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
      103,634
    • Total Posts
      918,415
  • Topics

  • Posts

    • amalgam dental fillings - remove or not?
      My friend, I'm sorry to hear of your pain. I don't know if mercury is related, but I will give you my brief experience. I went through so many health issues, medications, and dr's and nobody could find anything wrong with me, but I knew something was wrong. I've been through many doctors, shots, pills, etc and nothing helped. For me it all came down to gluten. I had blood tests that shown the antibodies and the endoscopy that proved I had celiac, which I don't think is needed. If your body makes the antibodies I can't help to believe you have it. Anyway, long story short. If you are sick, you are sick and if a doctor can't find the reason, move on to a new doctor. Celiac, at least for me was simple. Stop eating gluten and every other health problem goes away. I have 30 + year old amalgam fillings and I feel amazing as long as I don't put anything in my mouth that isn't naturally gluten free, which means I only eat meat and vegetables. Our bodies are all different. I guess my only advice to you is if you're sick, your sick. Nobody lives inside your body but you and you know best if you feel better. Don't be afraid to stand up for yourself. 
    • healthy bread recipe?
      Ok thank you for the input! I am happy to hear what you think about her biopsy. Her GI is actually getting a second opinion from the celiac specialist. Our appointment is in a week. I have always thought she had celiac too. I asked them to do a biopsy years ago and they did but it was normal. She has more neurological symptoms than GI. She has headache and POTS. But she was reacting to all kinds of foods all of the sudden a few months ago. The low histamine diet really helped and she tolerates more foods now. I make almost everything from scratch, there is no gluten anywhere in the house and I don't use gums because she and I react to them. Breakfast is the hardest. Eggs are high histamine, she can't have oats, can't have fermented foods (yogurt), Breakfast is a nightmare. Many fruits and veggies are high histamine. She eats the ones she can tolerate. That's why I was asking about breads. What do you eat for breakfast? Are flax seeds safe or are they like oats? I can't find any flax seeds that say certified gluten free.
    • Could this be celiac or is it really just IBS?
      Hi! So I've never posted in a medical forum but y'all seem super helpful so I figured I'd throw this out there! Sorry if this is long lol. Basically, I'm a 22 year old who has stomach problems for as long as I can remember and it's recently gotten worse. I remember having bad stomach aches and diarrhea off and on since I was little. I finally told my parents and saw a GI in high school who took an xray, said it was IBS, and told me to eat more fiber. Around the same time I was feeling weak all the time and I was having what kinda felt like panic attack symptoms without the actual psychological panic. It kind of felt like a hot flash or too much adrenaline? I just kept telling the doctors that I felt "off". I was also diagnosed with atrial flutter, sinus tach, and asthma for no apparent reason, and I just felt like crap in general some days with no explanation.  I leaned to deal with my stomach problems because everything seemed to come and go. Oddly enough when I went away to college it was a little better for my first year or two. Fast forward to about a year ago, and it started getting more consistent so I went to a new GI. She ordered an ultrasound of my abdomen and from there I actually found out that I had a poorly functioning gallbladder (without stones). I had that taken out in November and have not felt any better since. What's weird is that I never had what I would consider "gallbladder pain", as there really isn't a particular spot that hurts every time. Also I want to add that I am a super levelheaded person, so my doctor telling me it's IBS and to cut stress and see if it helps makes me roll my eyes. This is often how my diarrhea starts off these days: I'll feel bad hot flashes or just "off" and foggy for no reason, then hear the gurgles, get pain, and then diarrhea. Most of the time I feel better after that; sometimes I don't. But I think it's weird that I often feel fluish before my stomach even starts hurting.  Basically I just have all these weird vague symptoms that don't seem related and have been coming and going since at least high school. My current GI doc ordered IGA and IGG tests last summer which came back negative. She also did a colonoscopy a few weeks ago and that was negative too. Now she wants to do a small bowel xray with barium.  Here are my main symptoms: diarrhea 2-6 x a day (it ranges from just loose stools to full-on watery)  severe bloating to the point I look pregnant weird hot flashes that seem correlated to my stomach problems headaches had my gallbladder taken out even though I'm 22 and normal weight short stature (4' 10") nausea bad eczema   Does this really seem like IBS or could my blood results be wrong? My doctor seems to think she's thoroughly tested me for celiac. Would the small intestine xray show any of that? Thanks in advance!!!    
    • Diagnosis and Test Results
      I have been struggling with  symptoms for over a year and had lots of other testing done by my GI.  She did the celiac disease blood test a few weeks ago.  It came back positive for the two genetic markers but my antibodies were negative.  I received the results by phone from the (stupid) nurse who only relayed to me that "your tests showed that you are positive for Celiacs Disease.  you need to go on a gluten free diet and follow up in a few months".  I was so surprised by what she said it didn't even occur to me to call the doctor directly so I took it upon myself to research the disease and going on a strict  gluten free diet.  The first two weeks were horrible!  EVERYTHING I ate gave me diarrhea.  After two weeks, I started to feel better but anytime I inadvertently ate gluten by accident or was cross contaminated, I had horrible diarrhea again.  I spoke with my GI doctor today (I work at the hospital where she works) and she explained the blood results better to me.  (I still haven't expressed my anger about the nurse to her yet...but I will!) It doesn't make sense to me that I have the gene, have been experiencing IMO full blown symptoms (significant weight loss, malnourished, diarrhea, migraines, increased depression/anxiety, etc) but my antibody test was negative.  Could it be lab error?  I asked about an endoscopy and she said we could do it but it still may not confirm the disease.  I've also researched IBS and I don't seem to match up with those symptoms. Part of me wants to know if I have a gluten intolerance or the actual disease.  Either way I'll continue to follow the gluten-free diet but I think it's important to know if I have an autoimmune disease correct?  Or does it? Just looking for some guidance...
    • healthy bread recipe?
      Absolutely, absolutely, absolutely!!!!!!! Your doctor seems to think all her villi have to be completely wiped out for her to be celiac. Like cyclinglady says.... get the records & get a second opinion. BTW, I happen to agree with all the rest she said too but I just wanted to emphasize the second opinion part.  
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • celiac sharon  »  cyclinglady

      Hello cycling lady, have you noticed my picture is showing up as you?  Have no idea why but it's rather disconcerting to see my picture and your words 😉  Do you know how to fix it?  You seem to have far more experience with this board than I do
      · 1 reply
    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,724
    • Most Online
      1,763

    Newest Member
    xwalt
    Joined