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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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      Awaiting dermatitis herpetiformis confirmation following biopsy

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      Awaiting dermatitis herpetiformis confirmation following biopsy

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      how much gluten do I need to eat before blood tests?

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      how much gluten do I need to eat before blood tests?

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    • suek54
      Wow KK, thank you so much for all your attached info. I had a very quick scan but will read more in depth later.  The one concerning corticosteroid use is very interesting. That would relate to secondary adrenal insufficiency I think , ie AI caused by steroids such as taken long term for eg asthma. I have primary autoimmune AI, my adrenals are atrophied, no chance if recovery there. But I am in touch with some secondaries, so something to bear in mind. .  Niacin B3 Very interesting too. Must have a good read about that.  Im sure lots of questions will arise as I progress with dermatitis herpetiformis. In the mean time, thanks for your help.
    • knitty kitty
      Welcome to the forum, @suek54, I have Dermatitis Herpetiformis, too.  I found taking Niacin B3 very helpful in clearing my skin from blisters as well as improving the itchies-without-rash (peripheral neuropathy).  Niacin has been used since the 1950's to improve dermatitis herpetiformis.   I try to balance my iodine intake (which will cause flairs) with Selenium which improves thyroid function.   Interesting Reading: Dermatitis herpetiformis effectively treated with heparin, tetracycline and nicotinamide https://pubmed.ncbi.nlm.nih.gov/10844495/   Experience with selenium used to recover adrenocortical function in patients taking glucocorticosteroids long https://pubmed.ncbi.nlm.nih.gov/24437222/   Two Cases of Dermatitis Herpetiformis Successfully Treated with Tetracycline and Niacinamide https://pubmed.ncbi.nlm.nih.gov/30390734/   Steroid-Resistant Rash With Neuropsychiatric Deterioration and Weight Loss: A Modern-Day Case of Pellagra https://pmc.ncbi.nlm.nih.gov/articles/PMC12532421/#:~:text=Figure 2.,(right panel) upper limbs.&text=The distribution of the rash,patient's substantial response to treatment.   Nicotinic acid therapy of dermatitis herpetiformis (1950) https://pubmed.ncbi.nlm.nih.gov/15412276/
    • suek54
      Thank you all for your advice and the dermatitis herpetiformis article. The latter made me realise I had stopped taking my antihistamine, which I will restart today. The Dapsone has cleared the rash entirely but I still get quite a bit itching, absolutely nothing to see though. I know its notoriously hard to clear and its still relatively early days for me.  The iodine issue is very interesting. I do eat quite a bit of salt because I have Addison's disease and sodium retention is an issue. I also have autoimmune hypothyroidism, not sure how a low iodine diet would play into that? Because of my Addison's I am totally steroid dependent, I take steroids 4 x daily and cannot mount any defence against inflammation. I need to increase my meds for that. Now that I know what is wrong I can do just that if Im having a bad day. Life is very sweet, just so damn complicated sometimes! Hey ho, onwards. Thank you again for your advice.  
    • trents
      So, essentially all of the nutrition in the food we eat is absorbed through the villous lining of the small bowel. This is the section of the intestinal track that is damaged by celiac disease. This villous lining is composed of billions of finger-like projections that create a huge amount of surface area for absorbing nutrients. For the celiac person, when gluten is consumed, it triggers an autoimmune reaction in this area which, of course, generates inflammation. The antibodies connected with this inflammation is what the celiac blood tests are designed to detect but this inflammation, over time, wears down the finger-like projections of the villous lining. Of course, when this proceeds for an extended period of time, greatly reduces the absorption efficiency of the villous lining and often results in many and various nutrient deficiency-related health issues. Classic examples would be osteoporosis and iron deficiency. But there are many more. Low D3 levels is a well-known celiac-caused nutritional deficiency. So is low B12. All the B vitamins in fact. Magnesium, zinc, etc.  Celiac disease can also cause liver inflammation. You mention elevated ALP levels. Elevated liver enzymes over a period of 13 years was what led to my celiac diagnosis. Within three months of going gluten free my liver enzymes normalized. I had elevated AST and ALT. The development of sensitivities to other food proteins is very common in the celiac population. Most common cross reactive foods are dairy and oats but eggs, soy and corn are also relatively common offenders. Lactose intolerance is also common in the celiac population because of damage to the SB lining.  Eggs when they are scrambled or fried give me a gut ache. But when I poach them, they do not. The steam and heat of poaching causes a hydrolysis process that alters the protein in the egg. They don't bother me in baked goods either so I assume the same process is at work. I bought a plastic poacher on Amazon to make poaching very easy. All this to say that many of the issues you describe could be caused by celiac disease. 
    • catnapt
      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt.   I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the same reason I gave up dairy and eggs- they make me feel ill.  I do have a bit of a sugar addiction lol so a lot of times I wasn't sure if it was the refined grains that I was eating - or the sugar. So from time to time I might have a cookie or something but I've learned how to make wonderful cookies and golden brownies with BEANS!! and no refined sugar - I use date paste instead. Pizza made me so ill- but I thought it was probably the cheese. I gave up pizza and haven't missed it. the one time I tried a slice I felt so bad I knew I'd never touch it again. I stopped eating wheat pasta at least 3 yrs ago- just didn't feel well after eating it. I tried chick pea pasta and a few others and discovered I like the brown rice pasta. I still don't eat a lot of pasta but it's nice for a change when I want something easy. TBH over the years I've wondered sometimes if I might be gluten intolerant but really believed it was not possible for me to have celiac disease. NOW I need to know for sure- because I'm in the middle of a long process of trying to find out why I have a high parathyroid level (NOT the thyroid- but rather the 4 glands that control the calcium balance in your body) I have had a hard time getting my vit D level up, my serum calcium has run on the low side of normal for many years... and now I am losing calcium from my bones and excreting it in my urine (some sort of renal calcium leak) Also have a high ALP since 2014. And now rapidly worsening bone density.  I still do not have a firm diagnosis. Could be secondary HPT (but secondary to what? we need to know) It could be early primary HPT. I am spilling calcium in my urine but is that caused by the high parathyroid hormone or is it the reason my PTH is high>? there are multiple feedback loops for this condition.    so I will keep eating the bread and some wheat germ that does not seem to bother me too much (it hasn't got enough gluten to use just wheat germ)    but I'm curious- if you don't have a strong reaction to a product- like me and wheat germ- does that mean it's ok to eat or is it still causing harm even if you don't have any obvious symptoms? I guess what you are saying about silent celiac makes it likely that you can have no symptoms and still have the harm... but geez! you'd think they'd come up with a way to test for this that didn't require you to consume something that makes you sick! I worry about the complications I've been reading about- different kinds of cancers etc. also wondering- are there degrees of celiac disease?  is there any correlation between symptoms and the amnt of damage to your intestines? I also need a firm diagnosis because I have an identical twin sister ... so if I have celiac, she has it too- or at least the genetic make up for having it. I did have a VERY major stress to my body in 2014-2016 time frame .. lost 50lbs in a short period of time and had severe symptoms from acute protracted withdrawal off an SSRI drug (that I'd been given an unethically high dose of, by a dr who has since lost his license)  Going off the drug was a good thing and in many ways my health improved dramatically- just losing 50lbs was helpful but I also went  off almost a dozen different medications, totally changed my diet and have been doing pretty well except for the past 3-4 yrs when the symptoms related to the parathyroid issue cropped up. It is likely that I had low vit D for some time and that caused me a lot of symptoms. The endo now tells me that low vit D can be caused by celiac disease so I need to know for sure! thank you for all that great and useful information!!! 
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