Search Results for 'celiac'

[Anonymous]

Hi Brandy,

Did they find eosinophils during the biopsy? A lot of kids being treated for EE or Eosinophilic (ee-oh-sin-oh-fill-ick) Gastrointestinal Disorders (EGID) are put on Singulair or other allergy meds, to heal digestive problems. There is a good site here for more info, if it’s applicable: http://www.apfed.org/

Hope that’s helpful,

[Anonymous]

We used probiotics and aloe juice to help heal dd. Trust your gut with this one, it is difficult to diagnose and intolerence that can be irritating her. I have multiple protein intolerences that took me years to figure out. Food avoidence is the key. I hope that you do get some answers, just so you have the satisfaction of knowing something instead of playing the guessing game. Best of luck cutting out the gluten. I love rice noodles and there are alot of gluten free products at the health food store.

[Anonymous]

i don’t know of anything else that can damage the small intestine. i know that emma is too young for the blood tests to be accurate, though. sylvia is almost 3, and our ped gi says she is still too young for the tests to be accurate. the biopsy is supposed to be the “gold standard” to diagnose celiac. from all the info i have read, celiac can be difficult to diagnose sometimes.

i’ve never heard of the allergy meds to heal the digestive tract, theory—– will they do a follow up endo with biopsies to see if it is really working for her?

if she doesn’t improve with the allergy meds, you can always give a gluten free diet a try for several months and see if she has any improvement. i have heard of some celiac patients that have had negative blood work but had positive biopsies.

i wish i could tell you something more that would be helpful.

[Anonymous]

Hi Brandy,
Papaya enzymes are supposedly really good for the GI tract. You can get those in the health food store. Our OT says she knows a baby on those. I’ve heard you can even use papaya nectar (like Kearns I guess) which contains a lot of enzymes.

[Anonymous]

Brandy,

That’s very interesting about the allergy medication healing the intestinal tract. I hope it works for her. Maybe your experience will help other babies one day.

Sorry, I don’t have any advice or insight…just wanted to wish you and Emma my best.

[Anonymous]

Well after Emma’s biopsy showed damage to her small bowel they took 3 vials of blood and 4 vials of stool and ran a bunch of tests including Ttg and everything came back negative. They checked for anemia and we are safe on that as well (I was anemic most of my childhood). They checked for malabsorbtion and it was negative which makes no sense to me b/c she has fatty stools (they float). So basically we are all stumped. So instead of completely taking out gluten right now (since she is already dairy and soy free) they started her on another allergy med, singular, on top of the periactin. They use allergy meds to heal the GI tract from food allergies/intolerances. When I tell people this they think I am crazy because she does not have outdoor/environmental allergies and I have not heard about this on the internet. However they have done studies at this hospital (One of the biggest childrens hospital in the state of Missouri) that shows that these meds do help and they have hundreds of kids on them with great success, meaning there GI tract has healed. She said she will have the biopsy reviewed again by 2 more docs to see what there suggestion is.

I guess the only thing I don’t understand is wouldn’t the GI tract heal even faster with a gluten free diet, what else could possible leave that much damage when I have only trialed dairy twice?

Also is anyone on digestive enzymes?? I want to continue with her probiotic and include these but I have no idea which ones to use!! Thanks in advance

What do you guys think???????

[Anonymous]

Well, I would sure like to know what is contributing to the anemia. We saw another doctor in the same clinic yesterday with my daughter and he saw David’s chart (it was tucked in my daughters) and he did a double take at the iron numbers and said “WOW! that’s really low!” He was immediately concerned to make sure steps were being taken to help. His approach sounded about the same though….formula, solid food and iron suppliment.

I made an appointment with Christine’s ped. GI in Boise. Interestingly enough, they scheduled David Oct. 11th. When I made his next appointment at Primary Children’s a week or two ago, they couldn’t get me in until late November and that was with the nurse practitioner. Dr. Thompson’s office also said that if they received his record’s soon enough that they could probably get him in sooner so I’m working on getting those to them quickly.

We had blood drawn for the celiacs test yesterday and should get results by the end of the week and we see a pediatric allergiest tomorrow. I am feeling more peaceful having made these steps. We’ll see how it all comes out.

Thanks for all your input!

Kara

[Anonymous]

i think that even on gluten, kayleigh is probably still too young for the celiac tests to be accurate. sylvia will be 3 in a few weeks and just yesterday i was talking to the doc about a concern i had about her that might be indicative of celiac. he said we could test her TTg levels, but mentioned that the tests aren’t real accurate at a young age.

celiac can cause dental enamel problems. i happen to see apicture that showed what it could look like—-and it looked EXACTLY like the marks on sylvia’s front teeth. he did tell me, though, that her teeth could have the marks because she had so much trouble growing when she was younger.

i hope kayleigh has the kind of allergy she can outgrow. celiac has not been as difficult as i thought it would be—–but i’d still rather my girls didn’t have it!!!!!!!!!!!

[Anonymous]

When Kayleigh has gluten she has more severe reflux, black stools and complains of her tummy hurting as well as increased absence seizures. She was going to have a trial run of gluten early this summer but since we had an accidental ingestion and she didn’t do well her ped said 6 more months before we try again. So I may use her upcoming EEG w/gluten as a trial? Her ped and I are still hoping it’s an outgrowing type of allergy! Of course he told me she would outgrow reflux too! LOL then as she grew older he told me about 5% never do!

Testing for celiac is still on my mind I just am unsure of how much gluten she would have to have and for how long to make it a “good” test. Also her ped is sending us for more detailed allergy testing this Nov. since we can’t seem to make it off Zyrtec for a day without troubles.

It must have been so difficult for your children to go GF after having gluten for so long. I still count myself lucky we went Gf early on. Kayleigh really knows no different.

I’m glad Tianna is doing well I’ll keep her in our prayers as I know it is a long road ahead for her and your family.

[Anonymous]

lynn—tianna is doing pretty well.

what kind of a reaction does your daughter get to gluten? will you be testing her for celiac when she gets older—–not that a diagnosis of celiac would make that much difference in how you feed her. since she has a gluten allergy, is it possible that she could outgrow that like some babies outgrow other allergies?

[Anonymous]

lynn, one of my celiac daughters recently spent 2 1/2 months in seattle children’s hospital——and came home with her TTg levels elevated to over 100—-(were they giving gluten to her intravenously??!!) (she was 10 when she went in) i called and talked to them to try and figure out how this could have happened. because of this incident, the dietician held a meeting with the kitchen staff and another person told me it was an eye opener to her about the issue of cross-contamination that she never knew was a problem—-action was taken to make sure this wouldn’t happen to someone else.

try not to stay angry for too long, as it isn’t productive and be greatful that it wasn’t a dangerous med. meet with them and go over the precautions that they should be taking and the things they need to be doing so that this won’t happen to your child, or to anyone elses.

also, i wouldn’t give them the chance to make another mistake—-i’d only send the exact amount she needs from now on.

[Anonymous]

kara, send me an e-mail and i will get the info to you.

kevheiner@msn.com

just reading back over your posts this is what i gather—-sounds to me like your little one has had some significant weight loss if he has gone from the 50% to the 5%. it could just be genetics, but it looks fairly suspicious with all of his other problems.

your son might get more relief with prevacid—–alot of people have had to “move on” to prevacid from prilosec and zegerid is the same med as prilosec.

the only personal experience i have had with primary children’s is that they would not even open their books to make me an appt. when we first contacted them. i was put on a list and told our appt. would likely be at the end of may when they did make it——–2 years later i am still waiting for them to call with our appt.—–it’s a good thing i didn’t wait for them because sylvia was in a pretty bad way.

a friend of mine took her son to primary children’s and felt like they were pretty impersonal and when her son had a scope she felt like it was more assembly line style. she later took her son to the doc we see in boise and was thrilled with him. she eventually took her son back east to a specialized clinic and he was diagnosed with FPIES. i have heard the “impersonal” comment about primary children’s several times from other peoples experiences—-however, i have also heard that they are very good.

another thing i really like about the doc in boise is that he is really good about the fact that we live so far away and is very willing to do what we can by phone. he also has phone hours every morning, so if you call and leave a message, he will call you back himself—-you don’t have to send messages back and forth through the nurse.

when we first suspected celiac in one of the girls,(an allergist had run the screen) i called him and even though he had not seen her before, because he already knew us, he scheduled her endoscopy the next week and met her right before he did the endo—-he also let me stay in and watch the endo.—-but i think that was because she was a little older. he did not scope my 11 year old—-i guess when 3 kids in one family have positive blood work for celiac, it becomes a no brainer, so he skipped the scope on her.

he gave us a folder with celiac info in it and a list of other parents of celiac children. it lists the parent name and phone number, what town they live in, the ages of their celiac child/children and if the child is male or female. there is also a celiac kids support group that has been started up by some of the parents. we haven’t been to an activity yet, but we plan to some time.

if you suspect celiac, don’t take him off gluten before testing for it.

[Anonymous]

Thanks I knew you would have good info on this. My dr is great at some things and quite lacking in others. I guess that’s why there are specialists out there.

How do you know if you are a carrier? I had a full celiac panel done and I remember seeing TTg and some results but she told me that I was within normal limits.

Kayleigh had a RAST done in 1/05 and it came up highly allergic to wheat so we went wheat free and nothing changed so her ped said go GF and within a few weeks we saw huge improvement and it’s just gotten better. I never knew that about seizures and celiac maybe that’s why her nuero asked for her to have some gluten before the EEG. Thanks for responding so quick.

mom_ona_mission2006-9-15 0:50:20

[Anonymous]

Hi Christine,

Thanks for writing! We are in Blackfoot. I would love it if you would get me a card or even just his information would be great. Have you had any experience, comparison wise, between any of the ped. GI’s at primary Children’s and Dr. Thompson? Just curious, how did he approach the celiacs? Besides the celiacs, have you had any allergy issues and how has he handled them?

Thanks!

Kara

[Anonymous]

neither kevin nor i have celiac disease, but one or both of us carries the gene. about 40% of the general population has the celiac gene, but all of them don’t have celiac disease. something has to activate the disease. i agree with you about your doc—she doesn’t seem to be real knowledgeable about celiac. the newest test is the TTg test. i’m not sure how long she would need to be back on gluten to get an accurate test.

we know that one of our other children carries the gene, but does not have any active disease right now.

there are alot of people that feel that a positive response to a gluten free diet is enough of an answere for them and they don’t look for any further diagnosis. some people want a definite diagnosis.

what type of allergy testing did you have done when you discovered her gluten allergy? by the way—seizures sometimes are a symptom of celiac disease.