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Just Diagnosed....not Really Sure What To Do Now.


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16 replies to this topic

#1 TheHeartRN

 
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Posted 23 March 2013 - 05:04 PM

So basically I had an EGD with biopsies done a couple of weeks ago because of having severe abdominal pain and loose stools. The doctors office called me Thursday and left me a voicemail asking me to call them back in regards to my biopsies. I of course was not able to answer the phone at that time and by the time I was able to talk the office had closed. So being in the medical field I knew the office wouldn't call you if the biopsies were normal, they would just wait until your follow up. So the whole night I just sat there and worried until the next day when I could call. I had convinced myself that if anything I just had severe H. Pylori. But boy was I wrong. They told me oh you have Celiac Disease, just start eating gluten free. Being a nurse I some what knew what Celiac Disease was. But I am not familiar with it. Especially since now I have to start living with it. When I first found out I was needless to say SCARED! I am 25 years old and have something I am going to have to live with for the rest of my life. And I am just saying that scares the h*ll out of me. My husband and I went grocery shopping today and boy was I overwhelmed. There was one moment I seriously just about burst out into tears. I mean I had no idea Gluten was in so many things! I guess now I need guidance. I go for my follow up appointment this Tuesday with my GI doctor. What should be some of the questions I should ask him? Should I go see a dietitian? I am absolutely clueless. Thank you in advance for help!!


  • 0

Kelley  :rolleyes: 

Diagnosed 3/22/13


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#2 GottaSki

 
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Posted 23 March 2013 - 05:59 PM

Hi Again...not sure you saw my welcome in the other thread you posted in so....WELCOME!

 

Celiac Disease diagnosis is very scary -- but given time you will learn to eat safely.  The transition is tough.  For now...read as much as you can...I'm in the middle of making gluten-free pizza for many teens so if no one else says hello - which I doubt - I'll check back in on you later or in the morning.

 

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 :)


#3 shadowicewolf

 
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Posted 23 March 2013 - 06:08 PM

It can be hard... certainly... First thing is first.... Go read the stuff on here:

 

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

 

Stick with a whole foods diet for now to give your gut a chance to heal.

 

Ask the GI if you can have a vitamin panel done to see what your levels are. Celiac can cause deficiencies.

 

As for a dietitian, that's a hit or miss. Some are helpful, while others are not.


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#4 Lisa

 
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Posted 23 March 2013 - 06:26 PM

I would be willing to bet that most of us have had a meltdown in the middle of a grocery aisle.  And then, you will get angry and then you will learn to deal with the cards you have been delt.  And soon, once you feel better, you will realize that it's not so bad after all. ;)

 

It's a process.  It takes time and much is trial and error.  But, in the end, it's the road to good health.

 

Welcome!


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Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

#5 1desperateladysaved

 
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Posted 23 March 2013 - 06:41 PM

Welcome Heart,

 

Now you are on a path.  Keep walking.  There will be bumps and twists, but you will be heading on to recovery.  That is good.  Yeah, I nearly sobbed in grocery stores.  When I feel clear and strong, when I enjoy me food, when I am in control, I am very happy.

 

I hope you will get that feeling of happiness soon,

Get Well,

Diana


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#6 mushroom

 
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Posted 23 March 2013 - 06:56 PM

Just to add another welcome to the world of gluten free :)

 

Yes, the supermarket meltdown is practically a mandatory rite of passage ~~ the full realization of "the reading of labels".  So it's generally better when you first start out not to get too involved with processed food and labels - just do the basics like pasta, bread, baking mix until you feel better able to cope.  And your intestinal tract will probably thank you too, for not having to adjust to too many different kinds of foods that it is not used to, all at once, especially while it's still healing.

 

As soon as you can find the time, remove everything from your pantry and check for gluten.  Give opened food to friends; you may want to consider a food bank for unopened stuff, or a charity of your choice.    Only put back in the pantry things that are gluten free.  Oh, wait a minute, you didn't say whether or not you were going to make your house gluten free.  It does avoid a lot of potential cross-contamination to do so, and your husband will find out what a good cook you are when he can't tell if it's gluten free or not :)   He can eat gluten out of the house and eat gluten free at home (so long as he brushes his teeth before he kisses you. :P


  • 2
Neroli


"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"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(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 Lisa

 
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Posted 23 March 2013 - 07:06 PM

GREAT Post  Mushroom.  Good Stuff  :)


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Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

#8 TheHeartRN

 
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Posted 24 March 2013 - 05:01 AM

Thank you guys! I have my moments I am like I can do this, then I think about all the changes and obstacles my family and I will have to overcome.

As for planning on making the house gluten free I am. As much as possible anyways. My husband is very supportive. So he said if this is what we have to do then we will. I have a 1 year old so something's I won't be able to change right now. Like all of her snacks. And her bread. Mainly because gluten free bread is so darn expensive.

We have already been cutting out a lot of our carbs like pasta etc.... and have been eating more fresh and frozen vegetables. But I know that doesn't even start to scratch the surface.

We did go to Whole Foods yesterday and picked up some gluten free snacks and stuff for me to carry to work since I work 12 hours a day.

I guess I was just hoping for a diagnosis I could just some medication for and it be solved. But thank you all for the encouragement, because I need it.
  • 0

Kelley  :rolleyes: 

Diagnosed 3/22/13


#9 kareng

 
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Posted 24 March 2013 - 05:41 AM

What about things like Chex cereal as a carry along snack for the little one? Rice cakes ( even the non- gluten-free ones probably don't contain much gluten & wouldn't spread much gluten around). They are gluten-free and my " babies" ( now 17 &20) loved them. Switch her over to more naturally gluten-free snacks that the "regular" people eat. Maybe instead of so much bread, she would like rice? Corn pasta seems to be cheaper when you can find it ( Deboles is one brand). Nature valley has almond crunch bars that are gluten-free ( with granola bars).

Read around. See what others are fixing to get some ideas.
  • 0

LTES

 
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#10 Adalaide

 
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Posted 24 March 2013 - 06:44 AM

I spent about a year babysitting my cousin from right after his first birthday until right before his second. During that time he was 100% gluten free in our house and was here for a bit over 40 hours a week. A toddler doesn't need things like bread or gluteny cereals to survive, he was as happy as a toddler could be expected to be learning to test limits. I'm sure there are plenty of tips in the parents section on snack and such, but I mostly stuck with Envirokids cereals and fruit or fruit snacks.

 

In the beginning if it is all too overwhelming, just take a deep breath and remember that you just have to do this today. Worry about tomorrow when tomorrow comes. If you take it a day at a time it is a lot less daunting.


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"You don't look sick or anything"

"Well you don't look stupid, looks can be deceiving."

 

Celiac DX Dec 2012

CRPS DX March 2014


#11 nvsmom

 
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Posted 24 March 2013 - 08:28 AM

Welcome to the board.

 

I recommend some good books like Dr. Green's book... I can't remember the title but it helped me a lot.  Raid your library. It's amazing how many books on celiac and gluten-free cookbooks there are now.  It's a trendy disease!  LOL  ;)

 

I recommend finding a whole foods store or hit the organic aisles of your grocer (if they have one) and stock up on a few gluten-free baking treats (cake mix, pancakes, cookies) as I found those very helpful at first when I was learning to navigate gluten-free cooking. The internet is great for recipes too - I love google. 

 

Ditto what the others said about your daughter and her snacks. Wheat products have very little nutritional value, it has to be added in after the fact usually. Any nutrients in it can be found in better sources like greens and meats anyway. 

 

You might want to have her tested for celiac before going gluten-free if she goes gluten-free too. celiac is genetic and she could have it even if not showing symptoms.  Also, very young children will often have false negative tests so if her blood work is negative, and she continues to eat gluten, you should have her checked every couple of years.

 

Best wishes. I hope you have a speedy recovery and manage to skip any form of withdrawl.  Good luck.


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Nicole Posted Image

"Acceptance is the key to happiness."

ITP - 1993
Celiac - June, 2012
Hypothyroid - August, 2012

CANADIAN

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#12 BZBee

 
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Posted 24 March 2013 - 02:27 PM

I would be willing to bet that most of us have had a meltdown in the middle of a grocery aisle.  And then, you will get angry and then you will learn to deal with the cards you have been delt.  And soon, once you feel better, you will realize that it's not so bad after all. ;)
 
It's a process.  It takes time and much is trial and error.  But, in the end, it's the road to good health.
 
Welcome!


I smiled when I read this. My first trip to the grocery store after diagnosis ended in tears in the tea section. I had my list and thought I was ready, but I suddenly got overwhelmed by all the labels. I'm newly diagnosed and have been gluten free for a month. My grocery trips have improved.
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#13 TheHeartRN

 
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Posted 24 March 2013 - 05:33 PM

I am hoping that this week will be a little better! I go to the doctors on Tuesday so I am hoping he can give me a little more knowledge than just what I am getting off the internet. But something I am wondering is if on the label if it does not list wheat, barley, rye etc and it also does not say it may have had cross contamination does that mean that it is gluten free even though it does not say it anywhere on the package?


  • 0

Kelley  :rolleyes: 

Diagnosed 3/22/13


#14 psawyer

 
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Posted 24 March 2013 - 05:46 PM

As a rule, if the label does not have obvious gluten, then the product is safe for us to eat. I consider such products to be gluten-free.

There is no regulated meaning for "gluten-free" in the US. Most companies obtain at least some of their ingredients form third parties, and do not test to possible contamination. They don't make a gluten-free claim on the label to protect themselves legally in the unlikely chance that a supplier provides something with undetected (and certainly unintended) gluten content.
  • 0
Peter
Diagnosis by biopsy of practically non-existent villi; gluten-free since July 2000.
Type 1 (autoimmune) diabetes diagnosed in March 1986
Markham, Ontario (borders on Toronto)

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#15 mushroom

 
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Posted 24 March 2013 - 05:52 PM

I hate to be a Debbie Downer, but unless your doc is the exception to the rule, don't get your hopes too high about the help you will be offered.  Many of them will refer you to a dietitian who may, or may not, know more about celiac disease than you do.  Or he may tell you to do what you have done and consult Dr. Google :D   Nutrition barely gets a mention in medical school, thus most doctors will tell you your problem is not food-related :(   At best they will refer you to an allergist as if all food problems are allergies. :rolleyes:


  • 1
Neroli


"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"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(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

Celiac.com - Celiac Disease Board Moderator




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