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

Hello--New & Scared
0

10 posts in this topic

Hi! I am very new to the celiac world last week had blood test and my GI doc told me it was positive for celiac disease.My tTG was 100, I am having an endiscopy on Jan 10. Will the doctor be able to tell me right away or will I have to wait again for results? I plan to go gluten free on Jan 10. :( I was diagnosed 15-20 years ago had extremely bad runs and lost about 30 pounds that lasted for several months. After going to several GI's last one told me back then I had ciliac disease-- (don't remember what was done) but the next day the runs stopped and never started again--so I continued to eat everything & anything. This past year, I developed an annoying itch, blood test from dermatologist found elevated platelets 575 at highest. Went to hematologist/oncologist and platelet levels had dropped to 435 by then,(stop craving pretzels) but he ordered all the cancer tests-- and came back negative. :)) He took platlets again and dropped couple more points. Reading something about thrombosytis (sp) and it mentioned celiac disease and jogged my memory. This past year I also suddenly developed a severe craving for honey wheat pretzels and consumed half bag a night for quite awhile--that is when itching in hair and face usually sometimes all over) increased---then the craving just stopped. No blisters or rash on skin, but have had lots of canker soars especially over the past few years, also tingling in my legs I thought was Restless Legs.Took Hylands Restful Legs and then it went away when taken. I don't know which way to turn, have started buying gluten free foods in Whole Foods, but WOW, really expensive!! I don't like to bake so that's out. I really don't like to cook much either. Hubby does most of the cooking, he's Italian so we eat lots of pasta. Now I hear about cross-contamination and am really worried to let him do the cooking as he might forget. I read the Newbie 101 and had good info, but am feeling over come by all of this on what to eat and not eat--pluse the expense worries me too--we live on a fixed income.Nobody told me at the dr's office about how you have to eat gluten till they do the biopsy so ran out right after appointment and got gluten free stuff--thank heavens I read you have to eat normally BEFORE the endiscopy for it to be accurate. Everyone keeps telling me how great I am going to feel, but I feel good now, minus the annoying itch and canker soars.

Please help can anybody give me some pointers I am feeling soooo alone...Thanks for letting me vent.....

0

Share this post


Link to post
Share on other sites


Ads by Google:

Its not as bad as it sounds. Really. I'm getting close to two years in, and it has become normal for me.

First off, gluten free foods are expensive. No doubt. It is best to do a whole foods diet (nothing processed!) for the first few months. But, if you just have to have something, a substitute can be found in the gluten free goodies. I don't bake a lot myself, but i have gotten pretty good at making coffee cake :)

0

Share this post


Link to post
Share on other sites

For your hubby - tinkyada rice pasta is excellent. My non-gluten-free friends say it tastes like the real thing.

The diet is doable. It just takes some getting used to. You have to get into a whole new mindset.

And as for the cost, I actually find my grocery bill is smaller now because I buy mostly whole foods. The processed stuff (whether gluten-free or not) is expensive.

You've definitely come to the right place for advice and support. Good luck!

0

Share this post


Link to post
Share on other sites

Welcome!

This really is very good news - I won't kid you - the transition is tough, but once you learn how to replace all your favorites life becomes much easier and you gain health!

Read as much as you can and ask loads of questions - it really does help speed the transition.

0

Share this post


Link to post
Share on other sites

Hi Michlootz,

Welcome to the forum! :) Doctors used to think children outgrew celiac disease, but we now know that is wrong. So if you had it 20 years ago you still have it today. It just doesn't go away. Sometimes children do have a period of reduced symptoms for a while, and that's why they used to think celiac would go away. But the symptoms always come back later.

The first couple months of gluten-free can be a bit tough, getting used to eating different foods. You should really start doing your own cooking though. Like it or not, your health depends on eating gluten-free. Starting out you should plan on eating mostly whole foods, and very little processed foods and baked goods. Foods like plain meats, fruits, vegetables, and most nuts are naturally gluten-free. So they don't cost any more for us than they do for other people. And processed foods are expensive compared to cooking whole foods. You pay for a lot of packaging and marketing when you buy processed foods. If you can find Mission brand or other corn tortillas they are a cheap sub for bread. You can warm them up a little and make wraps. Don't get the flour tortillas though. Chex gluten-free breakfast cereals and gluten-free Pebbles are ok. Betty Crocker has gluten-free cake mixes too.

If you aren't cooking your own food, it is difficult to know what ingredients are causing you symptoms. So sticking with simple foods with limited ingredients is good.

0

Share this post


Link to post
Share on other sites




It is an adjustment...for me it was easy to say no (stomach virus sick within an hour, most recent episode ended with ER trip for anaphylactic shock--testing Jan 11 for wheat allergy vs gluten intolerance with secondary allergy). As to what to eat, I prefer the combination flour pasta (corn, quinoa), even DH said it was good. We do cook both, separate strainers. It is just to expensive to feed 10 people gluten free pasta when I'm the only one with issues-just Sunday dinner, don't feed that many daily :)

Breakfast is usually egg substitute omlets or chex cereal. Lunch is either left overs or turkey/cheese roll-ups and chips. Make sure to read the labels, some lunch meat has gluten. Chips do also such as Pringles (which happens to be my favorite).

1

Share this post


Link to post
Share on other sites

Thanks to those that posted a reply to me. It sure feels good to know there are others just like me out there. :) I forgot to mention I also have diverticulitis too--so all Nuts are out for me-and Pop Corn too. :( That was disovered when I had a colonoscopy done a few years ago. Does anyone know if olive oil is gluten free, or what brand can I get that is? How about mouthwash & pesto sauce is it, or could anyone know what brands are gluten free?......Thanks!..... :blink:

0

Share this post


Link to post
Share on other sites

There is no gluten in oilive oil, and there shouldn't be in pesto. Mouthwash probably not, but as always, check the label.

0

Share this post


Link to post
Share on other sites

Hi Michlootz,

The endoscopy should include taking biopsy samples, 5 to 8. The biopsy samples are usually sent to a lab for review. So the results can take a week or 2. It is usually ok to start the gluten-free diet while waiting for the results, but there have been times when the results were lost and the tests had to be redone. That's unusual tho.

There is a skin rash called dermatitis herpetiformis that some celiacs get. It causes intense itching.

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.

Helpful threads:

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/

0

Share this post


Link to post
Share on other sites

I agree with GFinDC completely about cooking yourself. When you cook at home you always know you are safe from gluten, but when you eat out you are always risking someone doesn't understand cross-contamination.

Other advice I can give is don't worry about replacement foods...they normally just disappoint. (gluten free bread, brownies, cookies, etc)

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
      104,691
    • Total Posts
      921,764
  • Topics

  • Posts

    • Are you vegan or vegetarian?   I am concerned about your lack of protein and fats in your diet.  These diets can work when you are also gluten free, but as a celiac you can be malnourished.  It is hard to heal when you are slowly starving yourself.   No offense, but some newly diagnosed celiacs end up with food disorders.  Perhaps working with a dietician can help.   What actually are your blood glucose levels?  Did you know that just as Hashimoto's is common with celiacs, so is type 1 diabetes?   Ask your doctor for antibodies testing for Type 1 diabetes (TD1), if your blood glucose levels are not in the normal  range.  You can develop TD1 (LADA) at anytime.   For adults there is a "honeymoon" period which can last for up to five years.  Be on the watch for other AI issues (besides TD1) too.   It is so important to monitor your health after a celiac disease diagnosis!  
    • He was not IGA deficient.  I'm still hoping we can convince the base GI to approve his referral.   Thanks for that thread about TTG Igg.  That's exactly what I was wondering. 
    • Star Anise Foods  rice paper and spring rolls are gluten free they have brown and white rice versions. I have not had issues with these in the past when I used to use them. Should be able to find them on amazon.
    • Hi strawberrymoon, If you are having a blood sugar problem, that can cause nerve damage and tingling.  Nerve damage is often associated with diabetes.  You can ask your doctor to check your A1C level to get an idea how it has been doing. It would probably help your glucose levels to stick with a paleo style diet, avoiding most carbs.  Carbs and meats have a different affect on blood glucose.  Carbs tend to spike blood glucose while meats even it out. There are a lot of negative changes that can happen with high blood glucose.  It is wise to try and get it under control ASAP.  My brother has lost most of his vision in one eye now from high blood glucose.  And he has the tingling symptoms you described.  The tingling can progress to pain in time.  My brother chose to ignore his diabetes and is paying the price for it.  He is doing better at it now but the damage is done. Yes, B-12 deficiency can cause those kind of nerve symptoms.  But if you have high blood sugar that is the more common cause.   Diabetes is not a rare condition.
    • I have been living in Ho Chi Minh City, Vietnam, for two years, and finding gluten-free food is proving more difficult than I thought, even if I am cooking my own food. Wheat flour, called "bot mi" in Vietnamese, seems to creep into a lot of stuff nowadays. What's more, manufacturers do not feel it is important to list bot mi in the ingredients on a food's packaging unless it is a principle ingredient in the food. In other words, soy sauces or wraps with just a tiny bit of wheat flour added to add a touch of thickness or pliability are not guaranteed to list the ingredient. For some genetic reason, Vietnamese people are not nearly as susceptible to food allergies as Westerners - it probably has something to do with exposure to less hygenic foodstuffs having built up an immunity over hundreds of years - so it is not really considered important to split hairs in that department over here. Anyway, I love rice paper but have often gotten glutened by it when I have it. Can any celiac who could tell if a product had gluten by more than just the ingredient list on the back let me know a definitively gluten-free rice paper brand? I know that very few rice paper brands actually list wheat flour in the ingredients, but I don't 100% trust the ingredients list for products made by Vietnamese companies. Call me paranoid. By the way, I have a neurological condition that irreversably breaks down my immune system when I ingest gluten, so I don't want to experiment with trial by fire here.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,695
    • Most Online
      3,093

    Newest Member
    ToniaC
    Joined