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Nebraskamommy

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About Nebraskamommy

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  1. has anyone seen a geneticist to confirm a diagnosis for their child? We have seen 4 drs. 2 said our test results say Celiacs and 2 drs said they do not show Celiacs. we never did a biopsy and he has been gluten-free for 2 yrs now. He does have one of the Celiac genes, however as i understand so does 40% of the population. since other automoimmune conditions can exsist where there is one, i'm considering seeing a geneticist to see what other genes he has and then weighing weather or not to put him back on gluten to get a biopsy done. my fear is starting another autoimmune condition if we reintroduce gluten again.
  2. My son just started playing soccer and of course, treats and drinks are brought after each game. i offered to bring treats and drinks for every game but other parents are offering to bring them too. All the parents know that my son cannot have gluten. How does everyone else handle this? should i reach out to the parents who have offered to bring treats and say that i will bring a gluten-free alternative as i know that gluten-free options are not always easy to come by. i should mention that some of the other items that i have seen other teams get are Oreos, Donuts, Goldfish. The couple times i have brought treats they have been Kind bars, cheese sticks and fruit snacks. Not the healthist but at least my son doesn't feel excluded knowing he can dig right in with what everyone else is having. i don't want to offend the other parents by offering to bring something gluten-free for him. oh and i should mentioned that the drinks that have been given out are usually juice boxes or Gatorade. Can you say sugar and dye!!
  3. I just realized that our daycare, since they participate in the federal lunch program, must provide gluten-free meals for my son. I am sooooo happy! I thought he was destined to eat cold lunch from a bag for the rest of his daycare and school days! Not to mention the amount of time and money this will save me. So my question is, for those of you who's kids eat the school provided lunch, have you had any major issues and what are you doing to keep your kids safe? The food program supervisor has Celiacs, so i was asking her about CC and she felt pretty confident that the risk is low. She said they have to follow proper steps because of all the kids with life threatening allergies, like eggs and milk.
  4. I would find a holestic dr to run additional testing, including looking for vitamin and mineral defincies. My 3 year old was dianosed by a holestic dr in Jan and we have since seen 2 Ped GI drs, and the holestic dr knew more about Celiac then the GI drs did. Just because her tests came back negative doesn't mean she's not sensitive to gluten. Poor girl. DO NOT go Gluten Free until you've had your blood tests and a scope. I imagine you will feel a whole lot better after stopping the gluten, and therefore if you stop the gluten before finishing the testing you won't want to go back on gluten to get the tests done.
  5. I know how frustrating it can be to not have a 100% clear cut diagnosis. Let your mommy instinct be your guide. If you know she can't handle gluten, then switch to a gluten-free diet and keep track of her symptoms. You don't need a dr to tell you to change her diet. My son was just diagnosed in January and we went to 3 drs. Two said yes Celicas and one said no not Celiacs. We never ended up doing the scope, but his improvment on the diet alone has been tremendous. Many drs still don't know much about Celiacs and getting a diagnois is not always black and white. Try the diet and if her symptoms improve you know gluen is a problem, whether it be Celiacs or gluten sensitivity.
  6. I've done a little Google searching on this topic and i've found that other food allergies can also cause damaged villi. Is is possible that Celiac is on the rise because Drs are using the scope as the gold standard to diagnose but their damange is actually caused by corn, dairy or soy? Thoughts?
  7. we did the ELISA test. I was told it tests for intolerances not true allergies.
  8. my son had celiac panel and got a weak positive on the ttg igg. TTg iga <2 ( range 0-3 negative, 4-10 weak positive, >10 positive) TTg igg 8 (range 0-5 negative, 6-9 weak positive, > 9 positive) immunoglobulin a, an, serum is 43 ( range 44-189) however he also did a food allergy igg test and it came back high for the following. yogurt, wheat, milk, gluten, egg white, caesin, beef, pinto beans, whey, barley, kidney bean, cheese, gliadian, cheese, goat cheese, brewers yeast and egg yolk. also tested moderate to 7 other foods. doesnt this show that the gut is leaky? couldn't it just be that his gut is leaky to a lot of foods, and therefore its not necessarily celiacs? upon removal of wheat and dairy his constipation went away (he'd been suffering from it for 2 years). my question is if a certain % of the general population has high igg levels to wheat, how do u know if you're in that % v. celiacs? we are not going to biopsy. thanks
  9. Is it true that part of the general population has high igg levels to wheat/gluten but they are not celiac nor have any gluten sensitivities? If the only thing high on your celiac panel is igg ( ema negative, tTg iga normal) would that be cause for concern alone?
  10. This dr even went so far as to say on the recap sheet that he gave us that we can reintroduce gluten, dairy and eggs, after I told him my son is was doing better being off those things. I feel like he sort of wrote us off the moment we got there and mentioned that we had went to a holestic dr for the blood allgery tests. He was very taken back when I said we had seens another Ped GI and he recommened a scope.
  11. My thoughts exactly Lisa. I felt like I knew more just from reading this board then he knew and he's supposedley a specialst. I feel bad for the kids he sees whose parents take his word as the truth. When we walked in his office and showed him the IGG food allergy tests that our holestic dr ran he basically said "how do i say this nicely.....these tests are not accurate and no one in the medical profession relies on IGG results. Alternative drs are the only ones who use these."
  12. I talked to the Dr at Childrens over lunch and he said they consider kids IGA deficient if they have total IGA levels less then 10, since my son's level was just over 40 he said he's not IGA def and therefore said the IGA results are accurate. He said IGG levels are not reliable, ever. He said they are crap. He said given the negative results of the IGA labs he doesn't think my son needs his DGP drawn. This Dr works at the Digestive Institute at Children's Hospital so i really want to trust/believe him, but i think we will go back on a gluten-free diet, see what happens in 6 months and then slowly start reintroducting gluten, milk and eggs, one at a time.
  13. Tests were done in Dec when he was on a full gluten diet. He was gluten, dariy and egg free Jan 3-Jan 23 because we didn't think we were going to do scope. He's now back on a little gluten, maybe a few crackers a day or a slice of bread, but still off the dairy and eggs. His behavior and moods were better from Jan 3-23, however i don't know if that is from the gluten or dairy or a combo. I have a call into the Dr's office to get the DGP tests run, either way we will remove gluten again. I was hoping to get 100% confirmation for him so that he doesnt' have to go back on gluten in the future if/when he decides he wants to know for sure if he's Celiac.
  14. Thank you. That is a good plan. I just want to know 100% if it's celiacs or just a gluten intolerance, as if Celiacs i plan to also get the rest of the family tested.
  15. My son has suffered from constipation for 2 years now. He's 3. We did allergy testing which came back high for wheat, gluten, dairy, eggs, beans. Also did celiac panel that came back with these results: TTg iga <2 ( range 0-3 negative, 4-10 weak positive, >10 positive) TTg igg 8 (range 0-5 negative, 6-9 weak positive, > 9 positive) immunoglobulin a, an, serum is 43 ( range 44-189) Our first Ped GI said 95% sure celiacs and do scope. The second Ped GI we saw said not Celiacs and he wouldn't scope. Since we got these results in early Jan we have since eliminated milk and eggs from his diet and the constipation has went away. We also eliminated gluten for 3 weeks (didn't think we we going to scope) and his moods seemed to improved. We have since added gluten back in because we really want the scope to 100% confirm it's Celiacs and not just a gluten sensitivity. So my question for other folks in similar situations are: I've read that milk intolerance can also damage the villi. Say we go forward with the scope and it shows villi damage, how can the dr tell it's from gluten and not milk? It appears he has an IGA defiency so the blood tests are producing a false negative. However he was only one point outside the range for immunoglobulin a, an, serum so perhaps lab error? The dr did not order a DGP test, but i'm wondering if we shouldn't ask for that before we scope. Thanks in advance for any advice you have.