Newbie

[huffalynn]

Hello! I was just diagnosed with Celiac a couple days ago and have not been given any kind of direction on what I need to do other than "don't eat anymore gluten". I thought it would be easy to figure out, but I am finding that I am scared to eat just about everything. If i google if a certain product has gluten, there are always different responses. 

I am currently on a weight loss program called Profile by Sanford. The coaches there have a list of non gluten food, which I thought was great. However, the paper they gave me has a disclaimer that their products could be cross contaminated. In your opinion do I go ahead and remain on the plan, or stop it because of possible contamination. There's no gluten products listed on the labels.  

I'm just really scared of the diagnosis anyway, so this is all freaking me out a little. 

Thanks for your  help!

[trents]

Welcome to the forum, huffalynn!

Perhaps this will help:

Cross contamination issues are tricky for several reasons. One is that some celiacs are more sensitive than others to tiny amounts of gluten. What kicks off a celiac reaction in one person doesn't in another. Another factor is that cross contamination levels will vary from one production batch to another for the same food product. So, this is something you will just have to experiment with over time when it comes to the mainline food products you use that are not labeled gluten free.

But to start with, I would recommend avoiding all processed food products that are not labeled either "Gluten Free" or "Certified Gluten Free." Let your gut heal to get a baseline before you start to add back in mainline foods not labeled gluten free or certified gluten free. Gluten free means the food product is supposed to contain no more than 20ppm of gluten. Certified Gluten Free means it will contain 10ppm or less as the two certifying agencies have stricter standards then does the FDA.

So, yes, I'm afraid I would not recommend continuing with the diet plan you are on because of potential cross contamination issues.

I would also recommend you stick to simple, basic fresh food products that you cook yourself, e.g., fresh meat, fresh fruit and fresh vegetables as opposed to processed food. Avoid eating out like the plague. You have no control over what actually happens in a restaurant kitchen as far as cross contamination ("CC") goes.

Since celiac disease typically results in vitamin and mineral deficienies because of damage to the villi of the small bowel, I would also recommend a good gluten-free multivitamin plus a high potency gluten-free B-complex and add in 5000IU of D3. If you live near a Costco, their Nature Made brand of vitamins and supplements are a good choice.

Edited March 10, 2022 by trents

[huffalynn]

Thank you for the helpful information. Thankfully, when covid hit, I started taking vitamins. I checked them all last night and they are all gluten free! Once thing I've done right. I didn't realize until I started delving in to it that it was going to be so confusing. I just thought hey this isn't hard i just have to give up bread, pasta etc. its a lot more than that. 

[trents]

It often takes around two years for complete healing of the villi after a truly gluten-free lifestyle is achieved. But there is usually substantial improvement in symptoms and in health issues well before then.

[Scott Adams]

I agree with @trents and would discontinue any diet plan that could not guarantee that their food is gluten-free. 

[AlwaysLearning]

Congratulations on getting a diagnosis!

Going gluten free can be tough. I think one of the most-helpful things I did was to make sure I found ways to see the positive and try to make eating an adventure instead of a hardship.

Those early trips to the grocery store, when you realize that so many of your favorites are now off limits, can be tough. So I tried to find ways to make it more fun.

• Trying out different premade gluten free foods can be hit or miss. Some are okay, many are awful, so this part of the learning process can be interesting, but at times depressing. They try, but the gluten-free versions of most bread products are nowhere near their gluten-free counterparts. My favorite gluten-free bread products are those made by King Arthur and they fortify their gluten-free flours with vitamins like they do regular wheat flour, which is helpful. Ten years into being gluten-free, I finally got around to making my own gluten-free bread from scratch. I highly recommend. But I don't mention the negatives to bum you out, rather to help you have realistic expectations and to not be disappointed by some of the products out there. Of all of the gluten-free products I tried, about 50% were never purchased again. Forget the lousy ones and be excited about the ones you like! 

• Go on a cooking kick, trying out new recipes and cooking foods you've never cooked before! I went a little crazy with my grocery budget for a while when I first went gluten-free, buying wild salmon, lobster, and snow crab.  It hurt my wallet, but wow it tasted great! Giving myself some treats that were definitely gluten-free really did help me feel less deprived. Nowadays I'm a little more rational. My big thing is making big batches of soup that can be frozen. It is a super easy way to add convenience back into your diet. I make double batches using both of my big pots, giving me about 20 servings that just need to be heated up. Cook once and eat for weeks!

• Make the produce department your new favorite location! All of those bright colors! So much variety! And so many nutrients! The up side is that it is difficult to find anything in a produce department that contains gluten. Of course, some things slip in, so just avoid anything even partially prepared already. Even if you don't currently love fruits and vegetables, it is an easy thing to talk yourself into considering the wide variety of flavors and options for cooking. And don't forget the freezer aisle for veggies. There are lots of safe options in there that will keep longer.

• Make it a game to find things in your local gasoline station mini mart that are gluten free. There aren't many, but knowing the foods that you can count on to be available no matter where you find yourself can be of great help if you are away from home longer than you expected. For instance, most big brands of orange juice are gluten free. Milk is safe. Plain potato chips are generally safe. And learn your protein bars. There are some brands that are both popular and gluten-free. These options are all over the map when it comes to how healthy they are, but in case of emergency, it is good to have a plan before you need it.

• Have fun creating a travel food kit for yourself. Even if you don't make it in advance, having the foods you'd put in it when needed can make it easier to go out into the world. When I first went gluten free, I think I stocked up on about 8 different types of gluten-free protein bars to just grab when I had to leave the house in a hurry. I got a soft-sided mini cooler, small ice blocks, and a cutting board that just fit inside, making it easier to just grab and bag items that I could prepare later, like cutting up an apple into slices to snack on at work. I got a medium sized soft cooler too (it looked like a diaper bag) which was good for bringing more food when away longer. And I already had a larger, cooler. Give yourself options.

• As you explore your options in the grocery store, make a menu of items you can bring with you to parties or family gatherings that you know are safe. There are TONS of hor d'oeuvres that are gluten-free, everything from hard salamis, nut-flour crackers, most cheeses, a lot of dips and spreads, veggie spears for dipping, many types of chips, shrimp cocktail, some cold cuts, etc. Of course, read the labels and look for those that say gluten-free. They are out there. I normally let my host/hostess know in advance that I'll be bringing some things to avoid offending and then share with everyone ... which is a really great way not to feel isolated and alone. Make everyone eat gluten-free along with you. (Too many people judge when you say you're gluten-free, so finding ways to make them not even notice and not have to discuss what you are eating can really help.)

I'm sure you can come up with other ways to take a positive spin on your new gluten-free life and to get excited about your new eating adventures! And no matter what you do, do NOT beat yourself up when you make mistakes. They happen. They suck. Just learn from them and move on.

And welcome to the gluten-free club!

 

 

[huffalynn]

On 3/11/2022 at 4:58 PM, AlwaysLearning said:

Congratulations on getting a diagnosis!

Going gluten free can be tough. I think one of the most-helpful things I did was to make sure I found ways to see the positive and try to make eating an adventure instead of a hardship.

Those early trips to the grocery store, when you realize that so many of your favorites are now off limits, can be tough. So I tried to find ways to make it more fun.

• Trying out different premade gluten free foods can be hit or miss. Some are okay, many are awful, so this part of the learning process can be interesting, but at times depressing. They try, but the gluten-free versions of most bread products are nowhere near their gluten-free counterparts. My favorite gluten-free bread products are those made by King Arthur and they fortify their gluten-free flours with vitamins like they do regular wheat flour, which is helpful. Ten years into being gluten-free, I finally got around to making my own gluten-free bread from scratch. I highly recommend. But I don't mention the negatives to bum you out, rather to help you have realistic expectations and to not be disappointed by some of the products out there. Of all of the gluten-free products I tried, about 50% were never purchased again. Forget the lousy ones and be excited about the ones you like! 

• Go on a cooking kick, trying out new recipes and cooking foods you've never cooked before! I went a little crazy with my grocery budget for a while when I first went gluten-free, buying wild salmon, lobster, and snow crab.  It hurt my wallet, but wow it tasted great! Giving myself some treats that were definitely gluten-free really did help me feel less deprived. Nowadays I'm a little more rational. My big thing is making big batches of soup that can be frozen. It is a super easy way to add convenience back into your diet. I make double batches using both of my big pots, giving me about 20 servings that just need to be heated up. Cook once and eat for weeks!

• Make the produce department your new favorite location! All of those bright colors! So much variety! And so many nutrients! The up side is that it is difficult to find anything in a produce department that contains gluten. Of course, some things slip in, so just avoid anything even partially prepared already. Even if you don't currently love fruits and vegetables, it is an easy thing to talk yourself into considering the wide variety of flavors and options for cooking. And don't forget the freezer aisle for veggies. There are lots of safe options in there that will keep longer.

• Make it a game to find things in your local gasoline station mini mart that are gluten free. There aren't many, but knowing the foods that you can count on to be available no matter where you find yourself can be of great help if you are away from home longer than you expected. For instance, most big brands of orange juice are gluten free. Milk is safe. Plain potato chips are generally safe. And learn your protein bars. There are some brands that are both popular and gluten-free. These options are all over the map when it comes to how healthy they are, but in case of emergency, it is good to have a plan before you need it.

• Have fun creating a travel food kit for yourself. Even if you don't make it in advance, having the foods you'd put in it when needed can make it easier to go out into the world. When I first went gluten free, I think I stocked up on about 8 different types of gluten-free protein bars to just grab when I had to leave the house in a hurry. I got a soft-sided mini cooler, small ice blocks, and a cutting board that just fit inside, making it easier to just grab and bag items that I could prepare later, like cutting up an apple into slices to snack on at work. I got a medium sized soft cooler too (it looked like a diaper bag) which was good for bringing more food when away longer. And I already had a larger, cooler. Give yourself options.

• As you explore your options in the grocery store, make a menu of items you can bring with you to parties or family gatherings that you know are safe. There are TONS of hor d'oeuvres that are gluten-free, everything from hard salamis, nut-flour crackers, most cheeses, a lot of dips and spreads, veggie spears for dipping, many types of chips, shrimp cocktail, some cold cuts, etc. Of course, read the labels and look for those that say gluten-free. They are out there. I normally let my host/hostess know in advance that I'll be bringing some things to avoid offending and then share with everyone ... which is a really great way not to feel isolated and alone. Make everyone eat gluten-free along with you. (Too many people judge when you say you're gluten-free, so finding ways to make them not even notice and not have to discuss what you are eating can really help.)

I'm sure you can come up with other ways to take a positive spin on your new gluten-free life and to get excited about your new eating adventures! And no matter what you do, do NOT beat yourself up when you make mistakes. They happen. They suck. Just learn from them and move on.

And welcome to the gluten-free club!

 

 

Thank you! Lots of helpful tips. Its really over whelming to get started. I am trying to just keep it simple right now. I have been gluten-free for a week now and have noticed that I have felt some what better. However, I had promised my son that I would take him to Cheesecake factory over the weekend and was excited that I saw that they had a lot of gluten-free options. I specifically told them I have Celiac and HAVE to eat gluten-free but Ive had a lot of stomach upset since. So lesson learned! 

[trents]

1 minute ago, huffalynn said:

Thank you! Lots of helpful tips. Its really over whelming to get started. I am trying to just keep it simple right now. I have been gluten-free for a week now and have noticed that I have felt some what better. However, I had promised my son that I would take him to Cheesecake factory over the weekend and was excited that I saw that they had a lot of gluten-free options. I specifically told them I have Celiac and HAVE to eat gluten-free but Ive had a lot of stomach upset since. So lesson learned! 

Did the Cheesecake Factory staff cut your gluten-free item with the same knife they were cutting regular cheesecake? CC (cross contamination)?

Dairy intolerance? Many celiacs also have dairy intolerance.

[huffalynn]

7 minutes ago, trents said:

Did the Cheesecake Factory staff cut your gluten-free item with the same knife they were cutting regular cheesecake? CC (cross contamination)?

Dairy intolerance? Many celiacs also have dairy intolerance.

I really don't know. I just know that I told them and hoped that they did what they needed to do. I am a very quiet person so I'm sure I didn't articulate the severity of the disease well enough. I blame myself more than I blame them.

[trents]

That's the problem with eating in restaurants. What you order may indeed be gluten free but they make cook it in the same pot or on the same grill as gluten things or they may slice it or flip it with the same utensils they have been using for gluten things. Some eateries are more aware of cc issues than others. I've found that at Subways if you request a gluten-free bun they will ask you how sensitive you are and if you want the personnel to use clean gloves when they handle the bun. CC can be a significant problem with very sensitive celiacs.

You may also need to look at the possibility of having developed other food intolerances. Dairy is a very common one among celiacs. So are oats. Corn and eggs are not uncommon ones. It might be wise to keep a food diary to look for any associations between what you eat and symptoms.

[DebJ14]

1 hour ago, huffalynn said:

I really don't know. I just know that I told them and hoped that they did what they needed to do. I am a very quiet person so I'm sure I didn't articulate the severity of the disease well enough. I blame myself more than I blame them.

Hoping they did the right thing does not cut it.

  I would recommend that you find yourself a Board Certified Nutritionist who deals with Celiac patients all the time.  My diagnosing doctor referred me to a local nutritionist who probably knows more about Celiac disease than most gastros.  First, he ordered testing for nutritional deficiencies via Spectracell and ran a test for food allergies.   Flunked that Spectracell test on almost all items and was allergic to 23 foods.  I was put on targeted supplements and a diet tailored to my specufuc needs.  The result was a quick healing, resolution of all symptoms and I felt better at 54 than I did at 20.  After a couple of years when not all Vitamin deficiencies responded, he ordered genetic testing.  That explained why antioxidant function, Vitamin D level, Iodine and B 12 were all below target values.  So, larger doses of all of those to get into the normal range and I have to stay on them the rest of my life. 

Because of insurance issues I had to change doctors.  An MD who thought she knew better took me off of those doses and my health tanked along with my vitamin levels.  Even after showing her the genetic test results she would not relent I.  Dumped her and went back to the nutritionist and paid out of pocket to get back on track.

[trents]

huffalynn, I know it can be overwhelming when you begin to unpack this gluten free thing and find out there is a lot more to it than you had first expected. It would be so nice if all we had to do was avoid sliced bread and pasta meals. But we soon find out what a challenge it is to truly live a gluten-free lifestyle and have to also be concerned with other possible food intolerances and vitamin/mineral deficiencies. It makes you feel like your life has been taken away. And if you live in a household with other non-celiacs who don't need to be worried about gluten-free eating it just gets more complicated. But take heart. Over time you will learn the ropes and you and your family will make the necessary adjustments such that it will become the new norm. Be determined. Be diligent. But be patient with yourself and others as you enter into the journey.