kevieb

actually, sheryll, your story doesn't sound too "weird". flour is so fine that i can see how that would stick too your hands alot more than crumbs would. you could feel crumbs between your fingers---but you wouldn't necessarily feel flour between your fingers.

these articles were really interesting---ok, i didn't read the second word for word, but got the gist of it----just wondering if anyone else gets feeling almost overwhelmed by how many different foods could possibly be causing problems for them? i would like to experiment with eliminating more foods to see if i could help my fibro, but i just can't seem to wrap my mind around the complexity of it, yet.

shan---does your baby have reflux, by chance?

you can start nursing again. it would be a little bit of work, but it can be done. there are a couple of prescription meds that will increase your milk supply. one of them is called reglan. it is a motility drug, but it increases the chemical in your body that controls your milk supply---can't think of the chemical off the top of my head. you would need to get your baby to breastfeed as much as possible and using an electric breast pump would help to stimulate milk production, also.

if your friend ate a gluten sandwich and then came over to your house and touched your fridge handle and you touched it later and got glutened----what are the chances that she is going to walk around with crumbs clinging to her hands that won't get knocked off during a walk or a drive to your house---not to mention the fact that she has to touch door knobs and probably just brush her hands against any number of things before she got to your fridge handle. this just seems to be giving gluten some sort if "sci-fi-sh" life of it's own that allows it to spread uncontrollably. this just seems so unrealistic. i know, stranger things have happened and people will come on after me and say it happened to them......

i had an IUD once, and i LOVED it. it was supposed to last me 8 years---and ten months later i was pregnant--and it was a tubal pregnancy. i think that what happened to me was the exception, not the rule. i would have gotten another IUD before tying my tubes if i hadn't been "thrown off the eligibility list" so to speak. i would still recomment an IUD to someone else. also, even though i think my tubal caused me to be anemic----i don't think i had the "tubal syndrome" or what-ever it is that people keep blaming on tubal ligations----though i don't doubt that some people really have some problems. my fibromyalgia got worse after my hysterectomy, but i'm still glad i had it done----i love not having a period every month!!!!!!

i had a tubal done laparoscopically two years ago. the doc told me another pregnacny could kill me. i had heavy periods before my tubal. they got heavier after my tubal and i got really anemic. i ended up having a hysterectomy a year after my tubal. i think it might be normal to have heavy periods for awhile after a tubal----and that they can possibly lessen up again over time---but i was over 40 and the birth control pill they tried (after the tubal) tubal did not work to stop the bleeding. turns out i had adenomyosis. i should have had the hysterctomy first and the tubal second.LOL!!!!!

ladies, i am in the same boat with my youngest child. she very skinny---you can see all her ribs, she gets rashy on her behind, (but it does not look like DH) it comes and goes. sylvia also had brown horizontal ridges across her front teeth. she had 6 teeth crowned a few months after she turned 3---they worked on 12 teeth total. the dentist told me she has enamel hypoplasia. she does not appear to be getting any further damage to her teeth. she is a wild, squirrly, happy little girl, but i do worry whether or not she could have celiac disease. so far, she has tested negative. she had health problems and was FTT until she was 2. they tell me that this could also be the cause of her teeth problems. all of our meals are gluten free, but i do keep certain wheat-based things around for the non-celiacs at home. i guess this means sylvia is gluten-light. at this time, i choose not to put her gluten free because it is important to me to have an actual diagnosis and she is doing well. i will probably have her tested for celiac again soon, and will probably continue to check her on a regular basis.

just like my daughter, your kids seem to have little things that indicate the possibility of celiac disease, and we know it is a real possibility since we already have diagnosed family members.

the fact that you say these episodes happen for about a month after a stomach ailment helps to point to dairy. like others have said, celiacs can be lactose intolerant until their intestines heal. i believe that a gut ailment can also cause a temporary lactose intolerance-----i assume because the intestines can become inflamed------clear liquids are sometimes recommended for diahrreah (how do you spell that!!!???) the clear liquids give the gut a chance to heal before puttting dairy back into the diet. babies are put on pedialyte when they get this kind of illness.

a dairy problem can cause flattening of the villi----but if your daughter also had a positive celiac antibody test, i doubt there is any hope of a mistaken celiac diagnosis.

my girls were diagnosed by Ttg antibody tests---not by biopsies. there was a period of time when i was wondering if maybe the diagnosis could be wrong---maybe i was hoping it was wrong. the clincher for us, that took away all doubt, is that we do regular blood work every 6 months and their Ttg levels fall when they are gluten free and raise when they get gluten.

maggie, i think the biopsy route is the best way to go---especially if you have a child that is not eager to be compliant without a "real" diagnosis. i was under the impression that true DH can take a while to heal up even after going gluten free----so i don't think a 3 or 4 week trial would give you a clear answer. that being said, i THINK that one of my twins has DH. she had rashes in the classic places---elbows, knees and buttocks. this is what clued us in to test for celiac in the first place. we never did a biopsy on the rashes----her blood work was positive. her rashes cleared up after we got her gluten free and they came back while she was in the hospital and they were not keeping her gluten free. i kind of thought it might not be DH because it cleared up faster than i would have expected-----but she has been left with a lot of scars from it. i have heard that DH can leave scars. i have atopic dermatitis and my skin can get looking awful at times----but it does not leave scars.

i think this is plausible, especially since it is a problem you had as a child and had to "work" to get over it. you always hear that stress will affect different people differently because we all have different weak areas in our bodies. i would say that getting glutened for a celiac could definitely be stressfull and that since stuttering was a weak area for you it would make sence that a glutening could make you stutter. hope all that made sence!!!!

please see a counselor----this sounds like eating disorder behavior. my daughter spent 3 months in the hospital because of an eating disorder---and they couldn't keep her gluten free.

my gilrs eat cheetos and off-brand cheese snacks without any problems.

ursula---i'm with judy---i think your links were great. i'm starting to see "nightshade intolerance" pop up more and more often in various places.

i think that is something you would just have to try and see if it works for you. i know there is someone on here that says she bakes wheat-filled goodies for her husband and has no problems with it. she also says she is a pretty sensitive celiac. i wish i could remember who it was so you could ask her what precautions she takes.

yes, 3 of my girls have celiac, but i have 6 other children that do not have celiac. my 18 year old has the gene but no disease---we don't know about the others. i'd like to know a little more about the celiac kids camp in tooele. there is a kids celiac group in boise, but we have never made it to one of their meetings.

one of my three daughters' antibody levels were back to normal after 6 months gluten free, but her levels were not as high as your daughter's were.. the other two girls admitted to cheating on the diet and their levels were still slightly elevated. one of them spent 3 months in the hospital supposedly gluten free and came out with her Ttg levels over 100---they had been about 12 when she went in. below 7 was normal on the scale we were using.

both tests were looking for antibodies to gliadin, they just used different reference ranges. testing for Ttg antibodies (and testing your total IgA serum levels) is a much more accurate way to have your blood tested.

finding a LLMD will be the tricky part for me----we live a zillion miles from no where. actually, i have been looking into a treatment center for fibromyalgia and i noticed that part of their protocol is to check for undiagnosed disease and infection----and they specifically mentioned lyme disease.

are most labs able to do the two different western blot tests?

i need to talk to my insurance to see what they will pay for as far as testing for lyme. i would really like to get tested through igenex-----but if my insurance won't cover them, what is my next best bet? can someone tell me exactly what i need to ask my doctor to order?

we are in the midst of getting the kids back in to school and trying to sell our house, so it may be a little while before i can talk to my doc about getting tested.

we're not in utah, but we're close. we live in southern idaho. i know of one other celiac child in our town besides my 3 girls.

Angie, not Stef!

whoops!! sorry!!! my kids don't even get called by the right name.

i don't know that much about my cousin's home birth----but i do know that she chose to have a mid-wife the next time.

stef---i don't think my husband has ever asked me how an appt went in almost 20 years of marriage. if he has, it hasn't been often. i think mens brains are just wired differently----and they probably short out at times. LOL!!!

michelle, i am so glad to know that you had a plan in place to transfer to a hospital in case things looked like they could go wrong. i was connected (years ago) to a group of people that were so set on home delivery that they were upset with the doctor, who was will to home birth babies, because he insisted that they would have to go to the hospital if it looked like there could be problems. one of my cousins chose to delivery her baby at home with no one but her husband present-----no mid-wife. the baby died the next day on the way to the hospital. i have known of a couple of other people that had disastrous problems with home deliveries and it seemed like such a shame to be so set on something that it mattered more than the well being of the child. it is good for people like me, who admittedly are a little bit jaded about this issue, to hear that there are people like you that go about it very sensibly.

i finally mentioned to my husband yesterday that i thought i should get tested for lyme disease since i am having so many health problems and i have been bit by a tick. my husband thought this was a GOOD idea. this may not sound like much, but to me this is a big deal because my husband hates to hear about medical things. i told him that i really appreciated his support. he thought it would be good to rule it out. i am amazed!!!

dizzynik---i have 3 daughters with celiac disease. a 12 year old and 16 year old twins. one of my twins is a purging anorexic. she spent 3 months in the hospital last year. she had dropped to 67 lbs and was hoping to starve herself to death. her potassium was low, her cholesterol was high and her heart rate would drop pretty low when she was asleep----they kept her on a heart monitor for 2 weeks. she spent the next 2 1/2 months at seattle children's hospital in their ED program. they assured me they knew what they were doing when it came to a gluten free diet---even when i told them i thought she was getting gluten. she came home with her Ttg levels over 100--they were only 12 when she went into the hospital. i think it prompted them to re-assess their kitchen staffs ability to feed a gluten free child.

my daughter has had her ups and downs during the last year. i thought we might have to put her into treatment again over the winter, but she managed to put weight back on. she has her set backs, but she seems to be doing well at the present time.

i think it can be more difficult to battle an eating disorder when your diet is restricted for other health reasons. my daughter used to cry when she was about 4 or 5 years old because she was afraid she would get fat-----she has always been very small and underweight. back then, i hoped that she wasn't headed for an eating disorder.

my heart goes out to you.