Search Results for 'celiac'

[Anonymous]

that is a really good site. if i can figure out how to do it, i can send those of you that are interested a survival guide that came from a gal that used to be on the celiac web site. sometimes it is easier to know what you CAN eat, rather than what you can’t eat. there are actually so many things at the store that are guten free. we switched from nalley’s chile (gluten containing) to hormel chile with beans (no gluten). health valley and progresso both make a cream of mushroom soup that we use in recipes—we do have to thicken them, though.

health valley also makes a cream of chicken that is safe. there is also a tomato soup that comes in a box that we buy for recipes—-sorry the name slips me at the moment. cheetos, corn chips, tortilla chips. POST cocoa pebbles and fruity pebbles—actually most brands of fruity pebbles are safe—we buy malt-o-meal and kroger in the bags. walmart has a cocoa puff version that is safe, trix are safe (check the label to be sure on that one) several of the disney cereals are safe, too. those are all sweet cereals—but health valley makes a rice checks cereal.

ener-G brand makes some crackers that are really good=—-similar to a saltine, and their pretzles are really good—-i actually like them better than wheat pretzles. there is a pasta brand called tinkyada that is really good—if you fed it to someone else, they would never know the difference.

we buy gluten free oats from a company in montana and my girls have had no problem with them. bob’s red mill is also selling gluten fee oats, now. i haven’t seen them yet—-i ordered a catalogue that has never arrived.

you can get rice noodles fairly cheap from other places, but they get kind of sticky—-but they still taste good and work for spaghetti and fettuccine alfredo—-western family makes a package sauce for that that is gluten free, by the way. walmart also has a boxed scalloped potato mix that is gluten free—handy for those “i don’t want to cook” nights.

if you gals have any specific things you would like to try making or baking—let me know and i will see if we have made it already or if i have a recipe for it. i am planning on making an apple pie here really soon—-and the crust we use is excellent. we had a church dinner once and i ate a pie with a wheat crust and remember thinking that my gluten free crust had been better than that crust. tianna has made some excellent cut out sugar cookies—the kind you frost, which are one of my favorites.

if you are new at it—-it can be over whelming, but after awhile, it just becomes a normal thing at home, although it can be a little inconvenient at times. my girls have traveled and been on overnighters and eaten successfully at restaurants.

i know most of you are dealing with babies or toddlers right now, so some of my suggestions might not pertain to you yet—–but they will grow up before you know it. good luck to all of you that are going gluten free and please, if you need suggestions, don’t hesitate to ask. i have been in such a bad depression it might make me feel useful if i felt like something i said might help someone.

.

kevieb2007-11-12 16:19:38

[hellbennt]

Hi Anne!!! Hi Dianne!

Here are some links I’ve ‘collected:’

http://www.celiac.com/index.html
http://www.csaceliacs.org/
http://www.calgaryceliac.com/

And some yummy gluten free blogs!

http://glutenfreegirl.blogspot.com/
http://glutenfreegoddess.blogspot.com/

[Anonymous]

Anne, Sorry I didn’t see this message right away. I know what it is like to post a message and then get no answer! Sorry.

Here is a link to the Celiac forum: http://www.glutenfreeforum.com/index.php?act=idx

There is a recipe and baking section that has been helpful to me. It has been a while ago now, but I posted a couple of questions about “help me figure out what I did wrong with this recipe” pleas, and got some helpful advice. (For ex, I learned that without milk, egg, or gluten, you pretty much have to use xanthan gum otherwise you get crumbs!)

Andrew is still quite limited in his diet, but I’ve increased mine to include most foods except dairy, soy, gluten, peanut/tree nuts, and as a precaution, I’m avoiding all legumes. We had added turkey to his diet (which he loved) but now have taken it back out. He got an “intolerance rash” in early August and it took us a while to realize “hey, he is reacting to something”. Then it took nearly two months to re-eliminate the new things that had been added to his diet and mine. When we removed the turkey from his, the rash lessened dramatically. Unfortunately, it hasn’t fully cleared yet so we’re still trying to figure out what else might be bothering him.

I make him a “flat bread” out of potato starch, sorghum flour, apple juice, oil, and Ener-G egg replacer. He seems to like it now and again. He’s in a really picky phase (bad for a toddler who only has a small choice of foods).

I’ve been loving Gluten-Free Pantry’s Muffin and Scone mix for pancakes and mini-muffins. I use Enjoy Life chocolate chips in both. I also am addicted to Pamela’s chocolate chunk cookies. It is hard finding prepared foods that are GF, milk free, nut free, and soy free. Thankfully, I don’t have to look for egg free also. (By the way, all of Enjoy Life products are free of the top8 allergens plus gluten. The chocolate snack bars are an “acceptable” grab-and-go snack – the only one I’ve found that I can have.)

We just took Andrew to a new ped-GI and (thankfully!) he didn’t question any of our existing reflux meds or MSPI food challenges. He is concerned about Andrew’s distended “budda belly” and his pain in passing gas. He said Andrew is retaining stool and his belly is filled with gas. So, he wants us to start him on Miralax to see if that helps him fully eliminate the stool. That, in turn, might help with the distended belly and painful gas issues.

Hope this helps.

Dianne

[Anonymous]

I was researching some foods for Kendra and came across this helpful guide.

http://www.celiachealth.org/pdf/GlutenFreeDietGuideWeb.pdf

here it is: https://web.archive.org/web/20060210162434/http://celiachealth.org/pdf/GlutenFreeDietGuideWeb.pdf

[Anonymous]

sounds like your ped is a bit more up on his info than the allergist. the only thing i think differently than what he said, is i think that it might take more than 2 weeks on gluten before blood tests. neither of my twins showed damage to their intestines when they were scoped. they weren’t looking for celiac with kassie, they were with tianna. tianna did show increased intraepithelial lymphocytes, which are part of celiac, but they were only in one area. i asked the ped gi about my girls having no damage, and the told me that with their test numbers that they probably did have damage. he said the intestine is about 22 feet long and his scope can only get in about 6 feet.

i think i told you before that each of my girls had different symptoms, and that molly didn’t have any obvious symptoms—-so symptoms can really vary—-so i would guess that the waking and crying could be a symptom.

keep me posted and thanks for the update.

[Anonymous]

Hi Christine,

I just wanted to update you, I recently was at Lucas’ ped gi appointment and asked about the celiac testing and he confirmed your comments that he doesn’t consider the blood test accurate until age 3 or even 4! He also said that to his knowledge you should be having gluten for about two weeks before the testing for an accurate result….so Lucas’ testing is definitely not trustworthy. The ped gi said that in Lucas’ endoscopy at age 10 mos they didn’t find anything in biopsy, but that it’s also possible to miss the areas that might have shown celiac through biopsy.

Anyways, we trialed gluten and it was very obvious that it was bad. But his symptoms were so strange, just the waking crying throughout the night, but all other nights he was sleeping through for ten hour stretches (and he has regularly slept well since taking out gluten). So, we are proceeding on the gluten free diet and won’t trial again for a while, the ped gi suggested maybe a year. We trialed dairy and it seems to be going okay, he’s having string cheese a few times a week now. I just wanted to thank you again for your knowledge, and it was your comments that made me ask the allergist (we aren’t seeing him anymore) and the ped gi. I don’t want him to have celiac, obviously, but I want to know the true medical possibilities at this point, you know?

Thanks and I hope you and the children are all doing well.

[Anonymous]

Hi Dianne,

I was just wondering what the Celiac forum is, or what the link is. We’ve just trialed gluten this fall and it did not go well. I’m realizing that I need to expand my repretoire of foods as this is looking more long term. I just bought Bette Hagman’s Gluten Free Gourmet Bakes Bread and Gluten Free Gourmet Cooks Fast and Healthy. But I have to admit, I’ve only used mixes for breads, etc. and it’s all very intimidating!! Any advice or links would be great. Are you still on the gluten free diet? How is your child doing?

[Anonymous]

the problem with those enzymes is that they are not stopping the damage from the celiac. they may be helping her to not feel the symptoms, but the damage is still happening in the small intestines. there is no cure or treatment for celiac at this time except for a strictly gluten free diet.

[Anonymous]

Christine,

have you heard of Zyme Prime and Peptizyde made by Houston Inc.?

My MIL, whom is celiac, said she has gotten great benefits from these two enzymes specifically. It is not a quick fix of course, but she said she can eat a meal when she goes out with freinds containing gluten as long as she take these with the meal. Dosing has to be right and she works with a holistic chripocator (sp?) who has helped her figure out the right dose for her. You can read more info on the website above. There is also a book by Karen DeFelice, where she shares her personal testimony as long with other people. I thought it was very informative and worth a try for me (or Kendra).

I never heard of the Zonulin Antagonist before. i’ll have to do some more research about that one.

thanks for the added info.

Leo

kendramom2007-10-19 12:43:26

[Anonymous]

so far, there are no enzymes that will help with celiac disease—–the only way to treat celiac is with a completely gluten free diet. there are, in the works, a couple of hopeful things to treat celiac disease eventually—and one of them may be an enzyme—-the other is a zonulin antagonist, but as of yet, neither of them is available. the zonulin antagonist is is the second phase of human trials—–i really hope this one works—-i’ll be the first in line to get it for my girls.

[Anonymous]

This site has tons of great info..

http://www.enzymestuff.com/basicsdosing.htm#20

[Anonymous]

Lauren,

Didn’t they already tell you from preliminary examination during the scope itself that they saw some esophagitis? I remember your other post saying that the doc said that his LES is still open somewhat. The open LES would cause reflux, and the esophagitis gives the suggestion that the acid is giving some damage. The fact that the biopsies came back clear doesn’t mean too much- our GI told us that they only do a couple for EE and celiac and one other that I can’t remember. It’s still possible for him to have allergies or intolerances. I’d put him back on the prevacid, and also try to eliminate all suspects from his diet like Ann Marie suggested. Then at least you know that you’re doing all that you can. HUGS.

[Anonymous]

Hi Lori

Yes, he is doing pretty well… i think we have the right setting for him (school), the right therapists and we are going in the right direction. We will wait until we see the geneticist to be optimistic but given the progress he has made so far… we are seeing LIGHT AT THE END OF THE TUNNEL!!!

Well, i just feel like the developmental ped is kind of an all stop shop…. they are pediatricians, they are dev specialists and they are physiatrists. That means that they can do a good chunk of the evaluation themselves.. + when you go to a dev ped here they will do the OT/SLP eval as well… which is why the sessions are long or they will rely on the most recent evals done by other therapists. The difference between working with them +therapists or working with them and peds is that the dev peds are usually able to bring it all together…

In our case, i feel like we knew what was going on with Matthew before we went to see her… i really thought that the diagnosis that we were given in May or whenever it was by the SLP was accurate. But i was surprised that nobody had ever mentioned it before, because once i started learning about the disorder, i mean Matthew is like a textbook example; so i think that there are times when you get lucky and one of your therapists can really tell you what is going on, but most often, they do not/cannot.

Also, at least in the US — a therapist cannot really diagnose many disorders… so if you want services covered etc you need a pediatrician’s eval, which is why people go to dev peds. Ie the therapist may tell them SPD but unless it is written by a ped, it is really discarded around here… yes, you will get OT covered if an OT does an eval done and your child is delayed a certain degree, but getting into schools, getting related services etc is difficult unless the counties/state has something written by a dev ped.

The dev ped looks at other things… for example, in Matthew;s case, his facial features; so the ped says yes, he has a big head but that is probably normal. The dev ped says i see hypotonia – OK, what else can i identify that would help me find what is going on.. oh he does have a big head; his forehead is bossing a bit; his jaw is small — on their own these things mean nothing but to them, combined with hypotonia they could mean something (and by the way, they could not come up wiht anything that would combine all of those things together, but that is why we are going to geneticist).

I feel like the dev peds also know a lot about disorders, that the therapists do not necessarily know about. In our case, when a child has hypotonia they look for muscle enzymes, specific vitamins, carnitine levels, thyroid functions et (these things by the way are not included in your full metabolic workup), celiac panels etc etc. Because it is possible that there is some deficiency in any of these that could be making the situation worse… the vitamin E for example, now that you mention SPD… supposedly kids with sensory issues have deficiencies in this vitamin…. and a lot of people notice a big change once you start supplementing…

The other big reason why people go to dev peds is behavioral issues though… ie spectrum markers… yes, a therapist can tell you this kid does not socialize, have good eye contact, does not do pretend play…. but the dev ped will confirm/deny diagnosis and tell you where they are…

Anyway — not sure i explained it correctly?

On Hailey — i am sorry to hear you are still having issues. On the articulation/clarity — Matthew has that from his low tone, except as we discussed before, he cannot go on putting syllables together because he just does not have the air capacity to do so, so this sounds different. I really do not think that a child with apraxia could be putting that long string of workds togethers… just not from what i have read/discussed; does she confuse words/beginning of words? or you are just not able to understand her correctly? is her language age appropriate? ie she uses pronouns, verbs, 4-7 word sentences?

What i would do in your case, as a starting point… and this is just me. Have you heard of Nancy Kaufman? I think we talked about her before… she is one of those apraxia specialists… do you know that she does evaluations from a dvd if you send it to her? If you go to her website (if you cannot find it let me know), you can email her with your story/question… I did — i explained Matthew;s background, how he was diagnosed with dysarthria etcc etc… she said that if i sent her a tape she would be able to tell me what was going on, if it was one of the disorders (ie apraxia, dysarthria etc)… it cost something like 40-100$, and there are instructions of what she would like you to do during the video…. that is just an idea???

I don;t know much about sensory issues… Matthew is the same way with certain things– i cannot turn on many things around him because he will freak out but they said it is just pretty normal at that stage anyway… but during the eval they focused more on talking to him, making him play witht textures, putting things in his mout with different textures, putting him upside down and seeing how he reacted, etc; we did not really go there because of sensory concerns.. so not sure how they would have evaluated him if we had?

I think you read the Late Talker? Maybe also get the OUt of Synch child like Amber suggested? I heard it is really good about sensory stuff, although i have never browsed through it.

Anyway — i hope you figure out what is best for her soon…. but i woudl really think about getting Kaufman’s quick opinion, even if it is from a dvd… people swear by her and she is super friendly on email…

The other person, obv, is Sara R-J… if you check her website, she does conferences/teaches courses everywhere…. maybe she will be in your area soon? Maybe she can recommend someone? I just think that SLPs that are good and can diagnose what is going on are hard to find… these 2 are prob the best i have been able to identify (together with Agin)…

Hope this is helpful — turned into a book…. i am no expert, just letting you know what worked for us…. we started with an SLP eval though…. then went to someone really knowledgeable about speech issues…. and that has led us to dev ped etc…. so i would start with the SLP before you go ahead and book a dev ped

MANY HUGS

[Anonymous]

Hi Amber!!

Please don’t apologize!! I think that it is wonderful that people share their experiences here… i feel like i learn so many new things everyday… just want to make sure i write them somewhere so they do not get lost.

Wow — cannot believe that you had to go through many of those diagnosis… it is such a long road, isn’t it? I feel like Matthew’s life has been a bit of a rollercoaster but he is truly doing wonderfully (ie he is catching up slowly and surely!).

Thank you for sharing some of that with us… yes, smart little kids, aren’t they? On the apraxia, are you doing PROMPT? Dr Agin is wonderful — i read the late talker too and when we had to choose a dev ped, i decided she was prob a great one… seems to really care, i know that she fights to get increased services etc.

On the hypotonia…Aidan does sound like Matthew a bit. We do not have the W sitting (they did mention it in the meeting at one point). Glad to hear that swimming is working for him because we jsut signed MAtthew up for sat lessons… he may not like it but we are going to try… at teh end of the day, i feel like swimming is great regardless, so why not start this early.

Sorry to hear about the fishoils — you know, i tried to give them to Matthew a while back and he was vomitting a lot so i do not know if there is a correlation, so we stopped. I guess we are lucky that he has the tube still and i will be giving it to him that way… at least this year and see what happens. Did you ever try vitamin E? Have you ever been to the apraxia board on cherab.org. If you like Agin, there are a ton of epople there that see her/Claudia Morris contributes a lot etc… all those people though are being helped by DAN! doctors, even for apraxia only…. there is some good info there, although it can be over the top. Is Aidan on a CFGF diet? Did you try that at all? I guess for us, Matthew started talking at the same time we introduced whole milk… so Agin said we prob have no issues with mlik then (before that he was on a formula with slightly broken down proteins)… but she still wanted us to get the celiac panel… which we will do soon.

I am glad he is doing well in school — Matthew is too!! We were really lucky though — we have a wonderful service coordinator from Early INtervention who was the one who suggested we get Matthew into the special ed preschool… she is so proactive, it is kind of unbelievable (but she herself has a SN kid, who is now an adult, but she truly cares).

We have never been to a neuro… thanks for posting your experience, i think we are going to stay away from them for now. Thanks for your encouragement… there are days and days but i feel lucky because i do a ton of research adn i think that we finally have a plan with Matthew.

Now, to worry about #2… who will be here soon (yes, Ann Marie… he is coming :-)). I guess Agin wants to do all this testing and wants to make sure that we have some answers in case #2 has similar issues…

Please keep in touch — would love to hear how Aidan (and you are doing)… I keep coming here regularly, although i post only when i have something interesting but will surely post back with any results/ideas/conclusions and to update.

(oh just thought about this… did you ever look into hippotherapy? It is a really interesting concept and people on another board swear by it…. just thought i woudl mention it because it would seem good for the hip/trunk hypotonia?)

[Anonymous]

Ann Marie

Happy to talk to you re our visit to the dev ped… Dr Agin… she was really great. If you want more details PM me and we can talk…

For others — i know there are not a lot of kids in this forum with issues like Matthew’s, so this was posted in another forum, but i still thought it woudl be worth it putting it here… there is some good info about what the dev ped does, what they think is going on with Matthew and new ways we are trying to help him…

Ask any questions you have!!

========================================

I am posting this here (vs Special Kids but will link it)… I think that there is some good info from the visit and i know that some people have been wondering about what a dev ped would look at…

So, we took Matthew this morning to see Dr Agin (she is well known in NY and wrote the book called The Late Talker… she is well known in the apraxia world and she used to be a speech pathologist).

Anyway — 3hour meeting with her, another dev ped that she is prob training and a speech therapist. They played with Matthew, examined him, did full speech/feeding eval, physical, reflexes, history etc etc. Matthew was really cooperative so we were pretty impressed although he was quite tired at teh end and a bit cranky.

Their thoughts:

– congnitively he is doing wonderfully – very smart. His language processing and development is on target. So it was nice to hear.

– he has hypotonia, mostly on hips, trunk, face, but in general everywhere. Not developmental but rather neurological… however, the reflux has had a big impact in him it seems — ie once he hit the 18-20month mark, he started sleeping well, talking, eating, etc so they feel that there was something there that was just too much for him to handle and once the reflux was more under control he started being able to process language, thoughts, motor planning etc. So, they do not know how much of his low muscle tone is caused by neurological issues/how much is caused by reflux. Anyway, they want some testing, both extensive blood work and genetic testing.
— on the bloodwork, if anyone is interested, i can give you the specific list of things they are looking for that could impact hypotonia, ranging from full metabolic workup, to vitamin deficiencies, to a celiac panel, to some muscle enzymes etc. If you are interested i can put it in here. They said that they do see reflux kids have malabsorption issues of some sort… so they need to rule this out and mkae sure he is getting everything.
— on the genetic workup — they really do not have any specific in mind… ie they just want the geneticist to see if he can identify the muscle disorders that could go with reflux/big head/prominent forehead features and do some testing… especially with the new baby coming etc. and for Matthew;s own sake in the future

Things we need to work on — they feel that at this stage, we need to focus on PT, rather than speech and OT. They feel that we need to get his body stronger now… his speech is delayed but his language is appropriate and he is making progress there. His grasp etc is weak and he is slightly delayed in fine motor — they think that he needs his core strength first. So, they want Matthew to do PT 2x per week + do one of those gym sessions like Little Gym + sign him up for swimming if possible… said it is really good for kids like him, because they get to move legs/arms a lot more.

Want us to give fish oils (ProEFA)… 2 capsules, 1-2 times a day… so that is a big amount; they will prob want some vitamin E too (new research on its effect on language and apraxia kids as well as fine motor skills) (i can tell you which vitamin exactly if you are interested….)

Wants us to increase consumption of proteins… once we get the labs back with carnitine levels, they will see if he needs carnitine but in the meantime, tons of meats/beans, less carbs.

I think that is it… so we will be focusing on doing a lot of physical stuff, doing the fish oils/increasing protein intake and getting all this labwork done.

On prognosis, they said it was great given where he was vs where he is but they said that we will prob have to work on PT for a long time… said that kids like this take years to catch up… but they also said as soon as testosterone levels surge during puberty, they usually see a change in muscle strength/tone.

On the socialization part of it… he is doing fine. They said nothing to worry about but they thought he was almost TOO GOOD/TOO GENTLE. They usually want to see someone with a bit of a temper etc but said that school should take care of that.

Sorry this is long… just know there have been some questions re dev peds and what they do/what they can do and also i thought it was interesting that they have so many supplements that could help with hypotonia and some of the deficiencies that they think can affect it.

If you made it this far — thanks for reading. Happy to answer any questions.