kevieb

ducky is right---the lady over the study says that they know there are other genes involved besides DQ2 and DQ8. they are trying to find out what they are. a good example of this would be the fact that with identical twins, if one has celiac the other has a 70-75% chance of getting celiac---but not a 100% chance. in our case, my identical twins both have celiac.

my memory is going, i forgot i had posted about the frog eye salad! if my memory doesn't go on me again, i will look up the recipe and post it.

it has been such a long time since i have been on the board that i don't know if anyone will even remember me. the look of the board has changed since i was last here.

we joined the celiac study that is being done at the university of california, irvine a year and a half ago. the results of the celiac tests confirmed what we already knew about our three girls with celiac. i just barely found out the results of our genetic testing. i didn't get the results of my two older kids because they are over 18. i asked them to mail them the results. as far as the rest of us---every single one of us carries the DQ2 gene----both my husband and i and all 7 kids we have had together. my two oldest are from my first marriage. kevin has two from another marriage, also, but neither one of them was tested.

i really didn't expect that every one of us would carry one of the genes and i wonder what activated the disease in the three girls and not in the rest of us. i guess this means yearly blood tests for all of us.

i haven't been on here for a long time!!! we have moved and i have been pretty preoccupied with trying to adjust to the move----i cried every day for a month---and i was the one that pushed for the move??!! we have a bigger house, which is great, but we have a smaller yard and i think that is what is killing me. we still have a bigger yard than most houses in town, but we had an extra lot before and some great play equipment. the kids got a trampoline for christmas---so i guess that is a start. the lot is 140 ft by about 118 ft.----we used to have almost 1/2 of an acre. i guess we must be about 1/3 of an acre now---but the yard is broken up into separate spaces because of where the house is placed. my husband does NOT miss the big yard.

anyway---what i really wanted to tell you is that i made gluten free frog eye salad for christmas eve dinner---and it was really good. instead of the tiny noodles, i used old fashioned whole pearl tapioca. i don't think anyone would have been able to tell the difference if i hadn't told them.

merry christmas!!!!!

christine

IgA deficiency is a little more common in celiacs than it is in non-celiacs, but i don't know the figures. one of my children is IgA deficien----and registers at almost nothing. he does not have celiac disease, but he does carry one of the main genes for it.

it used to seem like he had a cold all winter long, so i figured he must have allergies. he tests negative for allergies, but once i learned he was IgA deficient, i realized he probably DID have a cold most of the winter.

dr. fine believes that no one should consume dairy products----i think that is regardless of what test results you have. have you ever tried taking lactose supplements to see if it relieves the bloating and gas?

i have a son who is IgA deficient. he didn't just test low---his levels are almost non-existent. i think that there is a definite difference between being IgA deficient and having low IgA levels. since enterolab does not test IgA serum levels and dr. fine goes on and on saying he is going to publish---without ever publishing---i think you would be far better off having blood work done through a reputable lab if you want family members to believe you. it may just be easiest to not discuss your diet with them.

our ped gi tells me it does NOT take much gluten to raise Ttg levels in a celiac. my daughter went into the hospital with Ttg levels nearly normal. after 3 months of the hospitals "gluten free food", she came out with her Ttg levels over 100. i really think that if you have been having symptoms for 5 years and been getting gluten approx once a week and your levels are still in the normal range that you probably do not have celiac disease. that does not mean that you do not have a problem with gluten, just that you don't have any evidence to show your family.

aren't rotation diets supposed to be good for avoiding or managing food intolerances? (not food allergies)

were those numbers for antigliadin antibodies, or for Ttg antibodies?

some reflux babies have milk-soy protein intolerance that either causes or aggravates their reflux. when we first took my youngest to a ped gi for her reflux the first thing he did was food allergy testing to rule that out as a cause of her reflux. alot of babies have silent reflux and hardly ever spit up.

maybe start with food allergy testing. does your daughter have reflux?

we are involved in a celiac study through the university of california, irvine. i asked the woman that is over the study about all these so called gluten sensitive genes. she was not aware of any gluten sensitive genes besides the two that have been identified for celiac. she told me that they know there are more genes involved. i think that enterolab is pretty much alone in naming all these gluten sensitive genes--------how long now has dr. fine been saying he is going to publish?

i'd recommend you have follow up blood work done-----this can really help to see how well you are doing with the gluten free diet. we check our girls' blood work about every 6 months, but we have done it sooner when the need arose.

if it helps----there have been alot of us that have cried in the early days of diagnosis.

one of my twins is going on her first date next week to the homecoming dance and i keep having to remind myself that she is old enough to take care of her eating arrangements----she hates it when i say too much about it.

i think i'd start with food allergy testing and go from there.

whoops!----i just looked at your post and saw that you've already done that. kids that age can get pretty wild just because they are kids---but i can understand your concern about the circles under they eyes.

Flaxseed Oil product was a excellent. Flaxseed Oil made me feel a whole lot better than I did before. I am happy bought it. I this Flaxseed Oil product to anyone who wants to maintain balance with themselves.

Read More: Open Original Shared Link

HUH?????

personally, i wouldn't assume anything based on those test scores. there is alot of controversy over enterolab-----and your test results are low compared to what most people seem to get from them. your Ttg levels, which would indicate celiac disease are normal and your antigliadin levels are only one point above normal----which could be caused by a number of different things. also, enterolab does not test total Iga serum levels.

since we have 3 girls with celiac disease, our doctor has recommended that we test everyone in the family every 3 years or so. only one of our kids has had gene testing done---and he carries one of the celiac genes but has no active disease. our doctor's recommendation with him is that we test him yearly----or sooner if he develops symptoms.

we have our house for sale right now, too-----it is so stressfull for me to try and keep it clean with 7 kids in the house. there are a zillion houses for sale in our little town.

she is too young for the tests to be accurate---some young kids do not produce Ttg antibodies until they are older. that being said, it is still good to test if you suspect it. kids that young can react to alot of different foods----and alot of them will outgrow those intolerances.

it is almost a guarantee that enterolab will tell you that you are gluten sensitive, save your money. i have a son that is IgA deficient and we tested him through promethius lab.

i still hate this disease---and i don't have it. when my girls were diagnosed, i wished that it was me instead of them.

i would not consider a slightly raised antigliadin antibody test a positive result for celiac disease. there are a number of things that can raise those levels----even constipation. it is much better to get Ttg levels tested. if it were me, i would do a little more investigating before i put my daughter gluten free----but that is just me.

campbell's bean with bacon USED to have gluten in it. i haven't read an ingredient list in ages on one of their cans. i will jump for joy if they have taken the gluten out of it! my mother just brought over a can of campbell's chunky split pea and ham and the ingredients are safe.

there are going to be plenty of times during the school years where substances will be used that are dangerous and/or toxic-----i don't intend on NOT allowing my children to participate in science experiments or art projects because of this. when i was in school we had a really exciting science class, and our teacher had us all tasting acid. tasting acid could have had some really serious consequences, but he took the necessary precautions and we got to do a really cool experiment. gluten is alot less dangerous than so many other substances our kids are going to come into contact with.

for my family, i'd rather teach my kids how to take the necessary precautions, such as gloves, hand washing, or a filter mask-----rather than not allow them to participate in an activity.

how old is your daughter? i was cautioning my daughter about checking ingredients on some "goo" she was playing with and she said, "mom, i know how to wash my hands."