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Celiac Diagnosed Just Today!


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24 replies to this topic

#1 MommyMonica

 
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Posted 02 June 2011 - 08:23 PM

Hey fellow celiac-ers?!

Been ill for quite some time and just found out today I have celiac disease. I have had IBS, acid reflux and gastritis for years, but this is totally new to me. I am new to the gluten-free lifestyle. Am very nervous and overwhelmed by everything I am having to change and adjust. But excited and actually have HOPE now for getting out of the bed and playing with my 2 year old and 4 year old and enjoying life again.

But, I need YOUR help!!! The good, the bag and the ugly... share it all with me. I am open, ready and willing to take back control of my LIFE!

Monica
  • 2
IBS - 2000
Bipolar -2000, again in 2002, again in 2010, again in 2011 and started meds/psychotherapy treatment March of 2011.
IBS, acid reflux, gastritis - 2005
Fibromyalgia - March of 2009, started treatment in January of 2010.
Celiac - June 2, 2011 biopsy
Gluten free - June 3, 2011

Hoping to feel better any day now. Feeling that there is a connection between fibromyalgia and bipolar to celiac.

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#2 kareng

 
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Posted 02 June 2011 - 08:30 PM

Hey Monica!

Read around on this forum. Use the google in the top right corner. Most very question you have gets answered every week it seems like. I'm hoping for something really odd or unusual.

It's a lot to try to get at once.
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#3 Skylark

 
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Posted 02 June 2011 - 09:59 PM

Welcome, and don't panic. B)

Shopping can be overwhelming so I always tell new celiacs to shop the outside of the store and stick to simple foods. Label-reading will take a little practice and research. It's easy to tell that a banana or a potato is gluten-free. I detour around the bakery section. I feel like an invisible cloud of gluten is hovering in the air. :P

I mostly live on fruit and veggies (fresh or frozen without sauces), potatoes, rice, beans, meat, nuts, and eggs to cook. I often grab some rice cakes, Missino corn tortillas, or plain corn chips. I'd suggest you skip the milk for now, as many new celiacs are lactose intolerant or have other digestive issues with dairy. If you find you can tolerate it, cheese is a great snack.

The ugly is that it's hard to find safe convenience foods, gluten-free specialty foods are horribly overpriced, and it's difficult to eat out. Gluten lurks in unexpected places and I've gotten sick at restaurants. I cook almost all my own food. The more I stick to whole, unprocessed foods that I know are 100% gluten-free, the better I feel.

In the kitchen I got a new cutting board for gluten-free food. I also got rid of my seasoned wok, as it had gluten-containing soy sauce in the seasoning. I got a new toaster and treated myself to a rice cooker too.

Best of luck to you!
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#4 gluten free overseas

 
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Posted 03 June 2011 - 12:24 AM

I'm only a couple of months into the celiac lifestyle too and was also very very sick before it.
The first thing we did was buy a grill. You can even get a smaller, inexpensive one if money is an object. Get some chicken breast, marinate it a couple of hours in garlic, olive oil, some spices, a little lemon (put chicken and marinade in a zip lock bag in the fridge), and it's not very expensive like some gluten free specialty foods at the store. My two young children love to dip grilled meat in ketchup, so it goes over with kids too.

As time goes by and you feel better--just remind yourself that your children are young enough that they will remember you as a WELL person. They will not look back on their childhood and mom was sickly. That keeps me from cheating--never eating gluten again!
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#5 Cara in Boston

 
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Posted 03 June 2011 - 05:06 AM

My son (6) and I went gluten free in March. We started out buying all kinds of gluten-free junk food (even though this was not part of our previous diet) and sort of went crazy.

Then we just calmed down and got back to eating regular food. I was surprised at how gluten-free we already were - most dinner menus didn't have to change at all.

I did need to find a couple of gluten-free alternatives - especially for my son (packing a cold lunch is hard if you don't have bread). We asked around and read lots of reviews so we could skip all the bad gluten-free stuff and just go right to the good stuff.

Bread and Bagels: Udi's
Pasta: Ancient Grains Quinoa-Corn
Pancake Mix: Pamela's

Got the kitchen all cleaned out, replaced some old, worn items (that probably needed replacing anyway), sorted through the medicine cabinet and that was about it.

It really does get easier and after a few weeks, you realize that it is just food . . . it is not really a big deal if you can't eat that delicious smelling warm bagel in the coffee shop.

Keep some "emergency" snacks in your purse and car . . . there will be times when you simply can't find anything to eat. We keep a stash of nuts and Lara Bars handy.

Besides feeling better off gluten, you whole diet is likely to be healthier. You will soon be feeling great.

Eating out is a challenge. We've been to several birthday parties and 2 weddings. Again, what I thought was going to be a big deal really wasn't . . .

Cara
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#6 Callum06

 
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Posted 04 June 2011 - 07:57 PM

Hi Monica!

I am new to this forum and new to celiac. I was also diagnosed this week. I have not had my biopsy (that is on Monday), but my blood was positive and I have been very sick for the last month (additional lactose issues for the last 1.5 years). I am also a mother to two young children (boys), ages 3 and 5 so it sounds like we are in a similar boat. I am usually out on the couch for a period of every day and I feel so incredibly guilty, even though they have been amazing about it. I look forward to reading what other have to say and getting some support here! While I am sorry you are going through this, I can't tell you how good it feels to connect with someone in a similar circumstance. I don't know anyone with this and while all my family and friends mean well, their words are a bit empty for me. They have no idea...

Ami
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#7 thleensd

 
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Posted 04 June 2011 - 08:42 PM

+100 to shopping the perimeter of the store! A lot of gluten-free processed foods aren't that good for you anyway... so, to avoid the crying breakdown in the supermarket while trying to figure out what to buy (been there, done that! ;-) ) Fruits, veggies, meats are a great way to start. Rice and beans, too. Then work in other things as you find them.

Staples for me: San J Gluten Free Tamari (soy) sauce, brown cow yogurt (lots are gluten-free, but a lot of them have junk in them like corn starch - yuck), and quick-grab snacks like Lara Bars.

There's SO much more gluten-free food available now...try to resist the urge to try it all - there are some good posts here about "favorite snacks" etc if you search.

I have a little bag I grab whenever I'm leaving the house. It has nuts and dehydrated fruit and a prana bar in it. If I'll be out for a while, I also add a couple of pieces of fruit and maybe an ice pack plus yogurt.

Welcome.
  • 1
Diagnosed 2/12/09 by biopsy after years of anemia, neuropathy, dizziness, brain fog, pain and more.
Negative blood tests (following gluten light diet)

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#8 MommyMonica

 
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Posted 09 June 2011 - 08:01 PM

Wow! Hi guys...

I was waiting for some sort of email to alert me I had gotten replies, but never got anything. Decided to scroll back to my post and poof... thank you for your replies.

Funny about breaking down in the grocery store. Went shopping for my first time this past Tuesday night and felt like a crazy person talking to myself and crying constantly wiping tears from my face. Sure got a lot of looks. And got angry and irritable with myself for being so sick. It's nice to hear others in the same boat is exactly right, even if it's not a boat we want to be riding in.. more like sinking in.

Since going gluten free I have felt WORSE!! Getting more of the same symptoms I've had, but exacerbated. I was starting to think I was lactose intolerant as well. Now that makes sense about the damage and the dairy making it worse. I will cut it out now that I know. I also was starting to think I was glucose/fructose intolerant because it seemed like sugar was bothering me too. Now, I don't know if it's dairy, sugar or both.

I literally spend almost half the day in bed w my husband setting up snacks and drinks for when the children get up and they play in the playroom and I put on a movie (or two) for them while I lay back down in excruciating pain. I only get up because my children are ready for lunch. Yes, I said LUNCH! So, we go downstairs at that point and I am very irritable, in pain and I don't want my kids to remember me like this. Luckily, yes, they are still so young, but I have already seen the damage I have caused them. I feel like a lousy neglectful mother. And we cannot afford daycare at this point, especially now with all our rising medical costs..

I was also diagnosed with fibromyalgia and bipolar, but I am now thinking it is all connected to celiac. My chiropractor is now talking about NAET but I believe it is kind quacky considering that's for allergies. And celiac is not an allergy intolerance, it actually damages our insides and can kill us, from what I have been reading!!! :-O Oh my!!! Depression has been rampant even more now so knowing I am truly really ill! I am glad to know it wasn't all 'in my head' but I am definitely ready to start feeling better.

I will have been gluten free for a week tomorrow - minus the kisses I get from my little ones and husband who are still eating gluten filled cookies, crackers, etc...

I have noticed some of my junk foods are already gluten free so that was exciting!!! And most of the meals I planned already were gluten free or easily made gluten free so that was nice. But, today I became even more discouraged as I could hardly move... let alone get up and walk and take care of my children..

Now we are talking about daycares no matter the cost to help until I do feel better... which I heard can take a long time, sigh. I just turned 30 in March... I am TOO young to be in this much pain!!!!!!!!

Ok... I will check this more often so I don't go posting a ton, sorry.
  • 0
IBS - 2000
Bipolar -2000, again in 2002, again in 2010, again in 2011 and started meds/psychotherapy treatment March of 2011.
IBS, acid reflux, gastritis - 2005
Fibromyalgia - March of 2009, started treatment in January of 2010.
Celiac - June 2, 2011 biopsy
Gluten free - June 3, 2011

Hoping to feel better any day now. Feeling that there is a connection between fibromyalgia and bipolar to celiac.

#9 Callum06

 
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Posted 10 June 2011 - 07:44 AM

Monica -

I also have a bipolar disorder/severe anxiety (soft IV, not included in DSM). I have suddenly begun to wonder if there is a connection as well. I don't know if it is psychosomatic, but I have been gluten free going on day 5 now, and my energy and mood has climbed a great deal. This could have nothing to do with being gluten-free or everything to do with it. No idea! Still waiting on my definitive biopsy results, but with the positive blood panel and the scalloping in my intestines, I have little hope it is anything else. I told my husband if there is ANY silver lining, it is the potential to taper off my medication for bipolar disorder in the future. That would make me SO happy!

I'm really glad I found this group. I'm sorry you are so incredibly exhausted. It is great that you are working on getting treatment and finding the cause so you can get back into life. Children are very forgiving, especially when they start to understand why you are down all the time. I think you'll be surprised. You are by no means damaging them... whatever behaviors they have due to your current state will dissolve in the future - trust me!

I had surgery that went awry when my youngest was less than two years old. I was on pain medication for four months, basically an invalid unable to get out of bed. I had a catheter bag hanging off my leg... it was awful. Both kids started acting out because I couldn't do anything with them. Fast forward two years and that is all a thing of the past. They have no recollection and the behaviors they adapted during that time are gone.

Sorry if this is all jumbled! I have to go to school shortly and the kids are pulling their normal shenanigans!

Wow! Hi guys...

I was waiting for some sort of email to alert me I had gotten replies, but never got anything. Decided to scroll back to my post and poof... thank you for your replies.

Funny about breaking down in the grocery store. Went shopping for my first time this past Tuesday night and felt like a crazy person talking to myself and crying constantly wiping tears from my face. Sure got a lot of looks. And got angry and irritable with myself for being so sick. It's nice to hear others in the same boat is exactly right, even if it's not a boat we want to be riding in.. more like sinking in.

Since going gluten free I have felt WORSE!! Getting more of the same symptoms I've had, but exacerbated. I was starting to think I was lactose intolerant as well. Now that makes sense about the damage and the dairy making it worse. I will cut it out now that I know. I also was starting to think I was glucose/fructose intolerant because it seemed like sugar was bothering me too. Now, I don't know if it's dairy, sugar or both.

I literally spend almost half the day in bed w my husband setting up snacks and drinks for when the children get up and they play in the playroom and I put on a movie (or two) for them while I lay back down in excruciating pain. I only get up because my children are ready for lunch. Yes, I said LUNCH! So, we go downstairs at that point and I am very irritable, in pain and I don't want my kids to remember me like this. Luckily, yes, they are still so young, but I have already seen the damage I have caused them. I feel like a lousy neglectful mother. And we cannot afford daycare at this point, especially now with all our rising medical costs..

I was also diagnosed with fibromyalgia and bipolar, but I am now thinking it is all connected to celiac. My chiropractor is now talking about NAET but I believe it is kind quacky considering that's for allergies. And celiac is not an allergy intolerance, it actually damages our insides and can kill us, from what I have been reading!!! :-O Oh my!!! Depression has been rampant even more now so knowing I am truly really ill! I am glad to know it wasn't all 'in my head' but I am definitely ready to start feeling better.

I will have been gluten free for a week tomorrow - minus the kisses I get from my little ones and husband who are still eating gluten filled cookies, crackers, etc...

I have noticed some of my junk foods are already gluten free so that was exciting!!! And most of the meals I planned already were gluten free or easily made gluten free so that was nice. But, today I became even more discouraged as I could hardly move... let alone get up and walk and take care of my children..

Now we are talking about daycares no matter the cost to help until I do feel better... which I heard can take a long time, sigh. I just turned 30 in March... I am TOO young to be in this much pain!!!!!!!!

Ok... I will check this more often so I don't go posting a ton, sorry.


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#10 jenngolightly

 
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Posted 10 June 2011 - 08:42 AM

I was going to tell you that it's common to cry a lot when you go grocery shopping. I see that you had your breakdown already. It probably won't be the last. :(

I cried a lot in the beginning because I was used to going to the store and wandering around to find things to buy. When I did that after the diagnosis, I couldn't find anything to eat! Everything I was used to buying was now on the no-no list so I would just leave empty-handed and in tears. I couldn't even stand to buy milk and meat because I didn't have anything to go with it.

What I learned to do was make my list beforehand and zip in and out of the store. No more wandering. I looked ahead of time to see what would be gluten-free and aim straight for it. After a while, you'll learn what's safe. You'll see that many brands of potato chips are okay. Snickers are okay. Tinkyada pasta tastes good and even your family will like it. Most pasta sauces are okay. You'll alter your eating habits, but you won't feel deprived (unless you start finding other food intolerances/allergies like many of us do - but don't get worried about that right now).

It's a natural thing to go through the grieving process. This is a very traumatic thing that's happening to you and your family. Let the process happen and don't rush it. Some days will be better than others, but always bring Kleenex with you when you go shopping!
  • 0
Jenn
dx celiac 9/2007: gluten-free 9/2007
corn intolerant: corn-free 5/2010
nut allergy: nut-free 8/2010

#11 MommyMonica

 
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Posted 10 June 2011 - 10:04 AM

Callum, I am def now thinking even more there is a connection with bipolar/celiac. I really think that what we eat effects our general well being in general. So, that would make complete sense!

Thank you for sharing your story about your surgery and your kids. I have hope they won't remember me like this, thank you!

Kleenex, good to remember to take next time I am shopping. I am going to attempt a specialty store next time that carries lots of gluten free stuff. I am craving a sandwich so I want some gluten free bread and fresh deli meat and cheese. Although, I am thinking dairy is bothering me right now bc of all the damamge already inside. But yet I still had my dairy probiotic this morning with Oikos yogurt. :-/

Been eating lots of chips... still trying to figure out lunch items. If I have leftover dinner, then I do that. But, I seriously don't want to be cooking a ton everyday. Maybe when I am feeling better, but not right now. So, I think I am just going to stock up on gluten free pre-made stuff until I do start feeling better. Then, I won't mind cooking every meal, I love cooking and miss cooking my gourmet meals.
  • 0
IBS - 2000
Bipolar -2000, again in 2002, again in 2010, again in 2011 and started meds/psychotherapy treatment March of 2011.
IBS, acid reflux, gastritis - 2005
Fibromyalgia - March of 2009, started treatment in January of 2010.
Celiac - June 2, 2011 biopsy
Gluten free - June 3, 2011

Hoping to feel better any day now. Feeling that there is a connection between fibromyalgia and bipolar to celiac.

#12 jenngolightly

 
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Posted 10 June 2011 - 11:35 AM

Callum, I am def now thinking even more there is a connection with bipolar/celiac. I really think that what we eat effects our general well being in general. So, that would make complete sense!

Thank you for sharing your story about your surgery and your kids. I have hope they won't remember me like this, thank you!

Kleenex, good to remember to take next time I am shopping. I am going to attempt a specialty store next time that carries lots of gluten free stuff. I am craving a sandwich so I want some gluten free bread and fresh deli meat and cheese. Although, I am thinking dairy is bothering me right now bc of all the damamge already inside. But yet I still had my dairy probiotic this morning with Oikos yogurt. :-/

Been eating lots of chips... still trying to figure out lunch items. If I have leftover dinner, then I do that. But, I seriously don't want to be cooking a ton everyday. Maybe when I am feeling better, but not right now. So, I think I am just going to stock up on gluten free pre-made stuff until I do start feeling better. Then, I won't mind cooking every meal, I love cooking and miss cooking my gourmet meals.

Warning - you might start feeling yucky if you load up on gluten-free foods that substitute for all of the previous gluten foods. You'll also gain weight! Many of us think that eating gluten-free will make you lose weight. Not so!!! Processed specialty gluten-free foods can be very high in calories. (I'm talking about gluten-free foods that are made for the gluten-free diet, not naturally gluten-free food like veggies, fruit, and other food found on the perimeter of the store.) There are some very yummy gluten-free frozen dinners that cost a ton and weigh you down. gluten-free bread can be high in calorie, very expensive, and mighty tasty (after you forget what real bread tastes like) :) There are subs for oreos, waffles, pretzels, cakes, muffins, and bagels. Unfortunately, as your tummy fills up, your wallet gets skinny, and your body will most likely start to revolt. If you read some of the posts by newbies on this board, you'll find that they continue to have problems until they give up the processed foods for awhile and focus on the perimeter (but no dairy).

You'll be able to cook again when you get your energy up. You'll find ways to sub foods for ones you used to use. I found new foods that I had never heard of before and they're great!

Good luck. The people here are great. I'm glad you found this forum right when you're starting. :D
  • 0
Jenn
dx celiac 9/2007: gluten-free 9/2007
corn intolerant: corn-free 5/2010
nut allergy: nut-free 8/2010

#13 Judy3

 
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Posted 10 June 2011 - 01:22 PM

Warning - you might start feeling yucky if you load up on gluten-free foods that substitute for all of the previous gluten foods. You'll also gain weight! Many of us think that eating gluten-free will make you lose weight. Not so!!! Processed specialty gluten-free foods can be very high in calories. (I'm talking about gluten-free foods that are made for the gluten-free diet, not naturally gluten-free food like veggies, fruit, and other food found on the perimeter of the store.) There are some very yummy gluten-free frozen dinners that cost a ton and weigh you down. gluten-free bread can be high in calorie, very expensive, and mighty tasty (after you forget what real bread tastes like) :) There are subs for oreos, waffles, pretzels, cakes, muffins, and bagels. Unfortunately, as your tummy fills up, your wallet gets skinny, and your body will most likely start to revolt. If you read some of the posts by newbies on this board, you'll find that they continue to have problems until they give up the processed foods for awhile and focus on the perimeter (but no dairy).

You'll be able to cook again when you get your energy up. You'll find ways to sub foods for ones you used to use. I found new foods that I had never heard of before and they're great!

Good luck. The people here are great. I'm glad you found this forum right when you're starting. :D



Isn't that the truth... I'm into this 7 months now and all the gluten free goodies have gotten me. Today I realized that I've gained some weight and I'm not happy. So I'm back to naturally gluten free foods like vegetables and fruit and yogurt and portion sizes have to come down. I think what happens is that we feel so deprived at first that when we find these 'alternatives' and get used to them, our minds think 'but this is good for me' in reality.. for a proper diet we being gluten free should just have to find an alternative to bread, pasta, and cereals... and enjoy natures naturally gluten free foods most. I'm going back to treats being just that a treat and occasional... get this 10 lbs off before it becomes 20!!!
  • 0
*Judy

Food allergies to fish, seafood, tree nuts, aspartame(Equal),flax seed, and many drugs
Stomach issues since childhood
Hypoglycemia (low blood sugar) age 6-44
Diabetes age 44 to present now going back to Hypoglycemia since gluten free.
Diagnosed with Fibromyalgia in 2005 and it's gone now that I'm aspartame and gluten free. Hmmm
Celiac disease- negative test in 2009, positive tests in Nov. 2010
Gluten free started 11/08/2010
Genetic tests positive- DQ2, positive -DQ6 (?) negative- DQ8 11/15/2010

#14 Callum06

 
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Posted 10 June 2011 - 01:37 PM

I haven't really bothered with the processed stuff too much. I stocked the fridge with fresh fruit, veggies, chicken and eggs. The only gluten-free stuff that is totally addicting right now are these blue corn/quinoa chips with guac or pico de gallo. YUM!

But yeah, for the the reasons above, I'm just sticking with a simple diet. I was tracking before I found out on SparkPeople.com (have been for years) and I am still tracking now. That is a real wake-up call to how unbalanced your diet can get if you just eat processed gluten-free food! Hopefully being celiac WILL help me lose weight because I'm staying away from sweets... always my downfall. Oh, and beer! ;-)
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#15 Skylark

 
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Posted 10 June 2011 - 04:40 PM

I was bipolar too. The manic symptoms went away with a gluten-free diet and proper nutrition until recently. Now I am having some thyroid issues that are giving me hyperthyroid "manic" periods, though it's not anything as bad as when I was eating gluten.

Gluten-free gourmet cooking is pretty easy, as long as you aren't trying to cook French sauces or pastry. That is a little trickier but it can be done.
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