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I Feel Like I Am Going To Die....:(


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#1 a84c72

 
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Posted 10 November 2012 - 02:40 PM

I was diagnosed in August via biopsy (total fluke....I went into for a colonoscopy and endo for reflux). I was floored when I was told about celiac disease. Though, for the past few years, I had been been vitamin D deficient and Iron deficient, so it makes sense.

It took nearly a month before I was able to attempt gluten-free...it was very overwhelming. I made it one week gluten-free and I had enough. I was so hungry that I just couldn't hack it.

That was maybe second week of October when I gave it up.

But, my "symptoms" seem to be getting worse and I don't know if this is related to gluten or not...thought I would run it by here.


Problem one: My sleep. This is probably my BIGGEST issue. When I sleep, I never get enough. EVER. Earlier this week, I had slept 16 of 24 hours. SIXTEEN. That is just not acceptable to me. I have an 8 year old and a five year old. :(

This is pretty common for me, though. I have a hard time getting to sleep at night but when I do, I never want to get up. I will drag out and take my kids to school......go back home and sleep until my husband calls to wake me up so I can pick them up. It's impacting every single thing of my life. I don't go anywhere, anymore....I don't even have energy to grocery shop!



Problem two (amongst numerous): I HURT. I can't decide if my leg symptomatic of restless leg or of a siatic nerve, but I need weight on it at night to make it stop feeling weird. On top of that, it is not uncommon for my hands/fingers to be STIFF. My arms (upper arms) will be sore, joints stiff...... my blood tests for rheumatoid issues came back negative (but so did the tests for celiac via blood tests).


Problem 3: dizzy/"out of it"/zombied........ this doesn't happen as frequently, but my aura is just indescribable. today, I was out with my mother and I just had to leave where we were. My head felt funny and it was almost a derealization feeling. My legs felt like they were going to give out underneath me at any moment...they were weak and I just wanted to die.......it's THAT bad.


SO........is this typical of Celiac Disease or are there other things going on? I have got to get to the bottom of this because I am THAT debilitated by all of this....and my kids are suffering. I am missing out on so much.

For the record...I've been gluten-free (again) for two days...but I am eating one meal a day because that is all I can really do given my lack of energy to prepare/shop/etc.


Thanks in advance for any insight:)
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#2 IrishHeart

 
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Posted 10 November 2012 - 02:58 PM

You just do not seem to understand that you have Celiac Disease---- and the only treatment for it is a gluten free diet. You are debilitated because you are not doing what needs to be done to heal the villi in your intestines.

You feel like you are going to die because you KEEP EATING GLUTEN. You need to be strictly gluten free--for the rest of your life.

You need to read about Celiac and understand that as long as you keep consuming gluten---you will never feel better. (And you very well may die).

This is a serious autoimmune disease hon, and it's time to come to grips with your diagnosis. Going gluten free is not optional.

Did you read anything about this disease you are dealing with---because from the sound of it, you haven't.

please read Celiac Disease:the Hidden Epidemic by Dr. Peter Green.

and please read this:

http://www.celiac.co...ewbie-info-101/

You say you are hungry because "there is nothing to eat" but that is simply not true.
You are not looking at food the right way.
It's not about what we cannot have--it's about what we can have! I am not hungry at all.

I know you feel overwhelmed, but it's time to get serious, dump the gluten and get healing.

And I say this all the compassion there is--you need to commit to this right now and save your own life.
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

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"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#3 GottaSki

 
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Posted 10 November 2012 - 03:04 PM

This might seem harsh - please understand I am not trying to be so.

You have Celiac Disease. If you consume any gluten, the symptoms you have will worsen and many more will join them. I have no doubt you feel bad now, but it can get much worse and likely will if you don't remove ALL sources of gluten.

For now simplify - eating one meal a day is not going to improve your health. Try eating small things throughout the day. Stick to whole foods, nothing processed and you will get better, but it does take time.

Keep it simple for now -
Eggs scrambled right in the pan with a handful of spinach, asparugus or zucchini thrown in for breakfast
Handful of nuts or a piece of fruit for snacking several times a day
Soup or salad for lunch
More munching on nuts, fruit or carrots during the afternoon.
Baked chicken, rice and a veggie for dinner
Drink LOTS of water

Take some time to learn how to eat gluten free - think about shopping from the perimeter of the grocery store - where all the whole, naturally gluten-free foods are kept - no processed foods to start.

As you start to feel better you will have the energy to shop and prepare wonderful gluten-free meals, but for now keep it simple.

Hang in there - I hope you start to feel better very soon - but understand it took quite awhile for your body to get to this state - it may take time to heal.
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#4 ravenwoodglass

 
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Posted 10 November 2012 - 03:53 PM

I am sorry you are having such a hard time with your diagnosis. You feel like you are dieing because you are continueing to poison yourself. You have children. They need you and need you to be healthy. As hard as it is on you it is just as hard on them to see you in the condition you are in. I wasn't diagnosed when my kids were young. They grew up watching their mother die slowly. It is not something any child should have to go through. Please get back on the diet. If you can't do it for yourself do it for them and their father. It is hard but you can do it. Read as much here as you can and we will help you in any way we can.
Go with simple easy to cook meals at first. Steak or ground beef and potatoes. A fresh chicken rubbed with salt and butter and tossed in the oven with some baked potatoes or rice. gluten-free soups over rice. Dinty Moore beef stew with some peas or green beans tossed in while it heats. Those are just a few examples of easy to fix meals that are gluten free. There are many more of course. Do check out the recipe section of the board for more ideas.
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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)

#5 SMDBill

 
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Posted 10 November 2012 - 04:45 PM

Harsh reality is you have a debilitating disease if left untreated and you are allowing it to win. The simple answer is it's just food. Period. Eat the right stuff and feel better or continue on that path to worse health, possibly cancerous later. And it does NOT have to be expensive. I eat fruit, nuts and some candy (M&M's for a small snack) every day during the day instead of big meals. It's portable and just makes the day easy. I eat throughout the day that way. You can have many cereals for breakfast, eggs, bacon, sausage, gluten-free pancakes, fruit. For lunch, deli meats (not processed) but there are also processed that are gluten-free (Carl Budding I believe is one), gluten-free bread (Udi's white is good!) but it's a bit expensive, potato chips (Lay's is gluten-free and I think Frito's are too), leftovers from dinner, salad with gluten-free dressing (tons of them are naturally gluten-free), peanut butters (many are gluten-free naturally), jelly. For dinners any meat is fine, fish, chicken, shrimp, lobster, and on and on. Every vegetable is ok that I can think of. Apple sauce, gluten-free noodles from Target or other stores for spaghetti, spaghetti sauces are usually gluten-free, and the list just keeps going. Tons of candy bars are already gluten-free.

Don't fall for the gluten free hype. Many foods just don't have it anyway. Those that do often have easy alternatives. But yes, you do have to give up some foods. No alternative to that and if you don't, especially long term, you could lose your life to food. Why gamble? Why pay that price and stay bedridden all day? Why let the kids and hubby suffer because you aren't doing what you need to do to manage YOUR disease? They can help. Let them. Teach them and teach yourself. Take the bull by the horns, take charge of your body and your diet, and make the changes. Make them your teammates to stand guard when you have to eat out or shop for food. You need their support and they need you. Be a family and get everyone on board with you.

I hope you can fix this. Right now it's a mess and nobody deserves it to be that way, including husband and family. You owe yourself better than continuing to eat foods that are poisonous to your body. It's not that difficult to protect yourself and let your body heal, but failing to put it all into trying is just setting yourself up for far worse problems later when your body turns on you and deteriorates to its end. Many prayers for your recovery.
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#6 Adalaide

 
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Posted 10 November 2012 - 04:48 PM

My diagnosis was a surprise as well. I had my gallbladder out and the following day had to have an endoscopy to remove a stone that was stuck. I didn't even know a biopsy had been done. A week after I was released from the hospital I got a phone call saying they had my biopsy results. Biopsy? What? Cancer? I'm dying? No no, they assured me, it's just celiac. Oh... what a relief. Then I found out what celiac is. I cried, sobbed like a child. I made bargains with God. I wondered if cancer wouldn't be better, then they could just cut it out and I'd be better. Give up wheat? IT IS IN EVERYTHING!!!!! This is too hard, I thought. I can't do this, I thought. This was a Friday. Monday I saw my doctor. I spent all the time in between doing research. By that afternoon I was so exhausted I couldn't think straight. My birthday was that Wednesday, I went out with a bang. Friday I was gluten free. I have not intentionally consumed a single gluten molecule since January 6 of this year.

Why did I share this? Because I know exactly what a "SURPRISE!!! You have celiac." diagnosis feels like. Especially when you didn't even know what celiac was before. I know how emotionally hard it is. And I'm going to verbally give you the kick in the pants you need.

Problem one? I suffered from insomnia and extreme fatigue. I would never be able to fall asleep unless I was so exhausted I was ready to fall over. Then I would sleep for 16 to 20 hours a day for days at a time. This has not resolved yet, but is so much better. I now get up and stay awake for whole days. I still have trouble falling asleep. I push through when it is rough with caffeine. But for the first time in years I am at a point where I can carry on a normal life. Leave my house. Have hobbies. Just feel like a person again. These are both symptoms of untreated celiac.

Problem two? Many here, myself included have been diagnosed with fibromyalgia. We hurt. There is no explanation. We are simply in pain, every moment, every day. This has improved gluten free. I am not 100% better, but it is bearable now. It was not before. This is a symptom of untreated celiac.

Problem three? I never discussed with anyone how I felt disconnected from the world. How I felt slightly out of phase. Like everything was sort of surreal. I didn't want to end up in the loony bin. This is gluten head, another symptom of untreated celiac. This has completely resolved gluten free.

Check out the newbie thread, there is a lot of good info there to help you get started. But you HAVE TO get started. Your children deserve a mother and right now they don't have one. People die of celiac. Not the dozens of other autoimmune diseases you can get by not going gluten free. Just the celiac itself. Your children may also have celiac. If you don't get it together now, you'll never be able to help them if/when they are diagnosed.

I'm very sorry to be so harsh, but you've sulked for three months. Your life is on the line. It's time to step up. (((hugs))) We're here for you. It is hard, but it gets easier. After eleven months I don't consider myself different, deprived or weird. Being diagnosed as celiac is the best thing that ever happened to me. It gave me my life back.
  • 1

"You don't look sick or anything"

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CRPS DX March 2014


#7 MitziG

 
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Posted 10 November 2012 - 05:04 PM

What you are feeling is EXACTLY what celiac feels like- though some get the bonus of constant diarrhea and vomiting too. I was like you, I slept, and slept, and slept, and yet never felt anything but exhausted. I only got off the couch when I absolutely had to, and I missed out on the majority of my childrens' childhood because of it. I ached constantly, and felt drugged always. Someone on here described it as having vaseline behind their eyelids- I couldn't explain it better!

The good news is, all of that WILL go away on the gluten free diet.

The bad news is, you HAVE to do the diet, 100%, all the time, no cheating, ever, or far worse things WILL happen to you. If you think you feel bad now, wait until you have ataxia and lose your motor coordination and ability to walk. Wait until you develop artritis, and the pain is so bad you want to die. Wait until you have to have your intestines resected becaUse of bowel cancer, and you poop in a bag the rest of your life. Those are just a few of the realities of untreated celiac- there are many many more.

None of us here want this. But we have learned to adjust, and the longer you are gluten free, the better you will feel, and the more energy you will have to cook. Its a tough road in the beginning, and very overwhelming.

But it isn't one you can just refuse to walk down. You have children who need you alive and well. And who also need to be tested, celiac is genetic. Even if they have no symptoms, they need testing every 3 years. Both my kids also have celiac, and it is pretty common to have several in the family affected.

So take a deep breath, say a prayer to accept this, because its a done deal. And then start your life over, tomorrow. I promise, a year from now, you will hardly believe you went through life feeling so lousy!
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#8 captaincrab55

 
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Posted 10 November 2012 - 05:07 PM

One needs to take the GREAT Advice above. One also needs to start watching for signs of Celiac or other Gluten related issues with your 8 & 5 year olds.
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I'm a New Man Without GLUTEN!

#9 SillyBoo

 
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Posted 10 November 2012 - 05:18 PM

While I totally agree with the other responses about needing to take your celiac diagnosis seriously, I would like to add another perspective on how to move forward: Dealing with Celiac requires a change of mindset. As awful as it seems right now, you are fortunate to have discovered the cause of your misery. And you have the incredible blessing of having an illness that can be managed by eating right - no surgery, chemo, or other nasty pharmaceuticals.

When you can embrace these positives, the practical tasks of selecting and preparing healing foods becomes much easier. Keeping it simple as you start out will help with both food preparation and your healing. As you start to feel better, you can explore more food options. Over time, this truly will get easier. Hang in there.

Good luck!
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#10 shadowicewolf

 
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Posted 10 November 2012 - 05:33 PM

Dear, you cannot cheat or stop the diet at all. You are opening yourself up to a whole risk factor of other things (such as but not limited too cancer, permanent damage to the vili, etc).

There is no cheating.

What you experienced before was a gluten withdrawl. We have all went through it (i have no doubt i was a little bit of a brat during mine, whining and crying for it).

Furthermore, you have two children who need to be checked. Celiac is a genetic disease.
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#11 GFinDC

 
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Posted 10 November 2012 - 06:20 PM

Hi,

Your symptoms and more can be caused by celiac. It doesn't go away. The autoimmune reactions can last 2 weeks or more every time you have a little bit of gluten. That is two weeks of continual damage to your gut. The damage to your gut (villi destruction) causes malabsorbtion of nutrients inlcuding vitamins and minerals. Without the vitamins and minerals your body needs it can't heal properly. Children with celiac can be short and skinny but have a large stomach from digestive issues. They also may have trouble at school and paying attention.

Some people have an actual withdrawal reaction to eliminating lguten. That doesn't last very long and can pass after a week or two. You may have that reaction or may not.

Eating is a habit for many people. A habit that can be changed. Once you get used to eating different foods, the gluten-free diet is not hard to follow. But starting off can be confusing and frustrating, Confusing because you aren't sure what is safe to eat. And frustrating becasue yuo have to learn new foods to eat and possibly new ways of cooking. Sometimes it may seem like there is nothing you can eat, but that is not correct. There are many foods that celiacs can eat. After you have learned to eat those other foods (many of which are things you ate for years) you won't miss the gluteny foods all the time. Adn teh gluten-free diet is not a weight loss diet, it is a medical diet. You can eat as much of the gluten-free foods as you want, there is no need to be hungry. You may have cravings at first, and those may be due to gluten withdrawal or vitamin deficiencies. Your doctor should test you for vitamin dificiences so you know what kind of supplements you may need.

Here is some ilght reading for you to help fill your mind with all things gluten-free. :D The meal idea threads can help with deciding what is ok to eat. We tend to talk a lot about what to eat on the forum. :)

Don't worry about being perfect at the gluten-free diet right away, but spend some time reading the threads and FAQ info here. Check out the threads on breakfast ideas or dinner ideas or even snack ideas (if that kind of thing appeals to you). :) There even threads on safe candy for Halloween and other holidays. And a recipe area for lots of great things to eat.

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.
Get your vitamin/mineral levels tested also.
Don't eat in restaurants
Eat only whole foods not processed foods.
Eat only food you cook yourself, think simple foods, not gourmet meals.
Take probiotics.
Take gluten-free vitamins.
Take digestive enzymes.
Avoid dairy.
Avoid sugars and starchy foods.
Avoid alcohol.


FAQ Celiac com
http://www.celiac.co...celiac-disease/

Newbie Info 101
http://www.celiac.co...ewbie-info-101/

What's For Breakfast Today?
http://www.celiac.co...reakfast-today/

What Did You Have For Lunch Today?
http://www.celiac.co...or-lunch-today/

What Are You Cooking Tonight?
http://www.celiac.co...ooking-tonight/

Dessert thread
http://www.celiac.co...399#entry802399

Easy yummy bread in minutes
http://www.celiac.co...ead-in-minutes/

How bad is cheating?
http://www.celiac.co...t-periodically/

Short temper thread
http://www.celiac.co...per-depression/

Non celiac wheat sensitivity article
http://www.celiac.co...ists/Page1.html
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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#12 a84c72

 
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Posted 10 November 2012 - 08:04 PM

Yes...I have read so much about Celiac disease. I know it included fatigue, but not aware of the AMOUNT of sleep that would fall into this.

Our lifestyle is a bit strange and I know I have to find a way to change it NOW. Because I am exhausted all of the time and my husband works 40 hours a week and tries to make up at home what I can't do, we do quick stuff..be it very simple shake and bake meals, etc.....I don't even know if I could hack following a recipe at this point in time. We are very strapped for cash being a one-income household. My husband's income dropped when the economy started going into the can...he lost many incentives and bonus opportunities.

I was in Whole Foods Thursday (it is an hour away from us...we don't have one where I am) and I was in awe at all fo the options, HOWEVER, there is no way I could spend $5 for a loaf of bread....or 2.50 for a can of soup......$4 for a microwave meal...etc.

The other option for shopping where I am in Meijer. And Meijer as many things, but they are just as expensive.

I puchased these crackers once made by Diamond thinking they have to be good...it's a company that's known! WRONG. They were hard and horrible and they weren't cheap. SO....that is another thing I face: how do I know what is good and what isn't? Very hard to drop the extra money on the unknown:(

My family isn't gluten free. There are no separate toasters.....dishes.....and I will be straight out and honest: I cannot buy new pots and pans and dishes. A $10 toaster I could probably swing...but not pots and pans.

But, perhaps the biggest obstacle is getting the energy to going to the grocery store PERIOD. Even when I do get up, I have no energy to go to do the store. I rarely leave the house unless it is to take the kids to school or pick them up. I don't even do any of my crafts, anymore. I don't see my friends....and it's depressing me.

I'm not looking to make excuses because,
As I said, I've been gluten free for 2 days now..mainly doing "gluten-free" ordering out from restaurants. So far, I've had no major symptoms like I've had (Gut burning, diarrhea, etc). I am just trying to figure out HOW to do this based on the circumstances given. How do I do this when I am sleeping so much and in pain...at least until I can overcome many of these symptoms?

I am downright scared. I truly am. I miss my kids and they are starting to prefer their dad over me (I've noticed the excessive tiredness for over a year and it's gotten worse since September).

I really do appreciate the input. Without it, I'd be lost!
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#13 1desperateladysaved

 
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Posted 10 November 2012 - 08:05 PM

Here is the dilemma: You need to feel better to get going, and you need to get going in order to feel better.

Oh dear, do you have anyone that can come in and support you during this time? Well, if you don't, I imagine that you are like most of us that just have to muddle through. . Meal by meal you can get it done. Your children are old enough to help some. My 6 year old learned how to cook when I would lay on the counter and tell her what to do. I would probably never have taught her to cook if it weren't for this. Concentrate on children care and meals as you recooperate. Someday when you are feeling more energetic again you can do something extra.

I find poached eggs are easy for breakfast. Heat water to boiling and turn heat down to Medium. Toss in eggs. Cook about 5 minutes while busy in the kitchen. They are quick and easy and have the protein your body needs. I combine mine with a muffin or pancake made with almond, buckwheat, or coconut flour. I spread good fat like coconut oil, or butter on it. Fat gives you energy and you need it.

I use to fall asleep between my children's spelling words, but I don't anymore. Hang in there and fight hard. I often feel my worse when a new high is just a head. One never knows.

Here are some get well flowers. *** I want to send flowers to celiacs.

Diana
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#14 a84c72

 
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Posted 10 November 2012 - 08:14 PM

I posted something just a bit ago and it doesn't seem to have gone through?? GRRR! Frustrating.
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#15 GottaSki

 
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Posted 10 November 2012 - 08:23 PM

I posted something just a bit ago and it doesn't seem to have gone through?? GRRR! Frustrating.


All new members have their first 10 posts approved in order to protect us all from spam.

Hang in there :)
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)





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