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Brand New Diagnosis!


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#1 TeresaAnn

 
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Posted 16 September 2011 - 10:38 AM

Hi There...
I was just diagnosed this week with Celiac Disease. I've had symptoms for years...but recently the Celiac Blood Testing panel came back positive. I am also suffering from an EXTREME Vitamin B12 deficiency...I've been on the shots for about 6 months and not much relief so I'm hoping the new Gluten Free Diet will change that.

My Dr. is also restricting me from Dairy and sugar for the first 3 mos of the diet then I can gradually add them back. I seriously cannot wait to start feeling better. My pancreas is not doing well at this point and I'm hoping the diet change will speed up the healing process. Did anyone else experience any malfunction with vital organs before being diagnosed and how long before I can expect to feel at least somewhat better?

I'm pretty over whelmed right now. Oh...I'm a Pastry Chef so this is going to be a challenge. However...I'm going to make it my goal to creat new and delicious breads, pastries and desserts that are Gluten Free!

Thanks a bunch...
Teresa
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Wherever you go, no matter what the weather, always bring your own sunshine.

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#2 Gemini

 
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Posted 16 September 2011 - 11:20 AM

Hi There...
I was just diagnosed this week with Celiac Disease. I've had symptoms for years...but recently the Celiac Blood Testing panel came back positive. I am also suffering from an EXTREME Vitamin B12 deficiency...I've been on the shots for about 6 months and not much relief so I'm hoping the new Gluten Free Diet will change that.

My Dr. is also restricting me from Dairy and sugar for the first 3 mos of the diet then I can gradually add them back. I seriously cannot wait to start feeling better. My pancreas is not doing well at this point and I'm hoping the diet change will speed up the healing process. Did anyone else experience any malfunction with vital organs before being diagnosed and how long before I can expect to feel at least somewhat better?

I'm pretty over whelmed right now. Oh...I'm a Pastry Chef so this is going to be a challenge. However...I'm going to make it my goal to creat new and delicious breads, pastries and desserts that are Gluten Free!

Thanks a bunch...
Teresa


Bless your little pastry creme filled heart, Teresa, and welcome to the world of the Celiac! :D You could end up becoming a
millionaire if you develop some great gluten-free goodies for the rest of us! You have a wonderful attitude. If you follow the diet strictly, you'll heal so don't worry. The rest of us on this board are here to help.

Healing is individual for everyone and it depends on many factors. I hope you are not working with regular wheat flour in your job because that's going to be a problem if you inhale it on a regular basis. That will keep you from healing well.

I was deathly ill when diagnosed and might not have made it. I was diagnosed just in time and I healed well...it did take about 3 years total for all symptoms and problems to disappear, though, so be patient. You can turn everything around, for the most part, so don't despair. You seem to have a positive attitude so that will help tremendously! Any questions, ask away....
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#3 pricklypear1971

 
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Posted 16 September 2011 - 11:22 AM

Hi there and welcome!

First, everyone varies as far as recovery goes. The first few weeks (if not months) can be tough because most go through a type of detox. Many of us have issues like sub-optimal hormone levels, liver congestion, etc. Proper diet and supplamentation is key and it sounds like your doc is on it.

One big caution for you, if you still bake with glutenous products make sure you take precautions like a face mask and gloves. Some Celiacs become quite ill from inhaling (and swallowing) workplace gluten.

Best of luck and welcome!
  • 1
Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#4 TeresaAnn

 
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Posted 16 September 2011 - 03:41 PM

Hi there and welcome!

First, everyone varies as far as recovery goes. The first few weeks (if not months) can be tough because most go through a type of detox. Many of us have issues like sub-optimal hormone levels, liver congestion, etc. Proper diet and supplamentation is key and it sounds like your doc is on it.

One big caution for you, if you still bake with glutenous products make sure you take precautions like a face mask and gloves. Some Celiacs become quite ill from inhaling (and swallowing) workplace gluten.

Best of luck and welcome!



Yes...I'm going to have to figure out the best way to work around my ingredients...but I must say...since I have my own commercial bakery kitchen in my house...I may just decide this is the avenue I am taking and completely change to being the best provider of gluten free wedding cakes, bread and other pastires. I live in a small coastal town so there is NOTHING to choose from for people who have Celiac or just want to eat gluten free. We have a really great health food store in the next town up...I spent a couple hours there today. The owner is also Celiac and was super helpful. I'm going to detox my kitchen and myself. :) My husband said he's on board...our kids are teens...that could be a challenge...but If I don't buy them poisen...they can't eat it, right? I guess they can at school and out of the house...but they eat what I make for them and for the most part we eat organic and healthy anyway...so it will all be ok.

I am going to stay really positive and I am greatful and thankful that I don't have something that I can't work around. My husband gave me a hug and said, "It's not cancer....or watergate." lol...I guess he's right. :)

Thanks so much for the uplifting messages. I'm going to use this site to the fullest! <3
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Wherever you go, no matter what the weather, always bring your own sunshine.

#5 T.H.

 
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Posted 16 September 2011 - 07:25 PM

Glad that you can make gluten-free foods if you want to with your job - that's awesome!

In that venue, I should mention a food that will make you a goddess among celiacs, if you can create some good ones: gluten-free versions of Girl Scout cookies. Seriously - people will bow down for this one. :lol:

Seriously

Re: your teens. Now that you have been diagnosed, it's recommended that all blood relatives 1 degree separated be tested as well, even without symptoms, because silent celiac disease will cause lots of problems but give a sufferer no warning until organs start to give out, like you experienced.

So your siblings, parents, and children should be tested, if you can pester 'em enough. Their chances of having celiac disease change from the generic 1 in 133 to 1 in 22, now that you've been diagnosed.


My father was diagnosed 10 years ago, and we didn't know this. 8 years later, as I was getting sicker and sicker, I got tested and came back positive. Then we tested everyone and my daughter and brother both have it, too. Son has symptoms that go away on a gluten free diet, even though he tested negative. So it can really make a big difference.


And you're absolutely right - this is SO much better than other things we could have. It's the only auto-immune disease in existence where we actually know what makes it stop attacking us (gluten, obviously). Compared to all the others we could have, this is so much better.

Re: organs having trouble and coming back. I didn't have organ trouble, I had glands acting up. My thyroid was getting worse and worse. Gluten free 2 years now and it's completely normal now. I just found out a couple weeks ago and did a little happy dance. :D

I hope your own happy dance is just as energetic and fun.
  • 1

T.H.

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

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive


#6 pricklypear1971

 
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Posted 16 September 2011 - 09:16 PM

Exactly. Don't buy gluten and they can't have it at home. I'm sure you'll create lots of great gluten-free baked goods, etc. to replace them. And teens can always get a fix when they are out.

I'm sure you'll have lots of interested munchers and customers. gluten-free bakeries are rare and I hope you become one more.
  • 1
Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#7 AVR1962

 
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Posted 16 September 2011 - 10:53 PM

You asked about problems with vital organs? Are you having any issues with organs now?

I have a teen at home and it is not an issue. Both she and my husband like the gluten-free foods I have made. I do still wheat flour in the house and my teenager might make a batch of cookies for her and her dad so we all have to be careful. I line of muffin pan, cover the butcher block with waxed paper if I use it for my stuff, use napkins on the counter tops and I do not use wooden spoons for anything I cook for myself.

I think it would be great if you could get your own little gluten-free business going! Good luck to you!!
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Yesterday is not ours to recover but today is ours to win or lose!

Miscarriage, Kidney stones, Anemia, Pneumonia, Migraines, Restless leg, Bone fractures, Blurred/Double vision, Extreme fatigue, Bone & Joint Pain, Thyroid nodule, Celiac diagnosed 2011, Spine and leg bone loss, GERD, Vitamin deficiencies, Malabsorbtion, Neuropathy issues, Ataxia, Raynaud's Syndrome. Currently on diet with limited grain and sugar.

#8 Twinklestars

 
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Posted 16 September 2011 - 11:42 PM

Hello and welcome :) It's rather ironic for a pastry chef to be celiac, but how fabulous that you'll be experimenting with gluten free baking!
You sound like you have such a positive attitude towards being celiac, which will help in your journey tremendously!
I second getting your teens tested. With celiac you just never know.
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#9 TeresaAnn

 
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Posted 16 September 2011 - 11:57 PM

Thank you all for the awesome responses! We have talked to the Dr.about tests for the kids and they will be getting those. I also notified my siblings. My sisters were more positive and accepting the possibility. Both of my brothers are digging in their heels. They have great wives so I am hoping that they will come around. I am thinking about doing a little baking class for kids with celiac. A friend of mine has a daughter who has Asperger's Syndrome and can't have gluten...she would love it. Maybe there was a reason for my diagnosis. I'm really ok with it. :)
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Wherever you go, no matter what the weather, always bring your own sunshine.

#10 a1956chill

 
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Posted 17 September 2011 - 12:14 AM

this link is to a site that will help with your introduction to gluten free baking

http://glutenfreegod...for-gluten.html


Welcome to the forums :)
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Gluten free Oct/09
Soy free Nov/10

numerous additional intolerances,, i.e. If it tries to kill me I do not eat it .
After 40+ years of misdiagnoses I was diagnosed with:
Dermatitis Herpetiformis : Positive DH biopsy...... Celiac :based on DH biopsy and diet response.

Osteoporosis before  age 50
Hashimoto's thyroiditis disease .

Diagnosed type 2 Diabetes 

Osteoarthritis

Gilbert's Syndrome , confirmed by gene testing


#11 Reba32

 
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Posted 17 September 2011 - 06:40 AM

My fave gluten free flour is coconut flour. It's a bit spendy, but it makes awesome cupcakes and I even managed a pie crust with it :) I've also used (certified gluten free) oat flour with great success as well. There are sooooo many options for gluten free baking, experiment with more than just the usual rice or potato flours :)

One way to keep your expenses down is to buy yourself a grain mill and use it to mill your own flours. Buy whole oats, (certified gluten free oats of course!) rice, beans and nuts in bulk, and then grind them. It'll save about half your $. Gluten free flours are very costly!
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#12 TeresaAnn

 
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Posted 17 September 2011 - 10:16 AM

I have been noticing the cost of gluten free flours are high. Does anyone have a favorite vendor that sells it in bulk?
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Wherever you go, no matter what the weather, always bring your own sunshine.

#13 T.H.

 
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Posted 17 September 2011 - 11:09 AM

I have been noticing the cost of gluten free flours are high. Does anyone have a favorite vendor that sells it in bulk?


If you are looking for quinoa, you can get on-line and buy in bulk from Ancient Harvest, although you have to hunt a bit to find it on their on-line ordering area. It's not that much cheaper, though.

A lot of companies will sell in bulk if you check on their websites. Bob's Red Mill sells bigger bags of their flours, for example. I believe Pamela's does, too.

(Company Name Removed - They Spammed This Forum and are Banned) can be a place to look too (I know, I had no idea!).

Azurestandard has a lot of products you can buy in bulk. Also, if you can find the folks in your area who are ordering, many band together and make a joint 'drop point,' which lowers the cost significantly, I understand.

http://www.azurestandard.com/
  • 0

T.H.

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

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive


#14 Reba32

 
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Posted 19 September 2011 - 06:06 AM

you can also buy packages of whole seeds, nuts, beans, or gluten free grains and grind/mill them at home in a spice mill or food processor. This can save you quite a bit of money. Almond flour can be as much as $15 per pound, but a bulk bag of almonds at Costco is a lot less, and then you can grind them at home. With nuts I usually end up with more of a meal than a flour, but it does work!

I just bought myself a grain mill so I can get finer flours at home. I'm waiting for it to be delivered, and then I will start some marathon baking! ;)
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#15 pricklypear1971

 
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Posted 19 September 2011 - 06:47 AM

One note.

If you start baking to sell, you will get a lot if questions about your ingredients sources. You're going to find gluten-free people are VERY picky.

So, stick with reputable and traceable sources, and tell people what they are. You'd rather have someone say "oh, I can't eat Bob's Red Mill mix", rather than "I ate her cake
and got so sick, I don't know what she put in it but she
doesn't know what she's doing".

And don't put oats in your main flour mix, even gluten-free certified. You won't gave many takers. Only put oats in a
few things.

And if you are using equipment you used to make gluten foods - you're going to have to clean it with a fine-toothed comb. And even then you'll notice some people asking how long the facility has been gluten-free, and if you're using your old equipment, etc.

If you're just cooking for yourself - have fun!
  • 0
Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!




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