23 newly diagnosed and concerned/help

[Bec the Lemon]

Hi there, I was just diagnosed (well sort of, the blood test was positive and the nurse said she was nearly certain based on what she saw in the biopsy but are waiting results from the samples) and Im dealing with a lot of the emotional stress with seemingly none of the support. I have received next to no info on how to actually go gluten free from any doctor and that is only part of the problem. Im wondering how long I could have possibly had this? Ive  had symptoms that dont actually match celiac disease very well but closely enough? for years but none of them stem from eating foods containing gluten. Every once in a while (maybe 2-4 times a year) I have these attacks where no matter what I eat I get sick, during these attacks I avoided food but when Im finally able to eat again the foods that provide the most relief and ease as bagels and crackers. I cant even get liquids down have the time and soup always sits too heavily. I dont get reactions from gluten at all. The only reason I was tested in the first place was because I had taken some new hormone pill for an unrelated illness that set off a bad reaction at first and I just never got better. 
I do have to say after reading a few of these forums Im terrified about what awaits me in my 30's and 40's. Ive read so many horror stories about pain and complications I have to say Im in a little bit of a panic. I dont know if I can take anymore daily pain. I have endometriosis and pcos (poly cystic ovarian syndrome) and Im already in pain that some days is just too much to take. On top of that dealing with years of depression and anxiety (that I pray are not caused by celiac because that would mean Ive have celiac since I was 13). I have to wonder how much damage has been done and if theres a way I can avoid suffering that much more. Sorry this was long and a little hard o follow Im sure but I feel Ive received no information or support from my doctors and I dont know where else to turn.

[kareng]

8 hours ago, Bec the Lemon said:

Hi there, I was just diagnosed (well sort of, the blood test was positive and the nurse said she was nearly certain based on what she saw in the biopsy but are waiting results from the samples) and Im dealing with a lot of the emotional stress with seemingly none of the support. I have received next to no info on how to actually go gluten free from any doctor and that is only part of the problem. Im wondering how long I could have possibly had this? Ive  had symptoms that dont actually match celiac disease very well but closely enough? for years but none of them stem from eating foods containing gluten. Every once in a while (maybe 2-4 times a year) I have these attacks where no matter what I eat I get sick, during these attacks I avoided food but when Im finally able to eat again the foods that provide the most relief and ease as bagels and crackers. I cant even get liquids down have the time and soup always sits too heavily. I dont get reactions from gluten at all. The only reason I was tested in the first place was because I had taken some new hormone pill for an unrelated illness that set off a bad reaction at first and I just never got better. 
I do have to say after reading a few of these forums Im terrified about what awaits me in my 30's and 40's. Ive read so many horror stories about pain and complications I have to say Im in a little bit of a panic. I dont know if I can take anymore daily pain. I have endometriosis and pcos (poly cystic ovarian syndrome) and Im already in pain that some days is just too much to take. On top of that dealing with years of depression and anxiety (that I pray are not caused by celiac because that would mean Ive have celiac since I was 13). I have to wonder how much damage has been done and if theres a way I can avoid suffering that much more. Sorry this was long and a little hard o follow Im sure but I feel Ive received no information or support from my doctors and I dont know where else to turn.

It is possible to have other illnesses/conditions, too.  Celiac doesn't cure everything.

I have been diagnosed for years.  I do not have daily pain or complications form Celiac.  Most Celiacs I know in real life have the normal age related stuff, but not because of Celiac.  

ON this forum, you see many people trying to figure out what is wrong with them, or new to Celiac or with other issues.  The healthy, happy ones learn and go on with their lives.  

[Ennis-TX]

I have had tale tale signs of this disease since I was a little kid, it was not diagnosed til it got really bad (I was 23-24) with various other complications. Turns out stuff I used to consider "normal" were actual symptoms and complications from the disease. Yeah and the thing with the foods is the antibodies stay ramped up for weeks to months after eating gluten....so your might not noticed reactions to gluten foods immediately or have anyway to associate the symptoms since they have been "normal" for years. You just thought that was you and that was life. Your starting to obviously get new issues that can not be overlooked, food intolerance, enzyme  and digestion issues...yeah they start cropping up longer you eat it. For now read the newbie 101 section, clean out your kitchen, condiments, foods, drawers, get some new dedicated cookware and colander,

Start off easy with the diet, remove all the junk, processed foods, etc. Go to a whole foods only diet, soups, stews, roast, rice/rice gruel all certified gluten free and in new cookware, keep a food diary, Keep track of what foods cause what symptoms, remove foods for a few days see how you feel try them again. See what ones make you feel bad.
I always suggest and find omelettes cooked in a microwave cooker myself, super soft, easy to digest, and the clean new microwave cooker for it only cost you $4-6, just get a new measuring cup crack in yours eggs, whisk up pour in, add in your chopped greens (I love spinach from the can) or what ever you want and cook following instructions.
PS many develop lactose intolerance since our damaged intestines make enzyme production and digesting it troublesome so remove dairy for at least a month, Oats, 10% or so of celaiac react to oats just the same so remove them at first and try gluten-free ones later if you wish.

You probably will have to start taking supplements for now to make up for lack of nutrient absorption and digestion issues. The heavy sitting foods etc could be a sign of anything from a food intolerance you developed, a enzyme deficiency issues that can be fixed with a supplement like Jarrow Enzymes, or perhaps some other issues like constipation, inflammation, sibo, etc that could have developed from gluten exposure and damage.

Supplements I take for stress and things your might be low in would be B-vitamins, magnesium, vitamin D, iron, etc. Liquid Health Stress & Energy and Liquid Health Neurological Support 1tbsp each 3 times a day will help with energy and stress issues. Now for magnesium if you have constipation (if you only go once every 2 or more days) look up Natural Vitliatly Calm and ease into dosing with 1/4 tsp and up to full dose over a week. If you have loose stools or Diarrhea then Doctors Best is much easier on the stomach. Liquid Health also had sublingual vitamin D you can take from a dropper. 

https://www.celiac.com/forums/topic/91878-newbie-info-101/
https://www.celiac.com/forums/topic/119661-gluten-free-food-alternative-list-2017/

 

[tessa25]

You should start off initially with simple foods like soups and stews. You're young so I would think you would start to see a positive change in a couple of months. Once you get used to it gluten free is no big deal at all. Below I am giving you a list of gluten free equivalents for those times when soups and stews are driving you crazy. You should really hold off on the equivalents until you feel better though.

 

So here's what I found out regarding food:
Note: insert the words "gluten free" in every item mentioned as some of the companies also sell non gluten free stuff. It's tedious to write that phrase all the time.

Get a chest freezer to store all of your frozen gluten-free foods. Makes things easier.

Bread: Canyon bakehouse without question is the most realistic tasting bread.
  Schar comes in a close second.
    Canyon bakehouse plain bagels are practically indistinguishable from regular bagels.
    Canyon bakehouse white bread makes fantastic toast. It has a very slight
                 sweet taste to it. My friend says it tastes like normal bread. The
                 only difference to me is the sweetness.
    Canyon bakehouse deli rye is great if you like rye bread sandwiches. Toasted is best.
    Canyon bakehouse multigrain tastes exactly like multigrain bread and does not need
                 to be toasted.
    Schar baguettes are fantastic.
    Katz makes an English muffin that, after toasted, reminds me of a real one provided
                 it has stuff on it like butter. I think that's the brand.
    Etalia has a good boule if you prefer artisan bread. (Colorado)

Pizza crust:
    Shar makes a good thick and chewy crust.
    Udis makes a good thin and crispy crust.
    Etalia makes a great New York crust. (Colorado)

Pasta:
    Barilla makes the best pasta. Tastes like normal pasta. Spaghetti cooks the best.
    
Flour:
    Pamelas all-purpose flour is great for making gravy and batter for fried foods.

Cereal:
    Envirokidz Gorilla Munch cereal is a yummy equivalent to corn Pops.

Cookies:
    Kinnikinnik makes a decent Oreo equivalent.
    Kinnikinnik makes a good nilla wafer
    Mi Del makes a great ginger snap.
    Goodie Girl mint slims - fantastic girl scout mint cookie equivalent

Cake:
    Betty Crocker chocolate cake mix tastes the same, but you have to get the cooking time
            exactly right. It is a very small window of time. Too long and it's too dry.

Frozen meals:
    Udi's Chicken Florentine is addictive and Broccoli Kale lasagna is a good white lasagna.

Restaurants (not from personal experience, just from research)
    Chinese – PF Changs. Employees are supposedly trained in gluten free.
    Burgers – In N Out. The only thing here that is not gluten free are the
                buns so it is very easy for them to do gluten free. They are
                also trained in it. They are only out west. Road Trip!
    Outback steakhouse. Employees are supposedly trained in gluten free. How
                good they are depends on where you live.

 

If you are willing to cook from scratch it's fairly easy to make a good gluten free equivalent to your favorite foods.

[Bec the Lemon]

On 11/29/2017 at 8:47 AM, kareng said:

It is possible to have other illnesses/conditions, too.  Celiac doesn't cure everything.

I have been diagnosed for years.  I do not have daily pain or complications form Celiac.  Most Celiacs I know in real life have the normal age related stuff, but not because of Celiac.  

ON this forum, you see many people trying to figure out what is wrong with them, or new to Celiac or with other issues.  The healthy, happy ones learn and go on with their lives.  

I recently learned it is not my only issue, it seems i now also have pcos and a few small complications, its going to take time to learn how to manage all of it

[Bec the Lemon]

On 11/29/2017 at 9:35 AM, Ennis_TX said:

I have had tale tale signs of this disease since I was a little kid, it was not diagnosed til it got really bad (I was 23-24) with various other complications. Turns out stuff I used to consider "normal" were actual symptoms and complications from the disease. Yeah and the thing with the foods is the antibodies stay ramped up for weeks to months after eating gluten....so your might not noticed reactions to gluten foods immediately or have anyway to associate the symptoms since they have been "normal" for years. You just thought that was you and that was life. Your starting to obviously get new issues that can not be overlooked, food intolerance, enzyme  and digestion issues...yeah they start cropping up longer you eat it. For now read the newbie 101 section, clean out your kitchen, condiments, foods, drawers, get some new dedicated cookware and colander,

Start off easy with the diet, remove all the junk, processed foods, etc. Go to a whole foods only diet, soups, stews, roast, rice/rice gruel all certified gluten free and in new cookware, keep a food diary, Keep track of what foods cause what symptoms, remove foods for a few days see how you feel try them again. See what ones make you feel bad.
I always suggest and find omelettes cooked in a microwave cooker myself, super soft, easy to digest, and the clean new microwave cooker for it only cost you $4-6, just get a new measuring cup crack in yours eggs, whisk up pour in, add in your chopped greens (I love spinach from the can) or what ever you want and cook following instructions.
PS many develop lactose intolerance since our damaged intestines make enzyme production and digesting it troublesome so remove dairy for at least a month, Oats, 10% or so of celaiac react to oats just the same so remove them at first and try gluten-free ones later if you wish.

You probably will have to start taking supplements for now to make up for lack of nutrient absorption and digestion issues. The heavy sitting foods etc could be a sign of anything from a food intolerance you developed, a enzyme deficiency issues that can be fixed with a supplement like Jarrow Enzymes, or perhaps some other issues like constipation, inflammation, sibo, etc that could have developed from gluten exposure and damage.

Supplements I take for stress and things your might be low in would be B-vitamins, magnesium, vitamin D, iron, etc. Liquid Health Stress & Energy and Liquid Health Neurological Support 1tbsp each 3 times a day will help with energy and stress issues. Now for magnesium if you have constipation (if you only go once every 2 or more days) look up Natural Vitliatly Calm and ease into dosing with 1/4 tsp and up to full dose over a week. If you have loose stools or Diarrhea then Doctors Best is much easier on the stomach. Liquid Health also had sublingual vitamin D you can take from a dropper. 

https://www.celiac.com/forums/topic/91878-newbie-info-101/
https://www.celiac.com/forums/topic/119661-gluten-free-food-alternative-list-2017/

 

Thank you for the advice! I did learn I have a few deficiencies including vitamin K which I didnt even know was a thing but thats from the starvation (I think). My stomach still isnt tolerating vegtables which is weird so Im just going with very bland things and hoping Ill get stronger but I havent had a raw veggie in 4 months so that may take some time. Ill try out more rice and soups, so far I can only get squash soup down and not much of it but its something. 

[Bec the Lemon]

On 11/29/2017 at 11:10 AM, tessa25 said:

You should start off initially with simple foods like soups and stews. You're young so I would think you would start to see a positive change in a couple of months. Once you get used to it gluten free is no big deal at all. Below I am giving you a list of gluten free equivalents for those times when soups and stews are driving you crazy. You should really hold off on the equivalents until you feel better though.

 

So here's what I found out regarding food:
Note: insert the words "gluten free" in every item mentioned as some of the companies also sell non gluten free stuff. It's tedious to write that phrase all the time.

Get a chest freezer to store all of your frozen gluten-free foods. Makes things easier.

Bread: Canyon bakehouse without question is the most realistic tasting bread.
  Schar comes in a close second.
    Canyon bakehouse plain bagels are practically indistinguishable from regular bagels.
    Canyon bakehouse white bread makes fantastic toast. It has a very slight
                 sweet taste to it. My friend says it tastes like normal bread. The
                 only difference to me is the sweetness.
    Canyon bakehouse deli rye is great if you like rye bread sandwiches. Toasted is best.
    Canyon bakehouse multigrain tastes exactly like multigrain bread and does not need
                 to be toasted.
    Schar baguettes are fantastic.
    Katz makes an English muffin that, after toasted, reminds me of a real one provided
                 it has stuff on it like butter. I think that's the brand.
    Etalia has a good boule if you prefer artisan bread. (Colorado)

Pizza crust:
    Shar makes a good thick and chewy crust.
    Udis makes a good thin and crispy crust.
    Etalia makes a great New York crust. (Colorado)

Pasta:
    Barilla makes the best pasta. Tastes like normal pasta. Spaghetti cooks the best.
    
Flour:
    Pamelas all-purpose flour is great for making gravy and batter for fried foods.

Cereal:
    Envirokidz Gorilla Munch cereal is a yummy equivalent to corn Pops.

Cookies:
    Kinnikinnik makes a decent Oreo equivalent.
    Kinnikinnik makes a good nilla wafer
    Mi Del makes a great ginger snap.
    Goodie Girl mint slims - fantastic girl scout mint cookie equivalent

Cake:
    Betty Crocker chocolate cake mix tastes the same, but you have to get the cooking time
            exactly right. It is a very small window of time. Too long and it's too dry.

Frozen meals:
    Udi's Chicken Florentine is addictive and Broccoli Kale lasagna is a good white lasagna.

Restaurants (not from personal experience, just from research)
    Chinese – PF Changs. Employees are supposedly trained in gluten free.
    Burgers – In N Out. The only thing here that is not gluten free are the
                buns so it is very easy for them to do gluten free. They are
                also trained in it. They are only out west. Road Trip!
    Outback steakhouse. Employees are supposedly trained in gluten free. How
                good they are depends on where you live.

 

If you are willing to cook from scratch it's fairly easy to make a good gluten free equivalent to your favorite foods.

I hope it gets easier soon, I just had to get rid of so many of the foods I loved and it was depressing to say the least. 
This list youve given me is very reassuring, the only issue is I live in Canada so I dont have in and out, or PF changs but when I do visit the states I can keep that in mind!! we have Udis for sure, Ive never seen shar but Ill keep an eye out for it next time I go shopping. Thank you so much!

[Ennis-TX]

4 hours ago, Bec the Lemon said:

Thank you for the advice! I did learn I have a few deficiencies including vitamin K which I didnt even know was a thing but thats from the starvation (I think). My stomach still isnt tolerating vegtables which is weird so Im just going with very bland things and hoping Ill get stronger but I havent had a raw veggie in 4 months so that may take some time. Ill try out more rice and soups, so far I can only get squash soup down and not much of it but its something. 

>.> Should see the updated foods list I am working on found SO many old foods they now make gluten-free lol.

Anyway, yeah veggies can be a bit tough early on, some people develop intolerance issues with certain ones. I still have to steam the crap out of veggies so they are super soft. Steaming, stewing, or simmering them in a saute sauce til they will turn to a mush when I try eating them. Otherwise I seem to throw them back up hours later still undigested, enzymes have helped this along with meats which had the same issue. I pretty much live off of omelettes every morning with sauteed or steamed veggies cooked inside them. Also do various other dishes,