Just Diagnosed

[massagemamaof3]

My 11 year old daughter had her endoscopy today. When the Dr. came to talk to me, even without the biopsy results, could tell she has Celiac Disease.  I've been doing research and preparing myself since the blood work came back in October. Now that its "real" I'm so overwhelmed I don't even know where to start! I want the whole family to be gluten free or mostly gluten free (vodka and beer) I just can't wrap my mind around it. Shes never really had any symptoms, it was her small stature, she's 4'3" and 60 pounds, that prompted the trip to the endocrinologist that prompted the trip to the gi Dr. (its a little like the house that Jack built lol). Any suggestions would be great. Thanks!

[1desperateladysaved]

You seem rather overwhelmed just now.  That is how just about everyone here starts out.  I wanted to crawl under my bed myself, but I have a mattress on the floor and didn't get too far!  Make sure to read the Newbie thread and work on your kitchen.  You are doing well so far!  You got her diagnosed, while displaying so few symptoms, and at a young age!  You may find, as you go gluten free, that she did have some symptoms as they go away and return with any mistakes.  If she has major villi damage, I would especially like to suggest vitamin supplements and digestive enzymes.  I used digestive enzymes on my boy, at the suggestion of an osteopathic doctor, and he started growing after apparently being stunted by villi damage.  The digestive enzymes also were recommended to me by my chiropractor and an MD.  They help break down the food while the villi are healing as I was told by my Functional Medicine nurse.

 

You can also start her on a multi-vitamin and vitamin B even before testing is done.  (If testing isn't done)

 

Any questions?  Keep asking.

 

D

[GF Lover]

Hi Mamaof3 and Welcome to the Forum.

 

Yes, it can be very overwhelming at first.  Start by reading the Newbie101 thread under the Coping Section.  Things will get easier as time passes, I promise.  Ask any questions you need to, we will help in any way we can.

 

Hang in there,

 

Colleen

[StephanieL]

Her being gluten-free is important!  What I did (since my DS was asymptomatic) was gave myself 4-6 weeks to get everything with gluten out of his diet.  I started with a list of most often consumed processed foods and worked from there. Things like fruit and veggies and stuff aren't *usually* going to be an issue so those were "freebies" so to speak.  So I knew pancakes were a top priority in our house. Found a brand that would work (we have allergies to deal with too so it took lots of calls and stuff). Then I moved onto the next things.  I think I got to totally gluten-free within 3 weeks actually.  This gave me a focused path to follow to get to the end result in a relatively short period of time without loosing my mind!  HTH  and hugs to you both!!

[africanqueen99]

Welcome - sorry you're here with us.

 

I'm not sure the ages of your other kids, but I was really concerned about my older kids really resenting my youngest (the first to be DX) for taking away the "good food."  Then my oldest got DX too...and the middle kid just realized that this was his life too and it wasn't worth crying over cheeze-its!

 

We had a good Gluten Party and ate our freezer one night with friends.  It was awesome.  And helped my kids see that we were moving forward.

 

For me, I needed to do it in stages.  I cleared out the pantry/fridge/freezer of all the unopened things that we wouldn't eat - food pantry.  Then we finished up the open stuff.  While we were eating the gluten junk I took inventory of everything I would need to restock the kitchen - serving spoons, cookware, toaster, etc.  I started slowly buying that stuff and leaving it in the dining room - unopened.  Once we finished the gluten and had our "go to" date I jumped in and SCRUBBED the kitchen/fridge/pantry/etc.  Then, once gluten crumbs were gone, I opened the new stuff and we were on.  My kitchen is 100% gluten-free.

 

Then I moved into the bathroom and cleaned out the meds, lotions, potions, etc.

 

Now, I'm on to the kids' schools.  I have a meeting with the oldest's elementary tomorrow (already met with the early childhood center for the youngest).

 

Slowly but surely.  You will get there - I promise.  Take it slow and ask a lot of questions.  We are all here to help.

[massagemamaof3]

Thanks for the helpful advice. My other 2 kids oldest son is 16 and youngest son is 10 are having different reactions to going gluten free. my oldest wants nothing to do with it and doesn't want to be tested, he's their half brother. The youngest is coming to terms with it since he is whole. I've decided to let the boys eat through whats left of gluten in the house but I will not be bringing in any more items.  Do stainless steel pots and pans need to be replaced? That will make me sad since they are only about 2 years old I'm going to be taking baby steps towards having a completely gluten free kitchen. 

[kareng]

Thanks for the helpful advice. My other 2 kids oldest son is 16 and youngest son is 10 are having different reactions to going gluten free. my oldest wants nothing to do with it and doesn't want to be tested, he's their half brother. The youngest is coming to terms with it since he is whole. I've decided to let the boys eat through whats left of gluten in the house but I will not be bringing in any more items.  Do stainless steel pots and pans need to be replaced? That will make me sad since they are only about 2 years old I'm going to be taking baby steps towards having a completely gluten free kitchen.

I think you should be able to scrub those pots and pans well and keep using them.

[blmoreschi]

My daughter was diagnosed at age 11 last April. I think it is kind of a hard age, because they know what they're missing (as opposed to being a toddler or baby). And it's also an increasingly social age, so that is a challenge, too.

 

I found the clear it all out at once and go gluten-free right away approach to work best for us. We kept some gluteny cereal for my older daughter (and still keep some), and I keep some gluteny rolls in the freezer that I use to make her lunches, but other than that we are 100% gluten-free. And you should see the precautions I take when I take one of those rolls out to thaw and make a sandwich!

 

My non-gluten-free daughter will be 14 in a few weeks, and she has actually surprised me how well she has adapted to our gluten-free life. I do periodically take her for treats (favorite sandwich place, etc) when her sister is otherwise occupied. But I think mainly I dove right into baking and we have had lots of yummy gluten-free treats (and probably why my husband and I have gained weight!). She saw that she wasn't going to be deprived. She did have one huge meltdown about it about 5 months in, but I think that was just general 13 year old girl stuff and the diet (and the special attention paid to her sister) just got the focus.

 

My Celiac daughter also didn't have any GI symptoms, although since going gluten-free we realize that she used to poop more frequently (2 times per day) and it was soft. She was also small, but not as small as your daughter. I think she was about 72 pounds and 4' 6" when she was diagnosed a month after her 11th birthday. Her big symptom is osteoporosis. Has your daughter had any fractures? You may want to ask the endocrinologist about getting a DEXA bone density scan done. My daughter had fractured her arms 6 times starting at age 3 and has a 2-1/2 year bone age delay - which also means a puberty delay. I wouldn't be surprised if your daughter has a bone age delay also. But I think you'll notice that she'll start growing and gaining weight soon after going gluten-free. At the six month mark, my daughter had grown 1-1/2 inches and gained 7 pounds! We were thrilled by that.

 

I know it is completely overwhelming, and for me it was all consuming, too. Now, at less than 8 months in, I feel like pretty much of a pro at this (until the next time I mess up) and I don't think my daughter has gotten glutened at all. Knock on wood, cross fingers and toes, etc. Her blood tests numbers were very low at the 6 month mark, so I'll pat myself on the back and say we're doing a good job. One book I really recommend is Real Life with Celiac Disease, and also Celiac Disease: The First Year by Jules Shepherd. And, as my husband is always reminding me, our GI doc always says "don't let the perfect get in the way of the good."  Good luck!

[worriedseattlemom]

I don't have a whole lot of advice since we are new to this as well, but I just wanted to say hi! I'm not going with a full gluten-free kitchen at this time because my son is allergic to dairy, eggs, peanuts, and tree nuts, and wheat is something he can reliably have. I just can't pull that from him now. That said, I've been really careful about x-contamination as I've dealt with it for a decade with my son, but my daughter is a month into her gluten-free diet and is still queasy off and on. Her pain seems to be gone, but she does have the nausea. I'm not sure if that's her gut still healing or because there's still some gluten getting in somehow.

 

Sorry you're having to deal with this as well. It's a huge adjustment and is hard when they're a little older and used to eating what they want.

[massagemamaof3]

My daughter was diagnosed at age 11 last April. I think it is kind of a hard age, because they know what they're missing (as opposed to being a toddler or baby). And it's also an increasingly social age, so that is a challenge, too.

 

I found the clear it all out at once and go gluten-free right away approach to work best for us. We kept some gluteny cereal for my older daughter (and still keep some), and I keep some gluteny rolls in the freezer that I use to make her lunches, but other than that we are 100% gluten-free. And you should see the precautions I take when I take one of those rolls out to thaw and make a sandwich!

 

My non-gluten-free daughter will be 14 in a few weeks, and she has actually surprised me how well she has adapted to our gluten-free life. I do periodically take her for treats (favorite sandwich place, etc) when her sister is otherwise occupied. But I think mainly I dove right into baking and we have had lots of yummy gluten-free treats (and probably why my husband and I have gained weight!). She saw that she wasn't going to be deprived. She did have one huge meltdown about it about 5 months in, but I think that was just general 13 year old girl stuff and the diet (and the special attention paid to her sister) just got the focus.

 

My Celiac daughter also didn't have any GI symptoms, although since going gluten-free we realize that she used to poop more frequently (2 times per day) and it was soft. She was also small, but not as small as your daughter. I think she was about 72 pounds and 4' 6" when she was diagnosed a month after her 11th birthday. Her big symptom is osteoporosis. Has your daughter had any fractures? You may want to ask the endocrinologist about getting a DEXA bone density scan done. My daughter had fractured her arms 6 times starting at age 3 and has a 2-1/2 year bone age delay - which also means a puberty delay. I wouldn't be surprised if your daughter has a bone age delay also. But I think you'll notice that she'll start growing and gaining weight soon after going gluten-free. At the six month mark, my daughter had grown 1-1/2 inches and gained 7 pounds! We were thrilled by that.

 

I know it is completely overwhelming, and for me it was all consuming, too. Now, at less than 8 months in, I feel like pretty much of a pro at this (until the next time I mess up) and I don't think my daughter has gotten glutened at all. Knock on wood, cross fingers and toes, etc. Her blood tests numbers were very low at the 6 month mark, so I'll pat myself on the back and say we're doing a good job. One book I really recommend is Real Life with Celiac Disease, and also Celiac Disease: The First Year by Jules Shepherd. And, as my husband is always reminding me, our GI doc always says "don't let the perfect get in the way of the good."  Good luck!

She does have about a 2 1/2 year delay in her bone growth and yes that has delayed her puberty also (not really sorry about that) one teenager is enough...I know she is looking forward to growing, all her friends have boobs and she doesn't :/ She has a long way to catch up but with the bone growth delay she has the ability to catch up according to her dr.  11 yo is gluten free as of Wednesday, a few minor setbacks, like chili powder that has wheat in it, mostly doing well with it. I've set a date of January 2 for being completely gluten free, I've started making gluten free dinners for everyone. She is really missing things like Christmas cookies and treats at school.  I think I'm starting to get a handle on the steps that I need to take. (fingers crossed) Tomorrow is the walk-thru of the local grocery store with their dietitian, and as of this morning we have an official Celiac diagnosis so we are waiting on referrals for the local hospitals dietitian and referrals for blood works on the other 2 kids. My youngest I'm pretty sure has Celiac because he has a mouth full of cavities every 6 months he goes to the dentist.  I really appreciate everyone's help and advice. It makes it so much easier to have people around that know what is going on. 

[massagemamaof3]

I don't have a whole lot of advice since we are new to this as well, but I just wanted to say hi! I'm not going with a full gluten-free kitchen at this time because my son is allergic to dairy, eggs, peanuts, and tree nuts, and wheat is something he can reliably have. I just can't pull that from him now. That said, I've been really careful about x-contamination as I've dealt with it for a decade with my son, but my daughter is a month into her gluten-free diet and is still queasy off and on. Her pain seems to be gone, but she does have the nausea. I'm not sure if that's her gut still healing or because there's still some gluten getting in somehow.

 

Sorry you're having to deal with this as well. It's a huge adjustment and is hard when they're a little older and used to eating what they want.

It really is hard when they are use to eating whatever they want and then you have to take away the majority of their fav foods. I can't even imagine having all the allergies to deal with! I have a client whos son is diabetic and she feels bad for me because we can't fix it with medicine and have to change our whole lifestyle to make her better.  Having everyone here makes me feel like its all achievable! 

[cyclinglady]

Ah, special treats are needed for home and school.  I use Pamela's gluten-free All purpose Flour for my muffin, cupcake, brownie and cookie recipes.  I just converted directly from my old gluten recipes.  In fact, my daughter (age 12) and I just consumed a chocolate mayonnaise cupcake before bedtime!  Yum!  

 

My daughter is a gluten eater, yet she requests all my homemade gluten baked goods!  They are that good!  I freeze almost everything to keep it fresh.   Anyway, I allow very little gluten in my house (I was diagnosed this year and my husband has been gluten free for 12 years).  I do purchase pre-packaged gluten foods for my daughter's lunches (e.g. Goldfish, cookies, PB & J sandwiches).   I  make her buttered gluten noodles, but have a separate pot, colander, and spoon.  I do the cooking and washing to insure that the gluten is contained.  If she wants more, we'll stop for a burger on the way home from school.  

 

I'm sure your daughter will be feeling better soon (and growing)!  

 

This forum is a wealth of information and has some pretty neat people who have plenty of excellent advice.

 

Good luck (and take care of yourself too!)

[massagemamaof3]

Ah, special treats are needed for home and school.  I use Pamela's gluten-free All purpose Flour for my muffin, cupcake, brownie and cookie recipes.  I just converted directly from my old gluten recipes.  In fact, my daughter (age 12) and I just consumed a chocolate mayonnaise cupcake before bedtime!  Yum!  

 

My daughter is a gluten eater, yet she requests all my homemade gluten baked goods!  They are that good!  I freeze almost everything to keep it fresh.   Anyway, I allow very little gluten in my house (I was diagnosed this year and my husband has been gluten free for 12 years).  I do purchase pre-packaged gluten foods for my daughter's lunches (e.g. Goldfish, cookies, PB & J sandwiches).   I  make her buttered gluten noodles, but have a separate pot, colander, and spoon.  I do the cooking and washing to insure that the gluten is contained.  If she wants more, we'll stop for a burger on the way home from school.  

 

I'm sure your daughter will be feeling better soon (and growing)!  

 

This forum is a wealth of information and has some pretty neat people who have plenty of excellent advice.

 

Good luck (and take care of yourself too!)

Those cupcakes sound amazing! 

[lisalamitie]

Take it from the beginning. I took a huge list of ingrediants that had gluten in them food shopping with me - alone. I checked all the food my daughter liked and ate and determined what she could keep eating and what had to be substituted. I spent a lot those first months trying all sorts of different brands to understand what she liked and what she didn't. Buy her her own toaster and her own condiments (butter, PB, mayo, nutella, etc) and I label them gluten-free so no one else uses them. I bought cooking mats to prepare her food on. I did not take my family gluten free - shes the only one. I didn't because even if you don't have celiacs and go gluten free - eating gluten will make you ill. So why do that to the other members? they cant enjoy pizza at a friends birthday party bc their sibling is gluten-free? Some things we all eat gluten-free like the pasta (now Barilla makes one that is fabulous and cheaper and I found it at BJs club) We also all use rice crumbs to bread our chicken and make meatballs with (we like Schars) we all east gluten-free pancakes bc they are good! we use pamelas baking mix. BUT, we eat regular bread and bagels and pizza. You will find your groove. Take a deep breath and make lists and read read read....Ask questions on companies websites, make phone calls, ask for coupons. You will find it will all come into place. Eating out is still hard, but its getting better as awareness grows. And try making your own things....cookies, granola bars, corn muffins etc. good luck! 

[massagemamaof3]

I went on my first gluten free shopping trip today. The local chain of grocery stores has dietitians at every store. She walked through the store with me and showed me where all the gluten free things were and what ones she liked best. The deli will shave the meat first thing in the morning while the machine is still clean, they had a binder with all of the store brand products that are guaranteed gluten free. It took me a lot longer then usual but i was pleased that there were a lot of store brand things to substitute into the regular recipes that I have. 

[blmoreschi]

Wow, our 11 year old daughters sound very similar with their bone age delay! I definitely would encourage you to ask for a DEXA scan to check her bone density. We have been convinced by multiple doctors that it is very important to address her low bone density before she starts that big pre-pubertal growth spurt. I am also not at all upset by the delay in puberty (I have a 14-next-week daughter, too), and actually my daughter isn't either. She sees what her sister has dealt with and isn't in any hurry, plus she's a ballerina so likes being small and thin. Her doctors also say that she should be able to make up the delay in growth, and if she does what they predict, she has about 12 or 13 inches to grow in the next few years. Her bone density is extremely low, so we really worry about her spine as she grows that fast.

 

Where do you live? We're in the Shenandoah Valley of Virginia. I know my daughter would love to have a gluten-free friend with similar issues!

[massagemamaof3]

Wow, our 11 year old daughters sound very similar with their bone age delay! I definitely would encourage you to ask for a DEXA scan to check her bone density. We have been convinced by multiple doctors that it is very important to address her low bone density before she starts that big pre-pubertal growth spurt. I am also not at all upset by the delay in puberty (I have a 14-next-week daughter, too), and actually my daughter isn't either. She sees what her sister has dealt with and isn't in any hurry, plus she's a ballerina so likes being small and thin. Her doctors also say that she should be able to make up the delay in growth, and if she does what they predict, she has about 12 or 13 inches to grow in the next few years. Her bone density is extremely low, so we really worry about her spine as she grows that fast.

 

Where do you live? We're in the Shenandoah Valley of Virginia. I know my daughter would love to have a gluten-free friend with similar issues!

We live in Illinois but my daughter would also love to talk to someone about being gluten free and the issues she may run into.Maybe they can connect through email or instagram, I dont really know what that is but she has one. Our next appt with the gi dr is in april and i will definitely ask about the bone density scan. She has never had any issues with broken bones or anything. I have a 16 yo son and his puberty made me question why I thought more then one kid was a good idea