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njbeachbum

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njbeachbum Explorer

hello everyone, my name is joe and i am brand new to this.... all of this. let me share my story with you all. i am now 30, but when i was 15 years old, i was severely underdeveloped for my age. i began having chronic gastrointestinal symptoms for a few months but was too embarrassed to address them. when i finally did, i became a doctor's lab experiment... testing for growth hormones, all of the scoping and GI series, diet diaries, the whole nine yards. after many months of tests and doctors visits, my doctor ruled out gluten enteropathy and made the diagnosis of crohn's disease. i was 16 years old at the time. i was treated with pentasa, and began to respond positively. aside from all of this i was a normal, active kid. valedictorian of my high school class. smart and well liked. i ended up going away to college, and that was when i both came out of my shell socially and had a huge growth spurt. the doctor who originally diagnosed me relocated out of state, and i began to see a regular, small town family doctor who was a "gastro specialist". i would see him annually for a check-up and to refill my prescription. i would go through good and bad phases with my symptoms over the years, and succumbed to the fact that this was just the way it was going to be for me. i worked my life around it and never really let it affect me to any great degree. i guess i have a positive attitude in that respect. i'm no stranger to life's challenges, as i'm also a gay man and had to come out to my friends and family during this time. i've always thought that life is all about what YOU make of it and who you choose to surround yourself with. i have nothing but loving family and friends around me and that has made the road much easier for me. so then fast forward to now...........

having started a new job a little over a year ago, i decided to find a new local gastroenterologist that was in my insurance plan. over this same time frame, i had noticed some negative changes in my symptoms. so i found a new doctor and made my first consultation. he was great. i told him that i hadn't been examined for changes in my condition since i was diagnosed 14 years ago and he was floored. he sent me for bloodwork and scheduled a colonoscopy and a capsule endoscopy. when i went in to see him for my follow up on the colonoscopy, he came into the exam room and said "i was just discussing with my colleague that this is very interesting".... something you don't really want to hear a doctor say. my colonoscopy results were fine and clear, however, my blood tested positive for celiac disease and my folic acid and hemoglobin levels. i was floored. it is very possible that this is what i've had all along and the crohn's diagnosis was wrong. how could this be? i've been poisoning myself and suffering for all of these years? so, he scheduled me for an endoscopy to get some tissue biopsies on 12/21 to make a final diagnosis (on whether i have celiac alone, or celiac and crohn's), but he said that the blood work rarely lies.

so that brings me to right now. i made an official attempt to begin gluten free living on saturday 12/1/07. i attended a wedding that day so my dinner was a bit out of my hands, but i think i was good for the most part. so at day 4, i am beginning to feel some frustrations. i feel like there are so few choices that are really safe out there. even things that i think are ok will end up having a risk of contamination. one of the great joys in my life has been FOOD. i am 100% italian and live for breads and pasta. i LOVE going out to dinner with my friends. having a beer. having a lot of beers. having a few martinis. (do you see a pattern here??) anyway, i'm going to have lots of questions along the way, so i hope that all of you will be happy to share your experiences with me.

one of the things that boggles my mind is that i was misdiagnosed for such a long time. how could i know? how could anyone know? in one week i've found out SO much about celiac disease. the symptoms that i've researched describe exactly what i've been feeling for years.... from the yucky GI symptoms (described on these websites with frightening accuracy), to being tired all the time... and weak sometimes... and headachy and dizzy... oh and don't forget the itchy patches of skin that i've had since i was a teenager. all this time i've maintained a pretty upbeat life however. i am a cpa, with a great career. i have amazing and loving friends and a wonderful social life. i play competitive volleyball both indoors and at the pro level on the beach. i work out 2, 3 or more times a week. i'm also single, but we don't need to talk about that :P how could i be "suffering" with this disease and have all of these positive things in my life? well, i've decided to take a positive outlook on things. what i like about this diagnosis is that it puts ME in control of how i feel. i know it's going to be hard, but if i start to feel better it will make it all worth it.

so i think i've said enough by now. if you made it through this entire post, you are a saint. i'd love to hear some of your stories, and will do a little more searching around this site to get to know some of you. thanks for reading :)


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darlindeb25 Collaborator

Well neighbor, me being a NY beachbum, I think you have a good start on the thought process. Your years of diagnosis with the wrong disease is so very normal. I think 90% of us have this same problem. Well, it's safe to say a very large percent of us never get a diagnosis of celiac, we figure it out ourselves and go gluten-free without a doctor diagnosis because we give up on docs. They failed me, over and over, for 25 yrs. My sister was diagnosed at 43 yrs old and I didn't have insurance at the time, so I went gluten-free too, now our dad is gluten-free. She and I for 7 yrs, he for 3.

The lifestyle will get easier as you figure out what does and doesnt have gluten. It is very difficult to figure out where you can and cant eat safely in the outside world. Cross contamination is the biggest issue. Places that offer gluten free food are only as safe as the server is educated. The cook may be wonderful, but the waiter may know nothing. By the way, there is gluten-free beer now, so you can still have beer! :P You have to become familiar with the many names for wheat, rye, barley, and oats. Some say we can trust oats, I do not. Some celiac's can eat oats, I never could. You need to be careful of vitamins, medications, etc, they to contain gluten and do not have to list allergens. DO NOT TRUST YOUR PHARMACIST TO CHECK FOR GLUTEN FREE, you should always call the lab yourself and check, some pharmacist's tell you what you want to hear. Some have no idea what gluten is and they will read the ingred and the word "gluten" is not there, so, of course, there is no gluten in their minds! Always call yourself, do not trust another.

Any questions, feel free to ask, feel free to email.

Guhlia Rising Star

I was sick for 26 years before diagnosis. The doctors only took me seriously when I started having chronic diarrhea and losing weight like crazy (I was tiny to begin with). Unfortunately, this is a very typical dx story for a Celiac as is yours.

It really will get easier over time. The more strict you are with the diet, the easier it will get. Gluten can cause horrible cravings and withdrawal symptoms.

If you're getting biopsied for Celiac you will need to be eating gluten up until the test. Eating gluten light or gluten free will likely cause a false negative. Also, be aware that a negative biopsy can't rule out Celiac. Villi damage is often patchy and easily missed by biopsy. It sounds as if you have textbook Celiac symptoms, so give the diet a try even if they don't find damage. The bloodwork doesn't lie.

We haven't found a bread that we love yet, so I can't help you there. For pasta we highly recommend Tinkyada. If you don't like that, try Bi-Aglut. Its more expensive and harder to find, but its supposed to be really good. We always use Tinkyada and I can't tell the difference between that and wheat pasta.

Good luck and welcome to the forum!

mamaw Community Regular

Welcome

Your story of possibly being miss dx'd is quite normal--- sad to say but normal.....I love the US but we are so far behind in the celiac world... I wish we were like Italy where as every child gets tested before kindergarden & food is very good & available & free.....

You are on the right path. It does take some changes on your part. You can still drink beer but the label now will read gluten-free beer..... I like REDBRIDGE the best...... Pasta is another thing you can continue with. My all time favorite pasta is BiAglut. ( for us it is closest to the real thing)

In todays gluten-free world there are so many excellent products available to us.... For a crusty roll & baguette order from Everybody Eats out of Brooklyn.... they are pricey but oh so good. Donuts try Celiac Specialities:; they have the market for yummy donuts.........Bagels & eng muffins ; Joansglutenfreegreatbakes are wonderful.

If you bake on your own there are several one to one flours available. I use betterbatterflour a one to one ratio. Very easy.

In Spring Lake Heights, NJ there is a store called " epicure" owner is Chris Bacchetti. He has a large selection of products. And goodies from the grainless baker ( Dan).

Good Luck

If I can be of any help please e-mail me.....

mamaw

happygirl Collaborator

Wanted to welcome you to the board!! Hope that you make yourself at home here and find ideas to help make gluten free living a bit easier!

njbeachbum Explorer

Thank you, thank you and thank you!! Thanks for the warm welcome and thanks for the great suggestions. I'm looking forward to trying out everything. I have the Tinkyada pasta at home and might try it for dinner tonight. Canned crushed tomatoes are ok, right? I know Premio sausage is gluten free too, so that will be a yummy dinner. Also, I was planning a visit to Epicure in Spring Lake this Saturday. I live at the Jersey Shore and am only about 20 minutes from there. I'm hoping that I can find some good bread, because that is what I am missing most. I am having the hardest time with figuring out what to do for lunch. I've been bringing salads everyday to work with the bagged lettuce mix, carrots, perdue short cuts chicken (says gluten free on the box!), an egg and some chopped up cheddar... with plain olive oil and balsamic vinegar. But I fear that I will get bored with salads. I already miss my sandwiches :(

All of this can seem really daunting. I did a quick look around the house and realized that my Aveeno hand lotion has oats and wheat in it..... and also my Paul Mitchell Tea Tree shampoo has wheat in it. Everything else looks safe. I've seen posts about taking a whole weekend to decontaminate your kitchen, which seems a bit extreme. I mean, my pots, pans, dishes, utensils all are clean and i wipe down the counters and stove regularly. I think I should focus my efforts on cooking and eating right.

Now this MAY seem silly, but one of my biggest concerns is what alcohol is safe for me to drink. Before Celiac had entered my life, I began drinking flavored vodkas with club soda on a regular basis. Now I fear that the flavored vodkas are not good. I mean let's face it... I am a single 30-year old, with a normal social life who will go out to bars and have some drinks on the weekends. I wanna just pick a safe drink and stay with it consistently. Vodka and red bull is ok, I hear. So is Vodka and tonic. I don't think they serve much potato vodka in bars. Also I've heard that there is the chance of contamination in fountain sodas? I mean, do I need to be going to this extreme? I love wine, but it's not often you can get good wine at just a regular bar.

ugh.

Guhlia Rising Star

When you were asking for bread I figured you wanted crusty french bread style, not sandwich bread so I wanted to add that for sandwich bread we REALLY like Kinnikinnick's cheese tapioca bread. We put it in the toaster on a low setting to thaw it. This keeps it from getting mushy like it would in the microwave. Its very good if eaten right away and decent if eaten later in a lunch. It won't taste like wheat bread, but still good. Even my husband who doesn't have Celiac eats this bread and enjoys it. You can get it online at www.kinnikinnick.com. They also have outstanding donuts, bagels, waffles, cinnamon rolls, and their flours are really good quality and produce excellent baked goods.

You may also want to try the Gluten Free Pantry's favorite sandwich bread mix. Its good plain, but its REALLY good with onions, peppers, cheese, pepper, and garlic! YUM! It stays moist in a sack lunch too. Its also good to eat just plain with nothing on it.


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ravenwoodglass Mentor
Now this MAY seem silly, but one of my biggest concerns is what alcohol is safe for me to drink. Before Celiac had entered my life, I began drinking flavored vodkas with club soda on a regular basis. Now I fear that the flavored vodkas are not good. I mean let's face it... I am a single 30-year old, with a normal social life who will go out to bars and have some drinks on the weekends. I wanna just pick a safe drink and stay with it consistently. Vodka and red bull is ok, I hear. So is Vodka and tonic. I don't think they serve much potato vodka in bars. Also I've heard that there is the chance of contamination in fountain sodas? I mean, do I need to be going to this extreme? I love wine, but it's not often you can get good wine at just a regular bar.

ugh.

You may find this link helpful,

Open Original Shared Link

There are celiacs that can tolerate gluten distilled grains but there are those of us who don't. The only way to tell if you are one of them is to avoid it until you are symptom free than challenge with it and look for a reaction. You do want to avoid fountain beverages, even if the companies bottled formulas are safe the fountain version may not be and the risk of CC with speed bars is great. Most bars will have bottled or canned sodas as well as the speed bar. Also many bars will use one shot glass all night to measure out liquor for drinks, if your bartender does not free pour ask them to use a clean shot glass. If you are a regular customer at someplace ask them to get in a gluten free beer like redbridge or to stock a gluten free cider or potatoe vodka for you. They should have no problem with doing that and may already have the items.

The misdiagnosis that you dealt with is unfortunately very common. It took them 45 years to diagnosed me and a lot of damage was done in that time. Try to look forward if you can. It is hard not to be bitter at times when we recover and realize how much pain for how many years could have been avoided if doctors were actually bothering to even look for celiac. Welcome and I hope you are on the road to recovery soon.

One last note, you have had a positive blood test, as mentioned if you go gluten free before the endo you risk a false negative. Has your doctor talked to you about that? If you have chosen to be gluten free before the endo be sure to stay that way even after the procedure no matter what the results. The truest test of whether we need the diet is our response to it. I could fully understand your wanting relief as soon as possible but make sure if you do go gluten free before the endo that your GI knows you are.

Offthegrid Explorer

Welcome. Getting the gluten-free diagnosis can be very difficult, emotionally, socially. I know I was angry for a long time. And a bit in denial. And it does take a while to get used to this stuff, so please be patient with yourself.

As for going so long with a wrong diagnosis, I am sorry to hear that, too. I only went through 6 months of testing because I was having numbness and then later gastro problems so bad I was sure I had food poisoning. I had to switch doctors because the first was clueless (and mean), and I believe the only reason the second doctor gave me the blood test was because I mentioned my aunt was gluten intolerant. BTW, my numbness completely went away after eliminating gluten and dairy.

I personally believe this should be routinely tested for in anyone with a wide variety of symptoms.

ANYway, as to alcohol ...

I like bacardi and Coke and southern comfort and Coke. Those have always been my favs. :-) They do make gluten-free beer, but I have heard it's not all that great. You might like it though, because I was never a beer drinker. If you research ahead of time which vodkas are gluten-free, you could order any drink with that particular brand, too.

As to the food. It will be hard for a while. When eating out, try first eating plain things -- plain chicken breast or steak with steamed veggies or potato. You can also try bringing gluten-free pasta to an Italian restaurant if they are receptive to that type of thing. Make sure it's cooked in a clean pot and strainer. MOST tomato sauces are gluten-free. Chinese is another option -- get steamed shrimp and veggies or steamed chicken. Just make sure they cook in a clean pan as their soy sauce will most likely have wheat in it. BUT you can bring your own soy sauce because La Choy soy sauce is gluten-free. In Thai food, pad thai is rice noodles, so that is gluten-free.

Lastly, I just wanted to forewarn you that many celiacs also have other food intoelrances, especially in the beginning. Many find they can't eat casein (dairy), so switching to Lactaid may not help. Others are also sensitive to soy. I recently found out, after a year of being incredibly frustrated because I was so careful about being gluten-free, that I am intolerant to nightshades (potatoes, tomatoes, eggplant and peppers). Some report that after abstaining from these things for 6 months, they are able to slow reintroduce them. I'm hoping that will be my case!

As for athletic foods, Clif Bars, Power Bars and those foods are NOT gluten-free. They have malt. But the gels are. Sports Beans are. LaraBars are a type of energy bar that are gluten-free, although kinda bland. Of course bananas, raisins, peanut butter is all gluten-free, so you can replace athletic foods with those types of things for energy. (On a side note, Desiree Ficker, who came in second place in the 2006 Ironman Championship, doesn't eat gluten.)

Be patient with yourself. You will learn over time. Try not to give in to gluten cravings, though. In the beginning, I cheated far too often (usually after an accidental glutening), and once you have a bite, you want more, more, more, MORE!

Good luck. If you have any more questions, be sure to ask. This is a great resource.

Offthegrid Explorer

Oops, wanted to talk about lunch. The eastiest thing to do is take leftovers or cook on the weekends. Chicken breast, steak, pot roast -- anything can be made gluten-free. Use McCormick spices. They will use the word "gluten" in the ingredients. Rice. Potatoes. Veggies. Fruits. You'll be eating a lot healthier, too. Bake some gluten-free cookies. I freeze gluten-free treats here, and then when there's cake in the office I throw them in the microwave so I have something, too.

njbeachbum Explorer

Thanks again to everyone for their acceptance and kind responses. I started eliminating gluten over this past weekend, but I would say that I've been strictly "gluten-free" since monday. i've started noticing small changes, but nothing major.... i don't expect to see huge results just yet. i'm not quite as tired and irritable, even though I've been up until 1 and 2am doing research on celiac! i haven't noticed a huge change in my tummy symptoms and bathroom habits, but i understand that there is a lot of healing that needs to take place before that can be noticeably different.

offthegrind.... thanks for all of the advice and suggestions. i think lunch will be ok, it's just such a big change from what i'm used to. i've been doing salads everyday so far, b/c i haven't had a free weekend to do a lot of cooking. i'm thinking that grilling up a package of chicken is a good idea, b/c that can be used for anything. once i find somewhere to get good gluten-free bread i should be happy. i'm going to troll around all of the health food stores this weekend, and have a look at a gluten-free specialty store called Epicure that is nearby.

as for alcohol, i have a night out in nyc planned tomorrow night for my best friend's birthday. i've read that captain morgan rum is listed as gluten free, and that was a particular favorite of mine way back in my college days! so i'm thinking that captain and ginger ale is a good way to go, since most places don't have ginger ale in the soda fountains. otherwise, i'll just have to go with coke from the fountain and trust that i'll be ok.

as far as food goes, i think i've been pretty good so far. i've had pork chops and steak seasoned with garlic salt alone, plain white rice, baked potato, sweet potato, and birds eye steam fresh veggies (these things are a god send... steam them in their bag right from the freezer in your microwave!!) last night i tried tinkyada rice pasta and it was GOOD! i made plain tomato sauce from canned tomatoes, with some ground turkey meat, garlic, salt, pepper and oregano. i'm trying to keep things very mild with flavor at first, and see how my body reacts. i've also stocked up on some of the snacks..... LOVING Larabars!! and FruitaBu organic smooshed fruit snacks.... keeping lots of honey roasted nuts and rice cakes on hand... snyders white corn torilla chips and eatsmart veggie chips, yummo! enjoy life snickerdoodle and chocolate cookies are yummy for a sugar fix, but the packages are SO small and they are kinda expensive. i'm worth it though ;)

i've also kept fresh fruit around, mostly apples & bananas, and also snap peas and baby carrots. being an athlete, i'm the kind of person who has always need to eat something every couple of hours. it's such a huge change from just grabbing the first thing you see and putting it in your mouth. but you're right, i am finding that i will be eating much healthier. and while i don't need to lose any weight, i am looking forward to the health benefits of eating this way.

oh yeah, and for breakfast i've been having cream of rice cereal with a banana and some OJ or grapefruit juice. i guess i can have some eggs too, and when i get my hands on some gluten free bread products, i can have some toast or whatever with peanut butter. any other thoughts for breakfast on the run? i was always a granola bar or an instant oatmeal at my desk kinda guy! and finally, i haven't given up my coffee. love my coffee. i pick up dunkin donuts regular or seattle's best in the caf at work.

i think that's all for now! let me know if any of the things i've described above might be "suspect". in my humble opinion, i'm doing GREAT so far :) my sister has already told me that she's getting me a bread maker for christmas. just what i always wanted :P hey, i'll be like martha stewart in no time! minus the parole officer!!! haha

thanks again guys.... much love to you all.

-joe

num1habsfan Rising Star

Welcome to the board. Like Deb said, a lot of us never got a official diagnosis so we self-diagnose ourselves. My case was Guhlia, where i dropped weight like mad (I lost 44 lbs in 6 weeks, 20 in the first 16 days!). He told me don't wait for a diagnosis and start on the diet now..so after a year on the diet they came back negative. I was told by a former family doc that if I wanted a proper diagnosis I'd have to go back eating gluten for at least a year

I wouldnt rule out having both Crohn's and Celiac because there are a few others on the board with both and I think I have both too. I've already been fighting 2 years to try find the cause of my constant extreme pains. Now all the idiots test me for is Celiac and claim I don't have that (even though I've been gluten-free for almost 5 years, so how could there be damage?). I've mainly followed the Crohn's diet (like no red meat, etc) and i've noticed a difference. The pains are still there but not as severe reaction when I eat.

If you're unsure what's safe or not safe there are many lists along the internet and a lot of the food companies that I know of have the information on the website or will respond to emails (maybe this is different in the US?).

~ Lisa ~

Offthegrid Explorer

You will be disappointed by the gluten-free bread. Get the kinnikinnick over the Internet if you want to try it. Otherwise, try corn tortillas -- you have to heat them, but they aren't bad. Otherwise, make yourself some banana bread for quick breakfast at work or muffins. There's a banana bread recipe on the Ener-G potato flour box I believe. Try cornbread for dinner.

If you're GOING to get gluten-free bread in the freezer at a local store, get the almond rice. It's a lot better than tapioca, IMHO.

happygirl Collaborator

Not sure if they ship to you, but check out a brand of bread products called glutenfree4me. They are great!

blueeyedmanda Community Regular

Just wanted to say Welcome to the Board.

If you have a health food store near you that carries The Grainless Baker products, they are amazing!!!!

Rosebud710 Apprentice

Welcome!

If there's a Whole Foods near you, they sell a wonderful bread. It's their gluten-free Bakehouse bread. They have a sandwich bread that I love and also raisin bread. It's expensive, but I finally can have a decent sandwich! Like most gluten-free breads, you will have to keep this bread frozen.

njbeachbum Explorer

hooray!! i found a great little health food store on my way home from work that has tons of gluten free stuff... i found the grainless baker bread and it's now in my freezer! i also got glutino bagels, and defrosted/toasted one and it was DELICIOUS!! that is what i've been craving all week.... just something like real bread :)

i'm happy now. i also have some delicious chicken/brown rice/vegetable soup waiting for me in my slow cooker. gluten-free is easy ;)

sickchick Community Regular
hello everyone, my name is joe and i am brand new to this.... all of this. let me share my story with you all. i am now 30, but when i was 15 years old, i was severely underdeveloped for my age. i began having chronic gastrointestinal symptoms for a few months but was too embarrassed to address them. when i finally did, i became a doctor's lab experiment... testing for growth hormones, all of the scoping and GI series, diet diaries, the whole nine yards. after many months of tests and doctors visits, my doctor ruled out gluten enteropathy and made the diagnosis of crohn's disease. i was 16 years old at the time. i was treated with pentasa, and began to respond positively. aside from all of this i was a normal, active kid. valedictorian of my high school class. smart and well liked. i ended up going away to college, and that was when i both came out of my shell socially and had a huge growth spurt. the doctor who originally diagnosed me relocated out of state, and i began to see a regular, small town family doctor who was a "gastro specialist". i would see him annually for a check-up and to refill my prescription. i would go through good and bad phases with my symptoms over the years, and succumbed to the fact that this was just the way it was going to be for me. i worked my life around it and never really let it affect me to any great degree. i guess i have a positive attitude in that respect. i'm no stranger to life's challenges, as i'm also a gay man and had to come out to my friends and family during this time. i've always thought that life is all about what YOU make of it and who you choose to surround yourself with. i have nothing but loving family and friends around me and that has made the road much easier for me. so then fast forward to now...........

having started a new job a little over a year ago, i decided to find a new local gastroenterologist that was in my insurance plan. over this same time frame, i had noticed some negative changes in my symptoms. so i found a new doctor and made my first consultation. he was great. i told him that i hadn't been examined for changes in my condition since i was diagnosed 14 years ago and he was floored. he sent me for bloodwork and scheduled a colonoscopy and a capsule endoscopy. when i went in to see him for my follow up on the colonoscopy, he came into the exam room and said "i was just discussing with my colleague that this is very interesting".... something you don't really want to hear a doctor say. my colonoscopy results were fine and clear, however, my blood tested positive for celiac disease and my folic acid and hemoglobin levels. i was floored. it is very possible that this is what i've had all along and the crohn's diagnosis was wrong. how could this be? i've been poisoning myself and suffering for all of these years? so, he scheduled me for an endoscopy to get some tissue biopsies on 12/21 to make a final diagnosis (on whether i have celiac alone, or celiac and crohn's), but he said that the blood work rarely lies.

so that brings me to right now. i made an official attempt to begin gluten free living on saturday 12/1/07. i attended a wedding that day so my dinner was a bit out of my hands, but i think i was good for the most part. so at day 4, i am beginning to feel some frustrations. i feel like there are so few choices that are really safe out there. even things that i think are ok will end up having a risk of contamination. one of the great joys in my life has been FOOD. i am 100% italian and live for breads and pasta. i LOVE going out to dinner with my friends. having a beer. having a lot of beers. having a few martinis. (do you see a pattern here??) anyway, i'm going to have lots of questions along the way, so i hope that all of you will be happy to share your experiences with me.

one of the things that boggles my mind is that i was misdiagnosed for such a long time. how could i know? how could anyone know? in one week i've found out SO much about celiac disease. the symptoms that i've researched describe exactly what i've been feeling for years.... from the yucky GI symptoms (described on these websites with frightening accuracy), to being tired all the time... and weak sometimes... and headachy and dizzy... oh and don't forget the itchy patches of skin that i've had since i was a teenager. all this time i've maintained a pretty upbeat life however. i am a cpa, with a great career. i have amazing and loving friends and a wonderful social life. i play competitive volleyball both indoors and at the pro level on the beach. i work out 2, 3 or more times a week. i'm also single, but we don't need to talk about that :P how could i be "suffering" with this disease and have all of these positive things in my life? well, i've decided to take a positive outlook on things. what i like about this diagnosis is that it puts ME in control of how i feel. i know it's going to be hard, but if i start to feel better it will make it all worth it.

so i think i've said enough by now. if you made it through this entire post, you are a saint. i'd love to hear some of your stories, and will do a little more searching around this site to get to know some of you. thanks for reading :)

Welcome to the forums Sweetie:)

I think part of your problem is getting accustomed to a new eating regime AND you are going to experience some withdrawls too so it's going to compound some of the emotional things you are feeling.

Just hang in there and we're all here to help you get though this

I'm not dead yet! lol :D

lovelove

sickchick

blueeyedmanda Community Regular

Good to hear you found some Grainless Baker products. I highly recommend the Butterfly Cookies, Snickerdoodles, and their pizza. I like a lot of their stuff but those by far are my favorites. That is the best bread I have found gluten-free yet.

blueeyedmanda Community Regular

Also, if you have a Wegmans near, very celiac friendly. A big gluten free section and all of their house brands are labeled gluten free.

loco-ladi Contributor

welcome to the forum first of all and your in for a rough few weeks to start then your gonna hit that inevitable sticking point just remember we are ALL here to help and we've all been thru this ourselves

and as for miss DX'ed.... gee where have I heard that from before, hmmmmmmm LOL

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    • trents
      If you have been eating the gluten equivalent of 4-6 slices of wheat bread daily for say, 4 weeks, I think a repeat blood test would be valid.
    • englishbunny
      it did include Total Immunoglobin A which was 135, and said to be in normal range. when i did the blood test in January I would say I was on a "light' gluten diet, but def not gluten free.  I didn't have any clue about the celiac thing then.  Since then I have been eating a tonne of gluten for the purpose of the endoscopy....so I'm debating just getting my blood test redone right away to see if it has changed so I'm not waiting another month...
    • trents
      Welcome to the forum, @englishbunny! Did your celiac panel include a test for "Total IGA"? That is a test for IGA deficiency. If you are IGA deficient, other IGA test resultls will likely be falsely low. Were you by any chance already practicing a reduced gluten free diet when the blood draw was done?
    • englishbunny
      I'm upset & confused and really need help finding a new gastro who specializes in celiac in California.  Also will welcome any insights on my results. I tested with an isolated positive for deamidated IGA a few months ago (it was 124.3, all other values on celiac panel <1.0), I also have low ferritin and Hashimotos. Mild gastro symptoms which don't seem to get significantly worse with gluten but I can't really tell... my main issues being extreme fatigue and joint pain. The celiac panel was done by my endocrinologist to try and get to the bottom of my fatigue and I was shocked to have a positive result. Just got negative biposy result from endoscopy. Doctor only took two biopsies from small intestine (from an area that appeared red), and both are normal. Problem is his Physician's Assistant can't give me an answer whether I have celiac or not, or what possible reason I might have for having positive antibodies if I don't have it. She wants me to retest bloods in a month and says in the meantime to either "eat gluten or not, it's up to you, but your bloodwork won't be accurate if you don't" I asked if it could be I have early stage celiac so the damage is patchy and missed by only having two samples taken, and she said doctor would've seen damaged areas when performing endoscopy (?) and that it's a good sign if my whole intestine isn't damaged all over, so even if there is spotty damage I am fine.  This doesn't exactly seem satisfactory, and seems to be contrary to so much of the reading and research I have done. I haven't seen the doctor except at my endoscopy, and he was pretty arrogant and didn't take much time to talk. I can't see him or even talk to him for another month. I'm really confused about what I should do. I don't want to just "wait and see" if I have celiac and do real damage in the meantime. Because I know celiac is more that just 'not eating bread' and if I am going to make such a huge lifestyle adjustment I need an actual diagnosis. So in summary I want to find another doctor in CA, preferably Los Angeles but I don't care at this stage if they can do telehealth! I just need some real answers from someone who doesn't talk in riddles. So recommendations would be highly welcomed. I have Blue Shield CA insurance, loads of gastros in LA don’t take insurance at all 😣
    • trents
      Okay, Lori, we can agree on the term "gluten-like". My concern here is that you and other celiacs who do experience celiac reactions to other grains besides wheat, barley and rye are trying to make this normative for the whole celiac community when it isn't. And using the term "gluten" to refer to these other grain proteins is going to be confusing to new celiacs trying to figure out what grains they actually do need to avoid and which they don't. Your experience is not normative so please don't proselytize as if it were.
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