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Did You Have A Dark Time Dealing With This?


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21 replies to this topic

#1 Newtoitall

 
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Posted 13 June 2011 - 09:29 AM

was there ever a time where you felt completely overwhelmed, for me this came at a horrible time, I haven't yet carved my way through life, I haven't found my path so to speak, and honestly am terrible at taking care of myself, I'm wise.. but extremely lazy lol

but sometimes it's just sooo frustrating, I believe at this moment in time I'm the only one in my family whos been diagnosed, if anyone else has it, it isn't bad and they don't care.

and my family loves to eat. Of course they all cook delicious meals and awesome baked goods.

So... for those days when you want to own a shotgun for nefarious reasons or perhaps go learn to fly.

What do you do to cheer yourself up?

how did you get through it, (I really wish I was fantastic at taking care of myself and had my own place) I'm working on that but as I said... how do you motivate yourself other then thee good ole, If your not dead your still going bit.

PS I keep wondering how a decent job is at all possible without being incredibly frustrating with this.. Condition.

is there any stories of someone who managed a Good job ? one they enjoy?

It just seems alot of the really happy people are moms..who are amazing at cooking or something to that effect.
and last time I checked, I cannot squeeze out teh babies nor do I want to =P

and I'm pretty sure I'm not destined to enjoy cooking >_> lol but who knows right.
  • 0

Gluten Free since Xmas 2010

 

Current Auto Immune Diseases:

 

Celiac Disease, Interstitial Cystitis, IBS, Dermatitis Herpetiformis, I'm playing life on Hard Mode.

 

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#2 Poppi

 
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Posted 13 June 2011 - 09:48 AM

Well, I am a mom and I love to cook so you're right, that makes day to day life much easier. I refuse to do without my favourite foods so I am slowly learning to remake them at home.

The frustration for me comes in other ways though. We had our children young and spread out. I'm 34 and my kids are 15, 6 and 2 and we have 2 Vietnamese girls who are living with us for a few years as well.

Once our kids are grown my husband and I plan to travel the world. I LOVE food so I had these big dreams of eating my way around the globe. Street food, local cuisine, breads, cakes, cookies, desserts... I wanted to eat everything I could get my hands on in every country we could possibly get ourselves to. We've been saving up a few dollars at a time for several years and have several more to go before we can start.

But now what? I can't eat street food in Thailand anymore? I can't blindly enjoy sushi in Japan with all the lovely soy sauce based toppings and dips, I can't eat Calamari in Greece or have a croissant in Paris. A lifelong dream down the toilet. It's devastating.

We will still travel but it will look very different. I'm sure it will still be amazing but it won't be the same.

I'm a silver lining person though so I try to remind myself that although I can't eat everything I want I now have the energy to do the things I always thought were beyond me. I can climb mountains, raft down rivers, hike through forests, surf in the worlds' beautiful oceans. My Celiac diagnosis has made my life better but it's not always easy to see that.
  • 1

Sara

Busy mom to 3 great kids (4, 8 and 18)

Gluten free since April 6, 2011 ~ Also sensitive to coconut, coffee and food dyes

Joint pain, mouth sores, back and neck pain, migraines, stomach pain, chronic fatigue, ADD and depression are all gone.
Wishing I had been diagnosed before celiac robbed me of the cartilage in my toes and the 3 babies we lost to miscarriages.


#3 txplowgirl

 
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Posted 13 June 2011 - 11:01 AM

I'm sorry you feel terrible, big ((((hugs)))) to you. Myself, I drive a big truck across this country of ours and having Fibromyalgia and other food intolerances has been somewhat frustrating. Ok, I fibbed, downright frustrating and often times miserable. There have been times i've had to pull off to the side of the road and cry or sometimes i've screamed my fool head off. But I know that everyday won't be this way. As for family memebers not willing or believe. Well, I have finally learned to just go my way and if somebody is curious and wants to ask questions then i'll help them. But you know the old saying. "You can lead a horse to water but you can't make himm drink."
You could still be going through some withdrawals. Try to be happy that you finally found what your problem is and be grateful for that. I know easier said than done, huh. :) Think of something that you enjoy and go do it. Go out and find you a quiet spot out in the country and yell your head off. Get it out of your system because you could be in a grieving process and not realize it. Then again you could be somewhat depressed which could be another reason you're not motivated. But setting there not doing anything but feeling bad for yourself isn't helping is it? Hang in there it will get better, just takes time.
  • 1

Lupus, Connective Tissue Disease with Fibro type symptoms, Anemia, Anxiety, Depression, RA, Rynauds Syndrome, Chronic Fatigue Syndrome, Erosive Gastritis, Osteoporosis, Degenerative Disc Disease, Scoliosis, Bulging discs in lower back and neck, Pinched Nerves.

 

Soy free, MSG free, mostly Dairy free. Endoscopy shows blunted Villi which dr states as gluten sensitivity, so goin back to being gluten free


#4 sahm-i-am

 
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Posted 13 June 2011 - 11:26 AM

I'm a mom and I HATED to cook. We ate out ALOT - healthy, but expensive. So now, I cook - still hate it, but it has to be done. And while I don't have a "job" I am homeschooling my two middle school daughters. I've been gluten free for 1 year and 2 months. Good days and bad. Nobody else in my family has been diagnosed, but that's because they don't want to get tested. They are in denial.
So, if I complain and moan about this sucky disease and how horrible it is, why in the world would they want to get tested? So, I try to make it seem like a no-brainer. And really, after a year, it is easier. Of course, there are still hurdles but I'm able to deal with them now. You are still new to this, still learning and coping and grieving and dealing. Allow yourself time to mourn the old lifestyle you had. Everyday will get easier and before you know you will look back and say "It's not that hard". My motto that got me through was "find your new normal". Everyone deals with issues - this is ours. I am sorry you are having to deal with Celiacs. I truly am. This is a great website - I used to visit everyday for support. Now my life isn't focused on this disease anymore so I rarely come here, but it was a great source of comfort.
  • 0
Diagnosed with Lymphoma March 2010. After surgery doctors said "Oops!"
Diagnosed with Celiac Disease April 2010. After endoscopy doc said "Aren't you glad?"
Uhhh.....yeah!
DD #1 ('99) tested negative on bloodwork but positive on 2 genetic markers. Went gluten free in July 2010 and has been symptom-free ever since!
DD #2 ('98) tested negative and has no symptoms. Didn't fork out money for genetic testing. Will watch and test regularly.
Husband tested positive in July 2010 and has refused to go gluten free. Uh huh, that's gonna bite him in the a** one day! (Pun intended!)

#5 Goof

 
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Posted 13 June 2011 - 11:36 AM

Hey New,
I'm much like you...do not like to cook. (I'm a 31 year old single guy. What do you expect? ;) ) But I am able to keep it simple when I do cook, and use a lot of fresh proteins, vegetables, fresh fruits. The food store I usually shop at is really good at labeling their store brand items with allergens (including gluten), so that has helped a lot, too! (George Foreman grill is great for cooking proteins if you're not inclined to cooking).
I have been able to hold down my job with this. I have a really great boss. When I went to her about my at the time unknown health issues, she did say that she said that she noticed I was losing weight, and was very understanding when I explained that I might be missing time either from feeling lousy or doctor's appointments. So if you currently have a job, see if you can sit down with your manager and explain what has been going on. Explain what you're doing to recover/take care of your health, and that your perfomance will be improving with it, though you may miss a day or two here and there. I have found that when you explain it in terms of why this is relevant to that person, and what the benefits for them are, they're more receptive to what you have to say. No guarantees, though, unfortunately. (I actually just had a one on one meeting with my manager a few weeks ago, and she said she thought of me when reading a newspaper article on celiac. She's been pretty cool about it all).
And absolutely, don't be afraid to treat yourself or do something you enjoy. It will help you feel better, because it will take your mind off how you're feeling. I find a good book, or picking up my guitar, is good for me.
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#6 notme!

 
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Posted 13 June 2011 - 11:44 AM

I'm sorry you feel terrible, big ((((hugs)))) to you. Myself, I drive a big truck across this country of ours and having Fibromyalgia and other food intolerances has been somewhat frustrating.


o gosh, how do you do it?? husband drives (16 in the air, 2 on the pavement lolol) and i used to go on the road with him. we would usually do sandwiches or whatever for breakfast/lunch, raid the truckstop (cheez crackers, snackies, etc, DONUTS) then stop at a truckstop restaurant for supper. husband has been running otr so long he knows which ones are decent and which ones to avoid. even so, we have ordered things and had the waitress screw up the order or have the food be downright disgusting. now, i am so afraid to go with him and he overcompensates (even on car trips) and deprives himself when i don't feel comfortable eating places. and our kids are grown now and that was our plan: for me to go with and see some stuff. visit some people. now, that is in the toilet (LOL couldn't resist) GOD love you txplowgirl, you just keep on trucking. he has a fridge and a nucrowave. doublebunk, standup sleeper. relatively new truck. right now he is on a dedicated and i have been there a few times (tn-mi-tn) but when he actually has to start running the board again, i am either never going to see him or have to suffer thru???? oy. he runs flatbed. well, conestoga - what are you hauling? are you an o/o? if so it's gotta be rough out there! anyway, i say an extra prayer for all truckers and their families every night. just so's you know... stay safe and well!
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arlene

misdiagnosed for 25 years!
just as i was getting my affairs in order to die of malnutrition...
gluten free 7/2010
blood test negative
celiac confirmed by endoscopy 9/2010

 

only YOU can prevent forest fires - smokey t. bear

 

have a nice day :)

Celiac.com - Celiac Disease Board Moderator


#7 notme!

 
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Posted 13 June 2011 - 11:47 AM

"find your new normal"


i am stealing that! :)
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arlene

misdiagnosed for 25 years!
just as i was getting my affairs in order to die of malnutrition...
gluten free 7/2010
blood test negative
celiac confirmed by endoscopy 9/2010

 

only YOU can prevent forest fires - smokey t. bear

 

have a nice day :)

Celiac.com - Celiac Disease Board Moderator


#8 love2travel

 
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Posted 13 June 2011 - 11:59 AM

When I was diagnosed with celiac disease I was shocked out of my mind (not expecting it - just a screening which led to biopsies). I had a tough couple of months mainly because one of my passions is food - another is travel and the two go hand in hand. I actually initially felt as though it was a death sentence as I was teaching culinary classes. You should see my vast library of culinary books! But after mourning, I just find I do things differently. Still teach cooking/baking classes - even more so now because I am in demand for the celiac folks in this area. So, that is a huge blessing!

I focus now on the things I CAN have and the things I CAN do. In fact, I find having celiac disease much easier than dealing with my severe chronic back pain (accident a few years ago plus fibromyalgia) and would give almost anything to live without horrible pain. It affects my life every moment of every day and night. But to instill a renewed sense of confidence, my husband and I recently went to our house in Croatia and spent some further time in Italy. Know what? It can be done! Just differently. Sure, it was painful strolling by the bakeries and not attending a few food fairs that were on, especially since we used to travel the world for exotic ingredients and fabulous meals.

My doctors were reluctant to permit me to travel because of my back (I am not to sit more than 15 minutes at a time) but on the other hand encouraged me to do something I so desperately wanted and needed to do. The flights were pretty much unbearable. I cried from unspeakable pain. But I still did it! If you are distracted from your "plight" you can focus on other things. That is why I am also volunteering a few hours here and there at a shelter for abused women and children. My focus was on me and I was off in my own little world - too much for my own good.

There is no way I could work more than about 10 hours per week - it is not physically possible. So, these cooking classes are just perfect for me! I also test recipes for a few US magazines and cookbook authors. And I do some home catering parties. But of course that allows me to choose my own hours.

My husband and I do not have children - I have had 3 miscarriages (now I know why!) but I still lead a happy and fulfilling life in spite of my pain. My faith allows me to find joy in things and gives me freedom and hope. I do not need to be controlled by my pain and celiac disease; in fact, I do not permit it. I am stronger than that!

Please remember that this funk is temporary - you will start having more and more good days than bad. Soon it will be just a normal part of your life. (At the same time, give yourself permission to grieve when you need to. It does happen from time to time!)

BTW, if you want to learn how to cook I believe you can do it. You can have fun experimenting and practicing in the kitchen. Often I have inspiring phone calls from students who tell me that since learning to cook they have grown passionate about it. It is possible!

You never know where this may lead. Perhaps it will help people in your future and that will be satisfying for you and them. :)
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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.

#9 txplowgirl

 
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Posted 13 June 2011 - 02:39 PM

o gosh, how do you do it?? husband drives (16 in the air, 2 on the pavement lolol) and i used to go on the road with him. we would usually do sandwiches or whatever for breakfast/lunch, raid the truckstop (cheez crackers, snackies, etc, DONUTS) then stop at a truckstop restaurant for supper. husband has been running otr so long he knows which ones are decent and which ones to avoid. even so, we have ordered things and had the waitress screw up the order or have the food be downright disgusting. now, i am so afraid to go with him and he overcompensates (even on car trips) and deprives himself when i don't feel comfortable eating places. and our kids are grown now and that was our plan: for me to go with and see some stuff. visit some people. now, that is in the toilet (LOL couldn't resist) GOD love you txplowgirl, you just keep on trucking. he has a fridge and a nucrowave. doublebunk, standup sleeper. relatively new truck. right now he is on a dedicated and i have been there a few times (tn-mi-tn) but when he actually has to start running the board again, i am either never going to see him or have to suffer thru???? oy. he runs flatbed. well, conestoga - what are you hauling? are you an o/o? if so it's gotta be rough out there! anyway, i say an extra prayer for all truckers and their families every night. just so's you know... stay safe and well!



Hi there! Well, I have a microwave and an electric skillet, with 2 plug in coolers I keep well stocked. I visit a walmart every few days and I keep a lot of fruits, nuts and vegetables on hand. I eat at truck stop restaurants occasionally but not real often. Have several waitresses whol run for the hills when they see me coming. :P
I drive for Prime inc out of Springfield, Mo. Leasing a truck at the moment thinking of buying one. Not for sure what i'll do. It can be a bit of a challenge at times. But where else can you get paid for taking vacations! :D :D I see a lot of beautiful country and sometimes even get to stop and do some sight seeing. That's what keeps me going. I absolutely love it.
There is no reason you can't ride with him. Just pack some things for you to eat, get an electric skillet, etc. Go inside the restaurant and order a steak and baked potato. Make sure they understand to clean the grill and no seasonings, no bread on the side, corn or a type of veggie that you like. That's what I do, no problem so far.
  • 1

Lupus, Connective Tissue Disease with Fibro type symptoms, Anemia, Anxiety, Depression, RA, Rynauds Syndrome, Chronic Fatigue Syndrome, Erosive Gastritis, Osteoporosis, Degenerative Disc Disease, Scoliosis, Bulging discs in lower back and neck, Pinched Nerves.

 

Soy free, MSG free, mostly Dairy free. Endoscopy shows blunted Villi which dr states as gluten sensitivity, so goin back to being gluten free


#10 sahm-i-am

 
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Posted 13 June 2011 - 03:48 PM

@txplowgirl - you make me want to drive a truck!:-)
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Diagnosed with Lymphoma March 2010. After surgery doctors said "Oops!"
Diagnosed with Celiac Disease April 2010. After endoscopy doc said "Aren't you glad?"
Uhhh.....yeah!
DD #1 ('99) tested negative on bloodwork but positive on 2 genetic markers. Went gluten free in July 2010 and has been symptom-free ever since!
DD #2 ('98) tested negative and has no symptoms. Didn't fork out money for genetic testing. Will watch and test regularly.
Husband tested positive in July 2010 and has refused to go gluten free. Uh huh, that's gonna bite him in the a** one day! (Pun intended!)

#11 glamorous

 
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Posted 13 June 2011 - 04:11 PM

I feel sorry for you!

But, sobbing in a corner certainly won't help you. Of course, I have (had) my moments as well, but overall, I'm trying to approach my condition as positive as possible.

At first, when I was diagnosed with celiac disease, I missed all the things I couldn't have anymore, so I was desperately trying to find replacements. But as you all know, gluten-free bread doesn't taste like 'real' bread, and it certainly doesn't cheer you up when you're feeling down!;)

So I try to embrace the foods I CAN have now. There are so many delicious things you can have, such as rice, potatoes, crisps, chocolate, fruit, vegetables etc. etc.

I must say the support of my family really helped me. I live on my own, but when I visit my parents, I can always be sure to have a delicious gluten free meal waiting for me. So my parent's house is a care-free zone for me:)

And I'm sure you will find a suitable job! Remember; you aren't ill, you're just intolerant/allergic to some foods! It isn't the end of the world, although it may seem that way now. Just talk to your (future) manager and explain your diet. I'm sure they will let you bring your own food after they hear about your gluten free diet.

so, stop worrying and start taking care of yourself. See this as an opportunity to explore the world of (gluten-free) food: there are so many thing out there which you can still eat!
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#12 sb2178

 
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Posted 13 June 2011 - 04:14 PM

1. go for a run.

2. eat chocolate.

3. consider the fact that i have a treatable autoimmune condition, as opposed to ending up with RA (like my cousin) or heart failure (like a young friend).

4. eat more chocolate.

5. remember that i looooove potatoes.

6. do something non-food related, like kayaking or spinning (yarn).

Minimizing dairy was actually harder than gluten.
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2/2010 Malabsorption becomes dramatically noticable
3/2010 Negative IgA EMA; negative IgA TTG
4/2010 Negative biopsy
5/2010 Elimination diet; symptoms begin to resolve on gluten-free diet round two (10 days)
5/2010 Diagnosed gluten sensitive based on weakly positive repeat IgA & IgG TTGs and dietary response; decline capsule endoscopy.

Now, what to do about my cookbook in progress? Make it gluten-free?

#13 sb2178

 
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Posted 13 June 2011 - 04:14 PM

^We can add call my mother and complain in there somewhere near the end.^
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2/2010 Malabsorption becomes dramatically noticable
3/2010 Negative IgA EMA; negative IgA TTG
4/2010 Negative biopsy
5/2010 Elimination diet; symptoms begin to resolve on gluten-free diet round two (10 days)
5/2010 Diagnosed gluten sensitive based on weakly positive repeat IgA & IgG TTGs and dietary response; decline capsule endoscopy.

Now, what to do about my cookbook in progress? Make it gluten-free?

#14 notme!

 
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Posted 13 June 2011 - 04:34 PM

Hi there! Well, I have a microwave and an electric skillet, with 2 plug in coolers I keep well stocked. I visit a walmart every few days and I keep a lot of fruits, nuts and vegetables on hand. I eat at truck stop restaurants occasionally but not real often. Have several waitresses whol run for the hills when they see me coming. :P
I drive for Prime inc out of Springfield, Mo. Leasing a truck at the moment thinking of buying one. Not for sure what i'll do. It can be a bit of a challenge at times. But where else can you get paid for taking vacations! :D :D I see a lot of beautiful country and sometimes even get to stop and do some sight seeing. That's what keeps me going. I absolutely love it.
There is no reason you can't ride with him. Just pack some things for you to eat, get an electric skillet, etc. Go inside the restaurant and order a steak and baked potato. Make sure they understand to clean the grill and no seasonings, no bread on the side, corn or a type of veggie that you like. That's what I do, no problem so far.


ha he is wanting a skillet anyway - he has a power inverter - so, yeah, nuke a baked potato, fry up some protien, oh and i have a rice steamer so hmmmm - i would be happy to skip some truckstop meals. guess i'll hafta save the chicken-fried steak to make at the house haha :)yeah, i love to go with him - looking into some northeast freight maybe go up and see the sibs. everybody hates to go up there so should get a decent rate. as long as we can get back out!! he drives for southeast logistics out of tuscaloosa, al. i'm actually still on the books as an agent for them, although i haven't been doing anything since i got sick. i've been in dispatch, your friendly neighborhood broker and just about everything in between. i say i can do everything but drive the truck (which i can haha forward) born and raised a trucking brat and so was he. go figure lol :D prime must be keeping you pretty busy for you to consider buying your own in this economy - are they intermodal? are you doing van or flat? (just got a text they are loading him now) we had our own for awhile, but with 4 kids! it killed us. i love days like last thursday when he needed brakes and a couple of things done, and, oh, 8 drive tires $3000.00 bill and he just signs his name.... ;) of course, it took them all day of his own time, but they treat us pretty well. good outfit. he has been there 10+ years :)

lol can you tell i miss trucking??!!
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arlene

misdiagnosed for 25 years!
just as i was getting my affairs in order to die of malnutrition...
gluten free 7/2010
blood test negative
celiac confirmed by endoscopy 9/2010

 

only YOU can prevent forest fires - smokey t. bear

 

have a nice day :)

Celiac.com - Celiac Disease Board Moderator


#15 ravenwoodglass

 
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Posted 14 June 2011 - 04:30 AM

I was diagnosed with Celiac and I have Heart Problems and I have other issues H pyloria that can not get rid of at all! I have a lot of questions but First is how do you deal with the swelling of the stomach all the time and diarrhea all the time and the joint pain and now they are checking me for lupus.
Also the doc. said that at times you have to be checked to see the damage of the sm. intestine.
They told me I have to eat Gluten Free (Expensive) and no species of Wheat no barley
Does anyone know or have a list of the foods I can eat or not eat. I am supposed to go to a nutritionist but the appointment has not been made.
They told me if left untreated it can cause all kinds of problems and that some of my health problems maybe related to this Celiac.

Help I have NO Clue about this disease



Welcome to the board. Here is a link to the home page where you can find a list of forbidden and allowed foods along with other information.
It does seem hard at first but it doesn't have to be expensive. Whole unprocessed foods like meats, veggies, fruits etc are the best to go with at first. It shouldn't be long before the bloating and D are over but do drop dairy at first as we can have problems with that until we heal. You will get the hang of things and it gets easier as you start to feel better.

http://www.celiac.com/
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)




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