A few months ago her routine screening for celiac came back high - finally after seeing the ped here, getting a referral to a ped GI, and getting the bloodwork done again, it was still high.
The Dr said a positive screen is over 4 and Kayla's was over 100! Yikes, that sounds like we can anticipate the biopsy confirming Celiac Disease.
I have to admit this feels very overwhelming thinking about going on a gluten-free diet and all the things we have to read labels for; which I've found out is not just "gluten" and "wheat" but things like "barely" and "rye" amongst many other names. All the food we're used to eating - breads, pasta, muffins, pizza, crackers, cereal - basically anything with flour in it usually says "enriched wheat flour."
We went to the local health food store and geesh the stuff is expensive! Seriously, how do families afford to eat on these special diets? And I don't typically see coupons for those speciality brands of food either!
I'm still praying that maybe, just maybe, this biopsy will show no damage done, but I'm expecting it will...in the meantime, I would appreciate prayers that everything goes well with the anesthesia, biopsy, and recovery afterwards.
Thank you!
63 comments:
PRAYING!!! and sending our love :)
Oh dear - that sounds challenging for sure. I'll be praying.
Big big hugs from Canada!!
It's difficult, for sure. Kieran has a nut & dairy allergy, so we've had to cut out a lot of our main foods too. So far we haven't had to try the wheat/gluten diet - I wish you well with it.
And hugs from us in Canada too!
Sending some prayers up for you! I have a friend here who has celiac. I can get some pointers from her if you'd like!
thinking of you guys! If it does come back positive, you'll manage, it will just take time. Reading labels will come naturally after awhile.
HUGS
Oh I hear ya, I think that diet would be so overwhelming ... and expensive! But I guess we do what we gotta do, right? Praying for the best!
PS...Whole Foods will be your new best friend!
We are keeping you in our prayers and hoping for the best !!!
Hey Michelle,
How are you? We are finally finished with our 365 and on our way to OK next week. Woo hoo! Anywho, Sophia has Celiac and it took me forever to figure this out...I was overwhelmed at first! I have some great website sources and have been able to cut down on the things (mixes) that I have to buy. Actually, once we move, our whole family is going gluten free. It will just make my life easier!! I have found many foods that are compatable and taste great. Shoot me an email and I'll pass those websites on to you. I should have access until th 31st.
Talk soon! Lacey
I have noticed that Wal-mart has a TON of gluten free stuff.
I'll keep you in my thoughts and hope it all turns out good.
I'm sitting here thinking of what to say, but it all sounds kind of stupid in my head.
Just warm thoughts for you & Kayla and this new challenge.
Keeping sweet Kayla in our prayers, Michelle. Brady had an endoscopy in the fall and it was really not a big deal. WE even got pictures ;) Hope it goes as smoothly for Kayla and prayers for you guys as you adjust to your new life-style.
Oh Michelle, I am so sorry to hear about this. I am sure it is going to be a difficult transition for you - I am sure gluten and wheat are in more than we realize. But you can do it! and I will pray for good results in the biopsy. (and just so you know, I'm not sure your second link is going to the site you want it to go) Keep us updated.
Michelle, we're praying. *hugs*
Oh honey.... Hope it's not as drastic as it sounds...
BUT, if she does need to go on a restrictive diet, at least you are already equipped with the best source of information you can have: Internet Mommies. There are slews of blogs and websites devoted to exactly this type of situation. There have to be ways to save money and time while providing your child the diet she needs. You can do it, Michelle.
Hugs and lots of well wishes for a benign outcome!
Praying that everything goes good.
You will do just fine, Michelle. I have faith in you! Ben is on the GFCF diet. It WAS tough at first, just trying to think of things he can eat, but after over a year and a half, we have basically got it down to a science. I thought at first that I was going to do a lot of baking of special breads and pizza crusts and all of that, but I have decided that with our busy lives, it is worth going halfway and just saving some time and buying some mixes. That way, you don't have to buy the expensive prepackaged cookies, muffins, etc., and you can still doctor up the mixes to your tastes. I DO buy bread, though, because I have never made a decent loaf of GF bread yet! I have some great recommendations for specific GF items if you are interested. Just shoot me an email at katie.whereisthumbkin@gmail.com and I would be happy to help!
if she does have celiac disease, check out the blog:
www.crockpot365.blogspot.com
the author has hundreds of gluten recipes that you can make easily in the crockpot
We know a lady with Celiac disease and she said that the first couple months was the hardest till you get things down, then it becomes easier and a little more "normal". I wish you the best of luck!
That totally sucks, Michelle. I know you can do it, but it will certainly be challenging.
My prayers are with you both... Hang in there and keep us posted.
Hi Michelle,
I am a mom of 3, special ed. teacher, wife and breast cancer survivor. I read your post today and hope I can offer some advice. Check out Trader Joe's website and look under special diets/labels. They have a big list of gluten free product and very reasonable---often cheaper than the supermarket prices. I know they have locations in Md. Best of luck and I'll be thinking and praying for Kayla tomorrow.
We will be praying
Will be thinking of you! That does sound overwhelming, but I bet you will overcome this challenge too. I'm sorry though, that you both have to go through it. :(
I will say a prayer for both Kayla and you mom. :)
My husband's cousin in Janeen over at Our Story (www.zumfamily.blogspot.com). If I have that address wrong, just cross reference it on my blog roll. At any rate, her son suffers from extreme food allergies-- gluten being one of them-- and she can certainly give you excellent guidance on what to do and where to go. She also works for WEGO health as something, but I can't remember what. Whatever it is, it is a food allergy thing. Check her out. Girlfriend knows her stuff. Her son is so allergic that he is anaphyllactic. (sp?!)
The test itself is basically a non-event. Hubs had it and all he commented on was that the drugs were lovely and he felt great. (While under the influence, BTW.)
Prayers to you!
I'll definitely be praying for you and Kayla. It won't be easy to make the changes you need to make if it's positive, but you can do it. There's a lot of resources out there, it will be okay, one step at a time. {{{Hugs}}
You guys are definitely in my thoughts. I didn't read all the comments and maybe you have already seen it but this crock pot blog has lots of gluten free recipes.
http://crockpot365.blogspot.com/search/label/gluten%20free
{hugs}
Praying Michelle!
We'll be thinking about you!
wow...what in the world! praying all goes well and you get some answers.
I'll be praying for y'all! That does sound almost impossible learning to live without all the foods you love. I hope everything goes well tomorrow!
Michelle, our prayers and thoughts are with Kayla and you during tomorrow's surgery. Gosh, I hate to hear this.. Please keep us posted on how everything goes.
I keep hearing from many parents about Celiac's Disease and how common it seems to be with our kiddos... any noticeable symptoms other than this test and should I ask of the test to be administered..?
My Kayla is Gluten & Dairy free. The prepared foods are pricy and of course Kayla is the carb queen, so we buy a lot of GF Pasta and Pretzels and also GF baking mix. I usually buy it by the case thru Amazon because we live in the middle of nowhere and there's no big grocery or health food stores near us. Good luck, you'll do fine with the dietary restrictions. It just becomes a way of life after a while.
Here's thinking of you during Kayla's procedure - and of course wishing you all a speedy recovery!
I have 2 friends with Celiac's - and while the beginning was challenging, they've managed quite easily.
Good luck!
In our prayers.
You know you've got my prayers! Please let us know the results.
I'm praying for sure!
oh dear. My fingers are cross.
It will be hard, but I know you can do it. My nieces (4 and 6) went from no known allergies to being allergic to eggs, wheat, dairy, and so on. it was a huge adjustment, but they are in the groove now.
HEy There
We had the same initial results and then the biopsy. Everything was totally fine, his guts were in perfect order. Celiac can ONLY be confirmed by the biopsy, the bloodwork has really very little to do with it.
If she has it, you will do great, but I am keeping my fingers crossed for a flaky blood test!
hugs
C
Totally sending positive vibes your way!
We are praying for all of you! We hope Kayla comes through all of the testing alright and if it is Celiac that you are able to figure it all out. I saw in the comments that someone said, "Whole Foods will become your new best friend" - that is probably true. Anne, our 2 1/2 year old, is allergic to eggs, wheat & peanuts so we do most of her grocery shopping at Whole Foods (they are really good about labeling things "gluten free") There is a brand called Amy's http://www.amyskitchen.com/special_diets/celiac.php that has some great gluten free food that Anne loves!!! Best of luck to you!!!
I give you lot of big big hugs from France, come see my blog too...all our love and kissessss!!!Kaïlanie!
I'll be praying, Michelle!
My child was diagnosed with Celiac disease in October 2007. The first 3 months were the hardest; it was eye opening for me to realize how much I depended on preprocessed foods to feed my family. Once that dependence was removed, living gluten free has been easy (remember most "whole" or "real" foods are gluten free). This life is our "new normal." It will become yours as well.
PS: There are local Celiac support groups throughout the USA and abroad. You are not alone.
Just a quick response to Christina's comment that "Celiac can ONLY be confirmed by the biopsy, the bloodwork has really very little to do with it".
In most countries, the blood test is enough to confirm Celiac disease. While some American doctors believe this as well, the AMA has issued a "gold standard" which is the endoscopic biopsy.
The biopsy will be positive if the villi is damaged (flattened). However, keep in mind a person with Celiac disease will have been affected for some time before the damage to the villi is noticeable. Hence, do not discount the blood work! The damage may not be apparent and you should have more blood work again in 6-12 months.
Gluten free is way tough to sort through. I have a friend from high school that has to eat gluten free, him along with his 2 sisters. It's a huge pain to shop for I understand from him. I can probably get some info out of him too about brands to buy if you like. He and his wife just had a baby girl I've got my fingers crossed that maybe it skips this generation.
Be well.
awww i will pray for that little angel!I bet it is hard to shop for food now.I hope all goes well!
love ya,
mimi
Oh Michelle - taht is a pain. A very old friend of ours has this condition - luckily there are a lot more ready to go roducts that are gluten free around now then than there were when he was growing up. There are also some good cookbooks available too. My girlfriend (his partner) just buys Whte Wings Gluten Free flour and uses it like normal. She would say - don't worry it isn't that difficult (although the bread is NEVER as good as it should be) - and she has had 20 years of practice!
I'm praying for you guys :) And I have a great gluten-free chocolate cake recipe!
That will definitely be a tough change - there are LOTS of GFCF blogs out there though that can help you!
Praying and thinking of you guys. xxx
I was reading a label last nite and thought of you. Monterry (sp) jack and chedder cheese cubes are gluten free. Ive not really been a label reader so thought Id share just incase you didnt know that one yet?!?
Thinking about you today! I've been checking in for an update! HUGS!
I'm late in seeing this but praying everything is well. Take care.
i meant to say gluten-FREE in my earlier post.
hope things went well.
i sent you an email about sam's dad passing.
Hi guys, just checking in to see how everything went...
Oh hon, I'm so sorry to hear about this. Good thoughts coming your way for an uneventful endoscopy. I am not well-versed in wheat/gluten, but I can commiserate on reading labels. Let me know if there is anything I can do for you.
Seriously Michelle, you need to read my post dated March 21.
The cost is outrageous but I have found that it isn't as tough as it originally sounds. Rice pasta is really good. The expense is what is the hardest (and the bread!) But in the long run you may prevent medical issues with you and your little man too!
Thinking of you. Knowing what you are going through too.
Love T
I was going to tell you about this one, but I see someone already mentioned it:
www.crockpot365.blogspot.com
She has graet recipes - easy to throw in the crockpot (love that!) but they are almost always altered for someone in her family who has gluten issues. So she tells you what products she used and how it worked. I think it would be a great way to start if I had to make these adjustments.
My dear friend has a son with type 1 diabetes and celiac. She had quite an adjustment period, but now, it's second nature. If you do have to make these changes, you will be great at learning what you need to know, and in a year - on the other side - you will think how easy it has become.
We'll be praying for you guys!
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