Search Results for 'celiac'

[Anonymous]

Christine,

My thoughts are with you and your family. I was gone myself, so I’m just now seeing your latest news.

And I have to add, your info about celiac and removing gluten have really saved us here. We just had Lucas RAST tested for food allergies and also did hte celiac blood test. We are waiting on results. WIthout you on this board, I might have never figured out hte link with gluten/grains. And for this I cannot ever thank you enough. Your other ideas on surgery were also such a blessing at the time.

I hope things are improving with your daughter.

[Anonymous]

At this point, I’m saying no more doctors! To heck with them all. I’m doing better for my son with the internet research on my own, but I just thought I’d throw this out there and see what happens.

We are dealing with no allergies, but intolerances to gluten, soy and milk. Our GI is great, but isn’t on board with us on this due to negative testing. I’m not sure he sees the signifigance between allergies and intolerances and/or the separation between gluten intolerance and celiac.

I’m not sure I need a doc, but it would be nice to know there’s one in Ohio that can handle all this. How did all of you find out your child was intolerant instead of allergic? Any recomendations of docs that understand all this in Ohio?

Thanks=)

[Anonymous]

amy, i forgot to tell you, i have had alot of trouble with depression and anxiety over the years. i have taken antidepressants while i was pregnant. i have also nursed some of my children while taking antidepressant with no ill effects.

as far as eating—-we actually eat pretty much the same way we did before the celiac diagnosis. we bake with alot of different flours, and most of our baking has been very successful. we use xanthan gum to replace the gluten. we have used rice sticks for dishes that use noodles—-but then we discovered tinkyada pasta—–it is really good, nothing but brown rice and water, but it tastes just like wheat pasta. we still make pancakes and waffles and muffins, just gluten free.

kinnikinnik makes some really good gluten free products. i have ordered my girls donuts, sweet rolls, bagels, english muffins, animal crackers and even some cookies that are similar to oreos. we have found gluten free mushroom soup to use in recipes, and we buy hormel chilie now instead of nalley’s. one of the cold cereals i have bought for my girls was a real hit—-kassie says she thinks it is the best cereal she has ever had—-even before celiac. it was called perky-o’s. looks like cheerios.

i recently bought some gluten-free oats grown and processed under pretty strict standards to assure that they are gluten free. they were pretty pricey, but my girls like granola, so i can make it for them now. gluten free has been more expensive for us—-but not nearly as difficult as i thought it would be. post cocoa pebbles and post fruity pebbles are both gluten free. cocoa puffs are now gluten free—but you have to make sure you get the new boxes—some of the old ones with gluten are still on the shelves. there is also a cereal called island berry neopets (something like that) that is gluten free. they are all sweet cereals, but they aren’t very expensive at walmart and are “mainstream” foods that are easily found.

bette hagman has some gluten free cookbooks and most of the recipes can substitute whatever you need, rather than milk or soy. sometimes a celiac will be lactose intolerant early on, but after they have been on the diet for awhile, the lactose intolerance goes away.

alot of people on celiac.com have used enterolab. it can still test for celiac even if someone has been gluten free for a while—–other tests will be inaccurate if you are not eating gluten. if your son does better off of gluten—then keep him off of it. there are a number of people on celiac.com that have never been officially diagnosed with celiac by tests—-they just had such a positive dietary response, that they stay gluten free. feel free to e-mail me if you want to talk more. kevheiner@msn.com i will be gone for a few days probably—-one of my kids has been in the hospital since wed. kevin is with her right now to give me a break, but i go back tomorrow.

[Anonymous]

amy—-i have 3 children with celiac disease. as young as henry is, the tests for celiac will most likely not be accurate. biopsies of the stomach will definitely NOT show celiac—it is an autoimmune response that happens in the small intestine. there are 2 blood tests that are pretty specific for celiac. two of my girls with celiac have had biopsies, one was iffy, the other was negative—-but they still have celiac. the intestinal damage can be patchy, so it can be missed when biopsies are done—-the scope can only get in about 6 feet.

there IS a non-celiac gluten intolerance—-the enterolab tests will test for intolerances. you can also have gene testing done through them that will tell you if you have the celiac gene and if you have the gluten intolerance gene.

one of my children is IgA deficient, which sometimes can go along with celiac disease—-we had to do gene testing to see if he had celiac. he has the gene, but no active disease right now—he will be tested yearly.

two of my celiac kids also have reflux—-i think the 3rd one does, now, also—-she is complaining alot about her throat burning.

i assume you probably know, but just in case—-oats are not safe for people with gluten problems—-too much cross contamination.

[Anonymous]

Here is a link to a recent discussion about wheat allergies. Most of the things that we discussed are actually gluten free, so it might help.

https://www.infantreflux.org/forum/search.asp?KW=wheat&SM =1&SI=TC&FM=0&OB=1

It was very challenging at first, but we have found some snacks that Kaelyn can eat and that make eating on the go a lot easier. She can tolerate soy, so I’m not sure if any of these have soy. Sorry. She likes the Gerber dried sweet corn. It’s a lot easier to dissolve than regular dried fruit. Before we discovered her apple allergy, she also loved the dried apples.

Barbara’s Puffins and EnviroKids Gorilla Munch cereal are two of Kaelyn’s favorite snacks. Erewhon makes a gluten free brown rice crisp cereal that she likes too. We use it with Fleishmans unsalted margarine sticks (dairy and soy free) and marshmallows to make rice krispy treats for her. Vann’s makes waflles that are dairy and gluten free. There is a toasted oats cereal (can’t remember the brand) that is also gluten and dairy free. The Toasted Oats actually is the one that dissolves the easiest.

We have found several varieties of rice crackers that she can eat. Unfortunately, she hasn’t liked any of them, so I can’t remember their names.

You said that neocate didn’t work, so that sounds like it limits your formula choices. Some babies with intolerances do well with nutramigen and alimentum, but they are still milk-based formulas, so they can still cause problems. Kaelyn was on nutramigen until she was 14 months old, but looking back, we realize that it was part of her problem. It’s such a tough call.

Have you tried rice milk? I don’t think it has the calcium or protein of cow or soy milk, but it’s better than nothing.

We use blackstrap molasses to add iron and calcium to Kaelyn’s diet. She eats oatmeal all of the time, so we add it to that. I’ve also added it to her pancake batter (Bob’s Red Mill is gluten free. You could make it with rice milk.) and lots of other foods.

Also, if he can tolerate orange juice, you can get calcium enriched orange juice. We were doing that until we realized that she has an intolerance issue with oranges.

If you research celiac and gluten websites, there is some argument about oats and gluten, but most of the recent stuff seems to think that there isn’t gluten in oats. So, that’s the theory that we’ve gone with. They do say to be careful because lots of oat products can have contamination problems with wheat. We decided to take our chances and let her have oat products and she’s been fine.

[Anonymous]

Thanks girls for the info.

I have done hours of research since I’ve posted. And I mean hours! It’s a full time job trying to help my son.

In response… Neocate, I’m reluctant to go this route. Henry never did good on any formulas at all. I couldn’t BF for various reasons. He does much better without the formulas. We did try Neocate with no success. Celiac disease… Henry had an upper endoscopy done for reflux etc and they did biopsy his stomach. Negative for celiac. From what I’ve read, you can be gluten sensitive without it turning into celiac. I think “that” is my family history. No celiac ever found in any of us, but all these digestive issues all these years. Brother, sisters, mom, and nieces! That’s a lot of history if you ask me. None of us have celiac. The GI specialist disagrees with me and says he CAN NOT be gluten sensitive without being celiac positive. They did offer to do more biopsies on into his lower bowel. I don’t want to put him through any more testing. So this website… http://www.enterolab.com talks about a simple stool testing for this kind of thing. The doc that came up with this test is gluten sensitive but celiac negative himself as well as his daughter. Through this test it shows how positively you react to certain foods without having allergies or serious diseases. You react enough to cause other issues in your body though. Nothing has ever made more sense to me in all my life, let alone in all that we’ve been through with Henry. Why test? I’m thinking why go gluten free if we don’t have to. It’s sooo extreme. Also, I’m expecting another baby in August and may have the same issues to deal with. If I could go gluten free and breastfeed this time around, it would alleviate a lot of issues. We wouldn’t have to go through 14 mths of trial and error with this next one.

So what does Henry eat right now? He’s milk and soy free. Doing much better. We have to watch acidy things due to reflux. He eats oatmeal for breakfast. Drinks a lot of water with a little white grape juice added. Veggies cooked and blended. Meats cooked and chopped fine. Applesauce. Raw, soft fruits. And for snacks he gets cheerios, toast, bread, waffles, crackers, and fruit puffs. The breakfast and snacks are gluten things. I cut them out even for one day and he sleeps straight through the night. On the go, is the toughest part. fruit isn’t an on the go snack. dried fruit is too hard for him. Breakfast is a tough one as well. Eggs is about all I can come up with. He loves them, but not every day for sure. He only likes them about twice a week. Not very convienent as well.

Sarah, so you yourself are soy,milk and gluten intolerant? What’s your diet like? Did you ever try to BF? I’m in contact with a lady in Colorado for this kind of diet. She is helping me trememdously! If you need any help with it let me know. I’d be happy to pass on the emails. They are long and packed with advice. She helped me realize that the reflux doesn’t cause the food issues, but the food issues cause the reflux in our case. I’m thinking if I can get ahold of his food issues, I’ll make the reflux and other issues better.

I also went to the health food store today. It did help and I at least got some gluten-soy-dairy free snacks for Henry. Very few though. I’ll have to go to the other store about an hour away. It’ll be a project for me. I also bought a calcium supplement for him. That was what I was really worried about.

Keep any info coming. I appriciate it a lot! I’m just trying to make my son feel better and get to the bottom of things.

Thanks again girls

Amy

[Anonymous]

Hi Amy & Welcome

If your son is intolerant to milk and soy then unless you are breastfeeding, then you need to give him a formula like Nutramigen or Alimentum and if he cant tolerate those then Neocate or Elecare. If he is not having any dairy then you need to give him formula as his milk drink, it will supply all his calcium requirements.

With intolerances most babies will grow out of them by 2 or 3, so hang in there. In the meantime, I would search for a good allergist and keep trying until you find one that will help you. The other thing you might consider is a ped dietitian that specialises in allergies to help with his diet. There are plenty of non dairy and soy alternatives, you just need to be very careful with reading labels and checking ingredients.

You say that he is gluten intolerant – has he been tested for celiac disease? Are there any grains that he can tolerate? Does he tolerate fruits and vegetables?

We have been through all the things you have mentioned but we have it under control now with the right medication, and very careful diet. It does get better.

Perhaps post the location where you live and maybe some other mothers on the board can recommend doctors in your area.

Glad you found us, hope we can help you.

[Anonymous]

I know that testing for celiac at this age is not so accurate and
really her chances of EOS are slim to none I guess I am just really
scared and the thought of surgery on her has me looking for any
excuse I can to delay the inevitable… :(<!–
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[Anonymous]

FTT is one of the reasons to do a fundo—–and 18.3% reflux is pretty high. i have heard that they consider surgery somewhere after 10–13%. (can’t remember the numbers for sure) you could insist on an endo before agreeing to surgery (can’t believe they haven’t done one yet!!). you probably already know that testing a child for celiac that young is not going to be very accurate. if you think that eos could be the problem, then definitely insist on the scope first.

[Anonymous]

Sarah has not had a scope and I think that is where most of my concerns
come in. She has had an Upper GI, Gastric Emptying study
and PH study. There really are only 2 other reasons (EOS or
Celiac) that I can think of that could cause the symptoms that she has
but both would need to be diagnosed by scoping and biopsying. I
just feel like we haven’t ruled everything out because of not having
this one last test done and if her problems are just reflux and DGE
then surgery is a must, but if it is caused by something else then it
won’t be helped by surgery and we will have done it for no
reason… 🙁

Pyloroplasty is where they cut into they pyloric muscle so the stomach can empty correctly… <!–
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[Anonymous]

rebecca, my daughter has had a fundoplication/hiatal hernia repair. she was failure to thrive and anemic, she was refluxing almost 25% of the time and her esophagus was ulcerated. she had her fundo right before she turned 10 months old. sylvia’s longest reflux episode was 44 min. long while she was sleeping. what was sarah’s percentage of reflux? i think with the pyloroplasty she will be more at risk for dumping syndrome—-but i also think it is a temporary condition that gets better with time. sylvia did not have a g-tube placed because she was a good eater——-before her surgery. we had trouble getting her to eat after her surgery—she would often chew food and then spit it out. she continued to be FTT until she was about 2, but it was not related to her fundo, she had a few other problems that took us a little while to figure out. she has had no complications from her fundo, and she can burp. she does not throw up, though. she is now 2 1/2 and doing wonderfully. i would do the fundo again in a heartbeat. she had obstructive sleep apnea and an inguinal hernia. her hernia was repaired and her tonsils and adenoids removed in october and that is when she turned the corner.

i have 3 children with celiac and one more that we know has the gene, but no active disease at this time. my twins with celiac (almost 15) both also have reflux. i think my 11 year old celiac also has reflux—she has been complaining alot about stuff coming up her throat and her throat burning. we see the ped gi again on june 1—so we will have to discuss her reflux. one of my twins is really underweight and losing instead of gaining—if she loses too much we may be doing a g-tube on her.

if you want to talk more, you can e-mail me any time.

kevheiner@msn.com

[Anonymous]

Your probably right. At the time of the test I was only gluten free for a few days. I was just sort of toying with the idea, but I immediatly started to feel better on day #2 and thought I better test asap. So if it comes up inconclusive I will try it again. Thank you for the info. on testing Christine. And thanks for the advice Kim. Its nice to know that there are others out there to keep me grounded at times when my brain doesn’t seem to be functioning right . There is so much info now available on the web, it helps to narrow things down a bit. God knows how much info and learning this site has helped me aquire that the docs. never told me about.

[Anonymous]

i don’t think pretzels a couple of hours before would be enough to produce antibodies—but i’m not sure that being off gluten for only a week prior to testing would make everything go back to normal, either.

[Anonymous]

Let us know how the tests go. I’m working on convincing dh to go get it done. He has IBS type symptoms, but the more I’ve read about celiac, the more convinced I am that he fits the profile. Fortunately, most of Kaelyn’s symptoms fall into the wheat allergy category, not celiac, so I’m holding onto my hopes that she’ll grow out of her allergies. It certainly has made mealtimes much more challenging!

[Anonymous]

Thankyou for the advice, looks like you have had to do your research too! I had the test, but I ate some pretzels a couple hours before so that something would turn up. Crazy how great I feel after being off gluten for a week! Starving, but feeling great! (I’m mspi allergic to apples,and now wheat- like your little dd)