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StephanieL

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StephanieL last won the day on December 29 2015

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  1. We can't do the corn/quinoa pasta.  I do try to limit it but they get rice in some form almost at every meal. Bread, pancakes, cereal, pasta or actual rice for a side dish. 

     

    They are kids. Giving them a salad would result in them not eating it. We do potatoes as side dishes but that doesn't help with breakfast and lunch. 


  2. We did the biopsy after a VERY hight ttg and it did in fact come back negative.  We were give 2 options (go gluten-free and watch the blood work or scope every 6 months indefinitely) by the top Celiac disease Dr. in the US.  

     

    Fast forward 5 1/2 years and I wish we did have more clear/concert proof because of other inconsistent blood work and issues.  We went to actually see this top Dr. who wanted to have our kid go back on gluten and scope.  We were given that advice a year ago and every once in a while we'll talk about it and doing it but then we have had 3 other GI Dr's say there is nothing else it could be. 

     

    I don't know if that's helpful or not but I just wanted to let you know our experience and let you know even when it seems clear cut, sometimes its not :(  

    Hugs. FWIW my kid was 3 1/2 when he had his scope and it was 100000x harder on me and Dad!  He has NO recollection of it at all!


  3. Sorry. I thought you were wondering if the rice products even had enough arsenic to be worrisome. As this isn't really about Celiac disease, but about arsenic poisioning, I'll put this in Related Disorders.

    I have not seen any recommendations that Celiacs be tested for arsenic poisioning. If you have, could you link us to them, please? I might have missed that.

     

    Yeah, sorry about that. I wasn't very clear.  I haven't been sleeping much lately so I'm a bit off!

     

     

    I haven't see testing recommended, no.  I am concerned though especially since I have kids who are all gluten-free. I worry that we are robbing Peter to pay Paul so to speak with fixing the Celiac disease and then putting them at risk of other health related issues associate with high levels of arsenic.


  4. ;)  I only know these things because I worked in one for many years!  Our brand of generic synthroid is $12/bottle of 100 pills.  Kiddo takes 1/2 a pill a day so it lasts forever! lol

     

     

    I would LOVE to try the natural thyroid stuff (his goiter has gotten bigger in the last year :( )I just am hesitant to use it on a kid :(


  5. I have mentioned this before, but with cheaper meds it may be useful to buy a full, unopened bottle.  At the pharmacy they use the same trays for counting all the meds they do. Many times pills get broken/crushed in the shipping process and leave pill dust all over including the counting trays.  So even if a med is safe, depending on a persons sensitivity, they could be x-coned on the sorting tray. On something expensive, ask them to clean the tray and spatula and get them from a new unopened bottle.


  6. I have a meeting set with the director and nurse on Tuesday.  I will have to get my ducks in a row and figure out how they can make things safer for my son.  Who knows maybe if I'm lucky someone will have done some research and actually understand what celiac is and have some suggestions.  

     

    They will not have. I would be 99.9% they know little to nothing about Celiac nor how it would be something they need to help you manage in a school environment.

     

    Some things you may or many not have thought that YOU will need to teach them is:

     

    1) Ply-doh-  This is a huge no no for kids with Celiac.  Some places will bring in gluten-free playdoh AND tools.  Some will just remove it from the class room totally.  Some wll ask you to provide your kid with tools and playdoh.  It's up to you how to deal with it.

     

    2) Food boxes used for play. Again, you have to decide what you think about it if they have them in the school.

     

    3) Box of safe snacks for those last minutes birthday parties and celebrations

     

    4)  BYOF- If you are going to bring in all your kiddos food or what. 

     

    Those would be the first things I would want them to learn about.  It's a baby step kind of thing and if the teacher is being reasonable then that's a great start!


  7. I think it's admirable to want to send something similar but that's not something that'll be realistic for the long haul.  It just isn't.  And ANY school you send your kid to will have "buyers and packers" so there's a difference there.  It's not a huge deal really.  And kids don't seem to get board (as easily) with things like adults do.  One thing I remember reading is that if you look at a persons grocery bills over months that 80-90% of what is on are consistent.  Even with variety, we like what we like and make what we know how to make and seem to stick with that.

     

    I am all for being "THAT" parent when I NEED to be.  There is a time and a place and that differs for each person in each situation.  We have not chosen to fight with the school about providing my kid with a school lunch.  Is he "entitled" to one? Yes.  Do I think they could manage a dairy, egg, peanut, tree nut, banana and gluten free lunch?  Nope. Not a chance I believe they could manage!  

     

    I wouldn't worry too much about the director.  They are typically "lets not rock the boat kind of people.  Most don't WANT to know more.  I would focus on those who were directly responsible for your kiddo.  Perhaps a one page bullet point "Main things to avoid" for the director, but if they give you the impression that they aren't interested, they won't read much more.  I would also caution leaving any food there for daily use unless it's individually wrapped/labeled.  The though of a butter tub in the community fridge would cause me heart palpitations all day long!  lol


  8. Most people I know do not trust a school cafeteria to provide safe meals/snacks for kids.  

     

    I would not go over anyones head unless/until you are forced to.  If you have a good working relationship with the teacher, keep that up.  Decide if them providing meals is something you really want to push for.  Keep in mind if your child will continue in that district and you start now going over heads- there is the potential to be seen as a "problem parent" (good or bad- it's the reality of things).  

     

    Also, I am not surprised that they haven't mentioned a 504.  They aren't super common esp. for food related issues.


  9. -tTG IgA and tTG IgG

    -DGP IgA and DGP IgG

    -EMA IgA

    -total serum IgA and IgG (control test)

    -AGA IGA and AGA IgG - older and less reliable tests largely replace by the DGP tests

    -endoscopic biopsy - make sure at least 6 samples are taken

     

     

    Just as a note, NONE of these can be done on your child now because of being gluten free for a few months because the results will not be accurate. The only test you could run now (which isn't in any way diagnostic) is the genetic test.  Being as you (Mom) are positive, chances of kid being positive for the GENETICS is high so it just means there is the genetic predisposition to having it.


  10. I posted this in another section but got no responses despite many views so I'm posting it here.

     

    I suspect my 15 month old has Celiac like I do. After months of barely growing, falling off the chart in weight, sandy stools, frequent BM, and rectal bleeding, I decided to put him on a trial gluten free diet. I saw an improvement in his symptoms in just a few days and over time, he started putting on a little weight so I've kept him gluten free (he's been gluten-free for a few months now). The thing is, he's still small for his age. Everyone thinks he's only 8 or 9 months old and are even surprised he can walk. He weighs 19 pounds (6th percentile) and is 29 inches tall (2nd percentile). I'm even still breastfeeding him in hopes it will help his growth. I know children tend to recover more quickly than adults but how long can I reasonably expect him to "catch up" in growth after going gluten free?

     

     

     

    *note: yes I do plan on speaking with his pediatrician about this at his appointment in a couple of weeks. I just wanted to hear what others with experience thought about it.  :)

     

     

     

    I would seriously consider putting the child back on gluten for testing.  Unless you have a Dr. who is willing to dx based on genetics, your history and the childs history, getting an accurate diagnosis.  As you know this is a life long condition to manage and for things like schooling and hospitalizations, you need to know what you're dealing with.    I would try and get to the Dr. asap and see if it's worth trying to even do the blood work now.  How many months gluten-free has the kiddo been?


  11. I would ask the new Dr. why they are qualified to deny Dr. #1's diagnosis.  Then I would go find a different Dr. 

     

    Seriously, if that is what it does to your kid and your bloodwork was highly positive and she's done well after being taken off of gluten the only other thing I would think they may want is the genetic testing.  There is talk of the "4 of 5 rule" by Dr. Fassano, though his office doesn't feel that criteria is as good for kids it would give you more ammunition with the new Dr.  The 5 criteria are:   "be defined as the "4 out of 5" rule: the diagnosis of celiac disease is confirmed if at least 4 of the following 5 criteria are satisfied: typical symptoms of celiac disease; positivity of serum celiac disease immunoglobulin, A class autoantibodies at high titer; human leukocyte antigen (HLA)-DQ2 or DQ8 genotypes; celiac enteropathy at the small bowel biopsy; and response to the gluten-free diet."


  12. Celiac is pretty cut and dry.  You remove gluten and your remove the disease process. Unless you are having ongoing issues, if it's a new dx, I wouldn't bother with more.  Perhaps a nutritionist but even that is pretty hit or miss if there is a good one.  We've never found one.

     

    As for what to do about testing younger kids, they say when you start them on gluten doesn't push them to have it or not.  We have chosen to have a gluten-free home for the most part (my oldest is the one dx).  We gave my middle gluten to be sure she didn't have a problem then had her consume it daily at preschool once she started.  We tested her then after she was on it for several months.  Now that I pack all food and snacks, she only gets gluten when we are out. The baby still hasn't had gluten and we will likely follow the same protocol for him.  

     

    As for your second kiddo having positive bloodwork, when we had that happen we were given the option to scope every 6 months or have him go gluten-free and test his blood to see if the levels came down.  Again, each family has to do what they need but that's what we were told by A#1 top Celiac guy in the US.   

     

    Also, if you want them to consider what to do for the older two, I would think you would need 2 apps for them. You could ask about the baby perhaps but if you have blood work and biopsies to go over then you would need appts for the older two.


  13. I believe a gluten allergy is Celiac,where a gluten sensitivity is not.This is what I belive is wrong with me,and will be tested again next month.

     

     

    No.   There is no such thing as an gluten allergy.  There is the autoimmune condition of Celiac disease.  It is NOT an allergy.  And allergy is an immediate (within 2 hours of ingestion) condition causing things like vomiting, hives, diarrhea, breathing issues, constricting of airways.  As I said, there are many people here who do not test positive for Celiac but for whom the gluten free diet alleviates many of the issues they have.  Don't lose hope.  You aren't crazy!  Hang in there!

     

     

    Shialyn,  I would try and stay on gluten until you see the GI Dr.  They are the better ones to determine if you need any more testing and that testing is best done when you are consuming gluten to be sure all the necessary blood work has been taken when on the gluten containing diet.  


  14. There are things it could be that aren't an allergy or Celiac disease.  There is something called "Non Celiac gluten sensitivity" that many people believe is the issue for themselves.  It is when you have issues caused by gluten containing foods but the Celiac bloodwork and endoscopy say it isn't caused by the autoimmune disease.  

     

    There are also people allergic to wheat (or rye or barley) but those aren't general symptoms, they are very pronounced and would give Dr's a pretty cut and dry diagnosis.  From what you said in your other thread, it isn't an actual IgE mediated allergy either.