12 replies to this topic

[Skysmom03]

I am the minority in my household. My husband and son both have celiac disease. My husband had it for years ( he is also a type 1 diabetic) and he became really sick, lost 40lbs ( he only weighed 145 to start with) when they finally discovered it. He had gotten so bad, he was told to start the gluten free diet even before the endoscopy. Apparently , his intestines were some of the worst his doctor had ever seen.
At the doctor's request, we had our son checked for it at his 9 year physical, and three weeks ago, it was confirmed. He too has it and probably has for around three years. No symptoms -- healthy looking kid-- the ped GI didn't even think he would have it.... SURPRISE!!
I am glad I had a year to adjust to the diet, and I think it helped my son come to terms with it as well! He is so good. He knows pretty well what he can and can't have. He will ask if he doesn't know and he will just not eat if he feels there is any uncertainity( his after school provider told me this!!).
I am always worried about if we have gotten rid of it all ( soaps and other mon food items) and I am always concerned about all the bad things they are more prone to get because of this disease.
I am thankful this is something we can "fix". There are a lot worse things to have !
Is anyone else out there who is in the minority! I would love to have some others to turn to with questions or help if possible!
I just think it is kind of humorous. 1 in 133 people have it, but 2/3 in my house have it! How did we get so "lucky"? I wish we were this lucky with the lottery!!

[gary'sgirl]

So far, out of six of us, five are either Celiac or gluten intolerant. The one we aren't sure of yet is our sixteen month old little guy, who hasn't yet had gluten in his system.

Sometimes I wonder if the 1 in 133 is really a gross under estimation.

Some families get all the "luck".

[Skysmom03]

Wow.... If that isn't proof fight there that the rest of my husband's family shouldn't get check out I don't know what is!! I am assuming some of those are school-aged children. Do you have any issues at school with friends and teachers and so forth?

[shadowicewolf]

i'm the only known one my moms side. It is hard.

[gary'sgirl]

Wow.... If that isn't proof fight there that the rest of my husband's family shouldn't get check out I don't know what is!! I am assuming some of those are school-aged children. Do you have any issues at school with friends and teachers and so forth?

My oldest is 7, and we decided to homeschool.

We had been thinking about homeschooling before the diagnoses, but when we found out that she had Celiac too it soon became clear that going to public school would be too difficult to keep her healthy enough.

She is extremely sensitive to the smallest trace amount of gluten. Only just this year (three years into the gluten-free life) have we been able to take her to stores without her regularly getting "glutened".

We decided homeschooling would be the best choice for her, because even going to church became a huge problem. We had to stop taking her for a while, because she would get exposed every single sunday and her system was over taxed. (she has DH along with all the digestive stuff)

We have had trouble with friend, even I have with my own friends. I think it's especially hard when the kids are so young and they just don't pay as close of attention to things as they need to in order to not get any exposure. So, for now we don't see friends a lot. We just recently moved, so we don't have many anyway, but thankfully we are now in the same city as my family. My sister has kids that are the same age as mine and they just found out about six months ago that they are also haveing problems with gluten and now have a gluten free house. So, that makes one family with kids that we don't have to worry about.

Have you had much trouble with friends or public situations?


Oh, I thought you might like to know that my mom and two of my sisters also have Celiac, and my other sister and my dad are gluten intolerant. That's six out of six.

[Skysmom03]

No not much trouble with friends but then again he has only had to worry about this for three weeks. He has a 504, so there are guidelines they must follow. We pack his lunch and he has a goody stash there for treat days. He also knows what ice creams he is allowed to have on ice cream days. He is a little older and he understands for the most part what he can have. He will ask to make sure he can have "different" things--- if he is too uncertain--- he will just not eat ( ie snacks at after school care--- but that is not too big an issue since I sent her a list of snacks that are okay-- see has extra fruits around just in case). Skylar is scared of getting lymphoma so he won't eat unless he knows it is okay. We are also teaching him how to read labels as well.

[shadowicewolf]

504 plans are very helpful in this case. I was on one for different things (including whats listed in my sig). They HAVE to follow it or else get in trouble.

[Skysmom03]

Yeah.... They didn't really want to write one and probably would have talked an ordinary person out of the need for it, but I taught sixth grade for 14 years ( now the media specialist) and my husband has taught for 22 years, so we knew the importance of having one and why and that they legally could not deny us one.

[1974girl]

My dh has type 1 but no celiac (as of now). My celiac daughter has no symptoms either. I wonder if there is a connection. My daughters genes are the same as his dq 2 and 8. We have been told that we are lucky to find the celiac first and by going gluten-free we may be reducing the risk if type 1. We also take 1000 mg of vitamin d due to recent diabetic research. I do not have celiac either but obviously carry the gene since my dd has two.

[Skysmom03]

Well I hope that is correct. I really don't want him to have type 1 but I know it is a possibility. We have never had thd testing done. We went right for the antibody test at the first physical after my hub's diagnosis. How long has she had it?

Hopefully you and your husband can be spared. Do you get tested for it regularly or are you just waiting for symptoms to begin?

[1974girl]

We did get tested at first but will not continue until symptoms. 30% of people carry it and yet they don't get tested every year. My other daughter has been tested twice and we will probably test her every 3 years. My husband says he will not do anything different if he has it. (Roll eyes). Actually I read an article that less than 50% of people who have diabetes and celiac are compliant with gluten free. Just too many restrictions I guess. Among non symptomatic people it was even lower. Oh you asked how long she has had it. She has had low thyroid since 7 and they did the celiac test every few years due to the connection. At 11 it was positive. We found out a few days before this past Christmas.

[CarolinaKip]

I am, but the opposite. I have four siblings and none have celiac like me. However, I do have a sister with Lupus. I'm the only one in my household to date, that has Celiac.

[Darn210]

Wow.... If that isn't proof fight there that the rest of my husband's family shouldn't get check out I don't know what is!! I am assuming some of those are school-aged children. Do you have any issues at school with friends and teachers and so forth?

Only my daughter has Celiac but I wanted to comment on this . . .

She was diagnosed in Kindergarten. I don't think she really remembers eating any other way. She's had no problems with school friends or the school. We don't have a 504 but I wouldn't hesitate to get one if the school gave me any issues. Three years ago the school district started offering a gluten free hot lunch program. You have to have a doctor's note to be eligible for it (which we've got). She gets a few of the lunches but prefers to take her lunch most of the time.

I think these days, at least in our school district which is quite large, there are so many food allergy issues. All the kids know at least one or two kids with peanut issues . . . so special diet concerns aren't really abnormal. My daughter is very matter-of-fact about her diet. She's not embarrassed about it. We have her order her own food at restaraunts so that she's comfortable doing it. I think a kid that projects self-confidence about a dietary issue and shows control has the best chance of making it a non-issue . . . as far as friends are concerned. She would be at a sleep-over every weekend if we would let her. She packs snacks to share (mainstream stuff like microwave popcorn and fruit chews) and chex cereal for breakfast. She eats supper before she goes or takes a hot dog to microwave. She recently went to a Halloween sleepover and she took cookies (the ones in my av) which were a huge hit . . . it's all about the icing, you know