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Freaking Out
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My doctor seems pretty sure that I have an intolerance to gluten. I am awaiting my test. But I am freaking out. I don't have the symptoms that I have read about here, but I having the beginning of osteoporosis because I seem not to be assimilating Vitamin D. I am a 59 year old female, I'm 5'3" and weigh 113 pounds. I am a "foodie" though I hate to even label myself that way. I'm basically a vegetarian and have been very many years. I eat fairly well (organic and cook from scratch) but I am a pastry addict. I don't eat a lot (or I would weigh more) but I lived in Europe, and I need to start my day with a cup of coffee and a cheese danish or an almond brioche from a french bakery in L.A. or a croissant with a cappuccino. The only time I ate really well, was when I was pregnant - I never drank any coffee. But the thought of giving up gluten would make me so miserable - I's probably turn into a blimp because nothing will satisfy my craving for starch. Has anybody else felt this depressed? I have great will power, but this seems beyond anything I can do. I have no stomach aches or pains. Maybe I'll get lucky and the test will be negative, but I know it probably won't. Will I at least be able to have an occasional treat, or is it all or nothing?

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eveyone is different, but if you are positive for celiac then you will need to cut out the gluten

however, if you are like me, and it's a WHEAT issue, then if you cheat then you deal w/ the consequences but it's not as life threatening as if you had celiac

even if it IS ceilac, there are plenty of options out there to work with, especially since you say you are a foodie. just think of all the new flours and other items (think molecular gastronomy :D) that you will get to add to your cooking dossier.

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My doctor seems pretty sure that I have an intolerance to gluten. I am awaiting my test. But I am freaking out. I don't have the symptoms that I have read about here, but I having the beginning of osteoporosis because I seem not to be assimilating Vitamin D. I am a 59 year old female, I'm 5'3" and weigh 113 pounds. I am a "foodie" though I hate to even label myself that way. I'm basically a vegetarian and have been very many years. I eat fairly well (organic and cook from scratch) but I am a pastry addict. I don't eat a lot (or I would weigh more) but I lived in Europe, and I need to start my day with a cup of coffee and a cheese danish or an almond brioche from a french bakery in L.A. or a croissant with a cappuccino. The only time I ate really well, was when I was pregnant - I never drank any coffee. But the thought of giving up gluten would make me so miserable - I's probably turn into a blimp because nothing will satisfy my craving for starch. Has anybody else felt this depressed? I have great will power, but this seems beyond anything I can do. I have no stomach aches or pains. Maybe I'll get lucky and the test will be negative, but I know it probably won't. Will I at least be able to have an occasional treat, or is it all or nothing?

I really, really, really like to eat too. To the extent that sometimes I think about meals I've eaten when I want to feel happy. I can describe dishes I ate years ago in detail. I know that not everybody is like that, and not everybody understands either.

Over a decade ago, I choose to make radical changes in my diet after being diagnosed with fibromyalgia. I was in pretty much constant pain, else I never would have gone through with it. I gave up coffee, white flour, white sugar, dairy (except for yogurt), and meat. Meat was the hardest (bacon, fried chicken, Brazilian barbecue ... umh ...). I've been a vegetarian now for over a decade, and it's great. I adjusted. I found other things I liked as much. I was able to ease up a little on my strict diet after I was well, but still basically stick to what I described here.

I was *really* depressed too when I realized gluten was making me sick. I felt really bad for myself. ("I already give up so much. Why this too?") I let myself eat ice-cream for the first time in a decade.

But, it's been 6~ weeks now, and I am adjusting. I'm determined to make some cashew burfa (an Indian desert) tonight. I've been eating lots of dried fruit for desert. I will say breakfast is the hardest. I'm glad there's gluten-free bread out there, even if the price is outrageous. Maybe, you could treat yourself for awhile to gluten-free croissants. I know they won't taste as good (at first), but it may help.

At least there's no gluten in cappuccino. Love those! Still sometimes have decaf cappuccinos, even though they're not as good.

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Really, it's not a death sentence. Take it from this life long foodie. Life revolved around food. I come from a long line of foodies. There was no bigger foodie than me. And I am not exxagerating.

So, it's been almost one year since diagnosis. And yes, the first few months were tough.

Now, I am a fairly good baker. With gluten free flours. I hated to bake before, but loved to cook. Now baking for my son gives me joy.

For me, food has become more about fuel, which I am really happy about. It really is a lot of work being a foodie.

You'll be ok. If you can't find the delicious things you love, you can learn to make them. You'll be just fine!

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Hi -

I stopped eating gluten yesterday. Today on my way home, I started to swing into White Castle and then remembered that I can't have my White Castles any more. It made me sad, so I understand what you're saying.

I love to have a Canadian Mist and ginger ale while I watch American Idol (it's a tradition) or a beer, and I know I can't have the beer and I don't know about the bourbon. I've been thinking about all the things I love that I'll have to give up. Every morning for breakfast, I have a pack of Lipton Double Noodle Soup (that kind in a box) I've been having that for breakfast since I don't know when, so now I have no clue at all what I'm going to eat. I found out today I CAN eat Fritos and bean dip, another favorite of mine.

If I had to choose between MS and being on a different diet, I'll do the different diet. I tell myself, "go on and eat that, girl, that's on you....make yourself sick..." Actually, I'm so terrified and sick and tired of feeling like I have been, THAT'S the part I make myself think about.

I think the hardest part is going to be just getting used to it, not eating something out of habit and/or eating something you don't realize you shouldn't.

I really like this forum, the people are compassionate and knowledgeable. Hang tough, hon, ... and I will too ;)

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It takes a while, but you really do get to the place where you can either recreate whatever you want to eat w/ gluten free stuff... or you do w/out.

I keep saying ... in the scheme of things and the awful things that can happen to people ... not eating gluten is NOTHING. I just had to learn to cook differently.

But, like I said ... it takes a while.

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You can still have Redbridge and other gluten free beers while watching American Idol; each person has to find out for themselves whether they can handle distilled spirits - most can, but it is better to wait until you've healed a bit. The Redbridge beer is brewed using sorghum I believe. Looks like you will need to make your own rice noodle soup; a big pot in the fridge should last a while.

To both of you, the initial adjustment period is tough, but once you start equating gluten with rat poison it suddenly loses a lot of it's appeal :lol: (and for us it is the equivalent of rat poison). Pretty soon you will find out what wonderful things you can cook up gluten free - much better than the processed gluten free foods you find in the markets, and you will be proud of your newfound baking skills.

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Maybe this will cheer you up. It's the blog of a French pastry chef who has family members with celiac disease and is constantly working on new gluten-free recipes. You absolutely do not have to give up baking! http://www.mytartelette.com/

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Don't give up!!

If you really want a good reading experience to show just how damaging wheat is (to all living creatures too, not just humans!!) read a book called Healthier Without Wheat by Stephen Wangen.

There are other grains, seeds which can be made into grains, and you can bake and cook, you just can't do it on the fly anymore. You need to prepare ahead and just change your lifestyle a bit. Your resolve and reward for changing and sticking to the diet is more energy than you ever knew you could have to cook and bake all of those things that truly feed your body and mind and don't make you sick and sluggish.

Right now, I am baking up a very yummy gingerbread with buckwheat flour.

It should be done in about 5 minutes.

You can do this too if you so choose.

You will find that you always get your daily servings of fruits and veggies per day.

You will find that you really can be healthy and not be a slave to a pill or 4 every day.

It's not easy esp. in North America and Europe where things you can't have are all around you.

But your resolve to staying gluten free really does pay off!!

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I think that if you feel a massive craving for gluten, it may be because it isnt doing you any good. I know how hard it is to give up the gluten - I used to say that bread was my crack. I craved it like nothing else, not even coffee came close. I also used to work in a bakery!! My recommendation on giving up gluten would be to make a last chance list, and load up on the gluten the weekend before going gluten-free. I felt so sick after that it helped me through the next few weeks.

I find now that the smell of a lot of gluten products makes me feel somewhat ill, even toast and pizza which i loved. You also lose the exact taste of the gluten foods over time, so that comparisons with gluten-free products aren't such an issue. Also, these products are getting better and better. There are a lot of products that are actually nice! gluten-free baking is different, but with practice I'm sure you can make something that hits the spot.

As a foodie, you actually have a great head start as you are more likely to make the effort to create enjoyable gluten-free foods. There are gluten-free food blogs and masses of cookbooks. Although giving up the gluten may seem like the end of the world, it is a far better option than osteoporosis (and all the other problems assocaited with gluten). Also, some gluten symptoms can be hard to spot, so you have no idea how much better you may feel after giving up gluten :)

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I have become more of a "foodie" because of gluten free! :D

You can recreate foods that you loved. I recreated a four layer chocolate cake with alternating layers of chocolate and white chocolate mousse. Gluten eaters can't get enough of this cake. I can't go anywhere without people asking me to make it for them once they have tried it. :o Therefore I have named it the chocolate monster. The cake is super size, but I still end up making about 5 (that's right FIVE) different cakes for my kids' birthday parties because now I have a reputation for awesome cakes. (It is a large family too.)

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    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
    • Mnoosh, I had swollen lymph nodes prior to celiac dx and for a while after going gluten free. My neck as well as groin. The groin ones were the worst. Guess what? All gone! It's hard to recall a time line & consider that everyone is different but I think mine completely resolved within a year.  You've been given great information. Just breathe and then again, breathe. You're going to be fine. 
    • It is the only thing you have eaten, so it can't be anything else?  I eat it with no issues so I am not sure how you can be certain that is the problem.  All I am saying is that its sort of "your word against mine and the company's word".  
    • Thanks cyclinglady & manasota! I appreciate it. I came to give an update...... I'm still 99% itch free. I get a "place" like a bug bite once in a while that itches and I just use the prescription steroid cream on it & that takes care of the itch. My rash is healing up rapidly everywhere. Almost clear skin now! Yaaaaayyyyyyyyyy! Now for a rundown of the "treatment". For 20 days I took a 100mg doxycycline twice a day. Then we upped it to two 100mg doxy twice per day. I took those for 5 days & made rapid progress and the itching stopped. The doxy was getting my tummy though. It was getting really rough despite my eating yogurt. So on day 6 and day 7, I took two 100mg doxy in the am but in the pm I just took 1 of them. On day 7, I was nauseous for hours on end. So since I was still doing well without itching and the rash was healing everywhere, I decided to cut back some more. On days 8, 9, & 10 I have only taken two 100mg doxy in the am and none at night. I'm doing good and my tummy is much, much happier! No more nausea!  I'll update as things go along.
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