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Just Found Out My 3 Yr Old Has Celiac. I Need Advice!


JennyC

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JennyC Enthusiast

My 3 yr old son was just diagnosed with Celiac disease a couple of days ago. He has had diarrhea, abdominal bloating, small appetite, irritability, and a small stature nearly his entire life. I have purchased lots of new food for him already. It's really hard because he is a VERY picky eater. Does anyone have any recommendations for kid-friendly food?

Also I've been using the list of forbidden foods from this website, but I noticed that some of the foods that I thought were OK have some of the ingredients. Like Kelloggs rice crispy treats have malt flavoring. The box didn't say that it contained wheat ingredients, so is that OK for him to eat? Just how picky do you have to be about some of the items on the forbidden foods list?

Do I have to buy new pots, pans & utensils? Should I buy a new toaster?

Any help would be greatly appreciated!


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Lisa Mentor
My 3 yr old son was just diagnosed with Celiac disease a couple of days ago. He has had diarrhea, abdominal bloating, small appetite, irritability, and a small stature nearly his entire life. I have purchased lots of new food for him already. It's really hard because he is a VERY picky eater. Does anyone have any recommendations for kid-friendly food?

Also I've been using the list of forbidden foods from this website, but I noticed that some of the foods that I thought were OK have some of the ingredients. Like Kelloggs rice crispy treats have malt flavoring. The box didn't say that it contained wheat ingredients, so is that OK for him to eat? Just how picky do you have to be about some of the items on the forbidden foods list?

Do I have to buy new pots, pans & utensils? Should I buy a new toaster?

Any help would be greatly appreciated!

Jenny:

I know very well how frustrating all of this is in the beginning. It does get better.

Rice Krispies have MALT and it is forbidden. He can have nothing with wheat, rye, malt, barley and oats.

I did not buy new pots and pans and a good hand wash cleans them well. I would throw out any teflon pans that are scratched (gluten can hide in the cracks), and I disgarded all my wooden spoons.

A separate toaster will be needed. The old one will have gluten crumbs and they can't be cleaned very well.

There are severl cereals that he can have. I will leave that the the other mothers with small children.

Try in the beginning to cook naturally gluten free foods. Chicken, Pork, Beef, Tuna (yah, bet he'll eat tuna <_< ), Seafood, Potatoes, Rice and fresh veggies and fruit.

Here are a few starters:

Jif Peanut Butter ........ NO PLAYDO (it is made with wheat)

Oscar Meyer hot dogs

Yoplait

Kraft will clearly list all ingred.

Dole Fruit Cups

Vanns Gluten Free Eggos

V-8 Splash

jELLO

Smuckers Jelly

Cheetos

Lays Stack

NoGluGirl (a member here) has a long list of named product that are gluten free. You can PM her and I am sure that she will send it to you.

There are many mother of child celiac and they are a great bunch and so very helpful.

I hope that this is helpful.

Lisa

Guhlia Rising Star

Ditto everything that Momma Goose said... My daughter is also a very picky eater. Here are some of her favorites:

apples with peanut butter (Jif)

pancakes made with gluten free flour

waffles made with gluten free flour

corn tortilla chips with cheese whiz

carrot sticks dipped in Sweet Baby Ray's honey BBQ sauce

grapes cut in half the long way

Cracker Barrel cheddar cheese

Kraft string cheese

Rice crackers w/ peanut butter

Tuna fresh out of the can, room temperature (yuck, I know)

Seltzer's sweet balogna

Kraft singles - yellow

Stretch Island Fruit Leathers

tinkyada pasta w/ cheese whiz or butter and parmesean

Great Value brand vienna sausages

Oscar meyer cheese dogs

Mashed potato with Kraft orange powdered cheese in them

Brocolli with Kraft orange powdered cheese on them

Brussel sprouts smothered in margarine (Great Value Brand is gluten free)

Carrot Raisin salad w/ Kraft light mayo, a little lemon juice, and sugar

Dora's Cinnamon Stars Cereal

Mickey Mouse Clubhouse Cereal

Disney's Little Einstein's Cereal

Cocoa Pebbles

Fruity Pebbles

I also make her special treats. I make popsicles out of carrots, green beans, berries, and fruit juice. I puree them all together and then freeze in a popsicle tray. This is a great way to get added veggies into their diets. You can also make smoothies in the same way, just stick to only carrots for the veggies, they blend in very easily with fruits and you can't even taste them. Your son can even help you to put the fruit into the unplugged blender. He'll like that. If he needs extra calcium, you can use milk as the liquid and you can even add nonfat dried milk powder for extra calories if needed. Banana, strawberry, yogurt, and milk tend to be a favorite of my daughters. If he's lacking in protein, try adding small amounts of cooked chicken to the popsicles. It sounds gross, but it works.

Also, I finally convinced my daughter to eat meat by giving her dipping sauces. She started out with five different sauces: ketchup, BBQ, ranch dressing, honey, and honey mustard. She finally narrowed it down to just honey and BBQ. Now she typically prefers honey. She'll eat fresh veggies too sometimes in honey or BBQ. She really liked the fact that she had so many choices and that's why she started trying things. Perhaps your son will do the same.

What did your son like pre-diagnosis? We can probably point you in the right direction on substitute foods.

JennyC Enthusiast
Ditto everything that Momma Goose said... My daughter is also a very picky eater. Here are some of her favorites:

apples with peanut butter (Jif)

pancakes made with gluten free flour

waffles made with gluten free flour

corn tortilla chips with cheese whiz

carrot sticks dipped in Sweet Baby Ray's honey BBQ sauce

grapes cut in half the long way

Cracker Barrel cheddar cheese

Kraft string cheese

Rice crackers w/ peanut butter

Tuna fresh out of the can, room temperature (yuck, I know)

Seltzer's sweet balogna

Kraft singles - yellow

Stretch Island Fruit Leathers

tinkyada pasta w/ cheese whiz or butter and parmesean

Great Value brand vienna sausages

Oscar meyer cheese dogs

Mashed potato with Kraft orange powdered cheese in them

Brocolli with Kraft orange powdered cheese on them

Brussel sprouts smothered in margarine (Great Value Brand is gluten free)

Carrot Raisin salad w/ Kraft light mayo, a little lemon juice, and sugar

Dora's Cinnamon Stars Cereal

Mickey Mouse Clubhouse Cereal

Disney's Little Einstein's Cereal

Cocoa Pebbles

Fruity Pebbles

I also make her special treats. I make popsicles out of carrots, green beans, berries, and fruit juice. I puree them all together and then freeze in a popsicle tray. This is a great way to get added veggies into their diets. You can also make smoothies in the same way, just stick to only carrots for the veggies, they blend in very easily with fruits and you can't even taste them. Your son can even help you to put the fruit into the unplugged blender. He'll like that. If he needs extra calcium, you can use milk as the liquid and you can even add nonfat dried milk powder for extra calories if needed. Banana, strawberry, yogurt, and milk tend to be a favorite of my daughters. If he's lacking in protein, try adding small amounts of cooked chicken to the popsicles. It sounds gross, but it works.

Also, I finally convinced my daughter to eat meat by giving her dipping sauces. She started out with five different sauces: ketchup, BBQ, ranch dressing, honey, and honey mustard. She finally narrowed it down to just honey and BBQ. Now she typically prefers honey. She'll eat fresh veggies too sometimes in honey or BBQ. She really liked the fact that she had so many choices and that's why she started trying things. Perhaps your son will do the same.

What did your son like pre-diagnosis? We can probably point you in the right direction on substitute foods.

Thank you so much for your help! Unfortunately, the only things that my son will really eat dependably are cereal, pasta, crackers, bread, and poultry. He's a carb junkie!!! That is why this is so hard. I've bought lots of new products. Some have been bad, others are OK. Thanks again for all ideas!

Guhlia Rising Star

He may be addicted to the gluten. That happens a lot of times with Celiacs pre-diagnosis. You may find that his taste opens up a bit once he's feeling much better.

Pasta - Tinkyada

Cereal - Dora Stars, Cocoa Pebbles, Fruity Pebbles, Mickey Mouse Clubhouse, Little Einstein's

Crackers - Schar or glutano

Bread - Kinnikinnick white sandwich bread or Kinnikinnick cheese tapioca bread (www.kinnikinnick.com)

Lisa Mentor
Thank you so much for your help! Unfortunately, the only things that my son will really eat dependably are cereal, pasta, crackers, bread, and poultry. He's a carb junkie!!! That is why this is so hard. I've bought lots of new products. Some have been bad, others are OK. Thanks again for all ideas!

Jenny:

It is really important that he be gluten free.

I would suggest that you spend some time here reading the posts. There is a wealth of information here. Celiac is a very important in young children and it needs immediate concern.

I did not know anything about Celiac until the doctor told me I have it. As distressed as I was, I learned. You have to learn for you son. Please be an active member here and learn from those that have come before you.

pugluver31902 Explorer

I know that this probably isnt what you are thinking right now, but you are so lucky he was diagnosed so young! If you and him stick with the gluten free diet, and have NO CHEATING, his risks for cancer and other problems wont be any higher than people without celiacs. It is really hard to get the hang of, but soon it will be a lot easier. Just be careful about cross contamination. Dont share cutting boards or things like that. Also, wheat can be listed as many other names such as modified food starch, spelt, and other things. Im sure someone has a list on here somewhere. In the beginning, you just have to check everything! Salad dressings, sauces, especially soy sauce and things like that. After a while, you find brands that you know are safe. Its hard to tell sometimes without asking questions. Call over the counter medication companies and make sure the medication is gluten free. Ask TONS of questions at restraunts. Even french fry's are usually made in oil shared with breaded products. Even a tiny amount of gluten will cause intestinal damage even if he doesnt physically get sick from it.

Enviro kids is a brand made by Natures Path. They have wonderful gluten free kids food such as peanut butter panda puff cereal, choclate rice crispy cereal bars, vanilla animal cookies, and stuff like that. I find it to all be very tasty. Not all flavors are gluten free, but the boxes that are, are clearly labled GLUTEN FREE in the top corner. Good luck!


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JennyC Enthusiast
Jenny:

It is really important that he be gluten free.

I would suggest that you spend some time here reading the posts. There is a wealth of information here. Celiac is a very important in young children and it needs immediate concern.

I did not know anything about Celiac until the doctor told me I have it. As distressed as I was, I learned. You have to learn for you son. Please be an active member here and learn from those that have come before you.

I will definitely spend a lot of time here. I have already spent quite a bit, and have learned many things. I am very committed to sticking with his diet. I am finding that it is very much so trial and error, at least at first! I am fortunate to live near Bob's red mill headquarters, and I have purchased lots of different grains to get a good start! I am just so grateful to finally know the cause of his symptoms. I can't wait for him to start growing like a weed!!!

Lisa Mentor

:)

I will definitely spend a lot of time here. I have already spent quite a bit, and have learned many things. I am very committed to sticking with his diet. I am finding that it is very much so trial and error, at least at first! I am fortunate to live near Bob's red mill headquarters, and I have purchased lots of different grains to get a good start! I am just so grateful to finally know the cause of his symptoms. I can't wait for him to start growing like a weed!!!

If you have any questions, ask away :)

taravabeach Newbie

My 3 year old was dia at 18 mths so I know what you are feeling...overwhemled! At first I went crazy but I have lightened up over the years and this is what I have been doing. As far as the malt, my daughter (who would thrown up) has had rice crispy treats, frosted flakes, so the malt which I stayed away from a first seems okay. Below is a list of things that I use that work. I have two other kids so I try to make things as easy as possible so they can all be eating the same "thing".

Normal Foods

Eggs

Bacon

Frosted Flakes

Fruit

Tuna Fish

Potatoes

Ora Ida French Fries (nothing seasoned-just plain)

Beans

Ham

Turkey

Applesauce

Cheeses

Tacos!

Chicken

Chick-Fil-A waffle fries/grilled chicken (great for an outing)

Ice Cream (Bryers _Van or Choc)

Utz Chips (certified gluten free)

Corn

Pickles

Ball Park Franks-all beef

Ragu Sauce

Parm Cheese

Peanuts

Special Food

Amy's Gluten Free Mac and Cheese-a must

Gluten Free Pasta-kind

Mi-Del Gluten Free Cookies

Gluten Free Cereal

George's Cheese Pizza

Rice Crackers

Gluten Free Waffles & Bread-hit or miss

Gluten Free Pantry Brownie Mix/Cake Mix

pugluver31902 Explorer

I didnt know frosted flakes were gluten free!

Nic Collaborator
I didnt know frosted flakes were gluten free!

Frosted Flakes are not gluten free. Just because a child does not react to the malt does not mean they should eat it. Malt is forbidden for Celiacs and any cereal with it should not be eaten. I know it is frustrating, you find a cereal that the ingredients look ok and you are half way through the list and you see "malt extract". That means your child cannot have it. My son likes the following:

Breakfast:

Vanns Waffles (original or apple cinnamon)

Dora Cereal

Cocoa Pebbles and Fruity Pebbles

Natures Path Corn Flakes

All of the Envirokids cereals (one looks like cocoa crispies and we make rice krispy treats out of it)

Gluten Free Naturals pancakes

Foods by George blueberry muffins

Lunch:

Glutinio (sp) frozen mac and cheese

hotdogs (check your brand) and Ore Ida microwavable fries

Gluten Free Naturals pizza

Trader Joe's or Tinkyada pasta with butter and parm. cheese

Ener G Foods tapioca light bread with peanut butter and jelly

Dinner:

gluten free pasta and gluten free meatballs (made with Ener G foods gluten-free breadcrumbs)

meatloaf made the same way as the meatballs

Any meat made without forbidden ingredients

Betty Crockers instant mashed are gluten free (I get the non flavored kind, believe it or not he will not eat the real thing, just instant <_< )

Any veggies that are not in a sauce

Shrimp Scampi made with either gluten free pasta or rice

Snacks:

Doritos Cool Ranch

Fritos

Lays plain Potato chips

Envirokids cereal bars

Glutino cookies

Kinnickinick (sp) cookies are good too

As you can see there are plenty of choices once you get the hang of it. My son was 4 when he was diagnosed. Because he was so young he trasitioned very well to the new diet. He still gets upset sometimes when he see someone eating something he can't have but he does ok. Good luck, you will do fine once you figure this out.

Nicole

shayesmom Rookie

It's very important that celiacs stay on a 100% gluten-free diet. NO trace amounts of gluten are okay....there's enough risk for exposure with accidental glutenings.

There are celiacs who don't show symptoms to certain gluten ingredients (like spelt bread, malt, etc.). Just because you aren't observing a reaction does not mean that the intestines aren't being damaged. They are. People who are gluten intolerant need to stay away from ALL sources of gluten.

Also, you will need to check in certain main-stream foods. Tuna (in water) may contain vegetable broth...which can contain gluten. Check gluten status on-line or by calling the manufacturer. Lunch meats may also contain gluten. Be sure to buy only gluten-free varieties and if purchasing from the deli in your grocery...be sure to have them use a clean slicer as well as change their gloves. You might want to do that on a weekday and not a Saturday when they are incredibly busy. ;)

Some cheeses (like blue cheese) may contain gluten. Most grocery stores now offer a list of gluten-free foods. Also, please be careful when buying french fries or other fried items in restaurants. Not all fast food chains use dedicated fryers which means that they may be cooking breaded foods in the same oil as their fries. That means there's a risk for cross-contamination. You will have to ask what the policy is at each different restaurant. For example, the Wendy's in my town does not have a dedicated fryer....but the one in the next town over does. So I drive the extra 5 minutes to go to the one that does on the occasions we want fries.

For anyone starting this lifestyle, I highly recommend getting a subscription to Living Without magazine. It is the best source for recipes as well as new products available. You can check out their on-line recipes as well. Open Original Shared Link

This diet is VERY overwhelming in the beginning....especially the first 6 months. Once you find products you like and some decent recipes, it does get easier. And you may be surprised one day to find that this has all become second nature. So hang in there. It DOES get better.

pugluver31902 Explorer

So tuna in water is not ok? I knew that hydrolized vegetable protien was bad, but I didnt know vegetable broth was bad. Hum... What if it just says Ingretiants Tuna, water. Is that ok? I also didnt know that cool ranch doritos were ok! I know that a lot of thier chips have wheat in them, so I figured that they were all off limits due to cross contamination. I also didnt know you could ask at Wendy's if they have a dedicated fryer. Neat!

shayesmom Rookie
So tuna in water is not ok? I knew that hydrolized vegetable protien was bad, but I didnt know vegetable broth was bad. Hum... What if it just says Ingretiants Tuna, water. Is that ok? I also didnt know that cool ranch doritos were ok! I know that a lot of thier chips have wheat in them, so I figured that they were all off limits due to cross contamination. I also didnt know you could ask at Wendy's if they have a dedicated fryer. Neat!

If the ingredients say tuna, water, salt....it's okay. But some companies add vegetable broth to their tuna which isn't always okay. It's a bit like looking for chicken or vegetable broth to purchase for soups. Only a few brands are gluten-free. So if a non-gluten-free broth is used in the tuna, it's contaminated.

There are a few restaurants that have dedicated fryers. McDonald's used to advertise that for gluten-free individuals and then there was that debacle where gluten and dairy were said to be in the oil itself as a flavoring. I haven't bothered to look into the gluten status of their fries since then because dd can't have dairy as well. So it's been a moot point for us. :rolleyes:

It takes a bit of time to learn all of the sources of hidden gluten. I'm hoping that new labelling laws will help alleviate a lot of this confusion!

Juliet Newbie

"All of the Envirokids cereals (one looks like cocoa crispies and we make rice krispy treats out of it)"

Actually, not all of the Envirokids cereals are gluten free, but the cereals that are gluten-free are clearly labeled right on the front of the box. They make a Cheerios type cereal (I think Orangutan O's?) and another oat bran cereal that are both not gluten free. I don't know if there are others, but the three I know of that are gluten-free by them are Panda Puffs (less sweet version of Peanut Butter Captain Crunch), Gorilla Munch (cross between Kix and regular Captain Crunch) and Koala Crisp (like Cocoa Krispies). Also, Nature's Path (same company as EnviroKidz) makes a gluten-free Puffed Rice cereal that is very close to regular Rice Krispies. I'll make the marshmallow treats with either that cereal or Whole Foods brand puffed rice cereal.

And remember, you can always feed him rice. You can even get a sticky, high starch content rice, cook it up, roll it into balls, maybe add a little salt and hand it to him that way. My 16 month daughter also loves to also eat the Corn Crunch 'ems and Rice Crunch 'ems cereals from Harvest Valley. Harvest Valley also has great Rice Bran Crackers that are very similar to graham crackers.

And besides Cool Ranch Doritos, Cheetos, Fritos, most corn chips, some potato chips, most popcorn in bags, Pirate's Booty are all gluten-free, too!

HawkFire Explorer

I must comment on this post. This is bad information. I know you are attempting to help, but you are not helping by confusing the facts. You cannot have malt if you have celiac disease. Period. I'm sorry to have to deliver the bad news to you, but in the best interest of your child and other posters who need advice, I must state clearly that malt cannot be negotiated into the diet of any celiac.

My 3 year old was dia at 18 mths so I know what you are feeling...overwhemled! At first I went crazy but I have lightened up over the years and this is what I have been doing. As far as the malt, my daughter (who would thrown up) has had rice crispy treats, frosted flakes, so the malt which I stayed away from a first seems okay. Below is a list of things that I use that work. I have two other kids so I try to make things as easy as possible so they can all be eating the same "thing".

Normal Foods

Eggs

Bacon

Frosted Flakes

Fruit

Tuna Fish

Potatoes

Ora Ida French Fries (nothing seasoned-just plain)

Beans

Ham

Turkey

Applesauce

Cheeses

Tacos!

Chicken

Chick-Fil-A waffle fries/grilled chicken (great for an outing)

Ice Cream (Bryers _Van or Choc)

Utz Chips (certified gluten free)

Corn

Pickles

Ball Park Franks-all beef

Ragu Sauce

Parm Cheese

Peanuts

Special Food

Amy's Gluten Free Mac and Cheese-a must

Gluten Free Pasta-kind

Mi-Del Gluten Free Cookies

Gluten Free Cereal

George's Cheese Pizza

Rice Crackers

Gluten Free Waffles & Bread-hit or miss

Gluten Free Pantry Brownie Mix/Cake Mix

I would answer the question about hydrolyzed whatever in tuna. Hydrolyzed anything has the same impact on your body as MSG. Yeast Extract is another seemingly benign word for MSG. Avoid it.

I noticed that some posters suggest items such as "rice crackers" as if all rice crackers are gluten free. They're not. Every item needs to be investigated. One type of HOTDOG CONTAINS gluten. *(I cannot recall the brand as I do not eat HotDogs.) Do not use a bbq where they have been prepared. Many bbq briquets contain WHEAT. There are minute details to this diet that will establish success or failure. You must be mindful of every particle that goes into your child. Check his chapstick and lotions. Check your shampoo and conditioner.

Do not be overwhelmed. This is the easy part. The difficult part is when you have a child suffering with no understanding of how to make it better. Be thankful that you can control your child's illness with diet and not rely on unsafe medications that will damage his liver, kidneys, skin... You are a lucky mom. Bless your child twice as much as you have been blessed. Do the hard work for him now. He will admire your efforts when he is old enough to understand what you did for him.

You can have quite a bit of good food. My family currently enjoys the Glutino bagels for breakfast. We prefer the Kinnikinnick brand pancake mixes. They are excellent. Sandwich bread for a young child is essential. I suggest ordering your breads from Kinnikinnick as they are trustworthy, and the bread is sliced thinly enough for a small child. Toasting slightly is best. I have found Bob's Red Mill bread mixes to be quite delicious. My daughter made a wonderful Chicken Pot Pie using the BRM mix the other night and everyone agreed it was as good as any gluten pie.

You might want to steer clear of all the wonderful gluten free junk food. It's simply not necessary to ply a young child with junk food in order to make up for a lack of gluten. This is an opportunity to reassess the diet of your family. Who cares that potato chips tend to be gluten free? They are horrible for your body.

I would recommend that you make purchases after asking for suggestions simply to avoid spending and wasting money. Some gluten free products are quite terrible. I have not found a decent Enjoy Life product. I'm sorry to insult the company, but the products are quite offensive even to smell.

These brands I recommend:

TINKYADA (the only pasta we use)

KINNIKINNICK (quite good)

GLUTINO (bagels are very good- must toast or too dry. Cereal bars are very good.. pretzels have yeast extract which is MSG)

ENERG CRACKERS... (Nothing else by EnerG is very good)

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But there’s safety and governing regs in the UK for this sort of thing. Assuming it would be very similar over the pond in fairness). “5. Do I need certified gluten-free toothpaste, hand soap, shampoo, or moisturizer? (For example: Vaseline and Colgate don’t contain gluten ingredients but say they can’t guarantee it’s gluten-free.)” This comes down to personal threshold of gluten tolerance. People that are highly sensitive may need certified products. Especially those with dermatitis herpetiformis - the skin manifestation of gluten sensitivity. Listen to your body on this one. “6. Is spices like pepper with “may contain traces of gluten” safe if no gluten ingredients are listed? Or does everything need to be labeled gluten-free?” This one is easy - when following a strict gluten free diet, avoid products that say May contain traces of gluten. But it does not have to be labelled gluten free. There are many foods naturally gluten free. Having said that, there is nuance and personal tolerance threshold. If you’re super sensitive “may contain gluten” labelling is a godsend. But this kind of labelling is more aimed at informing customers with type 1 food hypersensitivity/ allergy reactions. The company is basically legally covering themselves, because there may be a risk of cross contamination. Not to be confused that it means there is cross contamination. In addition to products being labelled gluten free. Many products that are labelled can still contain gluten by the way - in fact any processed products labelled gluten free can still contain the allowable level of gluten (up to 20 parts per million according to Codex). A study was done not too long ago that showed gluten free processed products such as cereals, breads, flours etc. can and some are in fact contaminated and have above the legal allowable amount of gluten in them. While most gluten free products are fine for most celiac patients and tolerated, highly sensitive patients fail to heal fully if relying on processed gluten free products. The trace gluten exposure adds up for someone eating a typical western diet of gluten free cereal for breakfast, gluten free sandwich for lunch, gluten free pasta or pizza for dinner for example day after day, week after week. This is why, at least in the beginning after diagnosis, the gluten free diet should be one of whole real food - food that does not require a label. Meats, oily fish, eggs, beans, natural gluten free complex carbohydrates and vegetables according to custom and taste. Limit fruit as fructose worsens leaky gut and has been hypothetically linked to increased OCD and ADHD - Professor Richard Johnson published study on this recently. “7. Is continuing to only eat my own food the better choice, or could I eventually go back to eating what my mom cooks if she’s careful?” NO and YES. What you listed as your current, limited diet is nutrient poor. Correct it as soon as possible for your own sake and future health! Ditto what others have replied regarding vitamin and minerals that are lacking in malabsorption syndromes like celiacs and need replenishing. Gluten free products are not fortified. You were likely healthier, dare I say it, on a gluten containing diet for this reason. Your brain , and gut for healing and maintenance, needs lots of nourishment from omega 3s, B complex vitamins, folate, B12, iron, selenium etc. Meats, fish, natural fats that come with, do not fear - the brain is made of fat. Limit sugar, seed oils, and high glycemic cereals and fruit like bananas unfortunately as they can cause blood sugar highs and lows that can worsen anxiety in some people. Refined carbohydrates should be limited for the same reason. Fructose and simple sugars in excess feed the unhealthy gut bugs that wreak havoc with anxiety disorders like OCD. White potatoes can be problematic for some, also. It can take six weeks of elimination to see improvements. Note, consult your physician regards insulin adjustment if you reduce carbohydrates in the diet. Dr Bernstein diabetes protocol has worked for thousands. Ketogenic and low carbohydrate diets for mental and neurological conditions have shown improvements. Limited studies have and are being conducted under metabolic psychology and nutritional psychology. In a good proportion of anxiety disorders, mental, and neurological conditions including dementias, the brain is lacking nutrition and usable energy, not a drug. Similar in many autoimmune conditions, including celiacs, the prevailing hypothesis is that gut inflammation and resultant permeability allowing exposure to antigens begets triggering the genetically susceptible immune system response. Modern lifestyle exposure, one of the biggest being the food we choose to eat plays a huge role. Avoid ultra processed products, high in seed oils, refined grains, and sugar. Not just gluten can cause a leaky gut. Fructose, alcohol, egg white lysozyme, emulsifiers, added gums, the list goes on. “8. is cutlery from dishwasher safe if there are stains? Stuff like knives is used for cutting gluten bread or fork for noodles etc. I often see stains which i dont know if it’s gluten or something else but our dish washer doesnt seem to make it completely clean.” If in doubt have your own cutlery set, plate and dishes etc. for your sole use that you handwash yourself. Carry a camping fork/spoon set when out and about if needed. “9. I wash my hands multiple times while preparing food. Do i need to do the same when touching my phone. Like if i touch the fridge handle, I wash my hands then touch the phone. I dont eat while using my phone but i leave it on my bed and pillow and my face could come in contact with where it was.” That’s a classic OCD fear. Nothing to do with gluten as such. OCD brain is using gluten as the excuse here. I personally have the habit of using a cleansing wipe or dust cloth on my phone, nightly, that eases this sort of worry. For example a micro fibre dust cloth will do the trick, keep one on your nightstand? They are antibacterial as particles cling to the cloth. “10. Do i need to clean my phone or laptop if theyve been used by people who eat gluten? Even if no crumbs fall onto my keybaord, i mean because of invisible gluten on their fingers.”  NO. But again these OCD thoughts are hard to argue with. If in doubt, just a quick wipe with a cloth daily should suffice. Normal cleanliness practice. But if you don’t, or forget, don’t sweat the small stuff. “11. Does medication/supplements have to be strictly glutenfree? One company said they couldn‘t guarantee if their probiotics don’t contain traces of gluten.” Better if it is gluten free, yes. “12. I had bought supplements in the past, some of them say glutenfree and some of them dont(like the brand „NOW“ from iherb). I bought them and used them when i wasnt washing my hands so often, are they still safe? As I touched and opened them after touching door knobs, water taps etc. It was like a year ago when i bought those and even though i was eating gluten-free, I never worried about what i touch etc.” Still safe if do not explicitly contain gluten grains / derivatives AND if within the use by and use within dates. “I know this post is long. I’m just extremely overwhelmed. I’m trying to protect myself from long-term health damage, but the OCD is destroying my quality of life, and I honestly don’t know what’s a reasonable level of caution anymore.” Really hope these replies to your questions help. Just remember, in the midst of overwhelming thoughts and darkness under OCD clouded vision, the light and sunshine is always shining above. Take a moment or two when you are able in each day - even if it’s last thing at night - to meditate. Focus on something that you enjoy and appreciate. Or sit in a quiet space and try to relax and tune in to your higher self. Ask for guidance and soothing from your guardian angel. Over time it works but don’t worry if your brain is anxious. Eventually it will quieten down some. Try to focus on a real food, nutrient dense and naturally gluten free diet, this will help your anxiety and future health in the long run. Please eat real food - not cornflakes and sandwiches. Eat a steak, eggs or fish for example. Gluten exposures may happen, but don’t sweat it, dust yourself off so to speak, and carry on with a natural gluten free diet as best you can. Own your OCD don’t let it own you! Similarly, when it comes to a gluten free diet for celiac disease, own the process, don’t let it own you! You’re 18. That’s great. I’ve been managing OCD since childhood (in my 40s now. Many years of research, trial and error so to speak. Diet makes a difference. To quote Doc Brown to teenagers Marty and Jennifer, ‘ …your future hasn’t been written yet. No one’s has. It’s whatever you make it. So make it a good one.’
    • maryannlove
      Unfortunately not going to be able to let you know how Amneal is working because I still have almost 3 month supply of Mylan.  Had annual appointment with endocrinologist last week (though get scripts for blood work more often) and since was on my last refill, she sent new script to pharmacist.  Staying on my Mylan until it's gone.  (I tend to build up a supply because after trying a couple of endocrinologists for my Hashimotos, one finally got my thyroid regulated by my taking only six days a week instead of adjusting the strength which had me constantly up and down.  Will be forever grateful to her.  Apparently high percentage of folks with Celiac also have Hashimotos so all this relevant/helpful on Celiac.com.    
    • KimMS
      Thanks for sharing this! Have you started taking the Amneal? I'm curious how it's going for you. My pharmacy gave me the option of Accord, Macleod or Amneal. I didn't realize that Amneal was formerly Lannett, or I might have chosen that one. However, I did read some anecdotal reports that some people had side effects with Amneal, so I chose Accord. I have been taking it for 3-4 weeks and the past 10 days I have developed extreme fatigue/sluggishness, joint pain and some brain fog. I don't know if it is the new levo med, but nothing else has changed. Has anyone else taken Accord levo? Any issues? It seems to fall into the "no gluten ingredients, but we can't guarantee 100%, but it's likely safe category." I'm wondering if it is worth switching to Amneal or at least getting my thyroid levels checked. If the med is causing my symptoms, I'm guessing it's not because of gluten but maybe the potency is different from Mylan and I need different dosing. Accord was recalled for lower potency, but my pharmacist said the pills I have were not part of that lot.  
    • Mrs Wolfe
      I appreciate the information and links.  
    • Mrs Wolfe
      Thank you for the information.   
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