biopsy results in on DS

[ktgrok]

I'm including a snapshot of the results, but it sure looks like he has Celiac. I mean, it give some other possibilities but none match up that I can see...we haven't tested for H. Pylori but it says that causes gastritis and his stomach biopsies were normal. No stomach virus symptoms. He hasn't had any NSAID's in 6 weeks and those wouldn't cause an elevated TTGA. C-reactive protein, ANA and all other autoimmune markers normal other than low positive TTG-A. 

So looks like we just caught it early, I guess? Or he as a "mild" case (I realize there is no such thing). 

Hell. 

I'm partly glad to have a direction to take to help him, and totally overwhelmed and want to cry because he can't eat Chik-Fil-A nuggets ever again. And I KNOW that is a dumb thing to cry over when there are kids with cancer and horrible diseases, but darn it, this is going to be HARD for him and it makes me angry and sad. 

Now I need to get everyone else tested. DS19 has a script for lab work, including that but hasn't gone yet. DD8 is terrified of needles. And I can't imagine getting blood on a not quite 2 yr old is going to be fun. And we need to do everyone ASAP because I'm going to make the house gluten free which means we need the test done before cutting it out. And I'm assuming that if a kid has a positive TTG-A and a sibling with biopsy confirmed celiac we can skip the biopsy in them...if not, then they need to keep eating gluten. Ugh. 

I have a follow up with the GI doc on the 5th but want answers NOW!

Patience is not my strongest feature. 

Final Pathologic Diagnosis 
A.  Duodenum, biopsy: 
- Active chronic duodenitis, one of four pieces of tissue, duodenal 
bulb. 
B.  Stomach, biopsy: 
- Benign gastric mucosa. 
C.  Distal esophagus, biopsy: 
- Benign esophageal mucosa. 
D.  Proximal/mid esophagus, biopsy: 
- Patchy, mild active esophagitis with a maximum of 5 eosinophils in a 
high power field. 
E.  Rectosigmoid colon, biopsy: Benign colonic mucosa. 
  
Diagnosis Comment 
In the fragment with active chronic duodenitis in part (A) the 
specimen is from the antrum. There is a patchy increase in the density 
of intraepithelial lymphocytes in the lamina propria. The chronic 
inflammatory cell population of the lamina propria is mildly 
increased. There are neutrophils among the chronic inflammatory cells. 
There is mild villous blunting. Increased intraepithelial lymphocytes 
with relatively normal villous architecture as in the (A) biopsy can 
be seen in symptomatic, latent or partially treated celiac disease, 
dermatitis herpetiformis and first degree relatives of those with 
gluten sensitivity. The differential includes various systemic 
autoimmune disorders,  NSAID use, viral gastroenteritis and 
Helicobacter gastritis. 
  
  

 

 

 

 

Edited January 30, 2019 by Ktgrok

[Monica_in_Switzerland]

We were in the odd situation of having a positive gluten antibody blood test, but a negative biopsy, so I can't help interpret your biopsy results.  

What I can say is, six months from now, gluten-free will be easy.  

I totally agree with doing GF for the whole house while you are getting the hang of things.  We went GF for the house for about 8 months before I started bringing back some easily-contained gluten items from time to time.  

You will find you do a lot more home-cooking for a long time.  It is a real pain not to be able to run our and grab something on a busy day.  Eventually you'll find replacements for items your ds can't have.  

It felt like such a burden for the first month or so, and then... it wasn't anymore.  Don't aim for gluten replacements if you can, aim for naturally gluten free- eat more rice, more potatoes, etc.  

Good luck!

[Faith-manor]

I had a gluten positive antibody test with a negative biopsy. My doc says it happens, and at the very least to consider myself allergic to wheat but likely celiac even if "technically" the results were inconclusive. This makes sense for me because my sister has celiac disease, and going GF made my life radically better.

I do not avail myself much of GF products. We have one betty crocker sugar cookies mix we use. Around the holidays dh makes up a batch so I have a desert to take to events - and they are actually quite yummy cookies - and also uses it for the crust for GF cheesecake and is his go to specialty to bake for our anniversary.

Other than that, I only use a GF pizza crust because sometimes I just miss traditional pizza.

Otherwise, I use rice and polenta for my carbs at meals. Savory polenta is quite yummy - I put garlic and asiago cheese in it - and rice is my favorite when I've got left over beef or chicken veggie stew. I warm it up, spoon it out over a pile of rice, and it is great comfort food.

GF replacements, flours, crackers, desserts, etc. as a general rule are bizarrely expensive, and frankly, are not all that tasty so I recommend apart from finding a few things that he can take to events in order to feel normal - its hard to have food allergies, celiac, or both and be the only kid in the room not having dessert while everyone is stuffing their faces full of cake and cookies at the Christmas party - steer him away from that section of the grocery store. For growing boys, I'm a big fan of potatoes anyway....fiber, vitamin A, vitamin C, potassium....fill 'er up!

[Junie]

If your son does have celiac, Chick-Fil-A is one of the safest gf fast-food restaurants.  It will depend on how sensitive he is.  Yes, he will have to switch to the grilled nuggets, but the fries are the same.

One thing that helped when I went gf (about 10 years ago) was that I allowed myself some gf treats that I didn't share with anyone.  Just like everyone else had foods that I couldn't eat, I had foods that they couldn't eat.  (Most of this is because of cost.)  There are still gf products that I don't share.  They have their own cookies; they don't need mine.  It helps me mentally to not feel deprived.

There are still a few foods that I have trouble bringing into the house.  Kind of childish, I know, but I really don't want to see other people eating lemon meringue pie.  Dh will occasionally make me a gf pie and I eat it myself (and by everyone else a gluteny -- and cheaper -- version of the same).

Finding good gf products will be a lot of trial and error.  Try not to get frustrated with it.  If you make another thread, people can share their favorite gf products/recipes to get you started.

 

[ktgrok]

Thanks,I did just google Chik Fil A and was thrilled to see the fries have their own fryer! Not sure if he will go for the grilled nuggets or not right now, he's already so restricted in what he's eating, but he won't starve if he eats fries, fruit, and milk. 

Y'all...I have a grain mill. We are SO gluten FULL in this kitchen. 

Time for a deep clean I guess. But not today. Today I am not up for it. 

REALLY wish this had happened in summer...I get SAD and I think I am hitting PMS as well, and yeah. I realize that it wouldn't REALLY matter but I'm way more resilient in summer, lol. 

Oh, and good heads up about the polenta!!! He doesn't like grits, so doubt he will like it, but I LOVE polenta, as does DH, and although DD8 hasn't had it, she LOVES grits, so I bet she will. I don't like rice at all really but DS19 does, and the younger kids don't hate it but don't like it. But we will manage. 

Right now, DS is SO food restricted I have no idea what or how to make for him, honestly. But I'll figure it out. And hopefully as he heals he will want to eat more. Assuming the food restriction is from the celiac and not from something else (PANDAS specialist appointment is on March 13th....at least that gives us a chunk of time for him to be gluten free to weasel out what is related to celiac). And the wanting only cold foods makes more sense to me now that I see he has an inflamed esophagus! Cold foods would probably be soothing!

 

[Monica_in_Switzerland]

8 minutes ago, Junie said:

 

Finding good gf products will be a lot of trial and error.  Try not to get frustrated with it.  If you make another thread, people can share their favorite gf products/recipes to get you started.

 

2

 

Yes!  And if I don't see that thread, just tag me with @Monica_in_Switzerland .  I am VERY picky about GF recipes- they aren't any good unless they taste good to "normal people".  Based on that standard, I have about a half dozen EXCELLENT GF dessert recipes.  When you first start looking, try looking for "flourless" desserts, rather than GF.  Flourless desserts are aimed at a general audience, and just happen to be GF, so taste much better and don't require any sort of specialty ingredients.  

 

  

[Pen]

A lot of keto recipes can work when avoiding grain which should include glutens too.  

I am glad you are getting some answers even if it will be hard to implement.

 

[Jean in Newcastle]

What was his ttg again?  My dd was diagnosed with celiac with a ttg of just 10.  But her ttg continued to elevate in the months afterwards.  We weren't cheating.  It's just that these tests don't always show the picture for "right now" but the body continues to react. 

His villi are blunted.  I would say that is a positive marker for Celiac. 

[prairiewindmomma]

Get a consult with a SL-P and dietician team if the restrictions don’t ease up. I suspect the will once he starts feeling better. If not, we found our consult to be VERY helpful and practically minded. 

This is a huge change now but as a pp mentioned, in time this will become a new normal. 

Keep a running list on your phone of what is safe—what you tried and liked and tried and hated as you go along....

 

Edited January 30, 2019 by prairiewindmomma

[itsheresomewhere]

America’s treat kitchen has a wonderful gluten free cookbook ( How can it be gluten free).  Most of the recipes were delicious and keep us sane when we tried being gluten free for health issue.  I still use some recipes from it. 

Pamela’s baking mix is wonderful for pancakes.  

Edited January 30, 2019 by itsheresomewhere

[Mama Geek]

There are lots of great recipes out there for gf foods.  We have been doing it for years for DH.  I don't remember what else your son can't eat, but if you will let me know I can give you ideas.

 

[kbutton]

50 minutes ago, Ktgrok said:

Oh, and good heads up about the polenta!!! He doesn't like grits, so doubt he will like it, but I LOVE polenta, as does DH, and although DD8 hasn't had it, she LOVES grits, so I bet she will. I don't like rice at all really but DS19 does, and the younger kids don't hate it but don't like it. But we will manage. 

Assuming the food restriction is from the celiac and not from something else (PANDAS specialist appointment is on March 13th....at least that gives us a chunk of time for him to be gluten free to weasel out what is related to celiac). And the wanting only cold foods makes more sense to me now that I see he has an inflamed esophagus! 

I recently found that Bob's Red Mill has a brown rice hot cereal that is really good. It's a lot like cream of wheat, but the texture is like soft grits. I had never seen it before, but I really like it.

That timing is really awesome--I am happy it worked that way for you. If these findings and appointments were all smooshed together, it might be harder to sort.

My not-GF kids like a lot of GF items, so I am confident that you will find stuff. It may take some time for the taste buds to not feel like they are being shorted, so I do suggest a gap. My go-to flour (that I put off trying except when other people were using it) is Bob's Red Mill 1:1. It's really good. My dad made me homemade gingerbread with it over Christmas, and he liked it even though he eats regular flour normally. I haven't tried it for bread yet. Hodgson's Mill also has some good mixes if you can get them (Kroger stopped carrying a lot of their stuff, grr!).

We're at a stage where I can't make everything from scratch, and I have other food allergies that make even cooking from scratch difficult. If I can find some easy carbs that are not terribly bad, I do tend to splurge and get them (like brown rice GF English muffins). 

[cintinative]

1 hour ago, Ktgrok said:

I'm including a snapshot of the results, but it sure looks like he has Celiac. I mean, it give some other possibilities but none match up that I can see...we haven't tested for H. Pylori but it says that causes gastritis and his stomach biopsies were normal. No stomach virus symptoms. He hasn't had any NSAID's in 6 weeks and those wouldn't cause an elevated TTGA. C-reactive protein, ANA and all other autoimmune markers normal other than low positive TTG-A. 

So looks like we just caught it early, I guess? Or he as a "mild" case (I realize there is no such thing). 

Hell. 

I'm partly glad to have a direction to take to help him, and totally overwhelmed and want to cry because he can't eat Chik-Fil-A nuggets ever again. And I KNOW that is a dumb thing to cry over when there are kids with cancer and horrible diseases, but darn it, this is going to be HARD for him and it makes me angry and sad. 

 

 

I went through the same grieving when my son was diagnosed at age 6.  First off, he can have the Chic-Fil-A grilled nuggets and fries.  So take heart there. No Krispy Kremes though--and that stings. My son remembers how good they were.  I would definitely look at it as a grieving. I had lots of well meaning people say to me--well, look, there are so many great gluten free products out there now! And that was true. It's so much better now than it was 15 years ago.  But it is still a major life change for him and for you.  I had to rework all our food. I had to buy new pans, etc. I had to start being hyper vigilant about everything that someone else gave him to eat.  Holidays are harder now.  All I can say is--you WILL get through this. Let the tears come. Grieve it. It is a real loss. It's hard for me to think of all the times my son will have to ask about how something is prepared or say no to going to a certain restaurant because of the food issues. Over the years we have all accepted our new normal and we have flexed and adjusted. I am grateful for how resilient my son has been, and how excited he is about what he can eat.  You will get there too. There are plenty of great ladies on here with suggestions for gluten-free stuff. I could send you some ideas as well. Let us know how we can come alongside you in this. 

To comment on the "mild" case thing--the damage builds up over time. My son had completely blunted villi in some portions of his intestines.  He was having "classic" Celiac symptoms--upset stomach, constipation, sluggish growth, loss of weight. He had been growing slowly for years and they had not made the connection until finally the classic symptoms showed up. Every kid is different. My friend's son had no symptoms but lack of growth. He was diagnosed at age four.  He still has no symptoms when he gets glutened. It's kind of scary actually--she is never sure how safe food actually is because his body doesn't respond (except for the growth bit). That might change as he gets older--he's 13 now though.
 

ETA: doesn't this mean it's Celiac? I am confused on the comments about a negative biopsy? "There is mild villous blunting. "

Is there any possibility that there is more than just Celiac going on?

BTW, we were all tested and none of my family is positive.  We still have no idea where it came from, although there are autoimmunes on both sides of the family and both my husband and I have autoimmunes. I was told that the tendency to autoimmune runs in a family but not necessarily the specific autoimmune, although I think Celiac does tend to recur in families.  I am sure we will figure out where it came from eventually. I have a friend who wasn't symptomatic until after her first child was born when she was in her mid 20's. 

 

Edited January 30, 2019 by cintinative

[cintinative]

1 hour ago, Ktgrok said:

 

Y'all...I have a grain mill. We are SO gluten FULL in this kitchen. 

Time for a deep clean I guess. But not today. Today I am not up for it. 

 

i was the same way. Baked fresh bread every week. Vital wheat gluten and whole wheat flour in the cupboard. 

It will get better. It will be new, and some days it will be daunting, but it will get better. 

[ktgrok]

1 hour ago, Jean in Newcastle said:

What was his ttg again?  My dd was diagnosed with celiac with a ttg of just 10.  But her ttg continued to elevate in the months afterwards.  We weren't cheating.  It's just that these tests don't always show the picture for "right now" but the body continues to react. 

His villi are blunted.  I would say that is a positive marker for Celiac. 

TTG was 6, with normal <4. But that plus the villus blunting...yeah, celiac. 

 

[cintinative]

I do have the ATK cookbooks. I have not tried much in them. I had already started using a flour blend and I wasn't much up for trying a whole new one. I have tried a few recipes and need to try more because a few have not worked out well for me (which is weird for ATK). 

I really like the Art of Gluten Free Baking's recipes. I use her blend, and I buy flours from Amazon and the local asian market. I can get rice flours, tapioca starch, and often millet flour there. They do have a decent flour blend at Costco (Namaste, last I checked). Many of my Celiac friends use that. It's easier than storing seven flours. 😃  

Please do start a thread or search on here for gluten-free food recommendations. I definitely have some 'to avoid" items. 

If you do get a positive diagnosis from your endoscopy, you can get a care package from the University of Chicago Celiac Disease Center here:  https://www.cureceliacdisease.org/educational_essentials_kit/  It's really great. 

[ktgrok]

We have a ton of gluten free stuff in the stores here, so that will help. 

I love the idea of a list on my phone!

I may start a list of gluten free specific items - right now he lives on Cliff bars, cheerios (yay those are already gluten free), pizza, baked beans (already gluten free), and pancakes and sausages. He prefers specific brands and they are not gluten free, so that may be the priority in researching this. We tried Jones sausages and he didn't like them 😞 He likes the banquet brand and they are made in a facility that processes lots of gluten and they do not claim to be gluten free. 

[ktgrok]

Just made lab appointments for both DDs for friday. Sigh. 

[Faith-manor]

Yes, children often have a kind of evolutionary adaptation thing that goes on where they develop a natural aversion to things that are fraught with health issue for them, but that they can't name or put an adjective to it.

For the first few weeks, I'd be inclined to feed him a lot of what he likes that is GF so if it means cold veggies and chicken breast over and over again, I wouldn't worry about it. There are definitely worse diets in the world. I'd keep his favorite cold, healthy things around and encourage him to eat liberally. Over time you can encourage trying a new thing here or there. Often when a child has developed a digestive track issue, they are pretty internally traumatized and can't mind over matter their way to new foods. Lots of instinctive fear that they can't necessarily express in words.

I've got one that doesn't have food allergies or celiac, but who cannot stand cooked veggies, and really only likes turkey, chicken, fish, and eggs, mozzarella cheese. I go along with it and keep plenty of it around. So while sometimes I think "That boy needs to eat more variety" the reality is him chowing down for the third time on chicken breast, cucumbers, and bananas or salmon, carrots, and apples, really isn't going to hurt him. It might be limited, but it is in fact pretty healthy.

[moonflower]

This isn't quite the same thing, but about 7 years ago we significantly changed our diet, eliminating eggs and dairy and things with animal products (so like, gummy bears which have gelatin, bread with whey, etc.).

At first it was a massive pain and grocery shopping took forever and I had to cook everything from scratch.  I need a lot of new recipes or ways of adapting old ones, and it takes me a while to really understand and regularly use a new recipe, so that was a lot of effort.  And reading the back label of every single thing I bought other than produce - bah, not fun.

But after a few months, it was not any harder at all.  You just get used to the new list of things you buy; instead of buying X brand bread every week, you buy Y brand; instead of making Z recipe with A, B, C ingredients you learn to pick up D, E, F ingredients every time.  It really does get to be habit.

There will be an adjustment period for him but kids have such short memories and are generally pretty adaptable, he'll be fine in a few months too.  chick fil a is our go-to too! as their fries are not fried with the animal products but in their own fryer.

Also there are some great GF products on the market these days.  I buy some of them because they're also often dairy/egg-free;  those soft cookies from I think GoLife? (looked it up, EnjoyLife, these: https://enjoylifefoods.com/our-foods/soft-baked-cookies/) are soooo tasty.

[Familia]

I just wanted to express my concern and assure you of prayers.  So sorry you all are going through this — you are a loving mama, an intelligent woman, and a good steward of your gifts — everything is going to be ok.

[ktgrok]

30 minutes ago, Faith-manor said:

Yes, children often have a kind of evolutionary adaptation thing that goes on where they develop a natural aversion to things that are fraught with health issue for them, but that they can't name or put an adjective to it.

For the first few weeks, I'd be inclined to feed him a lot of what he likes that is GF so if it means cold veggies and chicken breast over and over again, I wouldn't worry about it. There are definitely worse diets in the world. I'd keep his favorite cold, healthy things around and encourage him to eat liberally. Over time you can encourage trying a new thing here or there. Often when a child has developed a digestive track issue, they are pretty internally traumatized and can't mind over matter their way to new foods. Lots of instinctive fear that they can't necessarily express in words.

I've got one that doesn't have food allergies or celiac, but who cannot stand cooked veggies, and really only likes turkey, chicken, fish, and eggs, mozzarella cheese. I go along with it and keep plenty of it around. So while sometimes I think "That boy needs to eat more variety" the reality is him chowing down for the third time on chicken breast, cucumbers, and bananas or salmon, carrots, and apples, really isn't going to hurt him. It might be limited, but it is in fact pretty healthy.

I'd do a happy dance if he'd eat chicken and veggies! he's stopped eating  all meat except fast food chicken nuggets and frozen breakfast sausages. Neither of which he can have now. He will eat raw carrots, apples, and well...yeah. That's it. He was eating more fruit than that but lately is also turning down stuff he used to love like strawberries, blueberries, etc 😞  Oh, wait - he will still eat blueberries if they are frozen! I am hoping that when his tummy feels better (not that he has EVER complained about pain) that he will start eating more. Again, it is a matter of is it the celiac, or is it something else (pandas, pans, etc). Sigh. I'm hoping it is just the celiac. 

11 minutes ago, Familia said:

I just wanted to express my concern and assure you of prayers.  So sorry you all are going through this — you are a loving mama, an intelligent woman, and a good steward of your gifts — everything is going to be ok.

That may be the nicest thing anyone has said to me in a long time. Thank you for saying the perfect thing. It's just as helpful as the more practical suggestions. Bless you. 

[Jean in Newcastle]

Your child is much younger than mine, but when she was first diagnosed I made her a promise to keep looking for items that she liked.  We made it a game with taste tests of bread, muffins, etc.  We found brands that we like.  Different people like different brands but here are our favorites.

Mission GF tortillas.

B Free White sandwich bread.

Udi's blueberry muffins

Freschetta gf pizza

Applegate and Aidell brand sausages

Trader Joe's or Annie's gf mac and cheese.

BTW - some people with Celiac don't do well with Cheerios.  I can't eat any oats that are not certified gluten free oats without getting sick.  Oats are technically gluten free but there is a high amount of cross contamination possible. 

[BarbecueMom]

54 minutes ago, Ktgrok said:

We have a ton of gluten free stuff in the stores here, so that will help. 

I love the idea of a list on my phone!

I may start a list of gluten free specific items - right now he lives on Cliff bars, cheerios (yay those are already gluten free), pizza, baked beans (already gluten free), and pancakes and sausages. He prefers specific brands and they are not gluten free, so that may be the priority in researching this. We tried Jones sausages and he didn't like them 😞 He likes the banquet brand and they are made in a facility that processes lots of gluten and they do not claim to be gluten free. 

For pancakes, the King Arthur brand Gluten Free Pancake Mix makes the best pancakes I've ever had - gluten or not.  I do usually add a bit of maple syrup and vanilla extract to the batter out of personal preference, but it's fine without.  As long as you really do let the batter rest for 10 minutes before griddling, they turn out perfect (sometimes DH jumps the gun and they end up kinda flat).  Lately I've just been making pancakes with the Measure for Measure flour because I'm trying to not pay $4.50/box for pancakes... not as good, but they get the job done.  GF pancakes are heavier than regular ones, so if he normally eats three at a time, one or two may be enough to fill him up.  I made these for my niece and nephews last year, who tried to eat the same amount they normally do, and they didn't feel well afterward.  Oops.

Do you have a Costco?  They have GF frozen pizzas and GF chicken nuggets (I buy these for my not-GF kid because they are "plain and unseasoned" and he doesn't like seasoning... as he drowns them in ketchup).  We buy a lot from Aldi too.  Their store brand rice krispies are GF, to make treats or chewy granola bars.

We don't go out to eat at all anymore (DH can eat Five Guys on work trips, but other than that he usually reacts), and other than having to buy specific, safe brands, I often forget that I cook entirely gluten free.  I know a lot of people recommend not eating any processed/imitation GF items at first, but I think it's really helpful to figure out quick, edible snacks (instead of Goldfish crackers) you can keep in the car when you're out past lunch, or what to throw in the freezer for an emergency dinner now that Domino's is a no-go.

[chiguirre]

We aren't GF but we love Namaste Pancake and Waffle Mix. Dh picked it up without realizing it was GF and it was a big hit.

[ktgrok]

Thank you guys! And I didn't even THINK of checking Aldi! We have one right around the corner, brand new! 

And we do have a Costco but I'm not sure we kept our membership up this last time, I'll ask DH. We do have a Trader Joes a bit farther away, and a Whole Foods. 

I may pick up those Aldi gluten free rice krispies ASAP, and some Freschetta gluten free pizza, etc. And that pancake mix. I don't care if it costs an arm and a leg, if he'll eat it. Like I said, he LIVES on those few things. 

[itsheresomewhere]

Annie’s gluten free Mac n cheese is good.  

[BarbecueMom]

12 minutes ago, Ktgrok said:

Thank you guys! And I didn't even THINK of checking Aldi! We have one right around the corner, brand new! 

And we do have a Costco but I'm not sure we kept our membership up this last time, I'll ask DH. We do have a Trader Joes a bit farther away, and a Whole Foods. 

I may pick up those Aldi gluten free rice krispies ASAP, and some Freschetta gluten free pizza, etc. And that pancake mix. I don't care if it costs an arm and a leg, if he'll eat it. Like I said, he LIVES on those few things. 

Sidetrack, is there an Aldi anywhere near Universal Studios?  We'll be there in May and need to buy some groceries once we get there.  Last time we were in Florida we were in Panama City Beach, and there wasn't an Aldi anywhere for miles and miles and miles.  I about fell over at the grocery prices.

[ktgrok]

2 minutes ago, BarbecueMom said:

Sidetrack, is there an Aldi anywhere near Universal Studios?  We'll be there in May and need to buy some groceries once we get there.  Last time we were in Florida we were in Panama City Beach, and there wasn't an Aldi anywhere for miles and miles and miles.  I about fell over at the grocery prices.

Aldi is pretty new to Florida, only the last couple of years. They expanded recently, but I don't know if there is one near Universal. Probably? Otherwise, Target is actually fairly inexpensive for groceries, or Walmart. Publix is the most expensive, but the best customer service and most pleasant shopping experience. And the best subs 🙂

[LifeLovePassion]

Snyder's GF pretzels are the best.

One of my favorite breads is in the yellow bag Schrar

I make GF bread in my bread machine now using Pamela's flour I buy on Amazon. 25lb bag for around$53.

We eat rice in place of bread a lot of times (burgers and hotdogs, etc)

I'd love to hear other people's favorite recipes too

[cintinative]

Some of our regular (prepared food) purchases:

GF Bread from Aldi (I used to make my own, but now buy this. I make my own bread crumbs though).

Annie's Box Rice Pasta and Cheddar (we have bought the cups for campouts and retreats and they aren't as good)

Sabatasso's GF Pizza from Costco (best we have tried---we *hated* Amy's)

GF chicken nuggets from Costco

Italian sausage from Costco

Skinny Pop/Kirkland Tortilla Chips/Annie's Smiles from Costco

Glutino Fake oreos for making oreo pie crust

King Arthur Flour GF Chocolate Cake Mix--IMO the best one out there

Barilla GF pasta. The only one I haven't tried is the lasagna

Tinkyada Brown Rice Lasagna Noodles

Aldi's Rice Cereal (it is GF)

You will probably need a new griddle unless you can get your griddle/pan very clean. 

We like to make Alton Brown's Pancake recipe using GF flour. I use about half as much flour as it calls for and make sure you let it rest as suggested by a prior poster.  It's not super easy to have buttermilk on hand--I have contemplated trying it with dry buttermilk powder to make in advance to see if it works as well.  

I have a good GF waffle recipe too but you would need a new waffle iron.  

I used to regularly buy from Trader Joe's but I started buying pasta from Amazon (the Barilla) for convenience since TJ's is about 20 minutes away or more with traffic.  

I have yet to find a GF bun here that we like. To me, the UDI's are too big, but those are usually the only option in stores here, and the recipes I have found say the buns only last three months in the freezer. That's just not long enough since we don't use buns that much. 

I don't cook all GF. For dinner usually the main thing is GF but I might have regular and GF pasta with it.  So we do have wheat in the house--I know people who do full gluten free for everyone--my husband would not tolerate that.  😃

[cintinative]

I have found that pretty much all the soups I made pre-diagnosis still work. You have to watch the broths. Usually chicken stock/broth is fine. Sometimes beef broth has barley (malt extract, barley malt extract, malt flavoring, etc.).  The big difference is I no longer cook the pasta in the soup. I cook it separate and pour the soup over in the bowl.  The reason for this is that the GF pasta absorbs A LOT of water.  So if you don't do this, and you let it sit for awhile, you will have a mass of noodles in your pot with no broth. This also allows me to double it and freeze a batch (without pasta) for later. GF pasta does not freeze well at all in my experience.

ETA: if it is a cream based soup requiring a roux, generally my AP GF flour still works.

 

Edited January 30, 2019 by cintinative

[Faith-manor]

I just wanted to throw out many, many hugs. You are doing great there mama, and there is good chance that as his gut heals, his appetite will improve which will make it easier to get him to eat other things. For now, a multi vitamin with minerals, and lots of those frozen blueberries, plus the carrots, apples, and GF sausage links will get him by.

[prairiewindmomma]

Do your kids like challenges like they show on YouTube? We do a taste test challenge where we test and rate 3-4 of the same type of things. We found that really helpful when we were learning to like GF things. 

I realize he’s not necessarily ready for that idea now—but I thought I’d throw that out if it’s something that might work later.

We usually do our “challenges” on Sunday afternoons. It’s become a fun tradition.

[Kanin]

My mom makes excellent GF waffles in her waffle iron. If you use a gluten free mix, it's just as easy as making wheat-based waffles. You can make a big batch and keep them in the fridge, too, for an easy snack. You'd have to buy a brand-new waffle iron, though.

[LifeLovePassion]

Aldi GF Mac and cheese like the Velveeta shells and cheese is good

Veggie straws, potato chips and corn based chips are often GF.

We get donuts in the freezer section, I can't remember the brand though, they are yummy microwaved for about 30 seconds. 

Udi muffins are a yummy treat

As a buttermilk replacement I just sour some milk with apple cider vinegar and let it sit for about 5 minutes before using. 

We like the Almond crackers and 6 grain crackers, both from Costco. 

Popcorn is a frequent snack, I pop my own on the stove most of the time. 

 

Did he rock his blue hair?

 

[ktgrok]

4 hours ago, prairiewindmomma said:

Do your kids like challenges like they show on YouTube? We do a taste test challenge where we test and rate 3-4 of the same type of things. We found that really helpful when we were learning to like GF things. 

I realize he’s not necessarily ready for that idea now—but I thought I’d throw that out if it’s something that might work later.

We usually do our “challenges” on Sunday afternoons. It’s become a fun tradition.

OH MY GOODNESSS!!!!! He and his sister have been talking about wanting to start making videos for youtube - this would be PERFECT for that!!!! And would get him more into it! AND...DH just ordered a green screen, lighting, etc for making videos for something for himself, so we have the whole set up. I'm totally going to suggest he start a channel with videos of him and her trying out various gluten free foods! 

4 hours ago, LifeLovePassion said:

 

 

Did he rock his blue hair?

 

He did, and several people commented on it :)It  doesn't really show up in this photo, but it was there 🙂

[Monica_in_Switzerland]

Oh, seeing your little guy in the hospital bed brings back memories... kids and medical stuff... so hard!!!

 

Hang in there!

[LifeLovePassion]

Love the hair! Tell him way to be brave and amazing!