strawberrygm

has she had her vitamin levels checked? particularly iron, b-vit levels, but also thyroid.

yes the doc said iron and thyroid were normal. idk if she said b-vit or not.

my daughter has been gluten free since july 08.

she has experience many improvements since going gluten free. growing, weight gain, reduced stomach pain, less fatigue, better moods.

my concern is that she is still so tired all the time. it got better for awhile, but is back again. not as bad as before, yet still tired. i should add that the tiredness sets in when there is nothing better to do. as in, when friends are over or she isnt going somewhere. she is 11, her period began may 08 and is regular now. she is currently in between cycles.

just yesterday i kept her home from school complaining of tiredness and stomach pain. the doc felt stool in her belly, yet she just went the day before. now we get to find gluten free fibery foods. haha. pears and apples, she loves them thankfully. the doc checked her for mono, and ran a cbc. all tests came back normal. i just texted doc to see if she ordered a celiac panel, her numbers havent been checked since going gluten free.

we are not a gluten free home, yet i am careful with her foods and keep her things stored separately. of course, i am not with her at school and at friends houses, etc. last year in elem school she didnt mind taking her own lunch, heating it up in the teachers microwave, etc. now at middle school, she loves the salads and baked potatos they offer, so getting her to take her lunch is not happening.

do you think this is gluten related, or typical preteen actions?

thanks in advance!!

i asked my friend (like family) if i could bring her over some gluten free flour, so that when she makes her dressing, she uses chicken, not turkey, she could sit aside the onions, celery, etc that goes in it and make my daughter a small pan of dressing with the gluten free flour. thankfully, she understands the cross contamination and will be very careful when doing this.

wildtree has an excellent pumpkin cheesecake mix that you mix with cream cheese, you can throw that into a gluten free crust, or simply eat it with a spoon...yummy!

does having celiac make you more susceptable to the swine flu or make it more dangerous if you get it??

how many of you are or are not taking the vaccine if/when it becomes available???

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i did a search last night after seeing this thread. there are several gluten free camps out there, but none near me. =(

thats awesome to learn that there are some, though, hopefully more will begin popping up everywhere!!

gluten free camp??!!!

what??

where??????????

my daughter is 10 and was diagnosed last summer.

i thought we were doing so good keeping her gluten-free and she is feeling much better and has gained some weight, but she is still bone thin and tired all the time.

she just had her first period last month.

i thought maybe her tiredness was not from celiac so much as her age and bodily changes, etc.

but just today, i was sitting her eating a trail mix that she and i love. all of a sudden i noticed it said in the allergy warning it had wheat. i had never even thought to check the warnings on the bag because nothing in it would make you think it would have wheat in it. it has chocolate chips, white chocolate chips, peanut butter chips, nuts, raisins and cranberries. it is by sam's choice, called indulgent trail mix.

i read through the ingredients and still do not know where the wheat is coming from, but there in the warning box, wheat is listed. uggghh.

i could just kick myself.

no telling where else i am missing it in. i must admit i dont check everything, only the things i think may have gluten in them and the things i have been warned to look at, such as fries, ketchups, dressings, bbq sauces. things like trail mix with no cereals....no, i dont think to check them. i will now!

i feel like i am failing her. almost a year later and i am missing stuff!!

i havent had her levels rechecked, and dont want to now. not that her doc has mentioned it or anything, i just seen it mentioned in here several times.

its so hard to keep her able to eat the same as her friends, especially in podunk where there is no health food stores to be found in a 2 hour radious!!!!

i am just mad and disgusted at myself and the world for putting flippin gluten in everything! even shampoo?!?! why on earth?? its a conspiracy, a cruel cruel joke!!!

i agree. it is totally not your fault. yet i understand how you feel. i bought wheat free oreos, thinking they were safe, only to realize after my daughter was loving them that they were indeeed wheat free, but not at all gluten free.

i do appreciate everyone's comments and advice very much and will continue to keep you updated.

the financial support actually comes pretty nice, they give you a list of foods, you choose what you want and the qty, up to the amount you are allowed. preparing meals at home isnt the hardest part for us, but having things on hand to send for lunches, snacks, and to friends houses, etc. i agree that the meats and veggies are best for all of us. yet i am sure she doesnt always want left overs for lunch, and when she goes to friends houses, sending items (not always, but to newer friends or less careful moms) certainly makes me feel better. its so frustrating dealin with the doctors and the whole system that is supposed to be there to help us but seems to be working against us.

I had no luck with my search for that post or that poster. Anyone???

I think you should post a separate thread on this board, asking if anyone within 200 miles of you can recommend a doctor who is familiar with celiac.

Your doctor obviously is not--he is only diagnosing it in its extreme end stage. That's like not diagnosing someone with a peanut allergy until they have a severe anaphylactic reaction, instead of diagnosing them at the first sign of hives, or swollen lips, or vomiting. Ridiculous.

Lacee has antibodies to gluten and villi damage--that is celiac. To my knowledge (someone correct me if I'm wrong), there is NOTHING else that can cause both. To not diagnose it because the damage isn't severe enough is like not saying you're pregnant until the baby is crowning.

If you do a search on this board, there is someone ("TCA") who posted a thread a couple of years ago called "Megan's gagging isn't getting any better." See if you can pm her or contact her somehow, as her daughter had heart surgery at Vanderbilt. She went through heck with the doctors, as they didn't initially believe that her baby was reacting to gluten via breastmilk. But the mother took amazingly careful notes, made charts of diet and symptoms, and PROVED to the doctors that the gluten was what she was reacting to. They finally did believe her.

I'm sure Lacee is wishing that somehow, she doesn't really have celiac, but wishful thinking can get you into trouble.

Imagine next summer--her intestines will have healed. If you do a gluten challenge, she might have severe reactions. Or she might not. She might have no reaction whatsoever--at first. It takes a while to damage the intestines, you know.

This is why, 30 years ago, they used to think that children "outgrew" celiac, the way that some allergies are outgrown. (You probably know by now that celiac is not an allergy, but an autoimmune disorder, right?) But those children who seemed able to eat gluten again with no problems DID go on to develop severe problems, including lupus, rheumatoid arthritis, thyroid disorders, diabetes, fibromyalgia, IBS (which we all know is often celiac misdiagnosed), and possibly intestinal lymphoma.

I know how hard it seems at first, but there are geniuses out there who have come up with gluten-free recipes for EVERYTHING, and they do taste just like the gluteny originals. Right now, most of the premade gluten-free stuff you see at the store tastes like styrofoam, but you can special-order gluten-free breads, rolls, muffins, bagels, cakes, cookies, pizza crusts, whatever, that taste really, really good.

And most of the recipes are EASIER than gluteny recipes, because there is no gluten that needs to rest, or be kneaded, etc. Mix, dump, bake, you're done--and it all tastes great.

Please keep researching everything, hang in there, and get a better doctor!!!!

I just sent emails to several of the closest listings.

Thank you so much for your help!

FIND A NEW DOCTOR!!! I said that loud so you could hear me in Tennessee. Are you near Memphis? Please PM me and I will give you some contacts.

Here are some contacts in Tennessee. They can direct you to where you need to be:

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No need to apologize for rants. We all have them. Experience is what makes you all so important to those of us just beginning on this journey.

The reason I need the diagnosis from the doc at vandy is b/c we are eligible for financial support with her gluten free foods. But the caseworker needs the diagnosis from vandy since they are the ones that performed the tests and are the specialists.

Her ped has diagnosed her with celiac.

This is the same ped that has told me that if I would like to try my 1yr old on the gluten free diet before having ANY testing done and he has a positive response she will go ahead and diagnose him.

I am trying to get a diagnosis from the pediatric gastrointerologist specialist at Vanderbilt Childrens Hospital for my daughters caseworker, since he is the one that performed the biopsy.

HEY- do ya'll think I should get her ped to order "the poop test"??

if you will review my posts on the parents board, it will give you a little background on my issues currently with my daughter.

if you look on a map, at the spot where TN, MS, and AL meet....that is where Savannah TN is located.

Thank you all so very much for your advice and help!!

I hate not knowing what is going on with my kids. I was not impressed with Lebonheur when Lacee was 1 with sleep apnea, I was not impressed with them taking 3 tries to get a negative result on her at age 3 for cystic fibrosis, and I was not impressed with them this summer with Mark Anthony and his tonsil/adenoid and ear tube surgery.

This is the first time I have ever felt a need to question Vanderbilt, but you are all right, I have to put my kids first. Just because he has good bedside manners, or seems to be a great person, does not mean a doc can not make a mistake (intentional or not).

I so dont want her to get sick again. I want to be on the road to healing and a better life for her.

I am now spazzing myself out, thinking well if its not celiac, then what is it? Is it worse?

I appreciate you all so much!!!

Where would I go?

We live in West TN. The ped gastro she sees is at Vanderbilt Childrens in Nashville. 2 hours away.

There is another Childrens Hospital 2 hours in the other direction -- Lebhoneur.

Anyone know any good celiac docs in TN??

We use Lipton Tea at our house. Regular Tea. Anyone have issues with that? We are still new and learning each day.

My regular ped gave us a list of gluten-free meds.

Mylanta is not on it, but prilosec is.

Anyone know?

We were in Nashville TN (franklin greenhills area).

Was looking for the Whole Foods Store, but it turned out to be a Trader Joe's.

It was really great....but....there were things I was looking for that I couldnt find, not as much gluten-free choices as I had hoped.

Is there a difference in Trader Joe's, Whole Foods, Wild Oats??

thanks so much for sharing that!!!

it gives hope to those of us just starting out!!!

No, I havent yet.

I am torn on whether I should or not.

I really like this doc as far as being super careful and taking his time with us, not rushing through a visit, explaining everything in great detail, etc etc.

BUT, I am concerned about this as it seems to me she has enough for the diagnosis. And ESPECIALLY the 19yr old girl he told me about!!

Speaking of Cheetos, have you tried the new Natural Cheetos? The white ones? My dd has been eating them and they dont seem to be bothering her. Maybe they are safer than the traditional yellow cheese ones??-

Remember I posted that I was so mad I could spit gluten free nails b/c the ped gastro wouldnt sign off on dd's paperwork so that we could get financial help with her gluten free foods?

We met with him last Wednesday.

I didn't realize this until then, but he apparantly is an all by the book very clinical type person.

She has all the signs and symptoms for celiac. Her bloodwork pointed to it. There was some damage on the biopsy. And she has had a great response to going gluten free.

But here's the deal = there wasnt HORRIBLE damage to her villi. So, he wont offically diagnose her on paper as Celiac unless there was HORRIBLE damage.

He did provide me with a letter for the caseworker that stated that she has symptoms associated with Celiac and has had a great response to the gluten free diet.

He told me about another patient of his who is 19yrs old and has spent many years under his care, trying so hard to find a diagnosis for her pain and problems, was always in the hospital or ER , refused pain meds so you know she wasnt a drugseeker, but they never could find a problem. She researched and thought maybe it was Celiac, so she emailed doc to see if she had been checked and she had. She tried the gluten-free diet and is healthier than she has ever been in her whole life. Yet he still can't diagnose her.

He wants to challenge Lacee with gluten this summer when she is out of school. Lacee and I are both so torn about this, as yes we would love for her not to be Celiac or gluten intolerant and be able to eat like her friends, but the thought of her getting sick again is paralyzing. She is 10, we talked about what he had said on the way home. She said that if we did try gluten this summer that she was only going to do it for a couple days and as soon as she started getting "THAT PAIN" as she called it back she was done!

This may sound harsh, and I apologize in advance.

In my opinion, you need to move on. If he isnt willing to support you with his family, then he doesnt deserve you. You deserve better.

I am sorry if I offended you, because I certainly do not mean to hurt you. But I am sure you are hurting already, and his lack of caring is the cause. Celiac, diabetic, broken leg, any thing....your friends and loved ones should be there as your support system, not leave you out.

He doesnt deserve you and you deserve better.