Search Results for 'celiac'

[Anonymous]

I think in general rice or oatmeal doesnt matter unless you have a family history of food issues, my first baby, who now has celiac/gluten intolerant, reacted badly to oatmeal, (which contains gluten) and so with my baby girl when we start solids we are avoiding oatmeal, and I may just avoid rice also (just because of the gas/constipation problem), and start with a veggie…who knows…Ive got some time as she is just 5 months today, and finally eating somewhat “normally” now that we have neocate and a good med dosing…(for now…)

[Anonymous]

Well, only a few more days of the total restricted diet, and I’m glad but also a little nervous. I can’t figure out what to add back in first and what signs I should be looking for since he already has good and bad days. Are there other foods that take a long time to build up in the system like milk protein? Or can I expect to see some sort of reaction within a few days? Ahh… again, so many questions. Anyway, I think oats are next for me. I would also love to get another protein source added in soon. I’m about to turn into a turkey myself.

Laura, I don’t know if celiac is in play or not. Are there symptoms of this that I can look for? I hope not because I would really love to start giving him oatmeal soon mixed with his morning meds. as we are still having problems getting them into him.

[hellbennt]

not sure about the mylanta problem…is there another brand of Tums that doesn’t have the soy/

Give yourself a big pat on the back for being almost half way there on the diet!!! I did the diet; it’s hard but it was so very worth it for me.

I didnt see any improvements on the diet itself. but, when I added things back I saw ‘acid’ attacks 3 to 4 hours later. then I knew. for instance tomato sauce. after the 2 weeks I added foods back in the WRONG way, but hey this was 3yrs ago and I didn’t know what I was doing. I didn’t know proteins built up in the system! so I drank a glass of milk & sat back waiting for all hell to break loose. when it didn’t, I deemed milk to be safe. then I went for chicken parmesian. ahhh. YIKES. Jonah screamed bloody murder for hours after that one. oops. So I figured it was the tomato (didn’t occur to me that maybe it was the cheese or the pasta, which it turned out it wasn’t). Tried tomato sauce once more soon after. Ok, I learned my lesson!!! and so on…

now, in retrospect, if jonah was actually mspi, (I really didn’t think he was, but I was desperate) then that glass of milk might not have had an immediate effect after all- I would have to wait 2 weeks of dairy to see if things got worse…I only say all this so that at the end of 2 weeks of the elimination diet you can figure out your ‘game plan’ of how & what to add back in…

if your gut feeling is it’s the rice, try cutting it out for the next week & see if anything improves?

and maybe adding in barley? or oats? now, these have gluten & should be avoided if you think celiac is at play…or just cut out rice this next week & gorge on potatoes () & see if the no rice does anything…

I wish I could help you more…

[Anonymous]

Wow Tracy…what a lot you’ve been through!!! It’s nice to read such a positive post from you and hear that you are feeling recovered (cured?) and that Eli is doing so well. My best friend’s husband went through surgery for adenocarcenoma of the appendix last March (removed appendix, spleen, gallbladder, most his colon, 1/3 small intestine, 1/2 stomach, part of pancreas, half of one lung, and part of diaphragm). I went through a lot of this with them so I know how frightening and trying of times that can be, and I’m sorry to hear that you had to go through a similar situation. You must be feeling pretty well with running a preschool now though!!

We should start a new thread for catch up of veterans’ stories. I only pop on here every now and then (more now that I’ve been diagnosed with celiac) and the last few times a couple of “old” familiar faces have appeared. It was so great to read your thorough update it would be fun to have some from others.

I hope that you and Eli (and all your family) continue to be healthy, happy, and fully of spirit!!!

[Anonymous]

My ds was tested for celiac and the blood test came back negative. However, he has severe reflux, is on meds, and is at the least gluten intolerant. He is also dairy/soy/beef intolerant. He has failed food tests recently. When he eats gluten products he has horrible time sleeping and gets a little pustule/pimple like things on his legs. He screamed through every night until age 17 mos when we took gluten out of his diet. Things steadily improved from there-on. Just thought I would share. It’s an interesting thing to consider. I haven’t yet even thought about what to do with another child if/when we have another with food introduction…

[Anonymous]

Hi both Christines – I don’t know if you remember me from the “old” days when Sylvia, Palmer, and James were babies, but I still pop in here now and then and came across this thread…coincidently, I’ve just been tested for celiac as well (bloodwork only – no results yet) – was discussing some bloating/constipation issues with my ob while following up on an ovarian cyst…she asked about food intolerances and I mentioned how oddly good I felt (and how much weight I lost!) while James was a baby and I was off so many things, including wheat…will be interested to see if I’ll be joining the gluten-free club as well!

Sorry to hear about Sylvia’s dental problems – keep us posted – and take care –

[Anonymous]

Christine — I actually just got a new email since my email at work will be gone at the end of December. christine _ nemcik @ yahoo . com (without the spaces) I’d love to keep in touch about gluten free ideas. The town we’re moving to in Indiana has a co-op health food store and members get pretty good deals, so hopefully that will help some with the cost of things. Our financial situation is going to change drastically once we move, so I guess it’s not a great time to have to go gluten free. Oh well, we’ll be much closer to family so I guess it’s a trade-off.

Funny about the celiac you know who is overweight. I actually know someone who had all kinds of health problems (thyroid, constipation, overweight, etc.) before she was received a positive biopsy diagnosis for celiac. After going gluten free her thyroid disease improved, and she LOST weight. I think what doctors are starting to realize is that there really aren’t “standard” symptoms anymore.

[Anonymous]

christine—-there are some gluten free chicken nuggets—i think the brand might be “ian’s”—-they also have gluten free fish sticks. my girls have tried the fishsticks, but not the nuggets. i think someone even makes a gluten free corn dog.

kinnikinnick makes some really good products. they are a company out of canada. i have been able to order some things from them that i have not attempted to make–sweet rolls, donuts, bagels. they have a sandwich bread that is good, too.

tinkyada past is really good—i don’t think anyone would be able to tell the difference if you served it to them, celiac or not.

i think it is a lot easier to be diagnosed with this now, rather than 20 years ago. since there is so much more awareness of it, there are getting to be more and more products available—-and since they now realize that it is not the rare condition that they used to think, doctors are starting to look for it.

i’ve heard a lot of celiacs mention constipation rather than diarrhea, and the only celiac that i knew before my girls were diagnosed is overweight. so much for the “standard” symptoms!

can you post your e-mail for me? i’m not sure if i have it still since we have changed servers.

[Anonymous]

Hi Christine — it’s great to be “talking” with you again, even if it came about because of problems. I am actually happy to have an answer to so many of my health issues, even if the answer has to be celiac. My mom is actually relieved as well, since all through the years different doctors & dentists have tried to somehow place the blame on her for my teeth enamel problems. The enamel started flaking off my milk teeth right around 2 years old (according to my mom), and my permanent teeth grew in with most of the enamel missing and just got worse over the years. My mom had doctors even accuse her of lying about not taking tetracycline while pregnant.

I’m actually still in a little bit of denial I think, and haven’t yet cut out gluten…even though I know I need to. I’m hopeful that once I’m off gluten for awhile that maybe my allergies will start to get better — right now I’m on 3 different allergy medications and they still aren’t completely under control. We’re actually moving in a little over a month (from NC to Indiana), and once we’re in our new place we’re planning on setting up a gluten free home.

We’re not planning on getting Palmer tested at the moment. Todd was really great about keeping a wheat-free household when I was off wheat before and is just planning for having a gluten-free home now. Palmer’s doctor said that in his experience kids this young often don’t show up on bloodtests as celiac, even when they get a positive biopsy. We may get the gene test for him after we move. He’ll be staying home with me from the beginning of the year until he starts preschool in August, so I’ll be able to keep him gluten-free and to gauge the results. Hopefully once his body has cleared out the gluten he’ll stop having as many problems with allergies, sinus infections (always one of my biggest food-allergy/intollerance indicators, so maybe it is in him too), constipation, and maybe even reflux. I know that it’s more common to have diarrhea with celiac, but chronic constipation can also be a symptom so maybe it is with him.

He’s never had growth issues (he’s 40″ tall and weighs almost 34 pounds at less than 3 years), so we never thought about celiac with him. His doctor likes the idea of doing the gluten free diet with him, though, since he’s seen such an increased number of hereditary celiac cases in the past few years.

I’d love any information you want to share with me about gluten-free products, recipes, oats, etc. you’ve found. I don’t have a problem with giving up rye and barley, but the oats will be more of an issue. Palmer and I both love oatmeal, and it will be a difficult thing to give up. You haven’t happened to have found any gluten-free chicken nuggets have you? That’s the only meat Palmer will eat (still relies on beans as his main protein source) and it will be hard to have him give that up.

By the way, my GI initially told me I had tested negative for celiac. I had him fax me a copy of the lab results and had them evaluated further and was told that I had a “low negative” but definitely fell within the celiac range. I think that my GI may have just been covering himself for not having done a small intestine biopsy when he did my endoscopy (just did biopsies of the esophagus). Celiac wasn’t on our radar at the time of my endoscopy until my new PCP started to put the pieces of the puzzle together, so I’m guessing he didn’t even think about it.

Palmersmom2006-11-30 11:6:46

[Anonymous]

christine—i’m sorry you have celiac, too! however, at least you found an answer that will hopefully help your health problems—-and you already know how to do the no wheat thing, now you just have to add barley, rye and oats to the list. if you like oats, there are several sources for guaranteed gluten free oats. we have bought these—kind of pricey—but it is so nice to be able to use oats again.

i saw a picture one day of the dental enamel defects that celiac can cause—and it looked exactly like the front of sylvia’s teeth—so i keep worrying that she might have celiac, but so far she has been tested twice and both times it came back negative. hopefully we will have the results of our gene testing pretty soon and i will know who is at risk for celiac and will need continued testing.

so far, ian is the only (non-celiac) child that we know has the gene. he has had specialized testing done and it appears he does not have celiac, but they still consider the tests inconclusive on him. he has always been extremely small for his age and when he was little he was really anemic for no apparent reason. his diapers never seemed “right” as a baby, he talked really late and had some odd behaviors—we thought he might be autistic. since he is IgA deficient, he will always be more difficult to test—–and there is no way in **** he would ever agree to try gluten free without a positive diagnosis.

are you going to have palmer tested? my dad is allergic to wheat and i’ve told him he really ought to be tested for celiac, but so far he has not done it.

[Anonymous]

Christine,

Has Sylvia been tested for celiac? I cannot remember if she was one of your children who was positive for it. I assume from all the research you’ve done that you know that celiac is one of the most common contributors to teeth enamel problems? Funny that I was only tested for wheat allergies years ago and went off only wheat. If they had known about the enamel thing then maybe I would have been tested for celiac earlier. I was just tested a few weeks ago because of a bunch of new health problems going on the past couple of years (including severe gerd and gallbladder problems — interestingly all since I went back to eating wheat) and turns out I have celiac. Anyway, I had to have a TON of dental work done starting at around 2 years old and just in the past year have had to have all of my teeth porcelain crowned (or I would have lost them all). So, with celiac running in your family this may be an explanation for Sylvia’s teeth problems.

Sorry to hear about so many things going on with members of your family!! I hope that things settle down a bit before Christmas and you are able to have some wonderful relaxing holiday cheer!

[Anonymous]

I hope that everyone is doing well!! I know that a few of you follow Samantha’s carepage, but I will post an update for those of you who remember me … It has been a while since I have checked in. Samantha is doing well. Her cancer is completely gone and, God willing, will never be back. She is getting G-CSF 3 times a week to boost her immune system. It really seems to be helping her, she is not constantly sick. She is still on Neocate 1+ and probably will be for a while. We give her 40 oz a day through the tube (she refuses to drink it) Any food that she eats is a bonus. The only problem is that when she eats large amounts of food (not neocate) she has really bad diarrhea. We are working with the GI to try and figure that out. He thinks that she may have dumping syndrome so we have to limit the amount of food that she has at one time. It seems to be helping, but he is looking into other causes also. She still has bowel movements 5-6 times a day everyday, diarrhea or not. So he wants to look into that. He did some more labs on her, including a celiac panel. We will see how that turns out. We are very excited, she is up to 25 pounds now!!! She has been 25 lbs before but it has been about 4 months since she has been there.

Lance has been having numerous problems with constipation and severe abdominal pain. Last week we did an endoscopy and colonoscopy on him and it turns out that he still has pretty significant reflux. He had coffee ground blood in his stomach and his whole stomach and lower 1/3 of his esophagus was red and inflamed. He started on prevacid and he is going to continue his Miralax. We also have Levsin and Bentyl for if his stomach is giving him pains. His biopsies were normal, so we are going to treat it like Irritable Bowel Syndrome and significant reflux. We are already seeing some improvement on the prevacid, his appetite has really increased. Hopefully this will help. The bad thing is we really did not see any signs of reflux in him. We thought that it was all from the constipation, I feel really bad about that.

Well I guess that is all for now. Take care!!!

Janice2006-11-21 15:34:36

[Anonymous]

I would say they’re looking for abnormalities in the digestive track. Hyatial hernia, pyloric stenosis and such. They also may take biopsies to see if there are allergy issues or celiac disease.

I agree about trying the upped dose first and if there’s still issues then do the procedure.

Have you thought about going ahead and scheduling just to satisfy them and then cancelling in a week if things look good. I know, it’s sneaky. And you risk the doc not renewing your perscription, but you could just say that she was doing sooo wonderful, you didn’t feel the need for further testing.

[Anonymous]

Thanks for the replies.

Yeah my sons reaction is horrid as well thats why Im wondering when to intro gluten, but since she is seeming to have MSPI issues we are just going to wait until at least a year…most of my food in my house is GF now, and I have plenty of kid friendly stuff once shes on table foods, so I figure in that way it will be easier…

I make my own babyfood so CC isnt an issue with us…Noah never had jarred food in his life..his first issues were with oatmeal at 5.5 months and then barley cereal….then we kinda knew cuz of his reaction…bad diarhhea and he got the DH rash…and the whole bloated belly, screaming in pain thing…not fun

its not fair there are so many issues to look out for at once

cheri…poor little guy to be that inflamed so young! Good thing you caught it young though

THanks

[Anonymous]

Aidan has reflux but no food issues (other than with acidic ones, obviously) or milk issues. He eats whatever and hasn’t ever had a reaction to anything.But I know he is very lucky.