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Just Diagnosed. "no" Symptoms. What Do I Do?


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#1 argybargy

 
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Posted 11 March 2013 - 05:14 PM

I've been reading through this Web site and I really feel for all of you. So many people on this site have been through so much and it's great to see you get relief. I'm wondering if you've heard of stories like mine, and if you have any suggestions for me.

 

I was just (today!) diagnosed with celiac after a biopsy. The suspicion was raised after I went for an annual checkup and my GP didn't like my liver results, so he just started testing for things and eventually got this. He sent me to a GE and the GE said, yup. I am a middle-aged man and did not appear to have this disease last year, but the GE said, sometimes it just appears. He said I must adopt a gluten free diet.

 

I have no symptoms that I can perceive consciously, but the GE said the biopsy results were unmistakable. I am trying to remove gluten from my diet but I have two major concerns that I hope someone here can help with.

 

1. I work in a high-pressure field where there's a lot of events and a lot of eating out. I am not able to control where we eat out, and I don't want to be "that guy." For instance, I'm going to be at an event this week where my only opportunity to eat between 5 and 9 pm will be passed hors d'oeuvres. In that case, I don't have to eat them, but I'll be starving if I don't eat anything. What do I do in these situations, and at those frequent business dinners?

 

2. As I said, I don't have any visible symptoms except two doctors telling me that I'm ill and it's damaging my liver. But no visible symptoms means I have no way of knowing when I'm eating "hidden gluten" or not, because it isn't actually making me feel sick. Avoiding all the obvious things seems straightforward enough, but I don't know how to tell whether I'm doing well at the overall task other than getting blood tests way too often. My GE said that many people are asymptomatic, so are there any stories I can learn from here?

 

Thanks.


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#2 kareng

 
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Posted 11 March 2013 - 05:38 PM

Find some nuts or a granola type bar that is gluten-free and keep some with you always. You can always step outside and eat them to hold you over.
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Thanksgiving dinners take 18 hours to prepare.  They are consumed in 12 minutes.  Half-times take 12 minutes.  This is not a coincidence.  - Emma Bombeck
 
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#3 TGK112

 
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Posted 11 March 2013 - 06:47 PM

I was totally asymptomatic when diagnosed last summer - at the age of 56. I was losing bone density, despite being on a bone building drug. I was tested for celiac to " rule things out" - and surprise - it was ruled in -the antibodies were high and the endoscopy confirmed it.

 

Like you, I felt like a very poor "barometer" to know if I was doing the whole gluten free diet correctly. I never felt sick eating gluten, I have done a TON of reading, and now have a pretty good handle on things. Most people on this forum claim that they get more sensitive to gluten as time goes on - I personally have not found that. I have never had the experience of "getting glutened" - but can't imagine that I haven't slipped at least once. There are very slight things that I have noticed since being gluten free - a bit more energy, and some changed bathroom habits.

 

You are right - eating out is the hardest part - so go prepared!

 

The good news - six months into the gluten free diet, I just had a follow up. I was VERY anxious for this - to know if I have been doing the right things. Both the blood work and endoscopy came back showing remarkable improvement. I have been instructed that here on I just need to have blood tests on a yearly basis.


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#4 txgal748

 
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Posted 11 March 2013 - 06:55 PM

Argybargy,

 

I would like to say that I thought I had no symptoms. Then I noticed the dull headaches disappeared, then the pain in my feet and legs went away.  I have never had digestive problems.   I can understand your concern about eating out, I think this is the hardest part. The best thing would be to do what Kareng says, but you will have to ask about gluten-free options at some point.  I hate having to ask about gluten-free menu because I feel the staff will think I'm being difficult, but we have to get passed this.  This is our health we are dealing with.

 

Good Luck!


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#5 nvsmom

 
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Posted 11 March 2013 - 07:35 PM

Welcome to the board!

 

As the other posters suggested, nuts or bars (I like Lara bars myself) are really easy to have on hand in a pocket. Many hors d'oeuvres will be gluten-free like veggies or fruit. Many meats will be too but you'll have to double check that with the wait staff. As for business dinners that are buffet style, if you let the staff or hosts know of your needs ahead of time, often you will be able to visit the buffet first... a bit of a bonus.  :)

 

Best wishes.


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#6 GFinDC

 
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Posted 12 March 2013 - 12:54 PM

Hi, welcome to the forum. :)

 

I wouldn't worry much about being "that guy".  There are lots more people eating gluten-free these days, even people who don't have celiac disease.  People with diabetes and Crohn's disease sometimes follow the gluten-free diet.  Other people follow it just because it is a healthy diet.  Heck, two of my neighbors are starting to follow it just because they "want to eat healthier".  Being "that guy" is pretty normal these days.

 

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/

 

 


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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

#7 argybargy

 
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Posted 12 March 2013 - 02:30 PM

Thank you folks. I just Amazoned a large box of Kind bars which are going to be my dinner during my upcoming business event.

 

nvsmom, I'm so stressed out by this diagnosis I hadn't even thought of talking to the caterers in advance. Thank you for reminding me!

 

tgk112, any tips or Web sites I can check to start building a list of restaurant foods? It sounds like you have a lot of experience with that.

 

GFinDC, I understand you are trying to be helpful, but unfortunately your recommendations are completely impossible in my profession. For me to eat healthily I still have to be able to afford to buy the food!


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#8 JNBunnie1

 
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Posted 12 March 2013 - 03:29 PM

Argy, first rule? Relax...... You've JUST been diagnosed, it's ok to not be an expert overnight.

It really will become second nature with time.


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#9 pricklypear1971

 
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Posted 12 March 2013 - 05:16 PM

You have to learn to figure out where you're going to eat-then determine if they can accommodate gluten-free. It's an art. It's easier if business functions repeat locations, but if not, sigh...just more work for you.

Always have a snack - including a protein. Nuts are shelf-stable, dried fruit. Make your own trail mix. Boring but it works.

Your new fast food is a grocery store. You'll learn gluten-free lunch meats (most are), fruit, boiled eggs are great on the road. Some jerkies are gluten-free. All are also great items for the plane. Btw Vegas/McCarron airport sucks for gluten-free. Dfw -Papadeaux !!

Learn to schedule a time to eat safe food before you get hungry. Cram your snacks down your throat before you go to a function so you aren't hungry and tempted.

I have some links to food services that ship gluten-free meals, but am on my phone. Will try to remember to post later.
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#10 TGK112

 
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Posted 12 March 2013 - 05:35 PM

Thank you folks. I just Amazoned a large box of Kind bars which are going to be my dinner during my upcoming business event.

 

nvsmom, I'm so stressed out by this diagnosis I hadn't even thought of talking to the caterers in advance. Thank you for reminding me!

 

tgk112, any tips or Web sites I can check to start building a list of restaurant foods? It sounds like you have a lot of experience with that.

 

GFinDC, I understand you are trying to be helpful, but unfortunately your recommendations are completely impossible in my profession. For me to eat healthily I still have to be able to afford to buy the food!

There are a couple of websites/apps that can find nearby gluten free restaurants

 

http://www.findmeglutenfree.com   is a good one. You can also try   http://www.allergyeats.com  Even Yelp has a feature where you can specify gluten free restaurants in your area.

 

When I eat out I tell the server "that I will have a very severe reaction if I have any bit of gluten" ( even though I won't) - just to make them realize that it is serious, that I'm not on some sort of fad weight loss diet. I usually stick with grilled meats and vegetables. I have not been to a Chinese restaurant since diagnosis - but have found a good Thai restaurant with a gluten free menu. When I eat at a Mexican restaurant - I order fajitas - no tortillas. When I go to an Italian restaurant,  I order chicken cacciatore - no pasta. At general restaurants - salads are usually safe. Generally meat and vegetables are okay - you just have to watch the sauces.

 

I hope this helps.


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#11 Gemini

 
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Posted 12 March 2013 - 05:56 PM

Here's a link you may find useful:  http://www.glutenfreeregistry.com/

 

Hope this helps!

 

 


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#12 MJ_S

 
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Posted 12 March 2013 - 07:33 PM

Here is the "Dining Out" page from the Celiac Center at Beth Israel in Boston: 

http://www.bidmc.org...FD/DNNGOUT.aspx

 

Another site for shopping/eating out: http://www.triumphdining.com

 

I don't have a smartphone but there are apps that will point you to gluten-free foods and restaurants.

 

Best book you can buy is "Real Life with Celiac Disease" - written by the nutritionist (Melinda Dennis) and doctor (Daniel Leffler) from the Celiac Center.

 

Edit: Props to your doctor for diagnosing you. We've all experienced so much of the opposite, it's nice to see a good doctor out there DOING THEIR JOB.


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Blood Tests: TTG IgA Negative / Total IGA Normal

Skin: Confirmed DH
Genetic: DQ8 & DQ6 Positive (DQA1*0301, DQB1*0302, DQA1*0103, DQB1*0603)
Free Of: Gluten 1/1/11, Dairy 2010, Soy 2011


#13 GFinDC

 
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Posted 13 March 2013 - 06:39 AM

Hi ArgyB,

 

I spend less on food now than before I went gluten-free.  Whole foods are less expensive than processed foods.  But if you are eating out a lot there are a few things you can try that may help with that.  Taking some kind of safe food with you is a great idea.  Fruit, (oranges, nanners, apples) travel well and are easy to eat.  You can try eating vegetable side dishes at restraunts.  You can also ask the cook to make you a steak or  a hamburger in a clean separate skillet using a clean spatula.  That's generally a pretty easy thing for a cook to do.  Tell them you just want salt and pepper and no steak sauce or anything.  You don't want to eat meat off a shared griddle.  Eating meat from a shared griddle can be a problem because sometimes they will grill the buns or garlic bread or something on the same griddle.

 

If you search for gluten free and the name of a city you can find restraunts that have gluten-free options.  There are quite a few that do.  Some chains have gluten-free menus now.  PF Chang's Chinese has a separate gluten-free menu, Z-Pizza, I think Lone Star Grill does.  There are many others too.  Just ask for the gluten-free menu when you order.  You can also search for the restraunt name on this forum and get info on how people fared there.


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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

#14 argybargy

 
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Posted 13 March 2013 - 07:55 AM

This continues to be very helpful. I'm definitely feeling physically odd, but I know it's because I've been very nervous and eating weird; for instance, I had way too much Ben & Jerry's New York Super Fudge Chunk ice cream last night after Googling it. ("It's gluten free so the calories don't count, right?")

 

pricklypear1971, definitely, avoiding food served in airports is good for humans in general. How'd you know I'm in McCarran all the time? Oh right, we business travelers are *always* in McCarran. You-all can think of me a little bit like George Clooney in "Up in the Air," except shorter, not nearly as handsome, and ... okay, not like George Clooney in any way.

 

One of my go-to lunches at work is a salad from the deli across the street, where I see them pick the individual ingredients out of metal cups and mix them in a big bowl with metal instruments. I can switch to red wine vinegar & oil for dressing. That should be OK, right?

 

Also, tgk112, why would the Thai restaurant need to have a special gluten-free menu, for instance? I didn't think there was any gluten in most Thai curries, at least the recipes I've seen. Tell me what I'm missing.


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#15 myquest7846

 
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Posted 22 March 2013 - 11:50 AM

This continues to be very helpful. I'm definitely feeling physically odd, but I know it's because I've been very nervous and eating weird; for instance, I had way too much Ben & Jerry's New York Super Fudge Chunk ice cream last night after Googling it. ("It's gluten free so the calories don't count, right?")

 

pricklypear1971, definitely, avoiding food served in airports is good for humans in general. How'd you know I'm in McCarran all the time? Oh right, we business travelers are *always* in McCarran. You-all can think of me a little bit like George Clooney in "Up in the Air," except shorter, not nearly as handsome, and ... okay, not like George Clooney in any way.

 

One of my go-to lunches at work is a salad from the deli across the street, where I see them pick the individual ingredients out of metal cups and mix them in a big bowl with metal instruments. I can switch to red wine vinegar & oil for dressing. That should be OK, right?

 

Also, tgk112, why would the Thai restaurant need to have a special gluten-free menu, for instance? I didn't think there was any gluten in most Thai curries, at least the recipes I've seen. Tell me what I'm missing.

Please o please watch the carbs and calories in gluten-free food.  I was someone who had no clue that I had celiac until I was diagnosed after   a routine colonoscopy.  Then lo and behold, I found out that celiac can cause migraines (which I suffered from), osteoporosis,( which I have,) and anemia (which I've always been.)  I went into a huge depression going to grocery store and stuffing the cart with everything gluten free thinking it had to be good for me - wrong!  20 lbs later I find out that the additives put in gluten free foods to make them tasty are high calorie high carb.  

 

Many restaurants these days are getting the hint that they need to address our needs.  Red Lobster, Olive Garden, etc etc all have menus to give you that list gluten free offerings, so it's getting better for us.

 

I used Medifast gluten free meals to get the weight off, and another thing that helped was trying to follow the Paleo diets that are out there, basic food items & tasty !

 

Good luck to you, you'll need to read lables constantly to try to keep from getting glutened.  If you read this forum you will see that many manufacturers are gluten free then something changes and they're not anymore.


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