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Just When I Think I May Have This Figured Out...


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#1 aroche84

 
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Posted 28 July 2011 - 06:00 PM

I was supposed to hear back from my doctor by Friday of last week, after not hearing anything I called yesterday and left a message expressing that I was growing increasingly worried, he called me at 8 that night (this is not a good sign seeing as everytime my doctor has called after hours or on a holiday it has been bad news) he proceeded to tell me that I did in fact have Celiac like he suspected and that it is actually the worse Celiac panel that he has ever seen. He told me that I can not slip at all, no cheating and no chances that this could get bad. He stressed how important follow up appointments are. I am currently taking Dapsone to cure the little bumps that I got from this wonderful experience. The dermatologist made sure that I understood that I shouldnt take more of this medicine than needed because not only can the Celiac cause anemia but that this medicine on top of it can make my blood the consistency of water. This caused a panic attack seeing as if I scratch the bumps they bleed and already were taking up to 5 minutes to stop.

I have been gluten free since the 12th, not a long time by some standards, but I have struggled my way through. Pretty much if it isn't a fresh fruit or veggie, it isn't meat that I bought raw and cooked, or a dairy product that I have had in the past and haven't had a problem with I am not touching it. My mom was insistant that the "Mayo website said" that I could have whole grain bread or pasta my doctor confirmed that I would be hard pressed to find a whole grain bread or pasta that wasn't cross contaminated with some type of oat so I am going to continue to stay away from it. What I am wondering is what recipes have been successful for you guys?? This is driving me crazy because one of my passions in life is cooking and when I'm stressed I would bake now it is so hard because in a 4 person household I am finding that not until after my dad makes dinner for my mom my son and himself I then have to go in a make dinner for me.

I know that with this come depression but the past few days have been the hardest. I find myself sitting on the couch staring at the wall crying. The medicine makes me so tired so I can't just get up and go out and try to keep my mind off it. How do you cope?



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~*Ashley*~

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#2 kareng

 
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Posted 28 July 2011 - 06:15 PM

You & the family will get into a groove and it will get easier. Tonight's dinner was completely gluten-free for all. I threw some boneless chicken breasts in the bottom of the crockpot. Topped it with frozen corn, canned black beans, Rotel tomatoes. I made some rice. Hub & I had it over rice. 15 yr old has his and scooped it with half a bag of Santitos corn chips. 18 yr old shredded cheese and took the other half of the chips and made nachos in the microwave ( testing college cooking recipes).

See. Your family doesn't always have to have gluten. Look on here on the what's for dinner site. Some people are gourmet cooks & some eat some really weird s$$$ stuff. But most eat normal things your whole family could like. You can get gluten-free whole grain breads without oats if you want a sandwich.

My boys & their friends love gluten-free baked goods. My 15 year old said that as long as it sweet, has chocolate or PB and someone else ( meaning me) makes it....it's good.
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#3 love2travel

 
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Posted 28 July 2011 - 06:23 PM

Oh, I'm sorry to hear of your news! It is always hard to hear news like that, especially in the beginning. My passions include cooking and baking (I also teach culinary classes) so I felt like you to begin with. I was crushed and devastated and was focusing on what I could not have. I was diagnosed in February and it took about two months to really come to accept my diagnosis which was doubly rough as I did not have any obvious symptoms! So, knowing that grilled ciabatta bread would not cause me GI troubles was tempting BUT I have not cheated nor will I ever. Believe me - it is definitely a learning experience. I'm glad your doctor told you in no uncertain terms you cannot have any gluten. EVER. Many doctors do not get it. There are tons of tips on here on what you can/cannot have as well as avoiding cross contamination and hidden gluten.

I suggest searching the cooking and baking forum for recipe and meal ideas (i.e. we post what we have for dinner). Thankfully I have always scratch cooked (usually gourmet) and baked and that has not changed. There are tons of yummy concoctions that are intrinsically gluten-free. Cakes, brownies, quick breads, cookies and pastry are very easy to do gluten-free with no adverse effects. However, when it comes to fresh pasta, breads, buns, croissants, English muffins and pizza crust it is a different matter. Sure, there are some "ok" recipes but they just are not the real thing. Have you heard of Udi's bread? It is the best purchased bread I have tried. It is not wonderful but far better than the other cardboard/drywall/chalk/brick offerings! I remember crying the first time I tried bought gluten-free bread.

Many people (myself included) recommend not drowning out your sorrows in icky purchased processed snacks. I made the mistake of doing that to placate myself when I was told I MIGHT have celiac but when I found out by biopsies I did for certain I put an end to that. Why would I suddenly buy those things when I never have before? Weird.

In February I thought my culinary life was over. Boy, was I wrong (although I'm still sort of bitter about the breads and such!). My husband and I travel all over Europe to food fairs and Michelin-starred restaurants (or shall I say used to?!). I find eating out to be the most difficult. At home it is easy as our home is gluten-free. I'm so sorry that yours is not but hopefully with time your family will learn more and more about this. Anyway, I have not eaten at anyone else's home since my diagnosis nor do I want to - I just cannot trust it. I have not been to any church potlucks or wedding meals, either. However, many high-end restaurants are celiac aware. I call ahead re my dietary requirements. If it is obvious that they are knowledgable about foods/cross contamination (i.e. speak the celiac jargon) I feel ok about it. However, if there is a shadow of a doubt I do not do it. I will not go to a fast food restaurant and there are NO restaurants in our town I would be safe at. Zero. So, we drive three hours to eat out occasionally.

Just know that we ALL have been there. Do not beat yourself up if you make mistakes. It honestly does get better - I am proof of that. :)

Welcome here and to your new life!
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<p>Confirmed celiac disease February 2011 from biopsies. Strictly gluten free March 18 2011.Diagnosed with fibromyalgia April 13 2011.3 herniated discs, myofascial pain syndrome, IT band syndrome, 2 rotator cuff injuries - from an accident Dec. 07 - resulting in chronic pain ever since. Degenerative disc disease.Osteoarthritis in back and hips.Chronic insomnia mostly due to chronic pain.Aspartame free May 2011.

When our lives are squeezed by pressure and pain, what comes out is what is inside.

#4 aroche84

 
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Posted 28 July 2011 - 06:34 PM

Thank you so much for the advice. My neighbor made me some cabbage that she wilted down in butter olive oil and fresh garlic and then added diced up rotisserie chicken on top it was so good and the first time that I have felt "full" since I started eating Gluten free. I will definately check out the cooking and baking forum that will help a lot. The only thing I have bought that is aside from the fresh route is a bag of gluten free cookies...lol as I eat them I tell myself to suck it up they may not be the best but they have traces of chocolate flavoring so shut up and be happy. :)

What makes me want to scream are the people that don't get what is gong on and just tell me that at least I will lose a lot of weight not eating the breads/pastas. Oh and yes I have had a few tell me this as they are shoving pizza or spaghetti down their throat....how rude!!!

I know in time all things will ease up it just feels like that day is so far away. Until then I will keep my head up and battle through!!!
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~*Ashley*~

#5 love2travel

 
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Posted 28 July 2011 - 06:52 PM

Thank you so much for the advice. My neighbor made me some cabbage that she wilted down in butter olive oil and fresh garlic and then added diced up rotisserie chicken on top it was so good and the first time that I have felt "full" since I started eating Gluten free. I will definately check out the cooking and baking forum that will help a lot. The only thing I have bought that is aside from the fresh route is a bag of gluten free cookies...lol as I eat them I tell myself to suck it up they may not be the best but they have traces of chocolate flavoring so shut up and be happy. :)

What makes me want to scream are the people that don't get what is gong on and just tell me that at least I will lose a lot of weight not eating the breads/pastas. Oh and yes I have had a few tell me this as they are shoving pizza or spaghetti down their throat....how rude!!!

I know in time all things will ease up it just feels like that day is so far away. Until then I will keep my head up and battle through!!!


Your great attitude will really take you far. That is seriously much of the battle. I know what you mean about rude people and those who do not get it at all. Many people ask, "Can't you have just a little?" Sure - I'll have a little arsenic (some people here equate it with rat poison and other goodies).

What helped me was to think ahead to only about the next week - any further future thinking got me down because it seemed so daunting and overwhelming! Walking through the gluten-free section at our grocery store had me in tears the first few times. It was like I was a foreigner who did not speak or understand the language.

It really is amazing what a few months difference makes. Just keep hanging in there. Seriously - you can and will do this!
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<p>Confirmed celiac disease February 2011 from biopsies. Strictly gluten free March 18 2011.Diagnosed with fibromyalgia April 13 2011.3 herniated discs, myofascial pain syndrome, IT band syndrome, 2 rotator cuff injuries - from an accident Dec. 07 - resulting in chronic pain ever since. Degenerative disc disease.Osteoarthritis in back and hips.Chronic insomnia mostly due to chronic pain.Aspartame free May 2011.

When our lives are squeezed by pressure and pain, what comes out is what is inside.

#6 T.H.

 
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Posted 28 July 2011 - 08:47 PM



Pretty much if it isn't a fresh fruit or veggie, it isn't meat that I bought raw and cooked, or a dairy product that I have had in the past and haven't had a problem with I am not touching it. My mom was insistant that the "Mayo website said" that I could have whole grain bread or pasta my doctor confirmed that I would be hard pressed to find a whole grain bread or pasta that wasn't cross contaminated with some type of oat so I am going to continue to stay away from it. What I am wondering is what recipes have been successful for you guys??

I know that with this come depression but the past few days have been the hardest... How do you cope?


Glad you now know what's going on, but so sorry it's so hard for you right now! I think for a lot of us it's that way for a month or two - overwhelming, a big desire to rage or cry because it just feels exhausting and impossible.

I'm very sensitive to gluten, too, so I really sympathize with the separate cooking. My whole household is gluten free now, but when we visit anywhere for a trip, I can't cook at the same time and it's very isolating. Sucks, yeah.

Your doctor sounds like he has more practical knowledge than the Mayo clinic. I have found almost no grains that I can eat that aren't contaminated, so none of my foods anymore contain grains, pretty much. We're hoping on one type of sorghum, but it's iffy at the moment However, to be fair, I'm oat sensitive AND more sensitive to gluten than most, so my experience is not the same as the average celiac.

If your mother is insistent and you wish to try some, though? Quinoa from Ancient Harvest, in the larger amounts like 25 pounds, ordered on-line, might work. It is sent straight from Bolivia, and as I understand it, oats, rye, barley, and wheat can't grow at the altitude they are grown at, so the field contamination is absent.

The smaller boxes of quinoa from this company are shipped to the USA and have more potential contamination issues because of processing within their factory. :-P

If oats are a big worry, you should probably know that Lundberg rice and Bob's Red Mill are two companies that a number of oat sensitive celiacs have reported issues with. Lundberg has oats as a cover crop, and Bob's Red Mill processes their gluten-free oats in the same area as their other gluten-free grains.

Successful recipes:
Ethiopian recipes, if you can find a teff that works for you (Teff co., which can be ordered on-line, only grows teff, but they do share a harvester with other farms, last I looked. Most people do okay with them, however.) Injera bread, traditional recipes of it, only have teff and no wheat. It's a fermented tortilla-like bread, good to eat with savory meat and vegetable dishes. Not a good flavor with sweets, though.

raw food recipes and vegan recipes - some of these have been very nice for fruit and veggie stuff, elaborate salads with interesting flavors, that sort of thing. For example: peel a zucchini until it's all just peeled strips of zucchini. Leave it out (in fridge if house is warm) for a few hours, until the strips are a little soft. Make a tomato sauce from scratch, when simmering, add the zucchini for a few minutes to the simmering sauce. It's a fun pasta substitute.

Avocados, sweet potatoes, potatoes, and taro root have been good for trying to get more carbs and calories if one is grain free. True yams (from africa) are good for this too, but you might have to find a jamaican or african grocery store for this.

Beans are great when they work, but hard to find beans that aren't processed with wheat. My safe source just hit a potential snag, so I'm no good at recommending a source, there.

Do you live somewhere sunny? I just saved up and got something called a solar oven. I love this stupid thing. It's a box with a metal fan around it, basically, that can heat up to 400 F. Pretty much like a big solar crockpot, LOL. But being able to get a pot of food, stick it out in the morning, and come back at dinner-time to cooked food - that has been nowhere NEAR a kitchen with trouble foods for me - has been wonderful.

Very soothing not to have to worry about food at dinner time when we're tired and hungry.

Soups are easy things, and you can play around with the recipes a lot, so might help you feed the cooking bug, there.

And...can't think of more, off hand. Hoping that you are over the hump soon and into the easier side of things!
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T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

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#7 lilu

 
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Posted 28 July 2011 - 09:14 PM

Ok, we don't have a mixed house, so I'm going off the cuff here, but how about planning 4-5 different meals you enjoy, cooking them up on a weekend, and then storing them in single servings in the freezer? This would allow you to:
1) have a full meal (I often find if I'm tired and cooking for just me I'll just throw together any old things)
2) eat with the family (cuz you're just heating yours up!)
3) not have to wait
4) not have to cook after work, busy day, etc.

Some of the things that we like which freeze well include chili, beef stew, chicken and rice or mashed potatoes, sheppards pie (no pie crust), crustless (or gluten-free crust) quiches.

I bet as you go along, you could actually make yourSELF such yummy dinners that your family will be jealous! Especially if you sit at the table and enjoy it right next to them!
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#8 lovesaceliac

 
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Posted 28 July 2011 - 10:35 PM

The first six months were the hardest and at first it was very frustrating - you have to rethink how you do food, but now that I'm two and a half years into it, preparing meals, baking, etc. is all so natural. Made chocolate chip cookies tonight (using Pamela's mix and the recipe on back.) My husband will attest to the fact that my gluten free chocolate chip cookies are way better then the gluten ones ever were! Pamela's Pancake mix is a staple in our house.
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#9 Takala

 
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Posted 29 July 2011 - 04:13 AM

Q. How do you cope?
A. chocolate and coconut.

You will find that if you want to, you can make "bread" like foods out of almost anything, including grainless recipes. And you can grind nuts in a blender and buckwheat kernels (kasha) in a coffee grinder. You can even use a hand mortar and pestle... Potatoes can be cooked and then mashed, as can beans, bananas. Pumpkin is another useful ingredient. Some people like tapioca. If you can't tolerate xanthan or guar gum, there is flax dissolved in hot water and chia seed soaked in cold water, to make gels. Seeds like amaranth are not only high protein, but strangely somewhat mold retardant. Pre soaking some gluten free type seed meals in water and pure cider vinegar also makes them behave more like flour. And you can bake in a cup in the microwave.

If you can find alternative non grain ingredients which are not cross contaminated, you can have a lot of fun experimenting with either pancakes or bun in a cup microwave recipes. I also do a skillet bread sometimes of almond meal and amaranth, which, when sweetened, tastes a lot like cornbread. My go - to recipes tend to be a flatbread I can throw together really quickly out of whatever I feel like, such as buckwheat,garbanzo, and potato, (better than it sounds, trust me, you just have to add a little sweet and a pinch of cumin and cinnamon) or a nut meal based "mufffin" in the microwave, with citrus peel for flavoring.

Also, you may want to start taking a gluten-free B vitamin complex and a calcium magnesium D supplement, helps with the healing and mood.
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#10 lilu

 
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Posted 29 July 2011 - 05:18 AM

Q. How do you cope?
A. chocolate and coconut.


Ha ha ha ha ha ha! :D thank you for give me a great belly laugh! Love it! :)
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Lilu

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Gluten Free home since June 2011




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