mairin

My mother in law brought over a chocolate cake where she used Cadbury cocoa. I can't find out online if this is gluten-free or not. Mother-in-law annoyed at me that I won't let my celiac kids eat it.

Anyone know if it is or not?

Thanks

I took my son off gluten exactly 6 months ago. His sister is diagnosed via biopsy, plus two positive blood tests, for Celiac. Both my son and daughter are tiny. My DD has been gluten-free for 1 year since her diagnosis, and has gained less than 4 lbs. She is still at 3%ile for weight, however, has "shot up" to 25%ile for height. My middle DD is average size and weight. Before going gluten-free, my son was 36 lbs. 6 months later, he is only 37 lb. He will be 6 mid-May, so that puts him less than the 3%ile for weight. He has grown in height but I have to wait to go to the Dr to properly measure his height. He has tested negative twice on two blood tests, second one included ensuring he was not IGA deficient.

We took my son off gluten because of his short stature/small size, because his sister is a Celiac, and because he as showing various signs: soft stools, lack of focus in school, tics, stinky farts, "allergy eyes" were the main ones. He does not have behavior issues like his sister. Most of these signs are gone with being gluten-free, but he still does fool around in Kindergarten, but he is a boy!

Today we put him back on gluten mostly because he has not put on weight nor does it seem he has grown in height significantly. It is also difficult to know if he is paying more attention and is more focused because he is gluten-free or because he is now familiar with the school routine and expectations. He is bright and has always had incredible energy. He is a star athlete, both before and after going gluten-free.

I am keeping a food diary, with possible reactions. Today, he peed his pants on his way back from skiing. He will often say he has to pee when we are in the car but he has always been able to "hold it". Today he announced he needed to pee, and couldn't wait. Not sure if that was a reaction to the french fries and chicken fingers or not. But it is recorded.

I just wish my little boy would grow. He is so small. His new pants I bought him were size 3X and 4. He is skin and bones. I'll be watching for the extended tummy and he is under orders not to flush the toilet so I can check his poops. They've been such nice poops for the last 6 months!

My questions:

How much gluten does he need ingest each day? We are a mostly gluten-free house (except for toast and pasta) so it is a bit of work to ensure he does get gluten.

If I want to again have his blood tested, how long does he need to be on gluten?

Also re negative blood tests, can one be "barely negative", ie close to positive? I asked for the specific results from my son's blood tests, but was told negative is negative, no actual "scores". What is strange is my DD just got tested and she showed a "weak positive" for her TTG, according to the pedi GI who states that the test is too sensitive. If there is a weak positive, shouldn't there be a weak negative? it is not like you are pregnant or not pregnant, but there are varying degrees of results are there not, for the blood tests?

Note, I will take him off gluten if any of his previous signs reappear. We are just not sure that we have seen enough changes to continue gluten-free. We might have been scared into going gluten-free because of our daughter's slow and insidious descent into this disease.

Thanks and sorry for rambling.

Thanks everyone for the support and relies.

I honestly know that my DD would never purposefully cheat, eating something she knows contains gluten because she does hate the way she acts on gluten. When she was off gluten her first two weeks, she stated that she was "happier" and she was. She feels so much better and happier off gluten. However, she is somewhat naive, as am I, about CC and about flavorings, spices, purchasing gluten-free baking, and I've never even considered dyes. I'm now paying much more attention to flavorings and spices and won't allow her anything unless we check it out.

Our house is mostly gluten-free. I have toast in the am, with a different toaster and butter. My husband will make gluten pasta, which I really don't understand as corn pasta tastes the same. No gluten baking in my house ever. But I'm sure the toast crumbs are deadly in hindsight and will scour the kitchen and be much more vigilant about crumbs. I baked up a storm today, so no more goodies from "mixed" bakeries when we are out.

I really like the idea of a calming bath, and just suggested that to her even though her behavior was great today. I'm going to buy her special "freaking out" salts and encourage her to take a bath regardless of the time of the glutening.

I haven't ever investigated other foods and will follow up on suggestions.

And the most important thing I learned today, is that my daughter is not the only one. Why oh why do the medical experts not investigate and research behavior?? My pedi GI still believes that my DD's behavior is all in my head, that she is just having a "little tantrum", not the off-the-wall irrational behavior that comes with gluten.

I also need to change my mind set about these episodes. She can't control them, much like if she had an accident in her panties from gluten. Not her faulty, we just need to learn how best to deal with the behavior.

Again thanks for the support. I think that everyone I know is sick of hearing me speak about my DD's behavior when on gluten, it is great to have this board for solidarity.

My 10 year old, diagnosed 1 year ago as celiac, only has behavioral symptoms from gluten. Before diagnosis she was off-the-wall irrational. We were so thankful to find out that she was a celiac and her behavior improved dramatically almost immediately. However, there appears to be a slow decline in her behavior in the last few weeks. Does one become more sensitive to gluten the longer off of it?

We have made every effort to be 100% gluten-free, but there have been mistakes and possibly CC as we are not a totally gluten-free house. Despite our efforts, she showed a very slight positive on her TTG when tested a couple of weeks ago. We met with the GI and he said that he felt that the new cheaper test that they are using in Calgary is too sensitive as he is seeing lots of weak positives.

She experiences NO other symptoms. Her behavior is awful, but then again, kids do need to have bad days, but hers are over the top. I feel really badly when I get angry re her behavior as if it is a gluten-ing, she has no control over it.

Today she had a gluten-free rice brownie from a natural grocery store, and her behavior tonight is terrible. She pushes and pushes and pushes the limit and I try and try and try to remain calm, but I eventually lose it. She opened all of the cupboards in the kitchen and dumped everything on the floor -- cleaners, food, dishes, etc. and then challenged me to do anything about it. I had it, screamed at her to get out of my face and sent her to bed. She is now screaming up in her room, keeping her siblings awake. This all happened because the PJs she wanted were wet in the washer.

How can I tell the difference between a glutening and bad behavior? How can I stop her from pushing and pushing -- she keeps doing it despite warnings that she has gone too far. She can't control herself. I hate to say this, but I wish she did get a stomach ache rather than smashing her fist into the wall, and screaming for 2-3 hours.

I know the answer is a 100% gluten-free house, no treats outside of the house. I also don't want to make her feel even worse that her sister, Dad and myself can't have gluten (her little brother is on a gluten-free diet but we are about to challenge that because he has not grown in the 6 months on the diet). She feels really guilty that we can't be like a normal family and eat dinner out, or order in a pizza and a movie.

I guess I just want to verify that one does become more sensitive to gluten the longer on a gluten-free diet. Is that correct?

Thanks and I just had to write -- a bit cathartic I guess as no one I know understands what we go through when my DD has had gluten. She is now quiet and hopefully in bed.

My 10 YEAR old daughter loves Baby Mum Mum. They are by HotKids and are rice rusks. The company now offers organic Baby Mum Mums.

They are: gluten free, egg free, nut free, not artificial colors or flavours, no preservatives, and cholesterol free. Basically taste free, but my kid loves them.

They come individually wrapped so are great for lunch snacks. My 10 year old has no issues with the good-natured teasing from her friends.

The company now offers Toddler Mum Mums (which my non-celiac kid prefers), but my celiac kid prefers Baby Mum Mums. I get them at Walmart/Safeway/organic food stores in Canada but am presuming you can get them in the States.

As per previous posts, rusks and teething biscuits can be choking hazards. My kids never had any such biscuits until they were over 2.

Here is a list of ingredients, from McD's in Canada:

Open Original Shared Link

Of course, it is prudent to check if the oil for fries/hash browns is dedicated.

We have not eaten at McD's since my daughter was diagnosed, we go to Wendy's instead as they provide a gluten-free menu (on their website) and we always ask about the dedicated fryer.

My 9-year-old daughter has/had behaviorial symptoms, but also dark circles under her eyes and veyr smelly farts. No other "usual" symptoms. We had her blood tested in July 2006 to rule out possible physiological concerns as we were at our wits end with her. She was irrational, mean, never sleeping, explosive, etc. Her blood was randomly tested for celiac and which was positive. Another blood test, positive. Biopsy, very high level of damage.

She had loose stools as a toddler, but all that resolved and her only symptom was behavioral. After 2 weeks of being gluten-free she told a fellow celiac teacher that she "was much happier".

Of course, she still has typical almost 10-year-old behaviors, but when she has had gluten we can tell the difference. She is not rational, cannot calm down, is very easy to get upset, hurts her siblings, etc when she ingests gluten.

I truly wish that there was more clinical research on this area, rather than the parental accounts (which are very helpful as a fellow parent), but I would like the medical establishment to realize that celiac is much more than diarrhea. It is also difficult to pin down if she is just acting up, or if she ingested gluten.

We have several Christmas functions to attend where we are required to bring baking, and a couple involve actually selling the baking goods. Of course, what we bring has to be gluten-free as I won't use regular flour in my house.

Further, my son in kindergarten must bring in a recipe to share with the class -- they are making a Christmas Cookie Recipe book.

So, I am searching for a simple, tried and true, that kids will love, Christmas cookie recipe. I'm hoping that someone has one to share.

We are still new to Celiac (March 2007) so haven't had to worry about Christmas baking before.

Many thanks

My daughter is in Grade 4, diagnosed in March of Grade 3. She is very confident and deals well with any "weird looks" or comments. She feels so much better gluten-free that she wouldn't consider changing her diet because of peer pressure.

I doubt this will be the same with my son who is now also gluten-free, and in Kindergarten right now, so I'm sure I'll be dealing with some of the issues you are with friends and classmates.

So, I would personally talk to the parents. Do you see any moms at the school who could become your allies and voice their concerns as well? Can you get them on your side to suggest to the teacher that everyone brings their own food. Are there other "allergies" in the class?

Our school suggests only healthy snacks for the Kindregarten kids, and those parents who send garbage have a note sent home requesting specific kinds of foods (sometimes parents do not know any better). My daughter in Grade 2 has 2 kids in her class with severe peanut allergies. A note was sent home indicating specifically (brand names, etc) what snacks were appropriate to share with the class.

At this point in the school year, the teacher has modeled good food choices. Ask the teacher to work with the class on coming up with a list of "approved" food choices for snack, send it home, and the kids should all be interested in meeting the "approved" list with their home snack. The class can discuss the various food groups, see who has what, why that person has it, etc. The teacher can use the snack time as a teachable moment about healthy food choices AND being tolerant of others dietary restrictions.

The above is actually my Grade 4's home assignment for this evening. Healthy food choices is something that is discussed in our school beginning with Kindergarten.

And, as others have said, providing a snack that everyone would die for makes being gluten-free even better. My daughter brought in Pamela's brownies and 4 kids said that they were the best ever, and the moms all emailed for the recipe! Made my daughter feel great.

Good luck and i hope that you can turn the teacher around.

I'm nervous about putting my 5 year old on a gluten-free diet because he has tested negative twice on blood tests. Somehow I feel like I'm lying because he doesn't have the medical establishment's "official" diagnosis, therefore, I'm hesitant to state he is a celiac.

His 9 year old sister tested positive twice on blood work and then biopsied (March 07) and had tons of damage. My mother is also a confirmed (blood test) celiac. MY son was starting to display some of the same symptoms that my daughter had -- not GI symptoms except lethal flatulence, but behavior issues, especially in school. He is small for his age, less than 3% for height and weight, slight speech delay which seems to be getting better as we work with him. He has no developmental delay or physical delay (rode a two wheeler before he was 4).

I put him on the gluten-free diet on Saturday after a long conversation with the teacher -- it tipped the scale for me to get him gluten-free. His behavior has deteriorated since the beginning of school, no focus, easily upset, fidgets, etc. The daycare also noticed his change in behavior and noted it was significant.

My 9 year old went through several years of horrendous behavior, which started in Kindergarten, before being diagnosed as Celiac and I wanted to save my family from that downward spiral. We never knew and blamed her behavior on psychological issues rather than physiological. We didn't know about the genetics of celica disease until recently.

I know that a positive response to the diet is often enough for diagnosis (not from the medical estabilishment unfortunately). My son had a terrific day at school, he waited his turn, was quiet and didn't blurt out answers, raised his hand, and didn't get into others' space. The teacher was also wonderful as she had planned to use smarties for an activity and used skittles from my son's new snack box. I was surprised the teacher was so thoughtful and forward thinking.

Anyways, a long post to ask those who don't have the official diagnosis from the medical establishment, does it make a difference as children get older in sticking to the diet and remaining gluten-free? My daughter will NEVER eat gluten on purpose as she feels so much better, plus the GI told her that she had extensive damage. But my son has tested twice negative but I felt I couldn't wait another 10 months to get an appointment with the GI. He keeps saying he doesn't have Celiac because his blood is fine.

If you decide to be tested how long does one need to be on gluten, or do a gluten =challenge? Is it worth having my son's blood tested again, after he's been gluten-free for 4 days. Am I too late, or is it even worth sticking him with a needle which he absolutely hates?

Thank you.

Pam

What city in Alberta are you? Our daycare in Calgary is very knowledgeable about celiac's, but I do know that Calgary has few affordable childcare options and the waiting lists can be over 2 years. I'm sure you could speak with the Calgary Celiac Association about joining, or the Edmonton one, whichever is closest. They have meetings for parents -- unfortunately I've only been able to attend one, and it was very helpful. They also have get-togethers for kids. Is childcare in your own house an option?

I would speak with your school principal about the school lunch program and the lack of supervision. I believe that we do not have anything similar to the "disability" program for kids in schools like the States (can't remeber what it is called). It is a matter of teachers, principals, and other parents believing that yes celiac IS a big deal and should be taken as seriously as nut allergies. Send all the parents a letter about celiac's. I didn't have to do that as my daughter is 9 and is quite the self-advocate -- but I did let the teacher know, letter on file with the school and have informally chatted with her friends' parents. I always send food with her to a party to share with others so they see that gluten-free food is GREAT. Getting other parents on your side and voicing their concerns really helps.

I hope something works out for you.

I am still new to the celiac way of life (my 9 year old was biopsied on March 22, 2006), but thought I was doing okay with reading labels, and learning tons from this board. My daughter really likes the Safeway Signature soups, so I carefully read the labels and chose the chicken and wild rice one for her, which she had for lunch last Friday. I subsequently emailed Safeway to get a list of the gluten free Signature soups, and found out that there is hidden gluten in the one I chose, plus others that we considered based on the ingredients. Stupid me!! Don't trust labels.

Here is the response from Safeway (note it is from Canada Safeway):

Thank you for your feedback regarding our Safeway Signature Soups.

You inquired about the gluten free Safeway Signature Soups. For your convenience, our research indicates that the Signature Soup (Fajita Chicken Toasted Corn Chowder & Baked Potato), Soup Mix (Black Bean & Rice, Tex Mex Rice & Bean, Tortilla Con Queso), soup (only chicken with rice) and Homestyle Soups (Chicken Corn Chowder and Clam Chowder) are gluten free.

For additional information, please contact our Private Label Department directly at 1-888-723-3929. Thank you for your time and interest.

Hope this information saves someone for a glutening.

Hello

Is anyone willing to share her letter to the teacher/school re celiac for her elementary child (going into Grade 4).

I've been searching on the Internet and the ones I've come across seem complicated and very wordy. I would love to have a "tried and tested" letter that other parents have used that teachers respond to.

My 9 year old daughter was diagnosed in March and I spoke with the teacher then, but never followed up with a letter for her file. As I do not know the teacher this year, I would like to have something written to explain my daughter's disease.

Thank you in advance.

Hello Carrie

Our daughters sound very similar.

My 9 yo daughter was diagnosed celiac, by biopsy, late March (one week after turning 9). She did not have any GI symptoms -- she was picked up by random blood screening for a research project. The biopsy proved she had extensive damage.

In hind sight, her only symptoms were emotional and lack of energy. She basically freaked out at the smallest things, was difficult to calm, and was just a very unhappy kid a lot of the time. She was able to hold it together at school for the most part, but was an absolute horror at home. This started around Kindergarten, and kept getting worse. I thought it was a lot of sibling jealousy. I was on the verge of taking her to a psychologist as her behavior was so beyond what my husband and I could deal with.

Since going gluten-free, she is, for the most part, my sweet girl again, like when she was a toddler and preschooler. She made the switch to gluten-free food very very well and I think that the extensive damage by biopsy proved to her the need to be gluten-free. After a couple of weeks, she had energy. She wanted to play in the school yard after school. Prior to going gluten-free she would scream and yell at me that she wanted to go home, even though her younger sister wanted to stay. She has a lot fewer issues with clothes -- sensory issues. I swear before being diagnosed she wore the same pair of panties, every day, for months and months. It was rare that I could get them off her to wash. She still prefers dresses/skirts, but won't have a meltdown if we insist on pants for bike riding, proper ski apparel, etc. She told me that she wants to play indoor soccer during the winter, which is a big step in activity for her.

She still reads A LOT, but plays way more than she did before. She is still easily frustrated, but calms herself quickly, and often shrugs it off. The bad thing about not having GI symptoms, and only behavioral ones, is I'm never really sure if she gets glutened. We are not a gluten-free house, and her dad can be sloppy at times. Today she was off the wall, but she also only got 6.5 hours sleep, so it is hard to tell what is going on.

She is amazing with the new way of eating. She voluntarily chooses to not eat food she is not positive about (except she is convinced all candy is okay -- we are working on that). She never complains and is pretty open to trying new food. She is thrilled, as are my other two kids, about the celiac diagnosis as we have way more treats and baking in the house now than before. She'll go to a party and just not eat, or say she isn't hungry. I wish I could have her self-control, but she knows she feels better not eating gluten.

The best response she gave to a newly diagnosed teacher was, when asked how she feels, she said "I feel happier". Indeed, our whole house is happier.

I hope that your daughter too will feel happier soon and that she has more energy once being gluten-free for a bit.

Good luck.

My just turned 9 year old daughter was biopsed in March. I'm not sure if the procedure is the same for such a toddler but would presume it is.

My daughter did very well. I was able to go into the OR and be with her as she fell asleep. That was so calming for me. She drifted off to sleep easily. I met all the nurses and others. And it was comforting for my daughter to have me there. It really wasn't scary. If I hadn't been allowed to go right into the OR with her, I would have been more tense.

We were in the hospital for about 3.5 hours before the procedure. I was in the waiting area for about 20 minutes before the GI Dr. came to me. I was suprised the procedure was so quick. He didn't see visible damage, but when we got the biopsy results, she did have extensive damage.

Her recovery was okay, she was pretty nauseous afterwards. I saw her within 45 minutes after leaving her. She was eating a strawberry popsicle. Do not let your kid eat a red popsicle as if they vomit, they vomit red and you think that they have thrown up blood. Get them to choose a different type. She slept a bit, and once she finally got sick she felt much better. We went home about 3-4 hours after the biopsy. The nurses were terrific.

She experienced no side effects from the procedure.

We took part in an orientation a week before which really helped my daughter. One girl, same age, had already had an operation so was able to talk about it and really helped explain that it is all okay. I doubt that this would be useful to a 2 year old.

The hardest part was not eating or drinking since midnight as the procedure didn't happen until noon or so.

As my daughter was asympomatic, and despite 2 positive blood tests, I felt that the biopsy was essential for diagnosis. A gluten-free diet, which is an excellent indication of celiac if symptoms resolve, would not have been a diagnositic tool for us as she had no symptoms.

Good luck with your decision and I hope this info is useful.

I would say it is true as well, and really surprising.

My daughter (turned 9 in March, and biopsy March 22, positive for celiac) now too has energy. She wasn't a lazy child but every day after school she begged to go home immediately, whereas her younger sister always wanted to play in the playground. Now my celiac daughter stays and plays, she joined running club, she plays more at lunch (her admission). She plays grounders with the other kids where before she just sort of walked around or stood watching.

She sleeps better too -- before going gluten-free she would stay up to all hours, she now is usually asleep by 9:30 - 10:00 (at least 1.5 hours than when not gluten-free).

Being gluten-free is definitely giving her lots more energy.

And I'm especially proud of her today as she made her first communion and decided on her own not to take the host -- I told her it was her decision and she said that she feels better being gluten-free (and note, she had no GI symptoms ever, except for being the farting queen).

Now perhaps we'll both take up running!

My daughter was diagnosed at the end of March. After a couple of months purchasing the super expensive muffins and other baking for my daughter, I've decided that investing in a Kitchen Aide Stand Mixer would be well worth it.

I'm not sure which mixer to purchase (for cosmetic purposes we would like either red or black, if possible). I haven't really baked anything yet for her, but have read that the flours can be very thick and difficult to mix. Should I invest in the higher end model that is more of a commerical grade, or will the standard model work just fine?

Thanks in advance for any input and opinions.

Mairin's mom

My daughter has been gluten-free for about 3 weeks since positive biopsy (just turned 9). She never had any GI symptoms and I'm not sure if behavior issues are gluten related or not.

I'm confused on a whole bunch of things now, just when I thought I was doing okay figuring this gluten-free stuff out. Celiacs is so much more overwhelming than I anticipated -- the more you learn, the less you realize that you know.

1. Is reading the ingredients NOT enough to determine if gluten-free? I just obtained a list of "safe" manufacturers (ie those who disclose any gluten) from another forum here. Does that mean I should be calling/emailing all other manufacturers to ensure that artifical/natural flavors or other ingredients are gluten-free? What about manufacturing lines, does that matter too?

2. Cross contamination - we are not a gluten-free house. Most dinners are totally gluten-free except pasta. I prepare my DD's food (lunch/breakfast) on one side of the stove, ours on the other, don't mix spoons, separate butter, etc. But I'm a bit confused on cleaning up such as wiping the countertop. Do I use two separate cloths, and keep one sink gluten-free? I try to put all items in the dishwasher so that they are sterilized with very hot water. I use a plastic cutting board for gluten-free foods, but am still using wooden spoons (that go in the dishwasher). We have a separate shelf in the fridge, plus two other gluten-free shelves.

3. What are the differences in labeling in Canada and US? I'm in Calgary, Alberta and I'm not sure when reading here what really applies to me as a Canadian re listing ingredients.

I'm sure that I am accidently glutening my DD because I'm still confused on too many issues. My daughter was totally excited to have a Wendy's Frosty -- we call them malts and she thinks it is so funny she can have a "malt" (she knows about the big gluten ingredients to avoid) but can't have Kellogg's Rice Krispies. She has a very good attitude about it right now and is extremely cooperative (but does refuse to eat any gluten-free food we purchase that she doesn't like, which has been quite a bit!)

Thank you for any assistance.

Hello everyone

We just received my 9-year-old daughter's biopsy results today. They are positive. She has had two positive blood tests (last one in November) and we finally had the biopsy last Thursday. She is mostly asymptomatic, except behavior.

I've been reading for several months now, have purchased a couple of books (the Raising Kids one) but suddenly have no idea how to start. I thought I was well-informed and would be able to take the diagnosis in stride, but I'm feeling overwhelmed now. We will get an appointment with a dietician but not sure when. I rather not wait but would like to go into the consultation armed with informed questions.

Do we immediately go gluten-free without the dietician's guidance? I do make lots of meals (especially dinner) that are naturally gluten-free but of course planned pasta tonight. Felt badly as I had nothing alternative planned for her. Pizza lunch at school is Friday -- should I say this is the last time? Does that mean I'm wishy washy about the gluten in her eyes though?

I know that there have been other posts like this and someone has a newbie guide, but thought I would post first, while I go through previous posts once my kids are in bed.

And Canadians, is it worth it for income tax purposes to keep track of the gluten-free food receipts if only one person is celiac?

Thanks for any assistance and guidance.

Mairin's mom

Great to hear about this study.

I'm in Calgary and my 8-year-old tested positive in a random blood screen for celiacs. Seems one of the GI guys from the Children's was testing 1,000 vials of left-over blood for celiac disease. 15 children out of the 1000 tested positive.

I had requested a blood test for my daughter in summer 2006 as I thought she was not eating very well and might be anemic. And then in October I get a call out of the blue from my peditrician saying that she tested positive for celiac. Another blood test, also positive, biopsy scheduled for March 22.

She is pretty asymptomatic -- except for being very tiny (less than 3%ile for height and weight) and behavior at times. No classic symptoms. However when she was about 15 months she did have classic symptoms -- chronic diarrhea. I had her blood tested as we suspected celiac (my mom's one) but her bloodwork came back as borderline for malabsorption. My pedi had asked me to keep a food diary for her when she was 15 months and to also journal her stools. I had to do this for about a month, but after a few days I realized that stating her stool was greenish yellow, or yellowish green, didn't mean much. So I used paint chips to color code her poo! I have no idea if color of stools matters, but my pedi was so impressed with the process I used. Her diarrhea resolved itself after awhile, life went on and got busier with a couple more kids.

We were very surprised when we got the call this past October. The Children's seems to be quite progressive with respect to celiac disease. I haven't received a copy of the study, but perhaps she is not yet consider a celiac as we have not done the biopsy.

Mairin

Hello

My almost 9-year-old daughter has had two positive blood tests for celiac and she has her first appointment with the pediatric GI this Friday. I've done tons of reading but have not seen anything that lists questions you should ask the GI during your initial consult. I feel knowledgable and am leaning towards biopsy for her (she has few symptoms, mostly behavior and short stature, for the most part, and I believe that we will have issues with compliance without the biopsy - I want her to know the level of damage and to understand that even eating "just a bit" causes damage).

So, I'm not here to debate the biopsy/no biopsy, but would like to go to the meeting well-prepared with specific questions. For those of you who have been down this path, what do you wish you had asked at the first appointment, what are the "must ask" questions, etc.

Mairin's first test was through a research study of 1000 vials of blood specifically looking for celiac. it was a surprise (well, somewhat) for us when we were contacted by our pedi to say that she had tested positive. A subsequent blood test was also positive, but negative for her younger sister (6) and brother (4 -- we will be following up on my son with the GI as he is off-the-charts small for his age).

Many thanks in advance.

Mairin's mom