Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

I Am The Minority!
0

13 posts in this topic

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!!

0

Share this post


Link to post
Share on other sites


Ads by Google:

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". :rolleyes:

0

Share this post


Link to post
Share on other sites

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?

0

Share this post


Link to post
Share on other sites

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. :blink:

0

Share this post


Link to post
Share on other sites




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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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?

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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 ;)

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,636
    • Total Posts
      921,533
  • Topics

  • Posts

    • Did your doctor check for SIBO, H. pylori, ulcers, etc. when he was obtaining biopsies to check for celiac disease?  
    • Oh, and as I mentioned in my own post on pain, xanax. I swear. I tried it just to deal with the occasional panic I had at weird scary symptoms and clueless doctors. I am not a fan of long term use. But I recently found that .25 mg seems to aid with the neuropathic pain. It does not go away, but it helps. 
    • It does sound like a Glutening and you are just a few months into the diet.  It might help if you read our Newbie 101 thread under the "Coping" section.   Here is some information about rice milk: https://www.verywell.com/is-rice-dream-gluten-free-562354 Many, many celiacs are often lactose intolerant temorarily or permanently if you are naturally genetically inclined.  When I am glutened, I lose the ability to digest lactose for a while.   Salad?  Great but it can be rough on a sore gut!  Think soups, stews, easy-to-digest foods that you prepare yourself until you feel better.  Did your folks give you salad after a bout of flu?  Or did you stick with jello and broth?  I am intolerant still after three years to garlic and onions (the lactose resolved, thankfully).  You have a leaky gut (Google zonulin and Dr. Fasano who is a leading celiac researcher to verify that this is true) and that means you can become intolerant to anything (hopefully, just temporarily).   If you are 100% sure that you have had no access to gluten....did you eat out lately?.....then see your doctor.  Remember, celiac disease symptoms can change.  And here is the biggie.....it can take weeks, months or years to heal from celiac disease.  Two months in is nothing, really.  Why?  It takes time to figure out the diet and time for antibodies to come down.  celiac disease is an autoimmune disorder triggerEd by gluten.  once triggered it can go on and on damaging your gut especially with repeated glutenings (accidental or through cross contamination). I hope you feel better soon!  
    • I concur! I literally feel your pain as well. Like, at the moment, lol. Did you have an endo to see inflammation or damage? I am close to begging my GI for carafate or something to coat and protect. How about testing your antibodies to see if they are still rising? I read somewhere here rice milk may not be a good option.  Folks here have also suggested to me to stick with whole foods. Limit processed. Especially stuff that is not certified gluten-free, like chex. I think small amounts of gluten are in processed foids and can add up. I too reacted to lettuce the other day like I was ingesting glass. My sibling  had a food sensitivity panel done and it came back positive for a few things he had been eating a lot of. He can now eat them, but had to cut them out of his diet. Lettuce is probably on mine.  I have been drinking carrot and pomegranate juice,  dandelion root tea with hiney, aloe water, lots of squash, fish. Mild, no garlic, no onions or hot sauce. No coffee. It sucks.  Inflammation can tick off other organs, you mention a "Pain below". Not exactly sure which side, but certainly call your doc Monday. Sooner if the pain increases.
    • You should see a GI specialist before you go gluten free.  They should do a upper endoscopy to check for celiac damage.  Colonoscopy won't show anything related to celiac.  Also no you should not feel worse on gluten free, you should feel better.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,639
    • Most Online
      3,093

    Newest Member
    NickyW_UK
    Joined