Feeling overwhelmed

[michellepchy]

Hello, I am new here I went for blood tests at back in April and the blood test showed a lack in Vitamin D, low in iron (I was previously in January anemic and given iron tablets for this) and positive for Celiac Disease. I have since then been referred for an endoscopy which I had an appointment for on Thursday last week. I went along expecting to have the endoscopy but I was seen by a consultant who says I will have to wait another 2-4 weeks for the endoscopy and that I will also need a scan for my bones. He has told me that my blood results are undisputable for having celiac disease but I have to have the endoscopy to have it clinically proven so I am not to cut any gluten out but as soon as I have had it I am to cut it out. I have been having a look around reading various forums and have now found myself feeling a bit overwhelmed by the whole thing. I am trying to work out what I can and can not eat once I have had the endoscopy so I can get some bits in and be prepared. I am also due to go on a 2 week all inclusive holiday to Turkey in July and am now really worried about what I should do. Any help or advise anyone can offer would be gratefully received. Michelle x

[Ennis-TX]

There is a huge learning curve to the disease, but it is quite easy to live with once you get it down after the first year or so. Celiac disease is a autoimmune disease where your immune system essentially gets confused by gluten and attacks your own body, This has various manifestations and symptoms and is different from person to person. Over time it gets worse and worse if ignored where you body will slowly kill itself and destroy itself. Reactions can be triggered by crumbs, residue, even tiny bits of flour in the air. Gluten is a protein smaller then a germ, luckily only found in some grains, and in alot of processed foods. If you eliminate it from your house, and do not bring any any, while avoiding eating outside of your house you will heal more quickly and a pretty normal life can be managed if you catch it early enough. You just find yourself making your own food more and doing meal preps. (And hosting meals for family and friends more often as you can not eat at their places, but this part I enjoy)   I will link some things at the end of this to simplify things.

Personally I did not know about my issues til a whole lot of s$#& hit the fan. I am one of those worst case, not the worst but one of them. I ended up with immune system attacking my nervous system and brain in addition to my gut. I suffer from brain damage, loss of feeling in my hands and feet, and due to gut damage and immune issues multiple food allergies and intolerance issues developed, SO I am limited in more ways then  just gluten grains (Long list check my profile).

You seem luck in you did not mention to many of the major issues or common ones with this disease, For the most part cleaning our your fridge, pantry, getting some new pots, pans, utensils etc. And making sure you throw out any thing with gluten, scrub everything down, and get new condiments, spices, or anything contaminated and you should be fine. We suggest a whole foods only diet for the first few months with little to no processed foods. Also removing dairy and gluten-free oats, which you can try to reintroduce later. Reasons being is whole foods are easier to manage, chock full of nutrients with very little chance for contamination. Dairy is broken down by enzymes produced by the tips of your villi which are normally damaged or blunted from this disease. And 10% of celiacs reac to to oats like gluten.  PS I do suggest freezer paper for a prep surface when fixing foods, makes a clean work area and a breeze to clean up.  They do make gluten-free versions for everything now days I have a comprehensive list of options you can look at I will also link to help you. Just think of it as changing brands lol.

As for your trip, there are allergy cards you can print off to show to people at restaurants, you can ask others for suggestions of good places to eat, you can take a test kit like Nima to test your food before eating it. Also you can take emergency meal bars, meal replacement shakes, and bags of nuts and seeds for snacks. Many travel without issues using these methods to keep from getting sick, you will also find in EU many grocery stores have a large selections of gluten-free foods you can buy and just eat that way and fix your own meals.

You might find you need to supplement some things, IE if your constantly fatigued, nerve, and joint issues you will find magnesium and b-vitamins to help. Since your anemic I am going to mention you might look into a vitamin C supplement also as it is used to help your body absorb iron. Going to give a link as to what me and others take and for what reasons also. 

https://www.celiac.com/forums/topic/91878-newbie-info-101/

https://www.celiac.com/forums/topic/117090-gluten-free-food-alternatives-list/

https://www.celiac.com/forums/topic/116482-supplement-and-foods-you-take/

 

[tessa25]

Since you have to wait 2-4 weeks for the  endoscopy and you have to be having gluten for it, I'd go enjoy the July trip and then go gluten free after.

If you're currently on a meat, potato, and veggies diet then relax because this is gonna be easy. If not you might want to switch to a meat, veggies, and potatoes diet at least for a while.

 

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 (sp?) if you prefer artisan bread.

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.

Pasta:
    Barilla makes the only good pasta that I know of. Spaghetti cooks the best.
    RP has a frozen pasta that I'm going to try next.

Flour:
    Pamelas all-purpose flour is great for making gravy and batter for fried foods.

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

Cookies:
    Glutino and Kinnikinnik make a decent Oreo equivalent.
    Mi Del makes a great ginger snap.
    Goodie Girl mint slims - fantastic girl scout mint cookie equivalent

Cake:
    Betty Crocker chocolate cake tastes the same, but you have to get the 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.

[cyclinglady]

Enjoy your trip and worry about the diet until after you get back unless you are having severe symptoms.  Then follow Ennis' advice about gluten-free restaurant cards in various languages.  Lots of us have traveled successfully.  You just need to prepare a bit more.  

In the meantime, savor your gluten-filled food until your endoscopy.  My advice (anemia was my only symptom)?  Do not over do it.  I pigged out.  By the end of seven weeks (I had lots of work issues that prevented an earlier endoscopy), my gut was hurting.  

[Jmg]

Hi Michelle and welcome

4 hours ago, michellepchy said:

Any help or advise anyone can offer would be gratefully received. Michelle x

I'm guessing you're like me and from the UK? Which means that sadly much of Tessa's list won't be accessible, but don't worry there's plenty to eat here too. I'll go ahead and reply as if your a Brit, if not ignore me

4 hours ago, michellepchy said:

I have been having a look around reading various forums and have now found myself feeling a bit overwhelmed by the whole thing.

Be careful not to scare yourself by doing this. There are a lot of sites that sensationalise or try to scare you into buying their products. You've found a good site here, make use of it, but don't be afraid to turn the web off if its all getting a bit much. 

One site you should go to and join is Open Original Shared Link

They will send you a book with all the brands you can trust and this will be worth its weight in gold. You can also access it online. Highly recommended. 

4 hours ago, michellepchy said:

am also due to go on a 2 week all inclusive holiday to Turkey in July

As above. Go and have a great time. The diet can start on your return.

One final thing. It can get overwhelming in the first few months and it's a massive shock, at times you will feel sad and maybe resentful, you will go through a bit of a grief process in other words, but it will get better as you learn the ropes and you will feel so much better once you're on the diet.  As you learn try to let others around you know so that they understand and you don't feel too isolated. Use this site too, there's lots of help and understanding available here

Best of luck and enjoy Turkey!