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New To Gluten Free Diet, Need Support!


qtmamaof6

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qtmamaof6 Newbie

Hi everyone, I just need support, and to vent somewhere about how hard this all is! My 4yo son was diagnosed with celiac disease in mid April. He was frequently vomiting at least 3-4 times a week, not growing well, really sick, etc. He also has a whole work up of other medical issues, but I won't go into detail about everything. They had to do an endoscope on him, and found he was severely inflamed, his villia (not spelling that right) were blunted, and on his biopsy, it came back positive for celiac disease. I am a stay at home mom to 6 kids, and started crying with his diagnosis, because feeding a family healthy and getting dinner on the table every night was hard enough, now I had to cut out gluten. Soon after my son was diagnosed, I realized my husband had very similar symptoms to celiac disease, and he was found to have it as well. My pediatrician recommended all my children be tested, and my 4yo, as well as our 10yo daughter, 2yo son, and 12 month old baby girl were found to have celiac disease as well. Our 11yo daughter, and 8yo daughter and I don't have the disease. Not being able to grab something fast on busy nights is the hardest thing I am faced with. What have you all done to help combat that? My mother suggested freezing a few gluten free casseroles, and just popping those in on busy days. What casseroles do you know of that freeze and cook well? I have a ton of recipes I have been using, alot of my regular recipes were already gluten free, or I just had to modify them a little. Also, what bread machine do you use, and where can I buy one? We don't eat alot of bread, since it's sooooo expensive, and if I could make it at home, it would save us alot of money. I know this is long, I just feel so overwhelmed, and things just seem so hard and time consuming now. Another question I have is, were your kids ever anemic from celiac disease? My 12 month old daughter is anemic, and they are trying to figure out why. Thanks everyone!!!!!


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2sweetico Newbie

Hi! I'm fifteen and I was just diagnosed a few months ago.

One of my favorite things in the world to do is cook so I understand how hard it is to find recipes.

Firstly, since your son is so young, make sure you substitute baked goods rather than eliminate them. He can have almost all ice cream that doesn't have cookie dough or brownies or cookies in it. Even Betty Crocker has gluten free brownie mix and chocolate chip cookie mix. I made it for my friends the other day and they didnt even notice! It tastes better than the regular kind!! Plus, many macaroons don't have flour or you can make cookies just by substituting flour with almond flour or potato flour, etc.

French fries are great for kids as well! He can feel completely normal eating french fries with the rest of the family.

Some great casseroles you could make are, chesse and broccoli, sweet potato, anything with gluten free pasta, etc.

I found a ton of recipes on the South Beach diet website. Atkins probably has a lot too. You can make cheesy rice or potatoes au gratin.

go to simplysugarandglutenfree.com

she has tons of recipes!! even for cornbread!

I hope this helps!! Hang in there=)

scarlett77 Apprentice

Hi everyone, I just need support, and to vent somewhere about how hard this all is! My 4yo son was diagnosed with celiac disease in mid April. He was frequently vomiting at least 3-4 times a week, not growing well, really sick, etc. He also has a whole work up of other medical issues, but I won't go into detail about everything. They had to do an endoscope on him, and found he was severely inflamed, his villia (not spelling that right) were blunted, and on his biopsy, it came back positive for celiac disease. I am a stay at home mom to 6 kids, and started crying with his diagnosis, because feeding a family healthy and getting dinner on the table every night was hard enough, now I had to cut out gluten. Soon after my son was diagnosed, I realized my husband had very similar symptoms to celiac disease, and he was found to have it as well. My pediatrician recommended all my children be tested, and my 4yo, as well as our 10yo daughter, 2yo son, and 12 month old baby girl were found to have celiac disease as well. Our 11yo daughter, and 8yo daughter and I don't have the disease. Not being able to grab something fast on busy nights is the hardest thing I am faced with. What have you all done to help combat that? My mother suggested freezing a few gluten free casseroles, and just popping those in on busy days. What casseroles do you know of that freeze and cook well? I have a ton of recipes I have been using, alot of my regular recipes were already gluten free, or I just had to modify them a little. Also, what bread machine do you use, and where can I buy one? We don't eat alot of bread, since it's sooooo expensive, and if I could make it at home, it would save us alot of money. I know this is long, I just feel so overwhelmed, and things just seem so hard and time consuming now. Another question I have is, were your kids ever anemic from celiac disease? My 12 month old daughter is anemic, and they are trying to figure out why. Thanks everyone!!!!!

First off take a deep breath! My quickest go to meal isn't a casserole it is nachos. All it takes is a can or two of beans (my sons prefer black beans), some shredded monterey jack cheese, corn tortilla chips (I use Mission or Costco's Kirkland brand if I don't have time to make my own chips), and some salsa or avocado. Heat the bean on the stove with a little homemade taco seasoning set everything out. Each person takes a plate with some chips and puts desired amount of cheese, pop in the microwave for about 20-30 seconds, then pile on beans, salsa and/or avocado (maybe even some lettuce or peppers). Another quickie meal is pasta: I make my own meat sauce in a crock pot so by the end of the day all I have to do is cook the noodles and toss a salad. We also frequently do breakfast for dinner. I use Pamela's a make a triple batch of pancakes so that there's extra for a couple of mornings. I like trying to convert recipes to gluten-free. Google is a wonderful resource if you ever want to look for ways to make gluten-free versions of things. I've had great success making things like Mongolian beef and fried chicken. Yummm...now I'm hungry :P :P :P :P

I have a bread maker, but I honestly haven't used it all that much. I haven't had the time or money to find the right recipe. Don't get me wrong I've liked the bread I have made in it...but only fresh. I don't like it a day old at all. So I splurge and buy Udi's. I try to use it as sparingly as possible though since the cheapest i have ever bought it was at $3.49 a loaf.

My son is/was anemic. Our doctor told us to give him iron drops in some vitamin C fortified juice. try to make sure to give it at least an hour before any kind of milk product because calcium inhibits absorption. His anemia was caused by Celiac. He's feeling better now, but I can tell when he is glutened because all his anemic symptoms come back: tired, excessive sweating, shortness of breath, and icy hands are a few of his symptoms.

Tina B Apprentice

Regarding the anemia: I was diagnosed 20 years ago and one of my main symptoms was a severe iron deficiency anemia that did not respond to iron replacement.

Now about food. I keep gluten free pizza shells in the freezer and just put on my own toppings. Also, think about using a crockpot. You can put up stews, chili, soups etc. You can use any stew recipe with meat veggies potatoes. Most recipes have you flour the beef first. If you go to any regular grocery store you can get white corn flour and white rice flour in the international food section. (spanish and asian section) I put this and the beef in a large ziploc bag, shake and voila, evenly foured beef. Don't buy these flours in a health food store, they cost twice as much.

I do baked ziti with cheese, sauce and Bionature gluten free pasta. This one is great and hold together wonderful. The spaghetti actually twirls on your fork. Open Original Shared Link

This one is also great for past salads. I also like to make a huge chef salad for dinner with greens, hard boiled eggs, ham, cheese, olives etc. Wishbone Robusto Italian is gluten free. Says so right on the back.

Look at some of your old favorite recipes, you can usually adapt. Chicken and veal parmesan I do with gluten-free italian seasoned breadcrumbs. I've also done lasagna and mexican casseroles with corn tortillas between the layers. This is one of my favorites becaue you can mix up the ingredients. Open Original Shared Link

Tina B Apprentice

Hi everyone, I just need support, and to vent somewhere about how hard this all is! My 4yo son was diagnosed with celiac disease in mid April.

Rice krispie treats come out great made with Erewhon crispy brown rice cereal and they are easy to make.

Open Original Shared Link

CeliacMom2008 Enthusiast

Go to meals:

Mexican night - tacos, nachos, quesadillas

Spaghetti

LaChoy Chow Mein - I'm not a big fan, but my family loves it. It's not very healthy, but it is cheap and quick!

Lasagna - We have a small family, so I make a 9x13, eat one meal's worth, then cut cool in fridge, then cut into individual pieces, wrap in Saran Wrap and freeze

Fried Rice

Pancakes (we do breakfast for supper sometimes) - make extra and use the next day for PB&J on pancakes for lunch

Pulled Pork - this freezes really well, so make a big batch and then freeze

Grilled meat, steamed veggies, canned fruit - quick and healthy

Sloppy Joes w/ fries

Bell Evans Chicken Nuggets or Tenders w/fries and fresh veggies

Eggs in some variety

Time savers:

Make bread (we don't use a bread maker) (we like Gluten Free Pantry mix), slice, separate pieces with Saran Wrap and freeze in a gallon freezer bag - then when you want to make french toast, just pull out what you need. Also makes good PB&J for school lunches - no need to thaw, just spread with PB&J and it will be thawed by lunch.

Plan meals on the weekend for the whole week - Sunday's pot roast left overs can become Monday's stew for lunches or dinner; Sunday turkey can become turky and noodles later in the week; etc.

Freeze soups in the amount you will use them in (single serving for lunches, larger containers for quick dinners).

Freeze cooked ground beef, diced chicken, etc. so you can be ahead of the game when you need those for a recipe.

Mix batches of your favorite baked goods' dry ingredients and the refrigerate until you need them. I do this with things like biscuits, pizza crusts, etc. Getting all the ingredients out is the biggest time waster in my opinion. Drag them all out once and then just grab a bag and go for awhile.

Freeze pizza sauce in the quantity you need for pizza night.

Freeze individual pieces of cake and cookies to pull out for class parties throughout the year. When my son was younger I would get a list of birthdays in his class and then send a piece of frozen cake or frozen cookies to school on everyone's birthday. I also use the frozen pieces of cake for other kids' birthday parties. When I make a cake for some reason I try to freeze some of it for future needs.

Money savers:

Use Amazon's subscription service - there's absolutely no risk, because you can cancel at anytime (even after only one order); shipping is free; you get bulk pricing PLUS another 15% off plus no tax or gas money. It's also a time saver for me because I don't have to run all over to get the ingredients I need. Things like cereal, pasta, cookies, oatmeal, flours are all MUCH cheaper than anywhere I can get things locally.

Ask your local stores to order cases of things for you that you can't get off Amazon. Many grocers will gladly sell you a case of something at a discount. They still make money but don't have to put it on the shelf. They will often buy you things they don't carry. I had to do this with Bell Evans Chicken Nuggets and Tenders until a store here started carrying them.

Make your own bread crumbs from ends of loaves. Freeze and use for meatloaf, breading, or any other recipe that calls for bread crumbs.

Your kids all need to know how to cook. It is now part of their required childhood education! So get them in the kitchen helping. Rotate dinner duties - one to set the table, one to clear, one to unpack dishwasher, one to clean fresh veggies, etc. If they aren't use to it in the beginning it may be a big hassle to teach everyone how to do what they need to, but the time you invest now will make your life easier and their success as a Celiac greater.

You can do this!! The beginning is the hardest, but I suspect with 6 kids you weren't eating out every night before. Once you get past the learning curve feeding 8 people gluten free won't feel much different than feeding 8 people gluten food.

qtmamaof6 Newbie

Hi! I'm fifteen and I was just diagnosed a few months ago.

One of my favorite things in the world to do is cook so I understand how hard it is to find recipes.

Firstly, since your son is so young, make sure you substitute baked goods rather than eliminate them. He can have almost all ice cream that doesn't have cookie dough or brownies or cookies in it. Even Betty Crocker has gluten free brownie mix and chocolate chip cookie mix. I made it for my friends the other day and they didnt even notice! It tastes better than the regular kind!! Plus, many macaroons don't have flour or you can make cookies just by substituting flour with almond flour or potato flour, etc.

French fries are great for kids as well! He can feel completely normal eating french fries with the rest of the family.

Some great casseroles you could make are, chesse and broccoli, sweet potato, anything with gluten free pasta, etc.

I found a ton of recipes on the South Beach diet website. Atkins probably has a lot too. You can make cheesy rice or potatoes au gratin.

go to simplysugarandglutenfree.com

she has tons of recipes!! even for cornbread!

I hope this helps!! Hang in there=)

Thanks, this is really helpful! My kids will love all of these foods!


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qtmamaof6 Newbie

First off take a deep breath! My quickest go to meal isn't a casserole it is nachos. All it takes is a can or two of beans (my sons prefer black beans), some shredded monterey jack cheese, corn tortilla chips (I use Mission or Costco's Kirkland brand if I don't have time to make my own chips), and some salsa or avocado. Heat the bean on the stove with a little homemade taco seasoning set everything out. Each person takes a plate with some chips and puts desired amount of cheese, pop in the microwave for about 20-30 seconds, then pile on beans, salsa and/or avocado (maybe even some lettuce or peppers). Another quickie meal is pasta: I make my own meat sauce in a crock pot so by the end of the day all I have to do is cook the noodles and toss a salad. We also frequently do breakfast for dinner. I use Pamela's a make a triple batch of pancakes so that there's extra for a couple of mornings. I like trying to convert recipes to gluten-free. Google is a wonderful resource if you ever want to look for ways to make gluten-free versions of things. I've had great success making things like Mongolian beef and fried chicken. Yummm...now I'm hungry :P :P :P :P

I have a bread maker, but I honestly haven't used it all that much. I haven't had the time or money to find the right recipe. Don't get me wrong I've liked the bread I have made in it...but only fresh. I don't like it a day old at all. So I splurge and buy Udi's. I try to use it as sparingly as possible though since the cheapest i have ever bought it was at $3.49 a loaf.

My son is/was anemic. Our doctor told us to give him iron drops in some vitamin C fortified juice. try to make sure to give it at least an hour before any kind of milk product because calcium inhibits absorption. His anemia was caused by Celiac. He's feeling better now, but I can tell when he is glutened because all his anemic symptoms come back: tired, excessive sweating, shortness of breath, and icy hands are a few of his symptoms.

Nachos, that is a great idea!!! Thanks so much! And it is good to know that anemia most likely is from celiac disease. I hope with her new gluten free diet, she will feel better!!!

qtmamaof6 Newbie

Regarding the anemia: I was diagnosed 20 years ago and one of my main symptoms was a severe iron deficiency anemia that did not respond to iron replacement.

Now about food. I keep gluten free pizza shells in the freezer and just put on my own toppings. Also, think about using a crockpot. You can put up stews, chili, soups etc. You can use any stew recipe with meat veggies potatoes. Most recipes have you flour the beef first. If you go to any regular grocery store you can get white corn flour and white rice flour in the international food section. (spanish and asian section) I put this and the beef in a large ziploc bag, shake and voila, evenly foured beef. Don't buy these flours in a health food store, they cost twice as much.

I do baked ziti with cheese, sauce and Bionature gluten free pasta. This one is great and hold together wonderful. The spaghetti actually twirls on your fork. Open Original Shared Link

This one is also great for past salads. I also like to make a huge chef salad for dinner with greens, hard boiled eggs, ham, cheese, olives etc. Wishbone Robusto Italian is gluten free. Says so right on the back.

Look at some of your old favorite recipes, you can usually adapt. Chicken and veal parmesan I do with gluten-free italian seasoned breadcrumbs. I've also done lasagna and mexican casseroles with corn tortillas between the layers. This is one of my favorites becaue you can mix up the ingredients. Open Original Shared Link

That is great, alot of really good ideas! I am so glad I found this site, it helps me not feel so alone, and have more ideas on how to handle it all! I hope with my babies new gluten free diet, she will start feeling better, and stop having anemia. Thanks again!!!!

qtmamaof6 Newbie

Go to meals:

Mexican night - tacos, nachos, quesadillas

Spaghetti

LaChoy Chow Mein - I'm not a big fan, but my family loves it. It's not very healthy, but it is cheap and quick!

Lasagna - We have a small family, so I make a 9x13, eat one meal's worth, then cut cool in fridge, then cut into individual pieces, wrap in Saran Wrap and freeze

Fried Rice

Pancakes (we do breakfast for supper sometimes) - make extra and use the next day for PB&J on pancakes for lunch

Pulled Pork - this freezes really well, so make a big batch and then freeze

Grilled meat, steamed veggies, canned fruit - quick and healthy

Sloppy Joes w/ fries

Bell Evans Chicken Nuggets or Tenders w/fries and fresh veggies

Eggs in some variety

Time savers:

Make bread (we don't use a bread maker) (we like Gluten Free Pantry mix), slice, separate pieces with Saran Wrap and freeze in a gallon freezer bag - then when you want to make french toast, just pull out what you need. Also makes good PB&J for school lunches - no need to thaw, just spread with PB&J and it will be thawed by lunch.

Plan meals on the weekend for the whole week - Sunday's pot roast left overs can become Monday's stew for lunches or dinner; Sunday turkey can become turky and noodles later in the week; etc.

Freeze soups in the amount you will use them in (single serving for lunches, larger containers for quick dinners).

Freeze cooked ground beef, diced chicken, etc. so you can be ahead of the game when you need those for a recipe.

Mix batches of your favorite baked goods' dry ingredients and the refrigerate until you need them. I do this with things like biscuits, pizza crusts, etc. Getting all the ingredients out is the biggest time waster in my opinion. Drag them all out once and then just grab a bag and go for awhile.

Freeze pizza sauce in the quantity you need for pizza night.

Freeze individual pieces of cake and cookies to pull out for class parties throughout the year. When my son was younger I would get a list of birthdays in his class and then send a piece of frozen cake or frozen cookies to school on everyone's birthday. I also use the frozen pieces of cake for other kids' birthday parties. When I make a cake for some reason I try to freeze some of it for future needs.

Money savers:

Use Amazon's subscription service - there's absolutely no risk, because you can cancel at anytime (even after only one order); shipping is free; you get bulk pricing PLUS another 15% off plus no tax or gas money. It's also a time saver for me because I don't have to run all over to get the ingredients I need. Things like cereal, pasta, cookies, oatmeal, flours are all MUCH cheaper than anywhere I can get things locally.

Ask your local stores to order cases of things for you that you can't get off Amazon. Many grocers will gladly sell you a case of something at a discount. They still make money but don't have to put it on the shelf. They will often buy you things they don't carry. I had to do this with Bell Evans Chicken Nuggets and Tenders until a store here started carrying them.

Make your own bread crumbs from ends of loaves. Freeze and use for meatloaf, breading, or any other recipe that calls for bread crumbs.

Your kids all need to know how to cook. It is now part of their required childhood education! So get them in the kitchen helping. Rotate dinner duties - one to set the table, one to clear, one to unpack dishwasher, one to clean fresh veggies, etc. If they aren't use to it in the beginning it may be a big hassle to teach everyone how to do what they need to, but the time you invest now will make your life easier and their success as a Celiac greater.

You can do this!! The beginning is the hardest, but I suspect with 6 kids you weren't eating out every night before. Once you get past the learning curve feeding 8 people gluten free won't feel much different than feeding 8 people gluten food.

This is alot of great information! I didn't know (Company Name Removed - They Spammed This Forum and are Banned) carried gluten free items! That is great! Thank you so much for all the information! I will be using it all!

Tina B Apprentice

That is great, alot of really good ideas! I am so glad I found this site, it helps me not feel so alone, and have more ideas on how to handle it all! I hope with my babies new gluten free diet, she will start feeling better, and stop having anemia. Thanks again!!!!

Just come to those of us who are veterans :D Never did let it run my life.

macocha Contributor

I have so been there...so been there. We are a family of 8...6 full time and 2 part time. I so totally understand your feelings. My son was diagnosed in March, so I am pretty new to this as well. I have one daughter that has fructose/intolerance malabsorption too, so three different diets in the household is a mess.

hang in there, and the lovely folks here gave you some wonderful ideas. I have an oreo cookie recipe I will post on a board and I also post recipes on my personal blog.

there are two yummy treats that you can start with first.

the betty crocker gluten-free brownies and devil food cake mixes are very, very yummy. not sure if you have to avoid those or not for other dietary issues, but those you can start with.

I also make rice krispy treats with rice chex. I also mix a small amt of white choc chips in with them to give them a bit of sweetness.

hang in there, and feel free to pm me with any ideas on the dinners with a large crowd. I am getting a handle on it - totally. :)

editing to add link to recipe I just posted:

Takala Enthusiast

Ethnic foods are the way to go.

Also, besides here, try Recipezar for gluten free recipes.

Rice noodles and sauce, Rice and beans, rice and lentils, rice and curry.... lentil warning. pick over lentils carefully for stray other grains if using dry, even the supposedly gluten-free ones.

All the foods that originate in the New World, such as beans, corn, squash, tomatoes, chiles, potatoes, quinoa, wild rice are usually safe. Some of you may be sensitive now to milk lactose but may be able to tolerate cheese and gluten-free yogurt made so the lactose is aged out. A baked potato can also be used as a base for chile or beans or cheese and broccoli. A simple soup base of a can of corn, beans, and tomatoes with the boxed gluten free chicken broth from Imagine can be the easiest, most filling thing. Canned pumpkin is an excellent vegetable thickener to add to soups and stews or it also makes dandy pumpkin based baked puddings.

Corn tortillas (read labels for hidden wheat) are a staple, as well as rice cakes. Both are good for smearing on peanut butter and jelly, or pizza sauce and cheese. Lundberg is the good rice cake brand.

Original Thai cooking with rice noodles and coconut milk based sauces has very little gluten unless it has been Americanized. Pad Thai is good.

Chinese stir fry, or fried rice, or teriaki with homemade wheat free tamari sauce.

African/Middle east - peanuts, sorghum. Amazing soup can be made from canned pumpkin, curry, and peanut butter and carrot juice, for instance. Leftover chicken can be added.

Indian Curry - yogurt sauces with spices, over vegetables and chicken, is easy to make gluten free.

Emergency BBQ sauce. Mix gluten-free ketchup (Heinz or one of the brands marked gluten free) with gluten-free mustard, and or molasses or honey.

American Tabasco is gluten-free, but read the label.

Fish sauce- Best Foods original Mayonaise is gluten free, and can be used to make other sauces by adding mustard or ketchup or relish, etc.

Salad dressing. I put ev olive oil in a cruet and apple cider vinegar and balsamic vinegars in to other bottles. Lemon juice is also good. Add a bit of sweetener, salt, pepper if you like it, and this is so much cheaper than prepared.

__________

I don't use a bread machine as there is just the 2 of us, but if I did, based on the reviews, I would with a large family try the Japanese Zo. I would then practice with oven baking or microwave cup baking to find a bread gluten-free flour mixture I liked and that nobody else was allergic to, and then would mix up my own gluten-free flour mixes in baggies. I have been a bread baker since a teenager so this isn't a big deal once you find the one true mixture you like.

Of course my metabolism now does not really need bread :lol:

On mixing gluten-free flours, this is easier than you think. Say you want a three way mixture of potato starch, sorghum, and rice flour. Buy three bags, open, and put each into a bigger ziplock and give to one of the kids to shake and knead after closing it.

You can mix two other kinds of gluten-free meals together in another bag. Say you like buckwheat or amaranth or almond meal.

Now you can put together a 5 way mix fairly quickly by taking a big glass measuring cup, and putting in say, half or 2/3 the amount of the first mix and the rest is the 2nd mixture.

Or you can lug 5 or 6 little bags out of the freezer every time and measure a 1/4 cup of each, one by one..... :rolleyes: You can also make your own dry baking mixes to which you just add the wet ingredients.

On the almond meal, I buy big bags of almonds at the farmer's market and grind my own in the blender, MUCH cheaper. I don't like flax.

Almond and amaranth tend to keep better in the refrigerator and don't mold up as quickly as regular gluten-free flours, and may not need xantham gums.

Some people hate bean flours. This is normal. I don't, because I don't have that sense of taste, but I believe the supertasters here are numerous.... :P If they are turning their noses up at the gluten-free breads, try experimenting with ingredients.

The Bette Hagman gluten-free bread books are classics and really good.

If you can't get a yeast bread to come out, add baking soda and cider vinegar to the recipe and convert it to a quick bread.

Underdone bread ? Put it back in the oven. Test for doneness by using knife, should come out clean.

"Baking times vary" is the mantra here.

precious831 Contributor

Do you have a slow-cooker? It helps a lot. It was very hard in the beginning, still is but doable. Our problem is that DD has multiple food allergies and so cooking is such a challenge. So anyway, I cook and then freeze a lot of stuff. I hope this helps, you already got some great advice but I thought I'd pipe in.

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      learned I had a high PTH level in 2022 suspected to be due to low vit D  got my vit D level up a bit but still have high PTH   I am 70 yrs old (today in fact) I am looking for someone who also has hyperparathyroidism that might be caused by malabsorption    
    • catnapt
      I am on day 13 of eating gluten  and have decided to have the celiac panel done tomorrow instead of Wed. (and instead of extending it a few more weeks) because I am SO incredibly sick. I have almost no appetite and am not able to consume the required daily intake of calcium to try to keep up with the loss of calcium from the high parathyroid hormone and/or the renal calcium leak.    I have spent the past 15 years working hard to improve my health. I lost 50lbs, got off handfuls of medications, lowered my cholesterol to enviable levels, and in spite of having end stage osteoarthritis in both knees, with a good diet and keeping active I have NO pain in those joints- til now.  Almost all of my joints hurt now I feel like someone has repeatedly punched me all over my torso- even my ribs hurt- I have nausea, gas, bloating, headache, mood swings, irritability, horrid flatulence (afraid to leave the house or be in any enclosed spaces with other people- the smell would knock them off their feet) I was so sure that I wanted a firm diagnosis but now- I'm asking myself is THIS worth it? esp over the past 2 yrs I have been feeling better and better the more I adjusted my diet to exclude highly refined grains and processed foods. I didn't purposely avoid gluten, but it just happened that not eating gluten has made me feel better.   I don't know what I would have to gain by getting a definitive diagnosis. I think possibly the only advantage to a DX would be that I could insist on gluten-free foods in settings where I am unable to have access to foods of my choice (hospital, rehab, nursing home)  and maybe having a medical reason to see a dietician?   please let me know if it's reasonable to just go back to the way I was eating.  Actually I do plan to buy certified gluten-free oats as that is the only grain I consume (and really like) so there will be some minor tweaks I hope and pray that I heal quickly from any possible damage that may have been done from 13 days of eating gluten.    
    • Jmartes71
      So I've been dealing with chasing the name celiac because of my body actively dealing with health issues related to celiac though not eating. Diagnosed in 1994 before foods eliminated from diet. After 25 years with former pcp I googled celiac specialist and she wasn't because of what ive been through. I wanted my results to be sent to my pcp but nothing was sent.I have email copies.I did one zoom call with np with team member from celiac specialist in Nov 2025 and she asked me why I wanted to know why I wanted the celiac diagnosis so bad, I sad I don't, its my life and I need revalidaion because its affecting me.KB stated well it shows you are.I asked then why am I going through all this.I was labeled unruly. Its been a celiac circus and medical has caused anxiety and depression no fault to my own other than being born with bad genetics. How is it legal for medical professionals to gaslight patients that are with an ailment coming for help to be downplayed? KB put in my records that she personally spent 120min with me and I think the zoom call was discussing celiac 80 min ONE ZOOM call.SHE is responsible for not explaining to my pcp about celiac disease am I right?
    • Amy Barnett
      What is the best liquid multivitamin for celiac disease?
    • Jmartes71
      I've noticed with my age and menopause my smell for bread gives me severe migraines and I know this.Its alarming that there are all these fabulous bakeries, sandwich places pizza places popping up in confined areas.Just the other day I suffered a migraine after I got done with my mri when a guy with a brown paper bag walk in front of me and I smelled that fresh dough bread with tuna, I got a migraine when we got home.I hate im that sensitive. Its alarming these places are popping up in airports as well.I just saw on the news that the airport ( can't remember which  one)was going to have a fabulous smelling bakery. Not for sensitive celiacs, this can alter their health during their travel which isn't safe. More awareness really NEEDS to be promoted, so much more than just a food consumption!FYI I did write to Stanislaus to let them know my thoughts on the medical field not knowing much about celiac and how it affects one.I also did message my gi the 3 specialist names that was given on previous post on questions on celiac. I pray its not on deaf door.
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