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misulli

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misulli Rookie

So after getting my positive enterolab results (including nifty genetic verification that I am doubly doomed (HLA-DQ 2,2), I went Gluten free. The weekdays were OK as I was working and could only eat what I had brought with me (all gluten free). The weekend was MUCH tougher. I brought home a few different kinds of bread to try (I might add Bread has always been my favorite food). After picking up the brown rice loaf, I carefully put it down for fear of dropping it and creating a hole in my floor. I popped a piece in the toaster to give it the ol' college try. After toasting it three times and it still looks right out of the package, I started to get concerned. I slapped some butter on it and tried it. Not so good... I then went to try to loaf made of corn. Was a little taken back that it had traveled across a border to get me (ie: Canada to Massachusetts), I popped that in the toaster. After one round it did look more promising. At least it was browned. As for the flavor, there was NONE!!!!! I figured, maybe I just need to make my own (I have always loved making my own bread). I tried a box mix from Whole Foods. Once it had risen, I tried to pick it up to roll it out and bake. Once in my hands, the dough sloshed through my fingers onto the floor. That was the end of that. Within then minutes, I was crying and raiding the cabinet eating every piece of real bread I could get my hands on. You would have thought I was some sort of addict!!! UGH! I will also say that I gave up my daily immodium dose while going gluten free and lets just say even before the bread gorging incident, I was not happy with the results. Now I am feeling mad at myself for giving in and wondering just how do I go about doing this without having a weekly pity party resulting in wheat binging... Is going cold turkey the best way to do this or are there alternatives?????

Any advice would be helpful!

Michelle

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Fecal Antigliadin IgA 18 (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA 15 Units (Normal Range <10 Units)

Quantitative Microscopic Fecal Fat Score <300 Units (Normal Range <300 Units)

Fecal anti-casein (cow


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missy'smom Collaborator

Welcome.

It can take a while to find a gluten-free bread that satisfies you. We've all been through that. Don't throw away any gluten-free bread that you don't like though. Process it in the food processor and dry or freeze it to use as dried or fresh breadcrumbs. Or make it into french toast. It tastes better with the egg mixture and cinnamon or vanilla. Cube it and dry it for use as stuffing or dressing. Just be aware that some kinds are rock hard when they dry so not all will be good for croutons for salad. I haven't tried the Whole Foods mix but most homemade gluten-free breads are more of a batter that has to be poured into the pan and can't be rolled out. The chemistry of gluten-free baking is so different that we have to ignore alot of what we learned about baking previously. In the end I'll bet that you find that you like homemade gluten-free bread better than the store bought. We've all had plenty of flops but hang in there. You'll get the hang of it and we're always here for advice and support.

Mom23boys Contributor

Personally I prefer going "cold turkey" and not trying to do any kind of sub for a while. No matter how good the sub is it is not going to be exactly like the brand you "crave" when you think of x product. For the kids I will even make up a new name when I eventually try a sub (instead of mac and cheese we have rice noodles and sauce) just so I don't bring up those "memories".

Focus on the positive and try to make it fun. Try out some completely new basic recipes and focus on that a while (I just cooked pork chops for the first time a few days ago and I'm in my 40's). Find some meat that is new to you and figure out how to fix it. Try a new veggie. Try a new fruit.

MNBeth Explorer

I was a bread baker, too, and spent years studying, learning, and trying to improve. Learning to bake gluten-free bread has been like starting all over again. The rules are COMPLETELY different. I would recommend trying again, but follow the directions carefully, even though it sounds so wrong for bread. As has been mentioned, the dough looks completely different; it cannot be kneaded, and does ONLY ONE RISE. Once you're done mixing, it goes straight into the pan and you just don't get to mess with it after that. ;-) (And you have to think of it as something new and not expect it to be like your old love. Sigh.)

Do hang in there - you'll make it! I went through serious withdrawal the first few weeks, but I get along better w/o it, now. Not that I don't miss it. But now that I've been gluten-free a few months, I get sick for a week from crumbs, so I don't even like to think what a whole slice would do to me. I find that I'm happier not eating bread than subbing, especially since I can't have butter right now, either. Real butter would cover a multitude of sins!

jerseyangel Proficient

Have to say, I enjoyed your post :D Sorry about your unsuccessful quest for a gluten-free bread you like.

I really like Gluten Free Pantry French Bread mix--I mix it up in my heavy duty mixer and bake it in the oven in a loaf pan--and since my loaf pan is a bit smaller than average, I get 4 dinner sized rolls out of it, too.

It's very good toasted, and you can even make a sandwich with it when it's fresh. I keep the rolls in a zip lock bag in the freezer, and microwave for 30 seconds whenever I need one. The bread, I slice and freeze to use as needed.

As the others have said, gluten-free breads mix and bake differently than those made from wheat. You get a thick batter, rather than a dough.

As far as a ready made loaf, I've yet to find one that I both like and can tolerate.

Good luck!

Phyllis28 Apprentice

One other alternative is simply leave bread (all kinds) out of your diet. When I went gluten free many years ago there were very few commercially made gluten free breads and they were all bad. I still don't bake much. I use rice cakes and corn tortillas in place of bread for sandwich fixings.

Hope you find a receipe that you like.

silk Contributor
I was a bread baker, too, and spent years studying, learning, and trying to improve. Learning to bake gluten-free bread has been like starting all over again. The rules are COMPLETELY different. I would recommend trying again, but follow the directions carefully, even though it sounds so wrong for bread. As has been mentioned, the dough looks completely different; it cannot be kneaded, and does ONLY ONE RISE. Once you're done mixing, it goes straight into the pan and you just don't get to mess with it after that. ;-) (And you have to think of it as something new and not expect it to be like your old love. Sigh.)

Do hang in there - you'll make it! I went through serious withdrawal the first few weeks, but I get along better w/o it, now. Not that I don't miss it. But now that I've been gluten-free a few months, I get sick for a week from crumbs, so I don't even like to think what a whole slice would do to me. I find that I'm happier not eating bread than subbing, especially since I can't have butter right now, either. Real butter would cover a multitude of sins!

Loved bread too. Miss it but not enough to want to face the consequences from eating it. I agree that the store bought pretend bread is pretty nasty. I can almost tolerate the light tapioca loaf that I get at my health food store, but only if it is toasted. Most....ack..have such a nasty texture and aftertaste that I swore never to eat bread again. Gluten free prepared mixes just don't do the job.

I did find a really great recipe in a cookbook called "Allergy Free Cooking" by Alice Sherwood. It adapts recipes for almost all of the major food allergies including gluten, nuts, eggs, and dairy. (You can get it from Amazon and can even get a discounted, used copy for about $14.00. There is an amazing recipe for a Farmhouse White Loaf Bread that would stand up against ANY regular bread for taste and texture and it toasts beautifully. And a huge bonus is that there is no kneading. Pours into a prepared loaf pan much like a thick brownie (wipes drool from chin) batter would. Piece of cake...sorry bad pun..to mix up. Bakes for about 1 hour 40 minutes, which seems like a long time but it is so worth the wait. I sliced it while it was still warm and spread on my pretend butter and cherry preserves....aghh! It was heaven. And I didn't share with anyone but my daughter who also has Celiac. Now there is a serious bread eater and she loved it! If you are interested and want to p.m. me, I would be happy to get the recipe to you.

MNBeth, I can't do butter either but I have found that the Smart Start with flax seed oil that you can get at most supermarkets here in the U.S. is pretty good. Also, Fleishmann's has a stick margerine that is made from corn oil that has no lactose and is pretty good for cooking with.

Don't give up. It may take more work for us to find things that work for us but I am finding that making your own is definitely the way to go and definitely worth the effort.


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Morrisun Newbie

When I first went Gluten Free I pretty much stopped eating bread, just because I hadn't found a gluten-free bread that tasted good. Some were more palatable than others but were still mostly disgusting, lol. Now I pretty much only eat Kinnickinnick bread. To me, it almost tastes like "normal" bread and it feels more like normal as well. You can see where they sell it near you if you go to their Open Original Shared Link.

It's best to just to keep trying all the different kinds you can get your hands on until you find one that you actually like. :)

MyMississippi Enthusiast

Going without bread is just NOT an option for us bread addicts --- :D

So, what I did was use Pamela's bread mix and add lots of flax seeds to give it added texture and taste. That pretty much worked for me (until I became "intolerant" of flax seeds and had to give them up too--- is there no end to the torment that we must endure ????? :lol: )

So, just keep looking and experimenting---- You will find something you almost like.

And yes, I think it's best to quit gluten cold turkey. But it may take you a few "falls off the wagon" to finally settle it in your mind.

scotty Explorer

quitting gluten (bread) was as easy to me as quitting smoking. i found that every kind of bread no matter if it was gluten free or not just like every kind of cigarette i tried came to one result. sick sick sick. carbs in general were much harder. but sick sick sick. fruit will always be the hardest. one thing that i would splurge on without a second thought were available at the precise moment would be my mother's tortillas smothered with butter, eww or maybe cheese. i have been in that position every weekend; so ravenous i almost attack a box of cheez-its! but i hold back. sick sick sick. you are pretty lucky if you survive any break down in the focus.

misulli Rookie

Thanks all for the words of wisdom and kindness. I feel like there should be some sort of "gluten Anonomous" - Hi my name is Michelle and I'm a Gluten addict! :-)

I'm sure I will get there. Part of me is still in denial. I want to believe that my symptoms are caused by something else and the antibody testing done by Enterolab was "low" so therefore maybe, just maybe not true. But it it the gene sequencing that gives me away.........

I will try some of the bread recipes once I get past the ingrediants with the really foreign names. Where the heck do you get some of these ingrediants??? At least Marshmellow Peeps are gluten free....

lizard00 Enthusiast
At least Marshmellow Peeps are gluten free....

Hey, it's amazing the things you have a new found appreciation for!!! :D

It took me a few times purposely glutening myself before I was finally convinced that I was really gluten intolerant, and not just crazy pants! I kept thinking, what if I am just wanted this to be the answer so I convinced myself it was the answer... that was when I really wanted something totally off limits... like pizza. After a few times of purposeful glutenings and then some accidentals, I finally came to terms with it. You will too.

missy'smom Collaborator

If you have an asian market or reg. grocery with a large asian/international section it can be an asset. Mine sells tapioca and rice flour from Thailand and potato starch from Korea for considerably less than the brands sold at the healtfood store.

silk Contributor

Hey, Missy's mom, thanks for that info on the flours. I never would have thought of that! As for the peeps...maybe you should check out RiceGuy's peeps website before you decide that you really love those little critters! I think it's something like www.peepsresearch.com. (Maybe if he's lurking anywhere nearby, he can confirm that.) It is a truly hilarious website...and let's just say, if acetone cannot destroy a peep, how long will that little sucker sit in your gut, gluten or no gluten? :P

lizard00, I can so relate to what you are saying about wondering if you just grabbed onto this disease for an answer to so many questions about the problems you are having! Especially if you are self-diagnosed! After going several days in a row feeling good, you start to wonder if you imagined the whole thing. One slip-up confirms it until the next time you feel really good for a while. I have not purposely glutened myself, but have accidentally gotten it enough times to know the real deal when it bites me in the ***gutt..bet you thought I was going to say something else, huh? :lol: .

misulli Rookie

I found the site you were referring to. It was great! A little scary...but hilarious!

oceangirl Collaborator

Hi.

You've gotten great advice. I used to make all our bread, too, but, nothing, NOTHING could make me purposely put one crumb of gluten in my mouth the pain is so bad from it. I guess if you have enough pain it's a pretty good deterrent. Right now I'm suffering from a blind glutening (this happens about every two monthe, mysteriously, and I've been gluten-free, have a gluten-free house and have NEVER eaten out for 2 and a half years!) and without seeming too full of hyperbole, it sometimes makes me think of ending things because there is no way to find relief until it goes away.

Just thought I'd add to the chorus by saying no grains at all is not a bad idea especially when you're first gluten-free. It can be done! Whole foods- meats, fish, chicken, veggies, fruit, nuts and seeds- are your best bet when trying to heal. Add things back later and stay away from processed foods as much as possible. Good advice for the world, actually.

Just my two cents...

Good luck,

lisa

Pennyb Rookie

I agree with all the others that commercial gluten free breads leave alot to be desired. I remember the first loaf we tried, I thought we were eating styrofoam. We now use Kinnikinnick Bread and Bun Mix. Very Easy, Just add milk or milk substitute to the mix and blend for two minutes, pour in pan and bake. I purchased mini bread loaf pans and reduced the recipe down to fit a mini loaf, so I can have fresh bread every day.

My daughter is the one that is Celiac, she loves this bread. I even love this bread and I can eat normal bread.

Good luck, and remember we all go through a trial and error period to start with.

flourgirl Apprentice

Hi all. I'm new at all of this, too, and am struggling. I thought at first...no big deal. I've never been a food-a-holic anyway, probably because my subconscious knew foods made me sick, but forgot to tell my conscious mind. Anyway, off I went to the grocery store and checked out the health food section (call that way overpriced, mix and mingle all the food types and make you search for what you want-section). Hey, great! I found rice bread...no gluten. When I got home and tried it ugh!- I looked at my husband and said "I just don't think I can do this after all".

What we did was invest in a bread machine...invest in a few gluten-free cookbooks and start experimenting. Some of the breads I've tried are ok, some of them have been pretty good. all of them need to be toasted to taste the best. I figure at some point I'll forget what "real bread" tastes like and learn to actually enjoy gluten-free bread.

At first I thought that I would pretty quickly start to feel just fine and dandy, but 3 months after diagnosis I still feel absolutely horrible! Seriously depressed the last couple of days, but emotionally better today, sorta. I know eventually this will be behind me, and you, too. We all just have to hang in there and find our own way, with the help of all of our new friends.

silk Contributor
Hi all. I'm new at all of this, too, and am struggling. I thought at first...no big deal. I've never been a food-a-holic anyway, probably because my subconscious knew foods made me sick, but forgot to tell my conscious mind. Anyway, off I went to the grocery store and checked out the health food section (call that way overpriced, mix and mingle all the food types and make you search for what you want-section). Hey, great! I found rice bread...no gluten. When I got home and tried it ugh!- I looked at my husband and said "I just don't think I can do this after all".

What we did was invest in a bread machine...invest in a few gluten-free cookbooks and start experimenting. Some of the breads I've tried are ok, some of them have been pretty good. all of them need to be toasted to taste the best. I figure at some point I'll forget what "real bread" tastes like and learn to actually enjoy gluten-free bread.

At first I thought that I would pretty quickly start to feel just fine and dandy, but 3 months after diagnosis I still feel absolutely horrible! Seriously depressed the last couple of days, but emotionally better today, sorta. I know eventually this will be behind me, and you, too. We all just have to hang in there and find our own way, with the help of all of our new friends.

Welcome flourgirl. Don't you just love that roller coaster ride we are on? Sometimes it does that way. I used to love amusement parks. (Anybody know where I can score a gluten-free soft pretzel and mustard?) It is so easy to get depressed about the process when you are not feeling well. Getting used to the taste of the gluten-free breads was not as hard as the texture. Most of them (the commercial ones anyway) made my mouth feel slimey. I think that it is just a process of adapting. I made a chocolate cake last night from scratch with chocolate chips on top and it had a really great flavor. The texture is just different. Not un-appealing. Just not what we're used to. I'm thinking a cold glass of vanilla rice milk dumped over the top of a piece in a nice deep bowl might just do the trick.

Hang in there. I hope you feel better soon.!

Nancym Enthusiast

Empty your house of gluten. That should help a lot.

mushroom Proficient
Hi all. I'm new at all of this, too, and am struggling. I thought at first...no big deal. I've never been a food-a-holic anyway, probably because my subconscious knew foods made me sick, but forgot to tell my conscious mind. Anyway, off I went to the grocery store and checked out the health food section (call that way overpriced, mix and mingle all the food types and make you search for what you want-section). Hey, great! I found rice bread...no gluten. When I got home and tried it ugh!- I looked at my husband and said "I just don't think I can do this after all".

What we did was invest in a bread machine...invest in a few gluten-free cookbooks and start experimenting. Some of the breads I've tried are ok, some of them have been pretty good. all of them need to be toasted to taste the best. I figure at some point I'll forget what "real bread" tastes like and learn to actually enjoy gluten-free bread.

At first I thought that I would pretty quickly start to feel just fine and dandy, but 3 months after diagnosis I still feel absolutely horrible! Seriously depressed the last couple of days, but emotionally better today, sorta. I know eventually this will be behind me, and you, too. We all just have to hang in there and find our own way, with the help of all of our new friends.

Hi flourgirl:

I am as new to this as you are, and "my name is Neroli, I am a bread-aholic." I have been pretty bread desperate the last three months while I have been deglutening my house (hard parts--sauces, processsed packaged mixes, pickles, the totally unexpected things like hair rinses, facial lotions, etc.). The breads you can buy just don't taste like bread, no flavour, texture, hardly a suitable substitute). I have been building up my baking supplies (everytime I start to make something it seems like I need something I don't have--maybe I should start a basic gluten-free pantry list?), so apart from normally non-gluten meals the only things I have made that are normally gluten-containing are some cookies from the back of my muesli box and Mireille's banana/maple/pecan muffins (yummy) (for the two times I have hosted my afternoon bridge group).

I too have been on an emotional roller coaster; I just explain to my friends I have my good and my bad days, and try to make a special effort on my bad days.

Then -- Nirvana. My DH noticed across the street from an establishment he was patronising, a sign proclaiming "gluten free bakery". I headed there the next day (1-hr drive) and there I found a cornucopia of the most delicious baked goods, from bread with the texture and flavour of bread, to rolls, hamburger buns, pizza bases, delicate sweet pastries, scones, quiches... I had to pinch myself to think I had not gone to heaven. I spent a small fortune and will go back and spend another and another. They also sell their flour mix by the kilo (which is basically rice, tapioca and maize, but of course no recipe!). Their plain white bread looks like white bread and tastes good toasted or untoasted (I know this is not fair to those who don't have such a bakery--but I'm still going to try to bake my own just to see if it can be done). In the meantime I want to make sure this place stays in business. It is in a low rent district so there is hope.

I had thought I had gotten all the gluten out of my diet and then made an appalling discovery; I read somewhere on the approved list that with alcohol one can have wine and spirits, no beer, and had not given the definition of the word "spirits" any thought. For me spirits is scotch whisky, and it was not until reading the forum two nights ago that I concluded it must refer to clear spirits (gin and vodka). Is this right folks?? Anyway, the scotch is gone and I am hoping that horrible itching reaction I have been having the last 2-3 weeks was related to my now-gluten-free body objecting to the malt in the scotch. Some of us is slow/dumb about some things; I mean they talk about single malted scotch; how dense can one be??? Duh! So goodbye Drambuie, too, but I bought some Limoncello at the Mediterranean store to make up for it. Is there a more complete list of what alcoholic items are no-nos?

Anyway, what I'm saying is it is going to be roller coaster ride. Shopping takes twice as long having to read every single label, and just when you think that's one label I don't have to read, that's the one that you do. The stores (most of them) do not organize their wares in a gluten-free friendly way (Woolworths here is the notable exception, and New World puts their price sign with a blue label for any product that is gluten free), but generally the organic food stores are the better/more expensive bet.

All we all do is hang in there, hold on tight, learn from our friends here and trust in the future.

Good luck to us all.

silk Contributor

Neroli said: "I have been building up my baking supplies (everytime I start to make something it seems like I need something I don't have--maybe I should start a basic gluten-free pantry list?)"

Hi Neroli! Boy, if this isn't the truth! I buy things that I see listed in recipes that I want to try so that I have them on hand, and then forget that I have them and get more when I go to the store again. Or I start to bake something and realize I used up the last of ??whatever?? the last time I baked. And the flours come in such small packages for the quantity that most recipes call for. Some wonderful person here recommended shopping for tapioca flour, rice flour and potato starch at asian markets because they are much cheaper and come in a larger quantity. I will definitely be trekking to the Asian market before I do much more baking.

I am so envious of your gluten-free bakery! Then again, it's probably a good thing for my waist band and my blood sugar that we don't have one around here. But gosh, I would love to start one. I love to bake. Still searching for the perfect pie crust. That's a tough one.

Eat a scone for me!

ravenwoodglass Mentor
Is there a more complete list of what alcoholic items are no-nos?

Here you go.

Open Original Shared Link

There are others but this site has a good one.

skichikk18 Rookie

Hey all,

So the bread drama. I am also a bread adict and this diet is killing me. I can't find one I like either. The closest I have come is Pamela's Bread mix. I tried Kinnkinnick and HATE it. I feel like a freek saying taht because everyone else loves it. The texture, fact that it doesn't turn color when you toast it, ahh just everythign was all wrong for me. The other thing I am struggling with is pizza dough. I have tried gluten free pantry and Pamela's. I hated both. Both have either no texture or are a pain to make. Grr the frustration, I dont think I will ever feel happy again, like I did when I ate regular bread!

flourgirl Apprentice

Grocery list.....something I started a long time ago (because I blamed the brain fog on just being too busy and couldn't remember anything for more than 2 minutes) .....is a perpetual list that stays on the counter by the fridge. Anytime I am any where near the end of anything it goes on the list. If I'm looking at recipes, what I need goes on the list. If I shop and don't pick up something on the list, it gets written on the new list.

I keep all of my gluten-free baking supplies in clear plastic tubs, and put the label on the edge where I can see what it is without taking everything out of the cupboard. Any "mixes" that I make before hand have their own tub marked with marker. Organization helps me out a lot. I started a recipe box for gluten-free stuff that I try (seperate from the "real food recipe box". I don't add any recipes to the box until I have made it and dubbed it worthy of a place there. That way the box doesn't get filled with recipes that I'll never use again.

Hope some of this helps. I'm too scatter brained without these helpful tools. Hoping the fog will lift sometime soon. I USED to be a genius! :lol:

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      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!!! 
    • trents
      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
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