation--NOT! My mom found this cake mix and I had my own little personal cake (chocolate!!) at my open house! I LOVED IT!

Yes...it has been VERY frustrating transitioning into this lifelong diet.

Different toaster than my family, different strainer, different margarine, different vitamins...shampoo, gum, NO twizzlers--it's killin' me....my favorite foods that I've ate for the past 18 years of my life....pretty much gone. People ask "What DO you eat?!" "Well, air seems to be gluten free...unless you're in the same room as someone making gluten toast in the toaster (I really do feel bad for celiacs who are this sensitive!)"

I'm headed for college next year--and I'm running in college (cross country, indoor track, and outdoor track) so this summer is proving to be difficult in getting the calories I need to run my many miles...and at 5'4" 120 lbs. as of last April, I can't afford to lose much more weight --I know I've lost a bit.

OH and not to mention transitioning into college life and never going to be able to order-out pizza..

(I got it approved to appeal my food plan....so I REALLY don't know what I'm going to do about food in the dorms!!!)

I'm not sure if I would rather have major symptoms showing, or to deal with this disease and being a new college freshmen while running....I guess it will have to be the latter.

As long as they don't take away popcorn and cheesecake from me....and running....I'll be okay :)

(And I have checked the popcorn I eat for gluten...I'm A-OK!....AND there are gluten free crusts mixes for cheesecake!)

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      CT with contrast.

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      Shingles - Could It Be Related to Gluten/ Celiac


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    • JoJo0611
      I didn’t know there were different types of CT. I’m not sure which I had. It just said CT scan with contrast. 
    • Scott Adams
    • Scott Adams
      I had the same thing happen to me at around your age, and to this day it's the most painful experience I've ever had. For me it was the right side of my head, above my ear, running from my nerves in my neck. For years before my outbreak I felt a tingling sensation shooting along the exact nerves that ended up exactly where the shingles blisters appeared. I highly recommend the two shot shingles vaccine as soon as your turn 50--I did this because I started to get the same tingling sensations in the same area, and after the vaccines I've never felt that again.  As you likely know, shingles is caused by chicken pox, which was once though of as one of those harmless childhood viruses that everyone should catch in the wild--little did they know that it can stay in your nervous system for your entire life, and cause major issues as you age.
    • trents
    • Clear2me
      Thanks for the info. I recently moved to CA from Wyoming and in that western region the Costco and Sam's /Walmart Brands have many nuts and more products that are labeled gluten free. I was told it's because those products are packaged and processed  in different  plants. Some plants can be labeled  gluten free because the plant does not also package gluten products and they know that for example the trucks, containers equipment are not used to handle wheat, barely or Rye. The Walmart butter in the western region says gluten free but not here. Most of The Kirkland and Members Mark brands in CA say they are from Vietnam. That's not the case in Wyoming and Colorado. I've spoken to customer service at the stores here in California. They were not helpful. I check labels every time I go to the store. The stores where I am are a Sh*tshow. The Magalopoly grocery chain Vons/Safeway/Albertsons, etc. are the same. Fishers and Planters brands no longer say gluten free. It could be regional. There are nuts with sugar coatings and fruit and nut mixes at the big chains that are labeled gluten free but I don't want the fruit or sugar.  It's so difficult I am considering moving again. I thought it would be easier to find safe food in a more populated area. It's actually worse.  I was undiagnosed for most of my life but not because I didn't try to figure it out. So I have had all the complications possible. I don't have any spare organs left.  No a little gluten will hurt you. The autoimmune process continues to destroy your organs though you may not feel it. If you are getting a little all the time and as much as we try we probably all are and so the damage is happening. Now the FDA has pretty much abandoned celiacs. There are no requirements for labeling for common allergens on medications. All the generic drugs made outside the US are not regulated for common allergens and the FDA is taking the last gluten free porcine Thyroid med, NP Thyroid, off the market in 2026. I was being glutened by a generic levothyroxin. The insurance wouldn't pay for the gluten free brand any longer because the FDA took them all off their approved formulary. So now I am paying $147 out of pocket for NP Thyroid but shortly I will have no safe choice. Other people with allergies should be aware that these foreign generic pharmaceutical producers are using ground shellfish shell as pill coatings and anti-desicants. The FDA knows this but  now just waits for consumers to complain or die. The take over of Wholefoods by Amazon destroyed a very reliable source of good high quality food for people with allergies and for people who wanted good reliably organic food. Bezos thought  he could make a fortune off people who were paying alot for organic and allergen free food by substituting cheap brands from Thailand. He didn't understand who the customers were who were willing to pay more for that food and why. I went from spending hundreds to nothing because Bezo removed every single trusted brand that I was buying. Now they are closing Whole foods stores across the country. In CA, Mill Valley store (closed July 2025) and the National Blvd. store in West Los Angeles (closed October 2025). The Cupertino store will close.  In recent years I have learned to be careful and trust no one. I have been deleberately glutened in a restaurant that was my favorite (a new employee). The Chef owner was not in the kitchen that night. I've had  a metal scouring pad cut up over my food.The chain offered gluten free dishes but it only takes one crazy who thinks you're a problem as a food fadist. Good thing I always look. Good thing they didn't do that to food going to a child with a busy mom.  I give big tips and apologize for having to ask in restaurants but mental illness seem to be rampant. I've learn the hard way.          I don't buy any processed food that doesn't say gluten free.  I am a life long Catholic. I worked for the Church while at college. I don't go to Church anymore because the men at the top decided Jesus is gluten. The special hosts are gluten less not gluten free. No I can't drink wine after people with gluten in their mouth and a variety of deadly germs. I have been abandoned and excluded by my Church/Family.  Having nearly died several times, safe food is paramount. If your immune system collapses as mine did, you get sepsis. It can kill you very quickly. I spent 5 days unconscious and had to have my appendix and gall bladder removed because they were necrotic. I was 25. They didn't figure out I had celiac till I was 53. No one will take the time to tell you what can happen when your immune system gets overwhelmed from its constant fighting the gluten and just stops. It is miserable that our food is processed so carelessly. Our food in many aspects is not safe. And the merging of all the grocery chains has made it far worse. Its a disaster. Krogers also recently purchased Vitacost where I was getting the products I could no longer get at Whole Foods. Kroger is eliminating those products from Vitacost just a Bezos did from WF. I am looking for reliable and certified sources for nuts. I have lived the worst consequences of the disease and being exposed unknowingly and maliciously. Once I was diagnosed I learned way more than anyone should have to about the food industry.  I don't do gray areas. And now I dont eat out except very rarely.  I have not eaten fast food for 30 years before the celiac diagnosis. Gluten aside..... It's not food and it's not safe.  No one has got our backs. Sharing safe food sources is one thing we can do to try to be safe.        
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