I lucked out, this morning, and Monkey did NOT remember to ask me again. But as the comments rolled in on that post I found myself wanting to explain a few things to everyone, like that I know “the talk” is a whole bunch of talks, and that we’ve already discussed a lot of this stuff. Nor am I particularly squeamish. It’s just that Monkey is only 6, and a very YOUNG 6.
In fact, he’s the kind of 6 who sits in the Tae Kwon Studio with me while Chickadee’s in class and—apropos of nothing—announces, “Mama, I don’t remember being in your belly. OR coming out of your vagina!”
So perhaps that clarifies why I am not eager to get right into the actual mechanics of the, uh, buddying.
Anyway.
Last week, Monkey had some blood tests. We were hoping to rule out a few medical things before concluding that he’s just a tiny psychopath. Hahaha! Kidding! He’s really more of a sociopath.
His thyroid is perfectly normal, which I’m sure would come as no surprise to his former pediatrician, but I still pink puffy heart the new doctor for humoring me and checking.
But I guess there are a few different blood tests you can run to look for celiac disease, and I don’t know which ones the doctor ran, but the secretary on the phone told me that the results were inconclusive. None of my specialized stealth ninja mama techniques were able to get anything more specific out of her; but she did manage to get Children’s Hospital to call me back within the hour, so I’m pretty sure that Monkey’s dying. I’m hoping he can hang on long enough to see the specialist in a couple of weeks.
In the meantime, the secretary told me, the doctor suggets we “try” a gluten-free diet to see if his symptoms improve. Which makes me think that one of his antibody tests was positive. Not that I actually know. SECRETARY, I AM LOOKING AT YOU and your vague message-relaying ways.
And “trying” to go gluten-free with a child who is a carbohydrate addict is going to be an interesting proposition indeed. We sat down and had a discussion about it, and Monkey was strangely agreeable about the entire thing. The kid feels crappy, there’s no doubt about it. Any time you mention that something might make him feel better, he lights right up with the hope that it will really be true.
As we ran through the food possibilities, he shed tears only for the loss of his beloved pop-tarts. The crackers, bread, cookies, cake, and pasta are all expendable. But the toaster pastries… well, that was a loss it may take a while for him to come to grips with. And I don’t think my offer to make him meatloaf for breakfast was seen as much of a consolation.
The thing about celiac disease (aside from the whole no gluten ever again, LIFE WITHOUT TOLLHOUSE COOKIES thing) is that it can only be definitively diagnosed by intestinal biopsy.
Intestinal. Biopsy.
[“Oh, don’t worry,” the doctor had told me, after revealing she suspected celiac, “they give him great drugs and knock him out!”
“That’s wonderful,” I replied. “But what do they give to ME? I will also be requiring some of the great drugs or possibly being knocked out if you’re planning to remove some of my baby’s intestinal lining.”]
If we find he has significant improvement on the gluten-free diet, it’s possible that we can skip that step. If it’s unclear, well, then, he probably has to be sampled. (Much like a fine wine. Except not at all.)
Not that I have any say over how this all goes, but I have to admit that I’m torn. On the one hand, this could be, in one fell swoop, the answer to just about everything for him. If he has celiac, going gluten-free should solve his stomach problems, his emotional instability and his attentional issues. Not to mention that maybe he’d finally eat and GROW for a change.
On the other hand, celiac is a pretty sucky hand to be dealt. Monkey was SO EXCITED when he passed the peanut challenge and was declared allergy-free with no eating restrictions. And the rules he had to follow as a nut-allergic kid were NOTHING compared to what life will be like if he can’t have gluten. Gluten is in just about everything that tastes good.
So we’re back to wait-and-see, though it’s a different wait-and-see than before.
Only one thing is absolutely certain: We are going to need more ice cream.
On the one hand, it would be an answer, and every parent knows that an answer to what ails your kid is sometimes all you want or need. On the other hand, I hope it’s a different answer, like maybe, no more eating crayons or dirt.
I know it’ll all work out, because everything always does, but I hope it works out happily and well and easily, for both of you.
There’s actual WHEAT in POPTARTS?
Wow.
Who knew? I thought they were 100% food free.
Sorry to joke. I hope you find an answer soon, and I pray it’s not a sucky one.
Hopefully the new diet works and he won’t have to go under. Monkeys are wonderfully resiliant creatures.
Tell your little man that I’ll come up with a special gluten-free toaster pastry recipe just for him.
On the up side, you can stock up on things like this:
http://www.celiac.com/catalog/product_info.php?cPath=38&products_id=90
http://www.celiac.com/catalog/product_info.php?manufacturers_id=17&products_id=80
Because it never hurts to remind someone with food issues that they are “special”
while gluten free products will never be good, this website has the best ones around!
http://www.kinnikinnick.com/
i work with alot of autistic children who are on gluten free (not that i think it makes a difference for them) so i can give u tons of options if u want! feel free to email me!
I have a few friends who are ciliac, and although it sucks, they’ve managed to have fairly normal lives. I’m sure you’ll all come through it ok.
Good luck Monkey and Mommy
Mir, no need to do a biopsy – just try the GF diet and there’s your proof. Look out for things like sharing wooden spoons, cutting boards, knifes in the peanut butter jar – all sources of cross contamination. There are some good gluten free cookbooks and even some for kids. Also lots of good sites for gluten free goodies. While I agree with Stephanie’s recommendation of Kinnikinnock (their KinniToos are just like Oreos), I must disagree strenuously on the issue of whether or not gluten free/casein free diet works for people on the autism spectrum. I don’t want anyone reading her comment to discount it as an option. Good luck!
This is so silly. I told my two year old all about the whole ‘buddying’ thing in easy steps over her second year and it was a piece of cake. When she was three we saw a neighbor who was — Lo! Great with child!
My girl said “Lisa’s Mom is really fat.”
I was so smug. I said, “Yes, Lisa’s Mom is going to have a baby. Where do babies come from?” Preen, preen — inspect fingernails.
“You sit on the bench at Wonderworld.”
Our local ‘everything store’ did have a bench. It was next to the baby department. Yep, it’s all about the education thing.
Hugs to Monkey. (And don’t sit on the bench at Wonderworld!)
My condolences to Monkey on the loss of his beloved poptarts. I was asked to forego milk for a time to see if it helped my eczema (it did not, thank goodness) so I feel your pain and sympathize completely. I would send you a card, but I don’t think they make cards for poptarts!
I have celiac sprue and there are good pastas, edible bread, and even recipes for home made poptarts. so he doesn’t have to totally go cold turkey on the carbs. I agree that kinnickinick is the best for bread and the ‘oreo’ type cookies. Feel free to email me, I’d be more than happy to help where I can.
Me! I’m celiac also. I have lots and lots of recipes. Maybe even a poptartish one.
I would think that the docs would do the intestinal biopsy before Monkey tries the gf diet as they want to know what his present diet is doing before you make changes.
Holly, that’s true… if you’re off gluten for weeks or months before the biopsy, it will come back negative whether it should be or not. (At least I think that’s how it works.)
Sorry Mir… going gluten free is no fun. I’ve done it, and my 2-yr-old son is allergic to wheat (as well as a bunch of other stuff.) But the good news is there are TONS of substitutes out there.
I hope everything gets better for you all. And I’m with you, put my kid under and you’d better have an i.v. cocktail for me as well.
My son (age 6) is going to be put under tomorrow to be scoped. They are looking to see if he has celiac disease, crohn’s disease, or what is up. I know I mentioned that he has been vomiting and having bloody diarrhea for months, but I don’t expect you to remember. I am a nervous wreck about his surgery tomorrow because he also has asthma so putting him under (also? under what? why do they call it that?) is “more risky”…actual quote from the doctor. I’ll be happy to know what is wrong so we can help him, but am not excited about the actual procedure or any treatments we will need to do once we find out what is wrong. I feel for you! I think I know exactly how you feel and I am with you about more ice cream being needed.
Hope you have a Whole Foods store near you. They have great gluten-free foods there (tasted the cookies on sample day and Yum), but you’ll probably go broke buying the stuff. Hope you get an answer soon, (and a happier and healthier Monkey).
Hugs to Monkey and I hope you find managable answers very soon. :) Hang in there, Mum!
Also?
This: http://www.celiac.com/st_prod.html?p_prodid=955
You could TOTALLY do that.
NO POPTARTS???? Doesn’t that rule out 95% of his diet?
Thinking positive poptart thoughts for Monkey and you.
Poor Monkey – the image if him being miserable and lighting up when you suggest a possible remedy really got to me. My heart just breaks for him having to give up pop tarts – I always think of him when I see pop tarts (somehow, my two haven’t developed an appetitite for them).
I hope the wait-and-see part is short, and that you somehow get the answers you need. Sigh.
Noooooooooo. Poor Monkey.
I just hope you get some good answers, no matter what they might be.
That recipe that Karen linked to, calls for Garfava bean flour. The HELL? I bet there are gluten free poptarts at health food stores.
Good luck with everything. I agree, the biopsy would make me nervous too. Keep us posted so we can keep your spirits up!
I have a friend with that and it does seem really hard. The only good thing is that a lot of places are coming out with gluten free versions of good things. There is even gluten-free beer now! And it’s probably expensive enough that he won’t be partying hard in high school!
Thinking good thoughts for a true diagnosis and good healing for your little Monkey. I hope you find the answers you need and that Monkey starts getting some relief.
Mir –
I echo all the good, healing thoughts for you and Monkey through this! You are so resourceful. Hugs to all y’all. And also? I thought of you last night – when my 7 year old son Havoc ripped the towel rack (and a metric ton of dry wall) out of the wall. I thought “Why oh why can’t I be Mir and have a soap dish and tile to deal with? I know about tile and grout after all the mosaics I’ve done. I don’t know a thing about dry wall!” Thank you for sharing all that you do – be it home repair or parenting challenges – or both at the same time. It helps to know I’m not alone! (And any tips on how to repair holes in walls when there seems to be more hole than wall would be appreciated!) Peace.
Mir-
Check out this site:
http://glutenfreegirl.blogspot.com/
My dd was in the hospital for three days this past summer undergoing all kinds of ugly, invasive tests on her digestive system to rule out either Celiac or Crohn’s. Turned out to be Crohn’s which, while it is no picnic, I was sort of relieved to not have to do the Celiac diet thing. In doing my manic, pre-test research, though, I did feel relatively confident we could build a diet for her that we could all live with, even if it would take time. As for the tests, no, they were no fun at all (actually, it is the PREP that truly sucks…the tests are a cake walk comparatively), but in the four months since her diagnosis, I have watched my girl turn into a completely different child. She is eating, she is gaining weight (over 20 pounds!) after not gaining any weight in two years and she looks so blessedly healthy that I can easily cry from joy over it just by looking at her. So, bottom line, as much as I hated what she had to go through to get to this point, it was so worth it to have her healthy again. I hope everything works out well for Monkey and you!
I wish I had something helpful to add, but after reading the comments above, I see that any help I can give has already been dished out. Good luck with all this — I’ll be thinking about you guys! (And give me your address — I’ll send ice cream GALORE!)
Hi
Celiac is tough, but an answer might lead you to a treatment plan that helps him. GL to you and Monkey.
I hear the King Arthur Flour gluten-free products are pretty good, though haven’t tried them
Mir, I’m not a doctor, nor do I play one on TV, but my husband’s family has Celiac (two of my husband’s brothers and my father-in-law and three of his cousins–can you imagine me trying to make a good Italian family meal??? OY).
You also might want to see if he has Isolated IGA deficiency. My understanding is that this blood disorder usually runs in the same families as Celiac. My husband has the deficiency and has generalized stomach and bowel issues (had his first ulcer at 10). He doesn’t have Celiac but more vague and generalized symptoms that are treated individually AND he can eat all the dang pasta he wants…YAY!
My dad was just diagnosed with celiacs about two months ago. It took two intestinal biopsys (both which came back “inconclusive”), all sorts of blood tests, and finally just trying the diet and the drastic improvement over just a week or two that led to the final diagnosis. (12 years after the symptoms started!) It was a real blow to my dad, he has been a diabetic since 18 months old. So now he basically just gets to eat cardboard.
On the bright side, the Celiac food really isn’t that bad. Here’s hoping you get some concrete answers soon.
Ooh, Ooh, Ooh! Something I am totally familiar with! Little boy (4 yo) has been diagnosed Celiac for 2 1/2 years and is Gluten Free completely. I have GREAT recipes for kid friendly stuff, if you’re interested. This http://www.amazon.com/Incredible-Edible-Gluten-Free-Food-Kids/dp/1890627283 is the best cookbook I have found for kids.
The big thing with us what the cross contamination issues. If I’m stirring regular noodles in one pot and rice noodles in another, I cannot use the same spoon. Little boy has his own set of cookware…his own toaster oven…his own toaster. The toaster is a big one. We have found frozen waffles (that are SO good) and tapioca flour bread (that he loves) and you can’t toast them with other stuff. PB & J (out of his own jars) on lightly salted rice cakes are really good and Pamela’s pancake mix is better than bisquick.
It’s not as hard as it sounds. I know it’s overwhelming at first but you’ll be amazed how quickly you get it!
Poor Monkey! I’m sure it is heartbreaking having to give up the beloved poptarts! That’s like me giving up my Moutain Dew. I think I might rather die.
I hope that you get the answers you are looking for and that your little man starts to feel better soon. As much as it looks like it will be a challenge, I am sure that it is totally do-able and you will get the hang of being gluten-free in no time flat.
Big hugs to you and Monkey!
Hubby was diagnosed as gluten intolerant several years ago. The amount of time I spent at the grocery store reading labels was insane. My advice? http://www.kinnikinnick.com/
A gluten-free bakery that carries other gluten-free products (like mac & cheese and pretzels and cereal).
I hope this helps.
Hey there. I found you because someone posted my website as a sugggestion here, and then someone else followed that link, and then I saw it on my site meter, and here I am.
I love the internet.
Seriously, it’s not nearly as bad as you think. If he has celiac, it’s remarkable what it can do for your life. I have hundreds of people writing to me, thanking me for keeping my site, and they all tell me their medical history. I promise you — everyone feels better.
I actually eat better now than I ever did before. It changes.
Biopsies pass. But having your kid feel better? That one lasts.
Dang! I’m all teary now, and my brain is singing, “The Circle of Blogs…” (you know, like The Circle of Life from The Lion King).
Big hugs to Monkey, and even bigger hugs to his Mama, with hopes that everything works out with minimal sedation all around.
Also: potato chips.
http://www.enterolab.com does a stool analysis if you’re not up for biopsy. the blood test has about a 40-60% false *negative* rate. IME if one of the antigens is positive, it’s positive. We switched to gf with just the blood test and felt TONS better within 72 hours (other than the behavior probs from withdrawl).
watch out for sneaky wheat (like twizzlers and most soy sauce – but la choy is gf & cheap too).
We’ve been GF and dairy free for 3 1/2 years – my husband just eats gluten at work, and we eat really well. lots of cookies & brownies and all that. It’ll be ok. I’ve got a recipe site linked off my blog with lots of yummies. Also see if you can get Carol Fenster’s cookbook(s) from your library.
Good luck – you’re about the 5th person I’ve talked to recently with a new dx. I’d be happy to share any recipes or tips on good treats or bad treats – everything here is kid-approved & husband-approved.
i read a previous comment about gfcf diet not working for autism (I know a bunch of people IRL who would disagree). We also see a HUGE difference in behavior/neuro/learning while gfcf – on the diet my troubled kid is borderline diagnosable. off diet she’s unmanagable.
And I also need to disagree that gf food isn’t tasty. I’d go with corn tortillas rather than bread for a while, but gf can be delicious and totally indistiguishable from “normal” food. I hate kinnikinnik, though. Much prefer other brands.
Good luck!! De-lurking for the first time to say GF isn’t nearly as hard as I expected it to be! My husband recently went GF at age 40, and feels so much better. I realize 40 is much more rational age than 6, but there really are some good alternatives out there. I know a few kids who do some severe dietary restrictions, and we all share “special” potlucks. Are there groups near you?
Also, try Grandma Ferdon’s: based in Hayward WI, ships nationwide, I think. Good stuff!
The SCD (Specific Carbohydrate Diet) has been found to be a cure for people with Chron’s and other IBD’s as well as celiac disease (as gluten is forboden). When I’m on it, the whole family is also. That way, no-one is feeling deprived.
http://www.scdiet.org The email list is amazingly helpful and full of recipes.
Hi Mir,
Longtime occasional reader, but my first comment I think. I don’t see why you need to do a biopsy. If you take him off wheat and he gets better, you know he can’t eat wheat, right? My question would be whether this is celiac or are there more allergies? My 7 yo dd is off wheat, dairy, nuts, chocolate, anything with preservatives or coloring etc. etc. It’s a huge transition and takes some time, but if they know it’s hurting them because of how they feel it’s actually not so difficult. If you find you need to take him off other foods as well, please email me as we’ve developed tons of recipes for yummy healthy foods that are allergen free.
The way I transfered my daughter was by going to a store with GF baking mixes and whipping up a yummy cake (Gluten Free Pantry coffe cake – I put raspberries in it, and it’s fabulous), so she could see that all treats were not off limits. Halloween is hard, but in our house they get to have special (maple) candy (did I mention allergy to anything corn? haha, so fun!) the day of, then at night the Sugar Sprite comes and exchanges their candy for a really cool gift. My kids love their sugar sprite!
I think the hardest in all this is to think of it creatively and not just as a total pain in the butt.
Oh, loved your post about the clogged toilet. We’ve got the exact same issues here, only about ummm, twice a week?
You are so not alone in this, lots of resources out there. Good luck to you all!