Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Confused And Nervous
0

23 posts in this topic

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!

0

Share this post


Link to post
Share on other sites


Ads by Google:

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!

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites




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.

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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:

0

Share this post


Link to post
Share on other sites

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.about.com/od/symptomsofceliacdisease/a/celiacsymptoms.htm

http://www.celiacdisease.net/symptoms

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

http://www.celiac.com/articles/181/1/Safe-Gluten-Free-Food-List-Safe-Ingredients/Page1.html

http://www.celiac.com/articles/182/1/Unsafe-Gluten-Free-Food-List-Unsafe-Ingredients/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.practicalgastro.com/pdf/September08/HlywiakArticle.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.about.com/od/cookingglutenfree/a/crosscontaminat.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!

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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 :)

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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).

0

Share this post


Link to post
Share on other sites

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)

0

Share this post


Link to post
Share on other sites

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 :)

You're welcome. Just remember, though FRESH is best. And homemade is better than packaged. (especially bread)

Your diet should be more about the fruits, vegs, meat, seafood and nuts. The packaged stuff is convenient, yes, but the real nutrition is in the WHOLE natural foods.

Okay, kiddo?!

Be well--and check out the recipes in the cooking and baking section on here--these people are amazingly creative. ;)

0

Share this post


Link to post
Share on other sites

Irish Heart,

Thank you so much for this information ! I'm new to this forum and recently diagnosed with Celiac's

and your list was refreshing to find !!

Kind regards,

clohmean

0

Share this post


Link to post
Share on other sites

Irish Heart,

Thank you so much for this information ! I'm new to this forum and recently diagnosed with Celiac's

and your list was refreshing to find !!

Kind regards,

clohmean

Glad it helps get you started.

I hate to see newbies (as I once was) become fearful of eating.

Just remember FRESH is best and WHOLE Foods are better than packaged stuff.

and READ LABELS because ingredients can CHANGE!

0

Share this post


Link to post
Share on other sites

Oh--one more thing.....

Cecelia's Marketplace Grocery Shopping Guides are helpful! get the most recent version available. Google it.

0

Share this post


Link to post
Share on other sites

Great list - thank you so much, this is very helpful for those of us just starting out!

0

Share this post


Link to post
Share on other sites

Great list - thank you so much, this is very helpful for those of us just starting out!

You are so welcome. :)

BTW, I noticed your sig line states you are "thinking of going gluten free for 3 months"....Hon, if you have diagnosed celiac, you need to be gluten-free for life so you can avoid developing any further complications, vitamin deficiencies and autoimmune diseases.

Better read up on the disease process so you understand why this is essential so you can stop the autoimmune response.

Even if you are one of the more fortunate ones without gastro symptoms, you are sill doing damage every time you ingest gluten.

0

Share this post


Link to post
Share on other sites

BTW, I noticed your sig line states you are "thinking of going gluten free for 3 months"....Hon, if you have diagnosed celiac, you need to be gluten-free for life so you can avoid developing any further complications, vitamin deficiencies and autoimmune diseases.

Better read up on the disease process so you understand why this is essential so you can stop the autoimmune response.

Even if you are one of the more fortunate ones without gastro symptoms, you are sill doing damage every time you ingest gluten.

I know, I've come to realize that it's something I need to do. I just hope I'm able to do it consistently without messing up somewhere. I will be gluten-free for one week today, and i think so far so good. It's the "forever" part that I'm struggling with, it just really seems so long! But hopefully acceptance will come with time.

0

Share this post


Link to post
Share on other sites

I know, I've come to realize that it's something I need to do. I just hope I'm able to do it consistently without messing up somewhere. I will be gluten-free for one week today, and i think so far so good. It's the "forever" part that I'm struggling with, it just really seems so long! But hopefully acceptance will come with time.

:lol: well, sweetie, look at it this way, a LONG healthy life is a very GOOD thing!

But I understand what you are saying...it is a shock and an adjustment and we all "get that",hon--we really do! And in time, you will come to a place of acceptance. Don't get all panicky about gluten and cross-contamination. We all mess up on occassion. I got glutened by CC recently myself and I've been doing this for a year. It's a learning process and then, it becomes "the new normal". :)

But here is the thing...you have been given a gift with an early DX. Yes, I said a gift-- because it is a chance early in your life to be healthy and potentially stop any other AI diseases and complications from developing. So many of us had terrible health problems--some truly devastating and you may hear some of those stories as you read the threads on here--and they affected us all of our lives. It all makes sense NOW, but while it was happening?? not so much.

I had no clue what I had all along and I would have given anything to know back in my 20's what was going on inside me. My life would have been very, very different.

But ....You can live a healthy long life!! :) there's plenty to eat and the gluten free food industry and Celiac awareness is providing us with many more options. Life is good. :)

Be happy, eat healthy and don't let this DX get in your way! ;)

And --we are here for you!

Cheers,

IH

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,681
    • Total Posts
      921,724
  • Topics

  • Posts

    • Ok, I can't seem to find my first lot of blood tests that were done for Celiac screening, they did include TTG I remember that much, and I am getting another copy of it but another test did come in today.  I don't know how different tests are done around the world and I don't get all the medical jargon but this is what it states, ******************************************************************************* HLA DR/DQ Genotyping for Coeliac Disease, Specimen type : EDTA blood Method : Detection of sequence-specific oligonucleotides (Gen-Probe). HLA-DR - 1, 13          DRB1 - 01, 13 HLA-DQ - 5,6        HLA-DQA1 - 5,6      HLA-DB1 - 05, 06 Interpretation : No genotype susceptibility for coeliac disease.  The DQ2 and DQ8 antigens associated with increased risk of coeliac disease were not identified in this patient.  In the absence of these antigens, coeliac disease is extremely unlikely.   *******************************************************************************   I have read the horror stories of blood tests and scope biopsies not be done right or flawed but here is what I do know as of now, At the moment the most non invasive test I can have done say negative.  I have double scopes (endoscopy and colonoscopy) booked for the 12th of October with results from biopsies expected a week or two after. Chances are they will show, a) signs of coeliac disease (even if the odds are low it can still happen), b) show signs of something else entirely and we will be busy dealing with the ramifications of that or c) it will show no signs of coeliac but I will still be suffering from gluten sensitivity (which is harder/impossible to measure clinically). My GP has told me that stress and anxiety can be a cause of all the symptoms I have been experiencing and suggests if the scopes show nothing that I may benefit from something to treat anxiety, i.e. antidepressants.  Not in a, "Oh we don't know what it is so have these," kind of way, he agrees with the thought that the scopes could indeed show coeliac, something else or even be negative. I did tell him that I could have a sensitivity and that even without benefit of clinical results, some people have gone on a gluten elimination diet for a period of time to see if they get any relief.  My question is this, if the scopes come up negative and I try eliminating gluten, how long would it be before I saw any results or improvements?  I have read enough here and elsewhere to know that everybody is different, some see results within days, some see results longer but are there any guidelines for how long a test like this should be undertaken for?  I have heard everything thing from two weeks to two months.  All of this is entirely moot at this point but I know that even if the results said clear, there would always be a little part of me that wonders if it could be a sensitivity that is the problem.  Any thoughts or advice greatly appreciated, and a thank you to all those who have taken the time to respond and offer advice and encouragement so far.        
    • We don't delete accounts but can delete any personal information and change your screen name if you would like. Just send me a personal message with three possible screen names. For the record you can edit most things in your account area with the exception of your screen name.
    • Thanks I never heard of that dye before, I guess I have to find more natural meat thanks for the suggestion. 
    • Yes, I only eat one meal a day. Sometimes salad or fries or whatever I can find. And thanks for the replies again.
    • A colonoscopy is not used to diagnose celiac disease.  An endoscopy is used to obtain biopsies in the small intestine.  
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,680
    • Most Online
      3,093

    Newest Member
    Misalina
    Joined