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Confused And Nervous


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#1 hspichke

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Posted 02 January 2012 - 10:09 AM

I haven't been formally diagnosed with Celiac but my entire celiac panel was positive, the Dr just said he can't formally diagnose without a endoscopy. This brings my first huge worry. I HATE being put under and am completely terrified of it. Even thought I know that this is a routine easy procedure I am scared of being put under. I just wonder if it is really necessary since every blood test I've had is positive.

I have been sick for about 5 years and been fighting Dr after Dr for a diagnosis so there is a sense of relief now that I know what is wrong with me. I just got my celiac folder from my Dr and I didn't realize how intense the gluten free diet is. It seems so overwhelming to go grocery shopping and make meals. I'm sure it takes getting used to but I just almost want to cry. My boyfriend is not gluten free so I also don't know how to deal with cooking meals and all that. My son has had major stomach issues but his tests didn't show much, however, I am going to have him to gluten free too to see if it helps.

Sorry this post was all over the place lol, I haven't slept much!
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Asthma, Hyperthyroidism (After childbirth), Endometriosis, Migraines with aura, Antiphospholipid Antibody Syndrome, Celiac Disease.

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#2 Roda

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Posted 02 January 2012 - 10:20 AM

Personally it is up to you to decide if you want the scope or not. With positive blood work it is pretty conclusive you have celiac. I did want the scope to not only biopsy for celiac, but to look for other potential issues as well. My youngest son only had a positive IgA tTG and I chose not to have him undergo a scope/biopsy but he was only 5 at the time. We did regret not doing it at the start, so after 4 months we decided to do a gluten challenge. He had such a bad/strong reation upon gluten reintroduction that we called it quits after three days. There was no way he, or the rest of the family, could have made it three months. So if you are going to do the scope, now would be the time to do it before you go gluten free. Many, like my son, just can't complete a challenge. Make sure your GI takes at least 8-11 biopsy samples from different spots in the small bowel. This will give you the best chance of a positive biopsy. However, it's not uncommon to have a negative biopsy due to not sampling the proper spot(damage is not visible to the naked eye and can be patchy), not taking enough samples or not having enough damage to show. Despite what your biopsy says, I would go gluten free as soon as it is over and not look back!
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Me:
Celiac disease(positive blood work/biopsy- 10/2008), gluten free oat intolerent, Hashimoto's Thyroiditis/Disease, Raynaud's Disease


DS2(age 9):
celiac disease(positive IgA tTG, no biopsy- 11/2010)


DS1(age 13):
repeated negative bloodwork and negative EGD/biopsy. Started on a gluten free trial(8/2011). He has decided to stay gluten free due to all of the improvements he has experienced on the diet.


#3 Debbie48

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Posted 02 January 2012 - 10:25 AM

Bless your heart! I hope you begin feeling better soon.

I understand the fear of been put under, but please believe me when I say that part of the Endo was a piece of cake. I didn't like having to do without water for so long since I have severe dry mouth issues from another autoimmune disease.

As far as the procedure itself, I went under very peacefully and I woke up as if no time had passed at all.

Please do not worry about it should you decide to do the procedure.

Wishing you the best!

Debbie
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#4 AVR1962

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Posted 02 January 2012 - 12:17 PM

The "gold standard" for diagnosis is the endoscopy and that is completely up to you if you want to go that far. What I can say is that without the scope, like in my case, I did get a "careful" diagnosis, my doc had to word it differently and that has lead to some questioning by other docs that this was really what is wrong with me. Good thing is you have a blood test which should be able to back up your symtoms and be able to help any doc relate problems to celiac.
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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.

#5 Googles

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Posted 02 January 2012 - 04:18 PM

If you want to do the biopsy, do it now. If you doctor will give you the dx without it, then you don't necessarily need to do it. However, if you want to have accommodations you will need the dx. When I got my endoscopy everyone told me that I would not remember the procedure at all. I remember the whole thing. I could feel weird sensations when they took the biopsies (kind of like a pinch-pressure). But no pain. If you are scared about being put out you might be able to talk to the GI about how much medicine they took. My GI didn't believe that I could feel what was going on until I told her when she was taking the biopsies (that might have been during the colonoscopy that happened at the same time). So being all the way out for the endoscopy isn't necessary, if your doctor is willing to work with you about it. They didn't intend for me to be aware, but it ended up happening.
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#6 mushroom

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Posted 02 January 2012 - 04:51 PM

Are you aware that you are not under anesthesia when they do an endoscopy? They actually give you a sedative, and also a medication that makes you forget the whole procedure, so that when the sedative wears off you remember nothing. In googles' case, she obviously needed a higher dose of the sedative than they normally give, so if they start the procedure, and you are aware of it, you can ask for a higher dose. I am one of those who need the higher dose too. You are not "out" or "under" - you are just in la-la land so to speak, and you do not have the post-anesthesia recovery period. Just wanted to make sure you were aware of that.

As for having the endoscopy, it is entirely up to you. I personally haven't even had any blood testing because I went gluten free long before I was aware of celiac and its testing procedures. It matters not to me not knowing if I am celiac or non-celiac gluten intolerant because I would be living the same either way. And I don't care what doctors think of my self-diagnosis. I have actually found that many doctors will question any diagnosis they didn't make themselves :o -- I had one doctor, while looking at x-rays of my foot and reports from a radiologist and other doctors about my fracture, write in his report that "she apparently" suffered a fracture of...... :blink: Well, with my x-rays, etc., his opinion didn't matter, and with your positive bloodwork across the board I don't think the opinions of other doctors will matter too much either. Just my perspective.
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"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

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(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

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#7 clohmean

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Posted 02 January 2012 - 05:18 PM

I, too, just had an endoscopy to confirm Celiacs. My blood panel actually came back as negative and the Dr. didn't think I had Celiac's. There was one exception though...my TTG IGG came back positive and that's what prompted the GI Dr. to perform an endoscopy. I was really bummed when he called me to tell me I had Celiac's, as I don't really have any symptoms, except low deficiency anemia and fatigue. I guess this explains my brain fog too though. Any rate..don't worry about the endoscopy. I didn't feel a thing. They gave me a twilight sedative and 20 minutes later I was all done. I think the hardest part was not being able to drink a cup of coffee that morning :) Good luck to you and hope you find your answers.
C
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#8 hspichke

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Posted 02 January 2012 - 05:29 PM

I had NO idea that they didn't put you under anesthesia. My son has had two this yr and they put him under and I guess I assumed it would be the same thing. Now that I know that I am not as afraid. I will definitely have to talk to my Dr a little further about it, but it was mainly the getting put under thing that I was afraid of. Thanks
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Asthma, Hyperthyroidism (After childbirth), Endometriosis, Migraines with aura, Antiphospholipid Antibody Syndrome, Celiac Disease.

#9 Monklady123

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Posted 02 January 2012 - 05:48 PM

I can't comment on the endoscopy because I haven't had one. I refuse to do a gluten challenge when I know how awful I feel when I'm glutened by just a little bit.

But about the diet -- it is overwhelming, and it isn't. If you think about it every single food item is naturally gluten free except for wheat, barley, and rye. And oats often. But everything else is okay -- all meat, dairy, nuts, vegetables, fruit, all other grains, beans... all gluten free. So if you cut out processed food as much as possible, and read the labels on everything, you'll be fine. Once you get used to it and learn what brands of things like sauces are gluten free -- soy sauce, for instance -- and stock only those in your house you'll see that it isn't that hard.

Going out to eat is a different challenge, but after awhile that will be easier also.

And there are some decent substitutes for our favorite things. Like the Kinnickinnick (sp?) pizza crusts that I've just discovered. I had a lovely pizza for dinner. :) No, they're not an exact replica of gluteny crust. But after you've been off gluten for awhile the taste/texture starts to fade and the substitutes begin to seem good. Just don't try any mainline bread other than Udi's or Rudi's. :ph34r:
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#10 IrishHeart

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Posted 02 January 2012 - 06:26 PM

I just got my celiac folder from my Dr and I didn't realize how intense the gluten free diet is. It seems so overwhelming to go grocery shopping and make meals. I'm sure it takes getting used to but I just almost want to cry.



Maybe this will help?? I compiled it for my family (and a friend with gluten intolerance) after I was DXed and figured out this stuff myself--with help from this site and lots of research. You can do this! :) Is your printer ready??? :lol:


For basic info:
http://celiacdisease...iacsymptoms.htm

http://www.celiacdisease.net/symptoms

Dietary concerns –LISTS OF safe and unsafe gluten free foods:

http://www.celiac.co...ents/Page1.html

http://www.celiac.co...ents/Page1.html

Good books:
Living Gluten free for Dummies by Danna Korn
Celiac Disease: the First Year by Jules Dowler Shepard

A quick “get-started” menu for gluten-free eating follows:

FLUIDS: Drink 1/2 your body weight daily in filtered H2O every day. A must! Celiacs are dehydrated from malabsorption. Plus, it helps cleanse toxins from body tissues and organs and keep the bowels running smoothly. Gluten is an invasive toxin.
AVOID too many sugary sodas at first--they wreak havoc on the gut.
AVOID DAIRY for a few months if you can. Lactase, which is the enzyme that breaks down the sugar lactose, is produced in the tips of the villi. When the villi get blunted in celiac disease, sometimes the ability to digest lactose is decreased and you can become “lactose intolerant.” This may cause bloating, stomach cramps, diarrhea, etc. After you go gluten-free, the villi will heal and most people are able to tolerate dairy foods again.
PROBIOTICS are a must. A good one is CULTURELLE.
Celiacs' leaky guts have an unbalanced amount of gut flora.
IBS /“Irritable Bowel Syndrome” is not a diagnosis but a list of symptoms affecting the large intestine. We joke that it stands for the doctors really thinking “I Be Stumped “.:)
All the digestive issues like acid reflux and heartburn, excess gas, camping, diarrhea and constipation will likely disappear or diminish on a gluten free diet.
SUGAR--too much makes me hyper, so I use stevia, honey, pure maple syrup (not Bottled pancake syrup—they contain gluten!)
Earth balance soy-free is a good choice if you cannot have butter. You need some good essential fatty acids: Safflower oil, sunflower oil, olive oil, coconut oil.

Many people choose to avoid packaged foods at first (I did, too because I had a severely inflamed GI tract --and I eat minimal processed foods), but for convenience, I have listed a few brands people seem to like on here


Check the labels of all packaged products-- if they were made with wheat or malt gluten, they will state so on the package.


WATCH OUT FOR Hidden sources of gluten:
http://www.practical...wiakArticle.pdf


Breakfasts:
Erewhon crispy brown rice cereal or gluten-free Kellogg's RICE KRISPIES, gluten-free CHEX corn or gluten-free CHEX Rice cereal, gluten-free CHEX honey-nut or gluten-free CHEX Cinnamon
Add: rice milk, almond milk or coconut milk and add berries or sliced banana.
CERTIFIED gluten -free oatmeal w/cinnamon (glutenfreeda brand, Bob's Red Mill )
Eggs and bacon or sausage with gluten-free toast or bagel (Kinnikinnick, Udi's or homemade)
Cream of buckwheat --it's good!! (no worries--Buckwheat is not from the wheat family)
Amaranth pancakes w/pure maple syrup (bottled syrups can contain gluten)
gluten-free packaged pancake/waffle mixes (Pamela's brand is very good as is Bob's Red Mill –we use BRM on thei site, for short)
Van's frozen waffles.

FRUITS and VEGGIES—eat plenty of these.

Snack ideas that are safe and handy :)

Cozy Shack Rice Pudding cups (in the dairy section)
All natural applesauce cups
gluten-free cookies  or muffins (Bake them or buy them.)
Pamela's Baking Mix is versatile and good for cookies, baked goods.
Bagel with cream cheese and jam . Udi's are pretty good (frozen section)
Pamela's makes a very good brownie mix too!
Chobani Yogurt
Lundberg rice cakes or sliced apples and celery sticks with natural peanut butter smeared on
Glutino crackers with cheese or peanut butter
BOAR's Head brand pepperoni, salami, all their cold cuts and cheeses
Planter's peanuts, almonds, cashews.
SUNMAID raisins, prunes. Craisins by Ocean Spray. (some raisins and dried fruits are dusted with flour to keep them from sticking but these brands are safe.)
smoothies- made with coconut milk, fruit, yogurt, etc
Potato chips----like Cape Cod or Kettle Brand or Utz

Glutino brand pretzels—they come in all flavors even chocolate -coated
Coconut milk ice cream (Turtle Mountain So Decadent brand is very good)
Ice Cream, if dairy is not a problem for you.
Organic Corn chips w/salsa, hummus, or Guacamole
Sunflower , pumpkin or flaxseeds
Candy—Hershey's kisses or bars, regular size Reese's cups, Snickers, York peppermint patty, Butterfinger and M &Ms plain and peanut. Ghirardelli squares--but not the one with the cookie in it. :angry:
Make some Chex mix with gluten-free chex cereals
gluten-free Rice Krispies treats (recipes are online)


LUNCH and DINNER:
Leftovers from last night's dinner make an easy lunch
Some Progresso soups are gluten-free. Check the label!
A sandwich with gluten free bread or rolls—UDIs, Schar's and Canyon Bakehouse are decent packaged breads, rolls and bagels, but homemade is the way to go.
I have a simple recipe for white sandwich bread that is delicious if you want it. Just PM me.
A big salad with tons of veggies and grilled chicken or shrimp and Hard-boiled eggs/ with gluten-free or homemade vinegrette dressing. A list of gluten free salad dressings is available online. Marzettis, and most of WishBone and Ken's are okay.
Homemade vegetable minestrone ,chicken soup, stews, black bean or white bean chili (gluten-free stock)
chicken or bean nachos (can use corn tortillas)
red beans and rice
almost all mexican food is safe (just no flour tortillas!)
pasta and sauce w/meatballs (brown rice or corn pasta TINKYADA BRAND rice pasta is delicious! Cook 13 minutes exactly) and use gluten-free breadcrumbs (just crumble some gluten-free bread and season)
meatloaf (beef or ground turkey) baked potato or yams, green veggie of some kind
Other proteins: roasted or grilled chicken, turkey, pork, beef, salmon, talapia, scallops, lamb, some sausages are safe, bacon (Check labels)
Vegetarian chili--homemade.
I eat a variety of veggies..whatever looks fresh at the super market or farmer's market or stands...steamed, grilled--- or roasted root veggies in stock.
Sweet potatoes—baked at 350 degrees in a pan for 45-50 mins.--are yummy
Potatoes—roasted, grilled, whipped with milk
Fritattas with veggies and salad
Stuffed peppers—with ground turkey, beef or lamb and rice

ANY recipe can be altered--just use gluten-free breadcrumbs, or rice pasta ---use any flour made from amaranth, corn, bean, etc...just NO WHEAT, RYE OR BARLEY or cross -contaminated OATS. Quaker oats are Cced!!. Bob's Red Mill are not.


Cross-contamination is the bane of our existence. Learn how to make your home safe.

http://celiacdisease...scontaminat.htm

Packaged/processed Foods:

A package stating a product is “Gluten-free “ does not always guarantee it was processed and manufactured and packaged in a dedicated facility. You want the GIG (Gluten Intolerance Group) circle stamped on the package –it is a big gluten-free in a circle.


Some DEDICATED gluten-free facilities are:

Bob's Red Mill
1-2-3 Meredith's Marvelous
Authentic Foods
Pamela's
Cause You're Special
Udi's
The Cravings Place
Andean Dream
Kinnikinnick
Organic Nectars
Orgran
Foods by George
gluten-free FULL FLAVOR Gravy
Prana Bar
Enjoy Life
EnergG
Gillian's

They make all kinds of ready made mixes and flours to make it easy to start baking.

I just tried CHEBE's pizza dough mix (Kareng and MarilynR recommended it )and it was pretty good. :)

That should get you started.
Best wishes!
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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

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

 

"Have a super shiny day!". A.S. 2014



Misdiagnosed for 25+ years; finally DXed on 11/01/10. I figured it out myself. 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


#11 Lisa

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Posted 02 January 2012 - 07:00 PM

Great list Irish. But, never fail to read a label. :)
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Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

#12 hspichke

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Posted 02 January 2012 - 07:26 PM

Thank you SOOOOO much Irish! Very helpful!! I also just noticed there is a Gluten Free STORE a couple blocks away so I will definitely be making a visit soon :)
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Asthma, Hyperthyroidism (After childbirth), Endometriosis, Migraines with aura, Antiphospholipid Antibody Syndrome, Celiac Disease.

#13 Roda

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Posted 02 January 2012 - 07:55 PM

Most of the time the "twilight sedation" they use is propofol. I was told during my first EDG that I was metabolizing it too quickly because I was waking up and trying to hit people. Good thing I don't remember it. So when I went in for my colonoscopy two months later, I joked about them getting horse kicked. They weren't taking any chances and gave me a higher dosage. :lol: I could tell they gave me more, because it took longer to come around. If I see the endoscopy staff, we still joke about it(I work with them).

My oldest son had an EGD August 2011 at age 10.5. They did not put him under general anethesia, they used the propofol too.
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Me:
Celiac disease(positive blood work/biopsy- 10/2008), gluten free oat intolerent, Hashimoto's Thyroiditis/Disease, Raynaud's Disease


DS2(age 9):
celiac disease(positive IgA tTG, no biopsy- 11/2010)


DS1(age 13):
repeated negative bloodwork and negative EGD/biopsy. Started on a gluten free trial(8/2011). He has decided to stay gluten free due to all of the improvements he has experienced on the diet.


#14 red island

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Posted 02 January 2012 - 08:29 PM

That is an awsome list Irish Heart. I will be studying it myself. As for the endoscopy, I didn't enjoy it one little bit (they didn't give me enough drugs either) but I am glad I did it cause they found lots of damage but ruled out other things like cancer. Once I knew how much damage there was I quit worrying about why I was not improving as fast as I thought I would (mostly fatigue issues).
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#15 IrishHeart

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Posted 03 January 2012 - 06:43 AM

Great list Irish. But, never fail to read a label. :)



amen to that, sistah!! ;)

I put that one suggestion in BOLD. Who among us hasn't had THAT bite us on the behind?? :rolleyes: Hubs is the grocery shopper and he reads labels like a pro. B)
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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

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

 

"Have a super shiny day!". A.S. 2014



Misdiagnosed for 25+ years; finally DXed on 11/01/10. I figured it out myself. 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



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