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

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Celiac Diagnosed Just Today!
0

25 posts in this topic

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

Share this post


Link to post
Share on other sites


Ads by Google:

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.

1

Share this post


Link to post
Share on other sites

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!

1

Share this post


Link to post
Share on other sites

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!

2

Share this post


Link to post
Share on other sites

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

2

Share this post


Link to post
Share on other sites




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

1

Share this post


Link to post
Share on other sites

+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

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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! ;-)

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

Hi Mommymonica, just a note to let you know from a fellow Fibro sufferer, that you need to avoid anything with apertame in it as it adds to your fatigue and pain, caffeine will to as well as MSG, preocessed sugar needs to be avoided as much as possible. Then the big kicker, as if you havn't got enough on your plate. :P The one thing we Fibromites need to avoid are the nightshade vegetables. All potatoes, except sweet potatoes, these are a different group. Tomatoes, all bell peppers and eggplant. These casuse pain in joints and muscles as well as swelling. My social anxiety disorder and depression eased up a little when I went gluten free but it didn't totaly go away until I removed dairy and soy both.

Have fun and take care, feel better.

Txplowgirl

0

Share this post


Link to post
Share on other sites

Wow, I'm really intrigued by the bipolar/celiac connection! Clinical depression runs hard-core in my family along with anxiety and ocd. However, I was the first to be diagnosed with a bipolar disorder. My psychopharmacologist/neurologist initially was attempting to treat me for depression, but after trying a million different meds (most of which made me more depressed) we landed on one that caused hypomania and self-harm (the same drug all my other family members were successfully treated with). In retrospect, I could definitely see my symptoms of bipolar but didn't realize them until the medication caused that reaction.

I would love more than anything to at least reduce my lithium because it has caused a fairly significant weight gain and always does (I've been on and off of it for 10 years). While I am quite sad about the celiac diagnosis, at least I can control celiac with my eating habits. I've tried everything for the BP including herbal remedies and high quantities of fish oil (fish oil does help, just not nearly enough) to medications across the board. The only thing that has worked for me is lithium and I hate taking it. Hopefully I can work down on it.

Sorry for hijacking your post, Monica! I'm just glad to have suddenly connected with so many people in the same boat!

0

Share this post


Link to post
Share on other sites

I take EMPowerPlus by TrueHope. http://www.truehope.com/default.aspx It is expensive, but I was paying over $110/month in healthcare for the bipolar anyway. That plus some fish oil and the gluten free diet held my mood stable for five years until this recent bout of thyroid trouble. My personality totally changed for the better. The irritability went away, I was relaxed, and and for the first time since I started on antidepressants in my '20s I was sleeping normally.

I'm having trouble again now, but I know it's thyroid. My Hashi's antibodies are sky-high and I'm showing signs of Graves' on top of it. *sigh*

I totally understand about the lithium. It's a damned if you do, damned if you don't sort of med, isn't it? I could never tolerate the full dose so my shrink was always looking for some mix of lithium and lower dose drugs that would work. Nothing worked well for very long. You're the only person I've met on the board who has also had to suffer through lithium, Callum. Is there a secret lithium club handshake? Maybe it's the tremor. ;)

I am convinced part of our problems are from intestinal malabsorption and a bad reaction to inflammation. It took over a year and lots and lots of vitamins until my mood got better. I think the time was partly healing, and I still need an awful lot of D and B12 to be in normal ranges.

0

Share this post


Link to post
Share on other sites

Wow - CRAZY that you mention TrueHope. The nurse that was prepping me for my biopsy on Monday mentioned that! Now I'll definitely have to look into it!!

Irritability is a huge symptom for me, so it is very inspiring to hear that has improved for you. I'm so sorry about your thyroid issues. When it rains, it pours, I guess. It really makes you question food and environmental factors. I just can't believe that my gene pool is so messed up that I am destined to be stricken with so many ailments. It seems weird to me and makes me fearful for my two young children.

0

Share this post


Link to post
Share on other sites

What a funny coincidence. It's actually amazing to me that a nurse has mentioned it. Maybe word is finally getting out! If you have questions about EMPowerPlus, feel free to PM me. Also the ladies at the TrueHope call center are really sweet and helpful.

It can be a bit of a journey tapering off the lithium and onto EMPowerPlus because you sort of detox. I had a rough three months but it was totally worth it.

I'm definitely questioning food and environmental factors. I just had a blood tox screen for heavy metals and am going to get a hair analysis done too because they test for more of them. If that doesn't pan out, I think I'm going casein, corn, and soy-free along with the gluten and paying a visit to my friend who does TCM and acupuncture.

We've definitely thread hijacked now. Sorry, Monica! Maybe some of my rambling is helpful to you too.

0

Share this post


Link to post
Share on other sites

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

Ohhh, good to know! I haven't gone and gotten all that stuff, actually been cooking. Mainly dinners and have extra to heat up for lunches the next day. I am already gaining weight since I went gluten free. I had lost 15 lbs between March and May, one reason I went to the GI doc to get checked out in the first place, and now I am gaining that back and have been super bloated. More bloated than I was before going gluten free. Not sure what to think of that. I have noticed how pricey gluten free can be.

I am actually having problems with beans and some fresh veggies because I also have IBS and gastritis (which those are debatable now that celiac was found!) I am happy I found this site bc it allows me to be open and have others understanding and helping!

I am still having chronic fatigue issues, joint pains, muscle weakness, brain fog, nausea, blurry vision, sleeplessness, but my abdominal cramping and D seem to be going away. Still bloating and some topical pain w occasional 'gurgles' .... I have noticed I am hungrier and seem to be eating more or just wanting to eat more.

0

Share this post


Link to post
Share on other sites

Hi Mommymonica, just a note to let you know from a fellow Fibro sufferer, that you need to avoid anything with apertame in it as it adds to your fatigue and pain, caffeine will to as well as MSG, preocessed sugar needs to be avoided as much as possible. Then the big kicker, as if you havn't got enough on your plate. :P The one thing we Fibromites need to avoid are the nightshade vegetables. All potatoes, except sweet potatoes, these are a different group. Tomatoes, all bell peppers and eggplant. These casuse pain in joints and muscles as well as swelling. My social anxiety disorder and depression eased up a little when I went gluten free but it didn't totaly go away until I removed dairy and soy both.

Have fun and take care, feel better.

Txplowgirl

WoW!!! I did NOT know that about fibro... to stay away from all those extra foods! Maybe that's why I am still having so many problems still since going gluten free. Good to know, I'll make note of that and see how I feel when I take those out of my diet. Thank you for that, had NO clue!!

0

Share this post


Link to post
Share on other sites

What a funny coincidence. It's actually amazing to me that a nurse has mentioned it. Maybe word is finally getting out! If you have questions about EMPowerPlus, feel free to PM me. Also the ladies at the TrueHope call center are really sweet and helpful.

It can be a bit of a journey tapering off the lithium and onto EMPowerPlus because you sort of detox. I had a rough three months but it was totally worth it.

I'm definitely questioning food and environmental factors. I just had a blood tox screen for heavy metals and am going to get a hair analysis done too because they test for more of them. If that doesn't pan out, I think I'm going casein, corn, and soy-free along with the gluten and paying a visit to my friend who does TCM and acupuncture.

We've definitely thread hijacked now. Sorry, Monica! Maybe some of my rambling is helpful to you too.

I don't mind the rambling, I enjoy it! :)

I wanted to share I have been taking Lamictal (up to 100mg right now, still going up every 2 weeks) for my bipolar and Seroquel (100mg regular or 150mg XR) to sleep.

But, things seem to be kind of the same. Some things have tapered off, but still having mood swings, irritability w situations, depression off and on at home, mania around friends... It's just SO frustrating to have all this coming at me all at once... and not know if it's my fibryomyalgia, bipolar, celiac, ibs, acid reflux, etc etc etc.... REALLY hoping gluten free does change EVERYTHING for the better. I am just being very impatient with it. I know it has only been 10 days, but ugh!!!! Come on and fix everything already. I have been reading on other posts that people have been gluten free for 6+ months and still having issues. sigh.

0

Share this post


Link to post
Share on other sites

I took Seroquel once for a manic episode. I slept for five days straight! It was a little strong for me. :lol:

Have you been tested for Hashimoto's thyroid disease? Lots of celiacs have it. It can mimic bipolar, as your thyroid can go from high to low and back from the autoimmunity. Meds like lamictal won't help. Lithium does sort of, because it suppresses thyroid activity. I also recently read one article that fibromyalgia could be hypothyroidism.

http://thyroid.about.com/od/thyroiddrugstreatments/l/blderryb.htm

0

Share this post


Link to post
Share on other sites

I took Seroquel once for a manic episode. I slept for five days straight! It was a little strong for me. :lol:

Have you been tested for Hashimoto's thyroid disease? Lots of celiacs have it. It can mimic bipolar, as your thyroid can go from high to low and back from the autoimmunity. Meds like lamictal won't help. Lithium does sort of, because it suppresses thyroid activity. I also recently read one article that fibromyalgia could be hypothyroidism.

http://thyroid.about.com/od/thyroiddrugstreatments/l/blderryb.htm

Yes, at first the Seroquel put me down for most days... I started with XR and was a zombie even after 10-12 hours of sleep. Now that I am on regular Seroquel, it's a tad better, but I am still tired all the time, I blame the chronic fatigue.

No, have not been tested for Hashimoto's thyroid disease. I am still waiting on a bunch of bloodwork to come back. I did it all a week ago, it should be done by now... sigh. I will definitely bring it up to my doc. Interesting about hypothyroidism and fibro!!!

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
      103,342
    • Total Posts
      917,393
  • Topics

  • Posts

    • Weird Reaction
      Thank  you Flowerqueen and Cristiana for your replies. I'm actually feeling much better today. I got my appetite back yesterday lunchtime (a few hours after I typed the original post) and managed to keep in/hold down some chicken and lettuce!!! I also had a "fat" coffee (as I call it) before work with MCT Oil and butter (your probably going "yuk" right now but it's really nice...really haha) and started feeling a bit better after that. The nausea went away almost immediately after that although just the thought of having all that fat nearly made me sick but I just wanted to get back to normal asap. I usually have a lot of fat in my diet anyway which is normal for me so the coffee choice isn't unusual. Plus it was also the third day which was when I started feeling better after the first time. I didn't eat til lunchtime and I was good and hungry by then so I knew I was coming out of it. That nausea and trembling feeling is something I don't want ever again. I think after the workout and tearing down muscle tissue (which is a form of stress) and then not being able to hold the nutrients in for repair affected my nervous system. My theory only but to me it makes sense. Although Vitargo also comes in flavors I always get the Natural / Unflavored one so the barley is the only ingredient. As for there being something wrong with that particular batch, well, you be on to something there. Also I'm not knocking the product because as I said, I have used it before and it did exactly what it was supposed to do. But, I will never have it again. Cristiana, my last blood test revealed I had slight anaemia which really surprised me with the amount of red meat I've eaten during my life and the anxiety thing is also new as I'm usually a happy, positive person. Life is good but after this recent reaction I think it is an indirect cause of the glutening. I'm also surprised at how sensitive I've become to it and how quickly. Also what is DX? I also follow a FODMAP eating plan (I can give you more info if you haven't heard of it) which also eliminates certain foods. It's a plan directed mostly at IBS but is well worth looking into if you are suffering any gut health, digestion issues or any ailment you may have which you can't get to the bottom of. Broccoli was one of the foods which I have cut back on and I've eaten HUGE amounts of broccoli so it is a superfood for some but apparently not for others. (I even think I read somewhere it has MSG naturally in it) It's hard to find any bad articles on broccoli so this also really surprised me. It also answered a few other questions I had. Many, many thanks again to you both for your replies. It actually settled me just reading them. I'm glad I found these forums so I don't think i'll be a stranger around here for long.   Richard
    • Confused
      Okay, I get that you are not going to follow the advice from some stranger on the internet, but please read the links that I gave you.  Your doctor is not following the standard level of care.  I am dead serious.  I have Kaiser.  My own GP doesn't have a clue about celiac disease, but my Kaiser GI does.  Please, I urge you to get properly diagnosed.  All celiac testing requires you to be on a gluten diet.  If you go gluten free even for two weeks (it will take time to get the referral and appointment), it will mess up the tests.  Your GI will put you back on a gluten diet (called a gluten challenge) for 8 to 12 weeks.    Chances are (almost 100%) you will feel more miserable!  That will just delay your diagnosis.   Symptoms not bad you say?  I had pretty severe anemia, but no tummy issues.  Two months after my diagnosis, I fractured my back DOING NOTHING!  Yep, I have osteoporosis from undiagnosed celiac disease and I am an athlete!   Please take this seriously!    
    • Silent Celiac or Non-digestive symptoms
      Oh, you might learn how to tell if you had been glutened.  I just had anemia as my main symptom.  I did not have any tummy issues at all.  I was in shock when my doctor even suggested testing me for celiac disease!   Glutenings can vary as we are all different.  For some it is just a few days, others a few weeks and others months (that would be me).  My last official glutening as supported by follow-up antibody testing lasted for three months.  Guess what?  I had vomiting, abdominal pain, the works!  Funny how celiac disease can change and evolve over time.   Welcome to the forum!  Have some patience and learn all that you can.  The good news is that you can feel better and no medications are required!  
    • Confused
      Thank you for the information. I've been not sure if I should eat gluten or not right now. Dr. said I should watch what I eat when I emailed him the question. My symptoms aren't very bad (I understand that doesn't matter for celiac disease), so I can definitley tolerate the food. But I have been starving myself the last few days due to not knowing what the heck is going on. Thanks again.
    • Could this possibly be related to celiac or a gluten intolerance?
      If you did actually have celiac disease, it can take weeks, months and years to recover from some of your symptoms, especially neurological ones.   Best to get screened for celiac disease.  It's a simple blood test.  Any medical doctor can do it.  But a GI doctor is needed for a diagnosis, since an endoscopy is part of the diagnostic procedure.  BUT you have to be consuming gluten to get accurate results! http://www.cureceliacdisease.org/screening/ http://gi.org/guideline/diagnosis-and-management-of-celiac-disease/ Keep on researching.  I wish you well!    
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
    • ukuleleerika

      Hello! I am new to this Celiac website... Is there anyone out there with Celiac AND extensive food allergies? My allergies include shellfish, dairy, eggs, cantaloupe, kiwi, mango, nuts, oranges, red dye, and more I can't think of. I went to the allergist about a year ago to see why I wasn't feeling well, and once everything was eliminated, I still didn't feel well. We did more testing to find out I had celiac as well as allergies to cattle as well as rye grass (I live on a farm basically). This was back in January 2016. I recently had my endoscopy with the gastroenterologist a week ago. I have no idea what to do or what to eat... So fish and potatoes for me!
      · 2 replies
    • SLLRunner

      Week 4 of the gluten challenge- wheat cereal every morning, regular bread every day, and wheat tortillas for my lunch wraps. Right now, body aches that seem exercise related (weight lifting and running), even though I am doing the same intensity of weight lifting and running I've always done.  Just a few more weeks until my blood test. Counting down the days.
      · 0 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,478
    • Most Online
      1,763

    Newest Member
    Andrew Miller
    Joined