Search Results for 'celiac'

[Anonymous]

At night she takes her Prilosec withe her formula, she fights me with taking the 1 or 2 ounces of formula that I use to make sure she gets her medicine. After that she eats the rest of her bottle just fine until it is time to burp. Then she just stiffens up, and starts throwing herself around. She screams, tosses, turns, arching her back. She does this anywhere from 10 minutes to a couple of hours. She never gets into a deep sleep, the slightest little noise wakes her up instantly.

She has had this problem right after she was released from the hospital for failure to thrive at 6 weeks old. She was doing fine until she had this virus that landed her back into the hospital again.

She has always rolled her eyes when you give her a bottle or her pacifier. Her eyes just roll into the back of her head, sometimes jumping. Most of th time she sleeps with her eyelids open, and you can see the whites of her little eyes.

We have an appt with her discharge doctor on Monday, hopefully she can light a fire under the peds gi to get an appt faster than May 21st.

Thanks
Julie

[hellbennt]

you Pm’d me about Sandifer’s…so are you asking about the arching of the back? it’s hard to tell- she could be arching to get away from the bottle? is this it? or is it arching and turning red, arching & turning her head all the way to one side?

[Anonymous]

i am unsure of the connection but it’s the OVERGROWTH of oxalates that becomes a problem. something to do with yeast overgrowth, distribution via leaky gut/IBS disorders that cause the crystals to tear the intestinal tract…as you can see i am not sure… but the symptoms of oxalate overproduction are present in my child and so i am searching for possible causation and correlating factors…

i don’t know if either of you have tried knox nutra joint with gelatine, glucosamine and chondrointin but it has helped me in ways i cannot express with that same kind of arthitic aching and problems with my joints. i received the suggestion from a pain management physician anesthesiologist a few years back and now my whole family takes it. i have a friend with RA/possibly lupus who also takes it for relief as well. it does take the max 4 capsule dose a few weeks to begin to show it’s work. best of luck to both of you.

[Anonymous]

i’m not totally gluten free. we cook all of our meals gluten free, but i do eat other gluten-containing foods. our ped gi told me once that going gluten free might help my fibro.

i’d love to see the links if you find them.

[Anonymous]

you would have to have been eating gluten for awhile for a celiac blood test to be postitive.

i think that testing sounds like a good idea.

[Anonymous]

Christine – just curious, are you gluten free yourself? I know of some people with fibromyalgia who do quite well after adopting a completely gluten and casein free diet. I’ll try to find some info on that and post links here if I can.

For the most part, I am gluten and casein free along with my son Ben (makes cooking a lot easier) and I find my knees and hips ache horribly if I have a couple gluten and/or casein infractions. I’ve suspected for awhile now that I have some sort of autoimmune, inflammatory related illness (arthritis? or fibromyalgia?) and I know that I really feel worse after eating gluten or casein.

MFPIx22008-04-03 23:52:39

[Anonymous]

Her celiac tests came back negative. I have a question about that when they did the test does she have to have eaten something with gluten in it?

She had only had formula to drink, and a small amount of applesauce to take her lactobacillus when they did the testing. Formula with her rice is all she had eaten in a couple of days before that. (Which she really hadn’t kept that down).

I really don’t know what is up with her. I took her off of milk products, and anything that claimed to have milk in it. Her bottom cleared up within 24 hours. Her diarrhea has stopped, now she is constipated. She has pooped out little round pellets today, and screams in pain when she tries to go. She has been really (extremely) cranky, since stopping milk products. I did give her part of a roll tonight, and so far she hasn’t had any break outs or diarrhea.

She is just not comfortable, she crawls around and plays for a few minutes. Then she lays and whimpers for awhile, and crawls back to me crying. Off and on all day she has been like this.

I spoke with one of the docs from the discharge hospital, and he said it is probably lactose intolerance. I made an appointment with the main discharge doc for Monday, she will make sure she gets her in to the Ped GI immediately. She told me last week if my doc couldn’t do it, to let her know. She used to work at the childrens hospital he works at. She will admit her, and transfer her if necessary. Hopefully not, as Monday will be my second sons 3rd b-day. Camryn’s is the 14th.

She sometimes acts as though she is refluxing by arching her back, and not taking her bottle for very long. Most of the time though she acts like she is starving. When you give her the bottle she drinks it (8 full oz with 2 scoops rice), and wants more. She starts throwing herself around backwards, forwards, and sideways whimpering, and crying.

She has been like this since she got sick. I am not sure if her Prilosec just isn’t working, (the pharmacy has never had any problems with making it before) or if something else is going on. Even Zantac isn’t helping her much. The only thing I can really do to ease her discomfort is give her Tylenol, or Benadryl.

I think they need to do an endoscopy to find out what is going on.

Thank you for your support.

[Anonymous]

Thanks for the info! From looking at your signature, you’ve got a LOT of experience with celiacs!

I had just been reading about the ingredients in Splenda and the article I read noted that maltodextrin can be derived from several different sources (rice, corn, potato) in the United States. From what I gathered, in Europe, the maltodextrin is derived from wheat, and has trace amounts of gluten. There have been a few cases in the US of celiacs having reactions to the maltodextrin in foods, b/c the foods were manufactured in the UK. My ds is not a celiac, so it’s not like life or death for him, but the article I posted about autism and the link to diet REALLY has me intrigued.

The xylitol sounds like a better choice than the Splenda, to me. Especially if it’s good for the chompers!

kdub2008-04-03 18:07:09

[Anonymous]

i’m a little confused about what you are asking. oxalates are a natural forming substance, so i’m not sure why you are wondering if damage to the gut would result in oxalate formation.

i have never heard of any connection between celiac and oxalates—but i have heard they can cause gout.

i scanned through your links and was interested in seeing that they felt there was a connection with oxalates and fibromyalgia. i’m getting ready to start trying some “alternative” things to see if i can feel better—-but only if i can find someone to work with me who is not too “way out there”. if they told my i had to drop my pharmaceuticals immediately to try their naturals, i would turn around and walk away. i’d like to make this a gradual process if i can find something that would actually help.

[Anonymous]

as long as the mcdonalds has a dedicated frier for their fries, they are safe. whatever process was used when wheat was involved as part of the flavoring totally eliminated the gluten.

gluten is in wheat, rye, barley, barley malt, and most commercial oats because the are too easily cross-contaminated.. we can buy guaranteed gluten free oats—-but they are not cheap.

i imagine that the test they ran was an endomesial test—-hopefully they ordered a total IgA serum test, or the other tests could possibly be worthless. one of my kids is IgA deficient, so his original testing was worthless to the doctor. we had to have some specialized testing done oh him that used IgG levels, instead.

kevieb2008-04-03 01:41:16

[Anonymous]

does any one know of a connection between undiagnosed celiac and damage to the gut resulting in oxalate formation and damage?

http://www.greatplainslaboratory.com/oxalates/oxal-test.pdf

http://www.developmentalspectrums.com/low_oxalate/a_compilation_of_advice_for_using_the_low_oxalate_diet_for_autism.html

http://patienteducation.upmc.com/Pdf/LowOxalateDiet.pdf

http://www.whfoods.com/genpage.php?tname=george&dbid=48

http://www.vulvarpainfoundation.org/vpfabout.htm

[Anonymous]

Camryn is almost 1 yr. her b-day is in 2 weeks. I have been using Nystatin ointment on her bottom three times a day, as well as covering her little bottom with Desitin. The lactobacillus is “Culturelle”.

On the french fries thing, I just went to McDonalds website to find ingredients in the food. Here is a copy/paste of what they (mcdonalds) say is in their fries:
French Fries

French Fries:

Potatoes, vegetable oil (partially hydrogenated soybean oil, natural
beef flavor (wheat and milk derivatives)*, citric acid (preservative),
dextrose, sodium acid pyrophosphate (maintain color),
dimethylpolysiloxane (antifoaming agent)), salt. Prepared in vegetable
oil ((may contain one of the following: Canola oil, corn oil, soybean
oil, hydrogenated soybean oil, partially hydrogenated soybean oil,
partially hydrogenated corn oil with TBHQ and citric acid added to
preserve freshness), dimethylpolysiloxane added as an antifoaming
agent). *CONTAINS: WHEAT AND MILK (Natural beef flavor contains
hydrolyzed wheat and hydrolyzed milk as starting ingredients.)

I am not sure about what all is gluten or not. Just trying to figure out what is going on.

I noticed when they came in to draw the blood for the Celiac tests, that there were two tests ordered. I believe one was an antibody test, and the other was a long “E” word.

Her primary doc said today that he thinks she is having a post infectious diarrhea. He thinks her tummy just isn’t accepting anything right now. I am wondering if he is right, because she ate cantaloupe at supper last night, and this morning she had it in her diaper (undigested). He said that her body just isn’t wanting to absorb much of anything. The soonest they could get her Peds GI appt was 5/21. That is too long for her to deal with this.

I think for now we are going to let her tummy calm down for a couple of days then try a few things. Doc said to try her with some soy ice cream or make her pancakes from scratch with using her formula instead of milk.

I just am not sure what she will eat. She loves bread, potatoes(anyway you fix them), pancakes, ice cream, and most of all cheese. I hope this is just her little body needing some healing time.

Thanks you for your responses and your help.

[Anonymous]

mcdonald’s fries do Not contain gluten. there was a big uproar about this about a year ago and a family actually brought a lawsuit against Mcd’s blaming their daughter’s seizures etc., on the fact that Mcd’s had said their fries were gluten free—–the fries were tested—and it turns out that Mcd’s was right—-there is no gluten in their fries.

do you know what celiac blood test they ran on your daughter? there are some tests that are not as accurate as others. also, celiac blood testing on children under 3 just is not very accurate because sometimes when they are that young they just do not produce the Ttg antibodies yet.

if they were running the best test, they should have run a total Iga serum test and a Ttg Iga test.

sometimes those stomach viruses can just reak havoc on little ones digestive tracts and it can take a little while to get them well. a stomach virus can also make them temporarily lactose intolerant. did they suggest that you keep her on clear liquids for a while to let her intestines heal? apple juice, jello, pop, that nasty electrolyte stuff, gatorade, etc. it might be a good idea to give that a try.

i agree with sheri about the yeast. if it were me, and her bottom was that red and blistery—-i would ask for oral nystatin. two of my children have had esophageal thrush. docs will try to tell you that it is rare, but our pede gi said it is not as rare as docs think it is. you would probably also want a cream to help heal her little bum quickly.

[Anonymous]

Sorry of all you’ve been through with your daughter. I hope you find some answers soon. Just wondering how old Camryn is, and what foods she eats (mainly)? It could be worthwhile cutting out milk, soy and gluten to see if she improves. Then reintroducing some foods, (example gluten) after a couple weeks to see if she tolerates it. That might be the only way to really pinpoint what she may be reacting to.

What is the brand of lactobacillus? Some have dairy in them and perhaps that is why it makes her cranky.

The red blisters in her diaper rash makes me suspect yeast might be a cause. I would try using some antifungal cream like clotrimazole (the brand is Lotrimin in the US, or Canesten in Canada). It is commonly used for athlete’s foot, but is also very effective in soothing and healing diaper rash caused by yeast/fungus. This is very common after a period of diarrhea, as the normal healthy yeast-bacteria balance is thrown off and yeast can overgrow. You can apply it 3 times a day, after diaper changes.

My son and I aren’t Celiac, but we do follow a gluten-free diet (as well and dairy and soy free) so if you have any questions about that feel free to ask. There is another member here named Christine (posts as kevieb) who has a couple of children with Celiac disease. Hopefully she sees your post here and can offer some advice and answer questions on that topic.

[Anonymous]

Hey all,
We had been doing really well until about 3 weeks ago. Camryn got a case of the stomach flu (pukes & poops) and ended up in the hospital for a few days. They couldn’t find anything wrong with her, and she had stopped vomitting so the doctor set her for discharge time for the late afternoon. I ran out of her normal rice that I thicken her formula with, and had to use the hospitals. I didn’t know it was Gerber, she doesn’t tolerate Gerber rice at all. It always makes her very cranky, and impossible to console. They took her off IV fluids around noon. She started getting really cranky very shortly after that. She had one bottle with two scoops of it. Anyway right when we were about to leave the hospital, she vomited all over the place. We brushed it off on the rice cereal she had just eaten, and they sent her home. (Admitted on Thursday afternoon, and discharged Saturday at 5:30pm.)
Well we live 45 minutes away from her doctor, and that hospital. By the time we got home she had two diarrhea diapers. Her bottom started getting red around 3pm or 4pm on Saturday(right before dismissal). We got home changed her again, gave her a soak in the tub. Applied Vasoline to her bottom. She ate her night bottle with her normal routine. She immediately vomitted it back up. We went through much screaming, vomitting, and diarrhea diaper changing until 6 am on Sunday. We took her to the closet hospital, they didn’t admit pediatrics. They said she was already dry(dehydrated), so they stuck her three times for an IV, and transferred her via Ambulance to one of the major Metro hospitals. That hospital ran all kinds of blood tests, cultures on blood, stool, and urine. No answer as to what it is. By this time she had been vomiting, and diarrhea for a week, had been in two hospitals that can’t find anything wrong.
She started tolerating food again after about 12 hours of IV fluids, her bottom started healing up. Diarrhea continued within 30 minutes of eating again. Vomiting has never returned.

They ran one last blood test before she left the hospital. They ran a Celiac disease test. I have read that usually the blood test is inconclusive.
They discharged her with her Prilosec, and they put her on Zantac, and Lactobacillus. They lactobacillus makes her really cranky.

The discharge doctor wants her to see a Peds GI, but the one here is full. She said if her primary care doctor calls and demands her to be seen then they will put her in. If he won’t call, then she told me to bring her back, and she will transfer her to that hospital where he has to see her.

Now she is home, her stool switches back and forth from diarrhea to firm normal stool. Now that she has started back on table food, her bottom breaks out. We have not been able to tell if it is milk, gluten or soy allergies. The only symptom she has is lots (LOTS) of gas, diarrhea, and her bottom gets beat read with little blisters. No blood or mucous in her stools. We thought we would just give her stuff that didn’t have milk. Well who knew that McDonalds french fries contain: wheat, milk and soy. So now we are back to where we began. What causes the breakouts?

We go back to the doctor tomorrow morning. I am just not sure where to go.

Does anyone have any ideas about Celiac? Could this be what is wrong with her?
She is on Nutrimagen formula. When she was 6weeks to about 6 months old she was on Enfamil premature double scoop formula (normal formula no protein breakdown) She didn’t breakout from that.

So basically I am clueless of how to help her.

Thanks for listening,
Julie