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Testing for Celiac
Luke has been dealing with health issues all his life. A couple of years ago I was worried he might have Celiac's because I read that sometimes irritability is a symptom and we had major problems with him being irritable.
Anyway, that thought went away again until yesterday.
He has been dealing with ulcers in his mouth all year. Viral is ruled out at this point because he gets it too often and it lasts too long. Apparently some people with Celiac disease don't have stomach issues but mouth sores instead.
Yesterday he had bloodwork done to be tested for Celiac Disease. At this point I don't know what I am hoping for.. on one side I am not sure what that would do to him.. the kid that will only eat pasta and nutella sandwiches. On the other hand I just want answers! If that is what's going on, at least we would know!
Talk about exhausted. Please keep him in your thoughts. He has gone through so much in his 3 years of life
Re: Testing for Celiac
oh no, poor Luke! At least if it is celiac's, you'll know now.
Honestly, H's younger cousin has it and it's not really that bad in terms of cooking for her. SO many things now are gluten-free that the whole family basically just eats all GF versions of "regular" food. Obviously she can't eat bagels, pizza, etc and the pizza is a big issue with going to parties or whatever, but her mom sends her with her own food and its fine. She's also extremely mature so she knows exactly what she can and can't eat and what to ask for in terms of whether it's in food or not. She also has juvenile diabetes which makes her situation a bit more complicated, but she is able to go to most restaurants and order something with minimal difficulty.
Also know that Celiac isn't always "truly" tested through blood work.... meaning that you can have an intolerance but not test positive for Celiac. So you can have all the true signs (stomach issues, other issues, etc). The only true way is a biopsy of his intestinal track. My aunt has it and I have a intolerance to wheat, gluten, rye, etc based on my IGG bloodwork but have never gotten the Celiac test done.
Have you had his IgG blood work tested for allergies yet? This is a different test than what "normal" allergist run. A normal allergist runs a IgE, which only looks to see if you will die from something. The IgG test looks to see if you react to something. I have SEVERE migraines and have had them for a years. I have found that my IgG blood work showed that I have a intolerance to all dairy(cheese, casusin), all wheat, gluten, rye, spent, and eggs. If I eat any of those things, I won't die but I have severe migraine, allergies, stomach issues, etc. If I avoid them and follow a strict diet, I'm very healthy with no allergies and no migraines. It's amazing what food does to my body.
Like Becky mentioned.... it's amazing how restaurants, stores, etc have come up with for GF foods, etc. You can almost always find a GF menu at a chain type of restaurant, you might have to ask for it. Pizza is rough at parties and so is catered food but you can always find something for him to eat.
Fingers crossed that you find out his heath issues!!!
DE IVF #1= 04/11 - BFP
I am not sure what lgG blood work is? I will talk to the ped when I get the test results. She tested for all kinds of vitamin deficiencies as well as a immunoglob.. something test.
I am also about to go to the store and buy some gluten free products and just give it a try. I can't just sit and do nothing.
Cool!!!! It can take up to 2-6 weeks depending on his immune system to start to see results. Gluten stays in our bodies for a long time and takes a while to get flushed out because its in EVERYTHING (medicine, drinks, foods, etc). You might see a little results, as it can't hurt but the long term results will take a week or two.
DE IVF #1= 04/11 - BFP
miscarriage on 11/26/09 at 5w6d
This is a pretty active board now - http://community.thebump.com/cs/ks/forums/11848064/ShowForum.aspx
DE IVF #1= 04/11 - BFP
I was diagnosed with Celiacs last year. My blood test (tissue transglutaminase) came back positive, and my digestive symptoms cleared up almost immediately upon going on a gluten free diet. My doctor didn't do a biopsy, and I didn't care to go back to eating gluten to get a positive biopsy (you have to be eating gluten and the gluten reaction needs to be destroying your intestine for a positive biopsy).
It was difficult starting out on a gluten free diet. Wheat seems to be in a lot of stuff you wouldn't suspect, as is malt. For the most part, my husband also started eating gluten free at home to avoid cross-contamination (he gets regular bread and beer). If I eat something with gluten in it, I am usually sick within half an hour or so (digestive issues). I also get super tired.
Once you get the hang of the diet, it's not so bad. Here are a few of the foods I've found that make excellent substitutes for the regular stuff:
-since you mentioned pasta - Schar brand pasta. I've seen rotini, short flat noodles, and the little circular noodles for soups at Whole Foods.
-bread - for sandwiches, i tried making my own for a bit, but buying all the flours was expensive, and I never liked it. I found that Whole Foods brand Prairie seed bread (It's in the frozen section), toasted, makes an excellent sandwich.
-pizza - we usually make up our own, using Bob's Red Mill gluten-free pizza dough. It makes a pretty decent crust.
-cereal - at the regular grocery store, Chex (not the wheat ones) and Cocoa/Fruity pebbles, otherwise, Whole Foods has a decent selection (but also expensive).
It seems like now a lot of manufacturers are putting 'gluten free' on their products, which can make it easier. Starting out, it's best to try and eat the things that are naturally gluten-free until you get the hang of picking out ingredients that aren't safe (example: not all yogurts are safe, and I've gotten sick from eating the ones that weren't specifically labeled gluten free, even though none of the ingredients screamed 'gluten!' at me - it has something to do on what the yeast cultures are grown on).
Best thing: google "is insert-product-name-here gluten free''.
Also, if he comes back positive, you have to think of everything that might enter his mouth - toothpaste, chapstick, your makeup if he kisses your cheeks - some people are super sensitive!
Feel free to PM with any questions if you want. Good luck! And I hope he feels better
Thanks so much Steph.
I am still waiting on the results but tried to cut Gluten for now and see. The problem is that he is already a crazy picky eater and it doesn't only have to be certain food but also the exact shape and color in those foods.
For example he will live off of pasta, but it HAS to be Penne or Spaghetti. He will not touch any other shape like shells or rotini's
The second food he lives off of are Nutella Sandwiches. He refuses to eat the bread that I made. I will try to buy some in the store that looks more like real bread but I am pretty sure he won't eat it due to the different flavor.
For today I am at a loss. I am about to send him to daycare and I only have the bread that I baked which he wont touch. He took one bite because I told him if he doesn't, they have to repeat the blood test (I know, horrible mom) but of course he already had his mind set on not liking it. I ended up having to give him a slice of regular bread since he has to eat something!
All this makes me want to cry. On one side I just want answers.. if this is what causes his ulcers and tiredness then at least we would finally have an answer. But on the other hand... I have no idea how to get him to eat the diet he would have to be on! Veggies? Forget about it. He will eat Yoghurt, bananas and apples, so at least that is good.
You're welcome!
There is a bakery in Remington called Sweet Sin. Everything there is gluten free, with traditional bakery type things (breads and cupcakes) but they also have a cafe now, with pizza and other entree's. I've just found out about the cafe part of it, so I've had the pizza, which was pretty good (it was nice to get a pizza we didn't have to make!). I've had cupcakes from the bakery (The first one I hated, the second one I liked), but I've not had the bread. You might want to call and see if they have something that's super close to real bread.
Whole Foods also has their gluten-free sandwich bread, which I've not had, cause I prefer seedy bread, so I went straight for the prairie seed bread, but it may be worth looking into. Did you toast the bread you made? Will he eat toasted bread? I think the consensus is that gluten-free bread tastes better toasted, and when toasted has more of a consistancy of regular toasted bread, so he might not noticed a difference.
There are other brands of gluten free pasta out there, including in the shapes that he likes, they just contain quinoa, which I don't like, but he might not be able to tell the difference. I've seen and had different types of gluten free granola bars, some of them are pretty good (I didn't like the EnviroKids brand, but I did like the Glutino and NuGo brands).
Just be careful with the yogurt, because as I mentioned, some aren't gluten free. Also, a lot of celiacs react to oats, so watch out for those.
All you can do is take it one day at a time!