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LLB

Just Diagnosed This Morning

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I was just was diagnosed with "moderate to severe" Celiac Disease this morning and have spent the better part of the afternoon reading all I can find on the internet. I'm 57 years old and I now know that many of the problems I've had for years (anemia, osteoporosis, lack of energy) have all probably been caused by celiac disease. I can't decide if I'm relieved, mad, sad, or all at the same time. I've told my husband that I am going to take this diagnosis as the opportunity to make not only changes in my diet, but general lifestyle as well. I'm not much of a cook and we love to eat out so my guess is that is going to be the biggest challenge. Any and all suggestions are welcome at this point! I am just OVERWHELMED.

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Guest j_mommy

I hear ya!!! At first I was just ticked. Then I wanted to find out all I could. And then I was decided this was teh best thiing that could've happened to me. I'm been carrying this baby weight(my son is 2) and now I'm forced to stick to a healthier diet!

Two things I recommend: Living Gluten Free for dummies...great info and funny!!!! Also Celiac Disease: A Hidden Epidemic by Dr. Peter Green. You can get both books toether at a cheap price on amazon .com

This site is a WEALTH of knowledge!!!! It gave me sanity back after I was diagnosed!!!!! It made me feel like I can actually do this!

Don't rush out and replace all gluten foods with the Gluten free version. Alot of the times they are more calories. I do more naturally gluten free foods ie: meats, veggies and fruit. I do have some gluten-free versions on hand incase I go through withdrawls!!!!LOL

Eating out is hard and I am still getting comfy with that! People with longer Dx's on this site can help more with that!!!

Good luck to you and welcome to the site!!!!!

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LLB:

Congratulation! You are now in control of your own health without the needs of a mirage of drugs. What's not good about this.

Yes, there may be an adjustment, but it is very doable. Perhaps you can find that hidden creativity in culinary arts. Eating out can be done, just with careful attention.

I certainly can understand you being overwhelmed. That's very natural.

Going gluten free presented a series of events/feeling for me.

1. You madly learn everything you can get you hands on. That will take several months.

2. You learn to read labels, call companies..you best friend is a www. address or a 1 (800) #.

3. You learn your staples..certain products that you can trust (we can help with that)

4. You settle in with you diet, can have people over for dinner with gluten free dinner and they don't

even know.

5. Sometimes, you will go to the grocery store and get really angry, perhaps cry and just kind of mad

with the world feeling.

6. You learn to dwell on the positive side and ignore the negative.

7. Acceptance and comfortable with your choices.

I was diagnosed at 50 and 52 now. You can do this and we have the best support system available anywhere. Including the most knowledgable celiac experts you can find....right here.

Please feel welcome and as I know you have many question. Your questions will be answered by the most informed people you can find.

Welcome to our world.


Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

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Welcome to the club.. After getting my test results and trying a gluten-free diet and feeling better it was a relief to finally understand maybe some of my problems and know that there is at least one of them I CAN CONTROL.

I have been on gluten-free for about 6 weeks.

All of above info is great this site is a daily visit for me (or 2)

I use a lot of corn tortilla's to wrap burgers etc in to replace bread.

I use the gluten-free all purpose flour mix for most things (Rice, Potato, tapioca) I have made Chocolate buttermilk sheet cake you cannot tell diff hardly and the sausage balls I made with gluten-free bisquick no one at the party even knew.

Get some good cookbooks, I try to plan the next days lunch and supper so I am not tempted to go out for fast food. I do go to some restaurants with good luck- Mexican cuisine is your friend-lol

Red Lobster and Outback have also worked well. I try to have things around to eat so I do feel as deprived and depressed about it. However a lot of the gluten-free items at a Health food store taste yuccky to me anyway. I try to make things to have around and have found some good standbys to use.

READ labels- Pringles- almost all but one variety I like have gluten, but if you read you can usually find a gluten-free brand, this does change so you always need to read the label.

You can pm me with ?? It does get better and less overwhelming as time goes on.

Eat to live not live to eat and you will be a healthier happier person...

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Please - recheck the pringles chips. Lays Staxx are produced on a dedicate line.


Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

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Welcome; aboard I so glad you finally found out what's been causing your problems for so many years. I am also in my fifty's I was diagnosed at 52 and I am now 55 and Dr said I probably had it all my life. I think I have going back thinking about all my problems. I am still battling the bloating stomach and gas at night. I think I still haven't heal all the way but my Dr told me I may not . He was such a great GI Dr He is my Hero. HAPPY MOTHERS DAY TO EVERY BODY

\

'

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Welcome. LLB

You will hit a learning curve that goes at warp speed!

I suggest you check out NoGluGirl's posts as she has wonderful lists of "can haves".

Sometimes it's easier to know what you can do, rather than focus on the "can'ts".

If you have questions, ask away........one thing about us celiacs.....we always have opinions!!! :P


Iron deficiency without anemia, unexplained weight loss 2/2003

Positive celiac biopsy 4/2003

Autoimmune thyroiditis 8/2005

Gluten Free Since 2003

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Bettty

Hello fellow Texan, where are you in Texas. I am in Arlington went to a nice enough GI Doctor over by Arlington Memorial Hospital. He did tell me after I tested Negative for everything that he was not convinced that I did not have celiac disease, and also said that if I did have anything that he would want me to have IBS because you can control that with medicine, and then I told him that I am not and do not want to controll my body with Medicine, I would rather do that with food. Now if was my heart ok I would take medicine, to control my insulin leves ok. I don't think that he was to happy with my comment. I have not seen him since I had my negative PILLCAM but did offer to refer me to another doctor in Dallas, told his nurse no that I will do what I need to, without going to any other doctors telling me that there is nothing wrong by that time I had broken my foot, so I had to concentrate on my foot healing.

Later, Donna


Fecal Antigliadin IgA 21 (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA 13 Units (Normal Range <10 Units)

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

Fecal anti-casein (cow's milk) IgA antibody 12 Units (Normal Range <10 Units)

HLA-DQB1 Molecular analysis, Allele 1 0501

HLA-DQB1 Molecular analysis, Allele 2 0501

Serologic equivalent: HLA-DQ 1,1 (Subtype 5,5)

You can teach an old dog new tricks!!!

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Welcome to the forum and welcome to what I have been told is a great way to live, just starting myself, my thoughts are as follows....

First, Yes you will accidently gluten yourself for the first little bit, as with everything else it takes practice and patience.

Second, you are in a great forum with lots of helpful and supportive members, dont be afraid of asking a question, the only "stupid" question is the one not asked.

Third, Due to the nature of some aspects of what will be expirienced at the beginning try not to be embarrased when you need to discuss this. Those of us who have not gone thru the same things raise their hands, didnt think I would see any! :lol:

Fourth, OMG I loved the living gluten free for dummies book, by all means go get one! author is danna korn, found my copy in a health food store, you will absolutely LOVE the coffee cake recipe in it too!

Fifth, go slow and dont expect miricles in the first little bit, it took time to get this ill, it will take a shorter amount of time to get it all back to normal


Just my .00000002 cents worth

If I knew what I was doing years ago I would have half a clue today!

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Bettty

he also said that if I did have anything that he would want me to have IBS because you can control that with medicine,

Oooh, how annoying of that doctor to say that!! :ph34r:

You are quite right, because IBS is not a disease; it's a syndrome, which means it's a collection of symptoms. And those symptoms are identical to those of celiac. Usually, the doctor hasn't bothered to rule out celiac because they've been taught in medical school that it's a one in a million disease, and that the patient has to be wasting away to have it. Or, if they've ruled out celiac, they either misread the blood test, ordered a wheat allergy test instead of a celiac panel, or biopsied an undamaged patch of the intestine (there are 22 feet of intestine, and damage is often patchy).

Since IBS is not a disease, it can't be controlled with medicine. The symptoms can be masked, but that's not the same as controlling a disease, that's hiding the symptoms of a disease. As you obviously know, it makes no sense to hide the symptoms when you can eliminate the cause.

Of course, the pharmaceutical industry, who teaches the medical students and funds the doctors, makes no profit on eliminating the cause of a disease. They only make a profit from putting you on expensive medications. :ph34r:

Good for you for sticking to your guns!

Oh--about controlling insulin levels: my endocrinologist said at my last visit that she is now screening all new diabetic patients for celiac, as those who test positive can often control their insulin without medication if they stay off gluten.

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Fiddle-Faddle

Ya! Good of your Endocrinologist to understand something that we talk about here. :rolleyes:

Donna


Fecal Antigliadin IgA 21 (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA 13 Units (Normal Range <10 Units)

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

Fecal anti-casein (cow's milk) IgA antibody 12 Units (Normal Range <10 Units)

HLA-DQB1 Molecular analysis, Allele 1 0501

HLA-DQB1 Molecular analysis, Allele 2 0501

Serologic equivalent: HLA-DQ 1,1 (Subtype 5,5)

You can teach an old dog new tricks!!!

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Betty,

Hi Betty I live in the DFW area a good 4 to 5 hours away depending on how fast you drive and If you get stopped by the State Troopers :P I'm guilty of that.


Fecal Antigliadin IgA 21 (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA 13 Units (Normal Range <10 Units)

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

Fecal anti-casein (cow's milk) IgA antibody 12 Units (Normal Range <10 Units)

HLA-DQB1 Molecular analysis, Allele 1 0501

HLA-DQB1 Molecular analysis, Allele 2 0501

Serologic equivalent: HLA-DQ 1,1 (Subtype 5,5)

You can teach an old dog new tricks!!!

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hi and welcome, the people on this site are awsome and full of good info!! relax, take a deep breath and then dive in, you kinda figure it out and then it dosnt seem so bad. when you feel better it will be worth it, and you can still get cookies, and bread and all that stuff so your not missing out on as much as you would think.

GOOD LUCK :lol:


Nadine

mom of 4 great kids - 2 diagnosed with autism and 2 typical kids (thank goodness)

all this started after my hysterectomy in March of 2006

G.F. since Feb 2007

Soy free since April 2007

Blood work was negatvie (after 2 weeks of being on the gluten-free diet)

entrolab results:

Antigliadin 9 (normal <10)

HLA-DQB1 Allele 1 - 0302

HLA-DQB2 Allele 2 - 0502

HLA-DQ 3,1 (subtype 8,5)

carrying one celiac gene and one gluten intolerant gene

nurse at entrolab figures i caught this early and dont eat gluten anymore

life is like a box of chocolates;sometimes you get stuck with the yukky coconut fillet one

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I hear ya!!! At first I was just ticked. Then I wanted to find out all I could. And then I was decided this was teh best thiing that could've happened to me. I'm been carrying this baby weight(my son is 2) and now I'm forced to stick to a healthier diet!

Two things I recommend: Living Gluten Free for dummies...great info and funny!!!! Also Celiac Disease: A Hidden Epidemic by Dr. Peter Green. You can get both books toether at a cheap price on amazon .com

This site is a WEALTH of knowledge!!!! It gave me sanity back after I was diagnosed!!!!! It made me feel like I can actually do this!

Don't rush out and replace all gluten foods with the Gluten free version. Alot of the times they are more calories. I do more naturally gluten free foods ie: meats, veggies and fruit. I do have some gluten-free versions on hand incase I go through withdrawls!!!!LOL

Eating out is hard and I am still getting comfy with that! People with longer Dx's on this site can help more with that!!!

Good luck to you and welcome to the site!!!!!

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Thanks for your suggestions! I ordered the two books right away and am looking forward to reading them. Meanwhile, I'm becoming a better label reader.

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