Search Results for 'celiac'

[Anonymous]

Hi,

All I can say is that food reactions can happen with anything, it seems. You’ve probably already taken the cinnamon toast out to see if she gets better, but that’s the best thing to do. The allergist and ped told me the best way to know with these little ones is to remove the offending food and then if hte symptoms go away, then later on reintroduce the food and if they reappear, then it’s a definite problem. I have always been too cautious to re-introduce anything that I thought really gave Lucas a horrible time but it’s as effective as testing according to my ped. I can’t remember when, but I suspected Lucas was having a hard time with cinnamon a long time ago and just stopped using it in whatever i was eating or fixing. I never fully determined that it was a definite problem, though. Could cinnamon be cross-contaminated with gluten? You know how facilities that process all the flours and fine particle things seem to do all those sorts of foods? Just a thought…

What kind of gluten free cinnamon bread are you having? It sounds yummy! Did you do allergy testing for gluten specifically? We just recently did the blood allergy test but only for the big 8-10 most common allergic foods to infants (dairy, soy peanuts, wheat, etc.) gluten wasn’t in the list. Then they tested Lucas for celiac and it came back negative, along with negative for all the blood allergy testing. Can you do an allergy test for gluten specifically?

[Anonymous]

Kim – My dh almost missed our ultrasound too for the same reason! In fact he also completely missed one of my regular OB visits b/c he was in the bathroom the whole time!!!!!!!!!!!!! I laughed out loud when I read that!!!!!!! What’s with these men???????

A co worker of mine has celiac disease. It’s not fun to manage!

I think I am going to do a trial with Nutramigen. It’s worth a shot. How long should I give it? 2 weeks? 3 weeks? Will I notice improvement right away or does this take a lot of time like the Neocate does?

Thanks for all the responses! I’m bound and determined to make Sarah a happy little girl!!! I feel like we’re almost there!

Amy

[Anonymous]

My OB says the same thing – she thinks that WAY more people have celiac

than they know – and that it doesn’t always show up on the tests.

[Anonymous]

In researching stuff about Kaelyn’s allergies I read a lot about celiac disease. Several articles said that many, many people are incorrectly diagnosed with IBS when they actually have celiac. Just a thought.

My dh is the same way. He went to the doctor about his symptoms, but downplayed them to the doctor so he said that everything sounded fine. Yet, we are constantly having to work around him running to the bathroom with “pains”. He almost missed Kaelyn’s 20 week ultrasound because he had to run to the bathroom. He just thinks it’s normal because everyone in his family has the same problem.

pkkb2006-8-22 21:0:21

[Anonymous]

Is there any possibility of finding a GI doc who’ll listen more to what you’re saying?

I love the idea of going to the other celiac doc. If there’s history of celiac in the family, that may be what you’re dealing with again. Run this theory by the doc… gluten sensitivity causes reflux. It’s kinda backwards thinking, but that’s what happens with my son. The reflux is more like a symptom of him eating the wrong things. Although the reflux does need to be addressed with meds, it’s not the major issue. It just gets better and it can be controlled by meds.

When do you go to this other doc? Can you hold off going for a ph probe and endoscopy until then? Sounds like you want to. Good idea to me. With the endoscopy they may do biopsies for the celiac. Did they do that with your other children? They may just say, let’s try *BLANK* and see if that helps with the family history. Ask them if there’s a gluten free fomula to try, unless you’re BFing, then cut gluten out of your diet.

So, how long have you had him off the meds? How’s that going? Any worse? Do you have any meds left in case it get’s really bad again?

I’d really try to skip the testing after this other appointment or you find a new GI doc.

This is all my opinion of course. Just trying to help:) You sound as frustrated as most of us have been several times. Hang in there.

[Anonymous]

MSG is fine for someone with celiac—–unless they happen to have an intolerance to MSG. it is a flavor enhancer—–some people consider it a drug. i have never worried about my family eating it.

[Anonymous]

In reading up on celiac (since there isn’t a lot of info out there for a simple wheat allergy), I’ve seen MSG mentioned several times as something to avoid if you have celiac issues.

[Anonymous]

HI!!!

Ican’t remember if I mentioned this before, but my son was tested for celiac by stomach biopsies during an endoscopy. The tests came back negative, yet gluten is his issue. We’ll be going to the GI doc in another month, so we’ll see what he has to say about it. Just an FYI for you to keep in mind.

Wow! that’s a lot of testing. Hopefully they’ll get to the bottom of things. You sound like the point we were at in December. Although, Henry’s weight wasn’t as bad. That would be soooo heartbreaking!!!! I’d be having a nervous breakdown if I was you.

Bummer about the mucous thing. I know exactly what you’re talking about. Luckily, the enterolab in Texas didn’t need him to be eating things for it to show up. As long as it wasn’t too long without, it still showed up.

You can email me if you want… thesignshop@nicoproductions.com

Give me an update when you get the results- or if you just need to vent.

[Anonymous]

I know this is a little late but here is our update for now. Owen did end up having croup and was miserable for days. He lost some weight and hasn’t gained it back yet and is now off the charts. He weighs 19lbs 9oz now. Last week Thursday we had an appointment at the german children’s hospital and they did more bloodwork, a sweat test, an ultrasound of his stomach and I had to drop off some stool samples. They are testing for malabsorption and celiac disease since he has only gained 1lb since December and also only grew about 1 inch since that time. The German doctor even wrote FTT on the paperwork for the ultrasound tech . I have to call back on Thursday and we’ll talk about the results and go from there. I’ll keep you all posted on how things are going.

Oh and we had put him on a regular diet for all the tests and let me tell you, we have been dealing with a reflux flare up, diaper rashes, lots of whining, clinginess and his eczema on his toe is so bad that it started bleeding. I emailed his ped and she said it’s ok to put him back on his limited diet now since they already drew blood and took stool samples. Of course when we did the stool samples he was constipated, so no icky gross mucousy poops to show them. Now today he had one of those yucky ones again, go figure.

My2boys2006-7-10 17:16:9

[Anonymous]

hi all, we got home tonight, but tianna was not able to come home with us yet. we were a bit frustrated with the whole thing. we were brought up too soon, even though we had told them when we were there before that we wanted to come back when she was almost ready so that we could do the training and take her home. tianna is back to the weight she was at in december, but they want her at a higher weight before they will release her. we explained to them that most of our children are small. they asked to see past growth records which showed that she has gone down on the charts since she was 10 years old. they figure it was because of celiac, but we don’t know that she has had celiac that long. she is eating great, we don’t have to do any prompting or encouraging. hopefull she will be released by the 14th. my dad lives in washington and will check her out of the hospital and get her to the airport and on to the plane, which takes a load off of my mind since we really can’t afford to go back to seattle again.

we are a little worried they won’t be able to get her to the weight they want since kassie only weighs 7 1/2 lbs and is 2 inches taller than kassie.

[Anonymous]

My cousin uses this pancake mix – is gluten free as well as egg free
and dairy free! Never asked her how it tastes though LOL
http://www.celiac.com/catalog/product_info.php?products _id=330

Here’s a recipe for egg free waffles

http://www.mrbreakfast.com/superdisplay.asp?recipeid=1018

I buy the Earth’s Best products at my local organic market but they also sell them at Whole Foods and some grocery stores too.

Have you used any of the commercial egg substitutes available?

[Anonymous]

Sorry to hijack too, but in answer to your question….no, food allergies do NOT run in our families, to our knowledge. It turns out Ryan, my husband has felt much better with a milk free house, and he seemed to get stomach aches as a child when he ate ice cream, etc. Nothing severe, though, and I would guess probably mild lactose intolerance which is fairly common in adults. I’ve eaten anything and everything my whole life.

apparently celiac disease is much more common than most people realize, I read one in 133 people in the US….and a lot of folks misdiagnose it as IBS. My mother in law and sister in law have intestional issues which have never been linked to celiac…I mentioned this idea to my MIL who literally laughed it off. I’ll really have a good laugh if we find out it’s been celiac all this time in conjunction with the hiatal hernia and reflux for Lucas (he’s just gone through blood testing for celiac, we get results this week). I think from what I read that with celiac, SOMEONE in the direct line has to have it. But you never know, he might just be super sensitive, the allergist said all of htis is really possible just from protein intolerances and reflux in combo (and our friend, teething).

I have been thinking about you a lot lately. Just remember, with us, it was 18 mos of age before true improvement with sleeping. Hang in there!!!

[Anonymous]

Susan! I can’t rememer if I emailed you about this but Lucas’ BIG breakthrough came when we removed GLUTEN from his diet.

Okay so he and I are dairy, soy, and gluten free. What do we eat…? I know that’s the next question. Well, he does eat eggs, so it’s eggs with spinach every morning. There are gluten and dairy free waffles at Trader Joe’s (do ya’all have one up there?) that are banana flavored to boot. You can do all the fruits and veggies, we make all fruit smoothies and Ryan has gotten really good at doing the rice milk, banana and strawberry smoothies. Ryan’s smoothies have been a big hit with those blessed to be NOT on our special diet, as well. Lucas loves his rice milk nad we tell him that everyone else is drinking it, too. I asked him what the baby calf at my parents’ house was drinking (the calf was being bottle fed as the mother had died) and Lucas immediately said, “Rice milk!” There are pancake/waffle gluten free mixes, and I use gluten free bread, brownie and cookie mixes as well. He eats a lot of hummus, it’s really a staple of his diet. And his other staple are these little chicken breakfast sausages from Trader Joes that I fry in olive oil. Stores like Whole Foods and Wild Oats have been a salvation, and yes, there is no college fund cause it’s all being spent on food right now! haha. But at least he is sleeping better. We also do probiotics, I just found a chewable tablet that is flavored nad I called it “candy” and he was asking for “more candy” after chewing the first one. BIG SCORE! he had started refusing to take it from syringe, lately. This was Primodophilus for kids (age 2-12), by Nature’s Way brand.

We also just did the RAST blood testing for major fod allergies, and our allergist (who I loved from the first minute, even though I am completely suspicious of docs now)– said even protein intolerances can cause these fitful sleeping and sleepless night reactions in kids. We also had the blood test done for celiac disease just in case, cause he improved so much when off gluten. We get the results this week Friday.

As you have read, wheat is a common food allergy in children. Problem with removing wheat is that from what I’ve read, the way wheat flour is processed in our country, often other grains that should be safe really aren’t cause they are all done up in the same facilities. Also, if you can’t do wheat, there are a bizillion other grains that might also cause a problem. So, I opted to do gluten free from the get-go when I looked into this possibility. Gluten free things are labeled very clearly now-a-days in a lot of stores. We can always add back in other grains if we get cocky and want to get scientific about adding things back in.

We’ve also been going to my chiropractor, who is amazing with kids. She’s trained in working iwth babies, toddlers, andpregos, but has a family practice. She’s been a big help as well. SHE mentioned wheat as a possible cause for night waking a year ago, when I thought I would starve if I tried it, and when the other docs weren’t saying anything remotely like that.

Ditto is what I say about teething. It’s a complete nightmare. We’re throwing a huge “Lucas has all his teeth” Party when the day finally comes.

You should call me or email for more info on all this. We’ve done the food trials, too. It really su*!%#& to do all this, I’m so sorry to hear that he’s still having these issues! Hugs to you all!

[Anonymous]

MY TWO BOYS_________

Thank you for sharing you story.

We found one of Henrys intolerances through a lab in Texas that tests the stool by shipping it to them. I found them at http://www.enterolab.com

I’m not sure if they do overseas testing. I’m sure it says somewhere on there. or you can email and ask them.

I never thought of this earlier in our situation, but alimentum has gluten. We had Henry on Alimentum. Through these enterolab tests, we found out that gluten was the culptrit. He’s been gluten free for about 2 months and each day he gets better and better. It takes a long time to get out of their system. Especially the older they are and the longer they’ve had it. Now, if your docs are thinking of doing biopsies with the scope for Celiac disease, according to the enterolab, you can have gluten intolerance without testing positive for Celiac. Henry had these biopsies and his GI doc was positive he didn’t have an issue with gluten. He said there was NO WAY possible. The enterolab tests of Henrys say differently. Plus, I can see the results of him being off the gluten. I wish we had done the enterolab tests first instead of putting him through the scope. We did the allergy blood tests as well. Another thing I could’ve done without. Negative test results.

I’m sure the rashes and BM issues have something to do with the intolerances somehow. We almost have too much in his diet to figure it out at this point. It’s soooo much better than it was though, that I’m pretty happy at this point. If this diaper thing happens one more time though, that’s when I’ll start on my campaign again. have you ever heard of kinesiology? I think that’ll be our next step.

We are expecting another baby in Aug. and I am thinking I’ll need to go on the gluten free diet and exclusively breastfeed to have a happy baby. BF with Henry didn’t go so well, but again, I never thought about the gluten. Maybe this time it’ll be better. Henry was such a misserable baby. It really makes me nervous about this next one.

Great talking to you about all this. It’s hard to find parents with such similar views.

[Anonymous]

Lori,

Thanks for asking, he’s sleeping so much better. I think last night he woke at 1 am and then again at 6…and this is during teething. He recently slept for 11 hrs. straight one night…the best night we’ve ever had. I keep telling Ryan that we’re throwing a party when he has all his teeth. We meet with the allergist June 30 to talk about RAST food allergy test results nad teh celiac disease blood test results. None of these tests are fully conclusive, but will help point us in a direction, possibly. Taking gluten out of our diet has truly changed our lives.

You are so amazing to tell these therapists that you won’t just leave Hailey. I can’t imagine hearing professional telling me that sort of thing about my child who is sick. Hang in there, I see you’ve got an endoscopy scheduled, too. Yea!