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Shocked And Overwhelmed


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19 replies to this topic

#1 slickdaddy0077

 
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Posted 11 May 2013 - 02:13 PM

Hello. I have just recently been diagnosed with celiac disease and I am overwhelmed and quite shocked.  My PCP did the tests and gave me the diagnosis about a week ago. I have been scouring the web looking for one place to get information regarding the symptoms (obvious and not so obvious).  Also having to re-invent my whole life of eating and nutrition.

 

I am in day 5 of my new lifestyle and things are really strange.  I feel like I just got let out of the car in the middle of nowhere and have to find my way back to civilization. This is going to be a real challenge for me I know but I will surely feel better and live healther as a result.

 

My Dr. gave me no information as to what to do now so here I am and so far I have found tons of information on this forum that I will live by for sure. Thank you all for that.

 

I have noticed that my abdominal swelling has finally started to subside after the 4th day of gluten free, or the best that I have been able to do so far but I have nausia, pain and some shakey hands still prevail.

 

I am very physically fit and for 47 years old am in very good shape. I climb cell towers and high rise radio towers, a Wireless Broadband Engineer.  I trave a lot and I'm really feeling nervous about what and where to eat while on the road. I also have to take blood pressure meds, and I have anxiety disorder and have been prescribed Xanax for the past 18 years.  I am worried that the absortion of these meds will be different now and that really concerns me.  When you are 2, 3, 400' in the air on a tower, that is NOT the time to find out that the meds need to be adjusted.

 

I am a very picky eater to start with and don't like many veggies but I will have to re-discover the ones that I like and don't like again.

 

While running this morning I found a supermarket that only sells organic foods and has a large aisle of gluten free items and it's only 1/2 mile from my home. 

 

I'm not quite sure what to do at this point but I thought that I would jump in to a topic here and get on with it.

 

Slightly depressed :(


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Thank you! :D

 

Michael L.


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#2 IrishHeart

 
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Posted 11 May 2013 - 03:36 PM

Welcome to the family!

 

Please do not be depressed. We can offer you some help  AND it is entirely  possible your anxiety is CELIAC-related. (I had it develop and i am not an anxious person by nature at all)

 

Several months post diagnosis and off gluten and it was GONE.

 

 

Please read this tread I put together to help newbies get started. It has everything from meal and snack suggestions

to follow up care to how to deal with cross contamination issues in it.

 

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

 

and this

 

 

http://www.ncbi.nlm..../pubmed/8975957

 

and KNOW that you can heal and be well.

call on me if I can be of help! 


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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

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"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 shadowicewolf

 
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Posted 11 May 2013 - 03:37 PM

 Chances are that your anxiety might decrease due to the removal of gluten. 

 

Poke around on the forum some more, there is a lot of good information here.


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#4 1desperateladysaved

 
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Posted 11 May 2013 - 03:51 PM

Welcome. Michael,

 

Thanks for the imagery,  " I feel like I just got let out of the car in the middle of nowhere and have to find my way back to civilization."  I guess we all felt about that way in the beginning.  Keep walking in the right direction, and you are bound to get somewhere.  You found a good place to come for sympathy and information.  It can be tricky with lots of things to learn.  Give yourself time to work on it.

 

I suggest you check your blood pressure often.  IF you could stay low for a while, that would be good.  But like most of us, you probably can't do that all of the time.  I don't know how to be more cautious while climbing towers, but I would do it.

 

Diana


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#5 Deaminated Marcus

 
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Posted 11 May 2013 - 07:57 PM

A box of Instant white rice  was an easy to prepare staple food when I was gluten free.

On top of that you can put canned fish or cooked ground beef and some vegetables.

I even ate that for breakfast.  That will give you energy to climb towers.


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#6 cyclinglady

 
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Posted 11 May 2013 - 09:03 PM

Welcome Michael!

 

This forum is so very helpful.  My doctor offered nothing as far as support except for a list of gluten-free restaurants in the area.  Luckily, my husband has been gluten-free for 12 years, so my transition has been relatively easy.  Do as much research as possible (I've been glued to the internet and have made trips to the library).  As far as travel goes, there are plenty of travel tips on this site.  My husband travels alot and he packs a bowl, spoon and can opener in his luggage.  He tries to get a room with a frig and picks up groceries just in case he can't find a gluten-free restaurant.  There's been plenty of nights when he's eaten carrots, a bowl of Chex cereal and some fruit.  If he's lucky, he'll find a Whole Foods market for other gluten-free pre-made food.  He always packs snacks in his luggage just in case!   He also talks to the hotels staff and they've been pretty accommodating.  He often goes into the kitchen to read the box labels.  

 

The anxiety should get better as you heal. 

 

Good Luck!


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#7 Celiac Mindwarp

 
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Posted 11 May 2013 - 09:50 PM

Hi Michael

Welcome to the board (even if you'd rather not be here).

It does take a while to adjust, but not as long as you think. When I started posting Sept 12 I got sick of everyone telling me it would become the new normal, but it did.

I tend to eat a breakfast thdt looks like lunch, say turkey, chicken or a homemade burger, eggs, sweet potato, some veggies.

For snacks nuts are good, avocados, bananas. Adding plenty of protein and good fats like coconut, olive oil, avocado, nuts can help replace those carb hits from bread, pasta etc.

Absorbtion of meds can change, so it is wise to keep an eye on it to stay in control.

Ask us lots of questions, come and rant if you need too, there are plenty of folks ready to help.
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- Symptoms from 2001, maybe before. Across 20+ years, these have included, vomiting, D, migraines, headaches, recurrent miscarriage, inflammation problems (failure to heal from injuries) brain fog, anxiety and more!
- Elimination diet using Atkins, 2003 – excluded wheat, caffeine, quorn. 2005, excluded sesame, alcohol
- Started diagnosis route April 2012, blood tests, endoscopy – said negative, gluten challenge, clearly something very wrong, had to stop after 3 weeks.
- Gluten Free, August 2012, Corn Free, September 2012. Removed most processed gluten free foods.
- Genetic testing, December 2012 – negative – Diagnosis – Non Celiac Gluten Intolerance (NCGI)
- Elimination diet, January 2013 – all of the above plus dairy, legumes, all grains, sugar, additives, white potatoes, soy. Reintroducing sloooowly now. Health improving.
It's not that I'm so smart, it's just that I stay with problems longer. ~Albert Einstein Posted Image

#8 IrishHeart

 
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Posted 12 May 2013 - 04:23 AM

I had a few other thoughts for you, Michael.

An exceptionally good book for information is

Real Life with Celiac Disease
by Melinda Dennis and Daniel Leffler

http://www.reallifew...iacdisease.com/

Tons of great information, including dietary and nutritional advice (even a discussion about anxiety) from over 50 celiac specialists.

as for travel tips, I suggest you read this thread!

http://www.celiac.co...staying hotels



and look up:

Find Me Gluten Free.com , a website that has listings of gluten-free places to dine.

You can do this!
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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

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"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


#9 slickdaddy0077

 
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Posted 12 May 2013 - 05:25 AM

Wow! Thank you all for the replies to this post.  Glad to see know that this will be my new home for coping and for support and information to get on with my life.

 

So yeaterday, I went to 'New Seasons Market' by my house and did a little bit of shopping.  I can't really stock up on groceries because of my travel schedule.  I will be out of state and even out of the country form tomorrow until the end of Seeptember. A few weeks in between at home so that doesn't make much sense to let a bunch of food go bad. I have no idea what I'm going to do when I get to Russia the end of summer. Haha.

 

What I did buy was 2 lbs. of 10% fat fresh ground beef, gluten free corn tortilla salad bowls, organic tomato sauce, fresh tender organic sweet peas, pamasean cheese, sour cream, gluten-free hot sauce, and assortment of gluten-free chips, organinic triple washed organic lettuce, gluten-free refried beans, onion powder, garlic powder, bleu cheese crumbles and made some sort of a Mexican style hodge podge of a meal out of it. I thought that I could eat 2 of them but after the first one, I was as full as I wanted to be. I put the other one in the fridge for today.  Wow, was it it good!  As strange as this might sound, I waited for the enevitable bloated and gassy, nausiating feeling that normally would come from eating something like that but, It never came.  I feel pretty safe and also very satisfied that this could be a starting point or a baseline if you will for being the 'go to' staple in my diet for now.  I will venture out soon and try other things as my situation will allow.

 

I have also been checking my blood pressure more frequently and it hasn't changed. It is alway consistantly in the 120 / 80 range.  It may fluctuate slightly but just a few points to the lower side. 

 

Can anyone recomend a smart phone app for gluten-free free food checker and places to buy?  I live in a 100% digital world and an app would be a real life saver for me especially wile traveling. One that knows your current location and can give the location of gluten-free friendly stores?  I love to eat beef jerky while traveling. It's good and tasty comfort food and a good source of protein so I googled my favorite brand, "Old Trapper" They don't list if their products ar gluten-free so I will call them since it is manufactured about 15 miles from where I live.  1 - very large bag of the old fasioned style will last me a couple of days.  I will not get the teryaki flavor anymore (My favorite) for obvious reasons.

 

Anyway, abdominal swelling is down 100% but it only takes one little mistake and its back to the drawing board.  Btw, I was in a pinch on Friday and stopped in Subway. I ordered a footlong Philly Cheese Steak sandwhich without the bread. You should have seen the look on this young girls face. "You have to order bread sir!", No I don't young lady. I asked them to put the meat and cheese in a salad bowl and heat it up. (They charged me an extra $1.50 for the bowl.) Are you kidding me? Then she made a bed of lettuce, poured the meat and cheese on top of the lettuce and I added salt and pepper, pickles, cucumbers and a dash of mayo. It was actually pretty decent and filling and I had no side effects. Does anyone know if this is a viable alternative when in a bind?

 

Thanks again for all of you help and the links that you have posted on her so far.  I'll check back in a few days. I need to get creative today and come up with something quickly to take on the road. I always get motel / hotel rooms with a fridge and microwave so now I need to bring the ingredients. I will be 40 miles from any civilzation for 3 days so it's all on me to make this happen.

 

Cheers for now. ;)


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Thank you! :D

 

Michael L.


#10 ravenwoodglass

 
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Posted 12 May 2013 - 05:29 AM

You have already gotten some great advice. I do have to add though to check your Xanax. I take the generic form, alprazolam made by Sandoz, because the name brand was found not to be gluten free. That may have changed since I have been on it for a while. The company that makes what you take should be either on the label or you can ask your pharmacey for the names for any script meds you take. Then call the company and check to be sure all meds you are taking are gluten free. You can get phone numbers on the internet.

You may find after a time gluten free that you no longer need the antianxiety meds but do be sure not to stop them suddenly.


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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)

#11 slickdaddy0077

 
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Posted 12 May 2013 - 05:37 AM

Thank you ravenwoodglass! I will researche that now. thank you so much. I never even considered that. I guess rhat the binders in the pills could contain gluten. Checking my BP meds too.


  • 0

Thank you! :D

 

Michael L.


#12 GottaSki

 
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Posted 13 May 2013 - 06:57 AM

Welcome Michael!!!

 

You are off to a great start - with time it gets easier to pack some of your own food even on the go -- if you have In and Out near you --- that is our family's go to fast food.  The only gluten in the place is the buns and they have a very good "gluten" policy.  We still say we have a wheat/gluten allergy - celiac is not an allergy -- but telling any server you have allergies usually raises the level of caution -- especially in places where waitstaff are a bit tired of the "fad" gluten free diet folks.  We save the heals of our gluten free bread loaves to use as burger buns...but these can be eaten 'protein style" (wrapped in lettuce) in a pinch.

 

Stay safe....make sure you read the "Newbie 101" thread and ask as many questions as you need -- the transition is tough but it happens much more quickly when you ask questions.

 

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 :)


#13 rene83

 
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Posted 13 May 2013 - 03:23 PM

Welcome Michael. I too am a new glutard as my friends call me (I LOVE that term lol) and am a mere 10 days into my diagnosis. I think I got luck as I have a dog who is allergic to 23 food items one being wheat so I learned how to read the heck outta labels. Some things I have found which hopefully will helps you

1. These wondermous people on celiac.com- full of info

2. If you have a smart phone get the app "ShopWell" you can add your allergens etc and scan the barcodes of items you are unsure of. It helps make it easier so you can feel confident in your choices

 

As for what sounds to me liek gluten withdrawals, holy molybdenum they suck. No nice way to put it. My physician says they last for about 14 days. With my withdrawals I have been depressed, happy, sad, EMOTIONAL (Seriously I cried over bacon then later over lemonade), I have had some GI trouble as my body is adjusting and some extreme exhaustion I can not bear.

 

If you like to cook, GREAT that will help you as the days of fast food are sooooo long gone so if you don't plan a meal you are up the creek so to speak. If you don't like to cook, try to find a way to enjoy it. Recently I have invested in a ton of books to learn more about the disease as well as cookbooks so I can resume normalcy ASAP in my diet (I got gluten free for dummies, Elizabeth Hasslebeck's book, and a couple others).

 

This is a lifestyle change which is extremely overwhelming, but you can do it and will be better for it int he long run. I wish you the best. Let me know if I can be of any help for you although I am a neophyte in the gluten free world  :rolleyes:


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#14 slickdaddy0077

 
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Posted 15 May 2013 - 04:45 AM

Into the 2nd week gluten-free and here is what's going on.
Decreased appetite
Sharper senses
Better concentration
Memory is better
Calmer
Very very thirsty
Vivid erotic dreams
Regular BM once every morning
Elevated mood
Sense of increased Lobito
Cravings for salt or salty foods or beverages
Muscle cramping (while climbing cell towers) which I don't know if its the warmer weather or a lack of potassium, dehydration or all of it.
My meds are stronger than usual. No surprise there. I'm going to get in to my dr. ASAP for blood level tests.
Ringing in my ears constantly. I think that is a symptom of one medication that I take when there is too much in the blood stream.
Did I mention thirst?? Holy cow
The invisible cloud in my brain seems to be going away. I didn't realize how bad it was until now
Skin is drying and peeling in some areas

I did have a minor setback though. I ate some of my favorite beef jerky and what a big mistake that was. Oh my. Abdominal pains, bloating and swelling. I threw the rest in the trash and now I'm paying the price. I read the label and all was ok but they do not say what is in their recipe as far as "other flavoring" is concerned. I guess that would be giving the completion their secret ingredient which sets them apart from the rest. Well it didn't agree with me at all.

I just wanted to share my experience and maybe get some feed back on this.

Thank you again everyone.
  • 0

Thank you! :D

 

Michael L.


#15 GottaSki

 
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Posted 15 May 2013 - 06:58 AM

Good Morning Michael!

 

The first days, weeks and sometimes months or years can provide a bunch of confusing symptoms.  You are doing the best thing possible...document!  Write down symptoms as well as the food eaten that day -- this is a bit better than just a food log as you will see patterns emerge should other foods be a problem for you.

 

Jerky seasoning can be tough -- it may have had gluten or just some other preservative that your gut did not like.  Drink lots of water -- can't remember if we suggested digestive enzymes and probiotics while you are healing?  Also, if you get got by gluten -- taking charcoal asap can help with the glutening symptoms -- help - not take them away.

 

Be sure to drink A LOT of water today.

 

My body goes thru craving extra salt and I get very hungry sometimes...I listen to my body and feed it more and add salt -- I have found these extreme hungries are usually followed by feeling better.

 

Also, you may become more sensitive to gluten as time passes -- yep, bummer, but it happens -- so cross contamination may not be a huge problem for you yet, but as you have time gluten free your body becomes more vehement when a teeny tiny amount gets in.

 

Keep updating...it is a great way to keep a history of your progress...and kind of funny to look back at as time passes.

 

Have a great day...drink more water : )


  • 0

-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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