• Join our community!

    Do you have questions about celiac disease or the gluten-free diet?

  • Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
0
Skysmom03

I Am The Minority!

Rate this topic

Recommended Posts

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!!

Share this post


Link to post
Share on other sites
Ads by Google:
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:

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?

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:

Share this post


Link to post
Share on other sites
Ads by Google:


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.

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.

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.

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.

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?

Share this post


Link to post
Share on other sites


Ads by Google:


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.

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.

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 ;)

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
      108,917
    • Total Posts
      943,497
  • Member Statistics

    • Total Members
      67,105
    • Most Online
      3,093

    Newest Member
    DebLee Salzman
    Joined
  • Popular Now

  • Topics

  • Posts

    • I just saw your profile says thalassemia. My doc blames part of the microcytic anemia on thalassemia trait even though all my thalassemia gene tests have come back negative (and I don't have the right ethnic background). In a way I am hoping it is a FODMAP (carbohydrate) sensitivity instead of a gluten allergy because at least with the FODMAP you just have to stay low FODMAP and don't have to worry about crumbs and gluten cross-contamination like with celiac. I will check back in in 6 months once I see whether there are specific foods I can't eat or if it really does come down to gluten  Thanks for your support!!
    • Good for you for trying to manage your health.  My only suggestion would be to find another doctor.  Obviously, he does not even follow standard recommendations for screening.  I would worry that he overlooks other things too.  It never hurts to get a second opinion.  Second opinions have saved my family from unwanted surgeries and incorrect treatment.   The IgA (Immunoglobulin A) Test, in the case of celiac disease testing,  is a control test.  If he had ordered it, you would have known if the results are valid or not.  Now you are left in diagnostic Limboland.  Again, my TTG was negative it has never been positive even in follow-up testing.   You can go gluten free for life.  My hubby did that 17 years ago some 12 years prior to my diagnosis (per the advice of his GP and my my allergist).  But he will be the first to tell you that I get way more support from family, friends and medical. I wish you well!  
    • Okay so I had a peanut butter milkshake from steak n shake last night. I'm nearly positive that every thing else I've had recently has been gluten free. I have been feeling like my stomach is acting up a bit lately, but after this milkshake it is so much more intense. I considered maybe I'm sensitive to dairy too, but in the last few days  I've had plenty of dairy that didn't make me react  like this. The steak n shake website didn't list any real specifics on ingredients for milkshakes. I read in other forums that some shakes use a malt mix or syrup ( which I didn't see mentioned on the site), but it is corn based. I called the my local steak n shake and the guy said he is "pretty sure" it's corn based.  I called the customer service line and they couldn't tell me if it was gluten free or not. I found ONE listing on a website that said all shakes were gluten free expect peanut butter and one other flavor. I know this seems like a lot for one shake, but I'm so tired of not knowing what makes me sick. Has anyone else had an experience with this or has anymore knowledge about steak and shakes products?
    • So my tTG-IgA result came back negative. Doc did not do the total IgA so I could be in the 2% false negative. However my ferritin continues to fall (at 25 now so getting borderline to need another iron infusion, 6 months ago it was 50) and reflux was keeping me up at night so after the blood test I went on a gluten free and low FODMAP diet. 6 days later my reflux is gone! I had no idea it could work that quickly. I still feel like there is a lump in my esophagus and have a bit of difficulty swallowing (think I still have irritation in that area) but no more acid and regurgitation! Also have not had a single episode of gas or urgency or days with 8 BMs.  It has only been 6 days so maybe I am just having a good spell but am going to continue gluten free and low FODMAP for a month and then see if there are any FODMAP foods I can eat (but not gluten unless my doc decides I should have a biopsy) (I miss pears and apples). I guess the real test is to see if my ferritin levels start to go up-testing again in 6 months. The diet is very restrictive but worth it if it gets rid of the reflux and other symptoms. BTW post-menopausal (and before that I had an IUD for 10 years TMI) so no periods to blame for chronic microcytic/hypochromic anemia. Doc says "that's normal for you, you just don't absorb iron very well".
    • Did you know that there are so many issues and questions surrounding celiac disease that even doctors who specialize in it find that the scientific data changes every six months, and this includes research data, new diagnostic and testing recommendations, and its connections to other diseases and conditions. In fact, many of us who think we have "arrived" and know it all might actually need a refresher course on the disease. View the full article
  • Upcoming Events