Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

I Am The Minority!

Skysmom03

Recommended Posts

Skysmom03 Newbie
Skysmom03
Posted

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!!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


gary'sgirl Explorer
gary'sgirl
Posted

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:

Skysmom03 Newbie
Skysmom03
Posted
  • Author

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 Proficient
shadowicewolf
Posted

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

gary'sgirl Explorer
gary'sgirl
Posted

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:

Skysmom03 Newbie
Skysmom03
Posted
  • Author

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 Proficient
shadowicewolf
Posted

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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Skysmom03 Newbie
Skysmom03
Posted
  • Author

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 Enthusiast
1974girl
Posted

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 Newbie
Skysmom03
Posted
  • Author

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 Enthusiast
1974girl
Posted

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.

  • 2 weeks later...
CarolinaKip Community Regular
CarolinaKip
Posted

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 Enthusiast
Darn210
Posted

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 ;)

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      @Jane02, I hear you about the kale and collard greens. I don't do dairy and must eat green leafies, too, to get sufficient calcium. I must be very careful because some calcium supplements are made from ground up crustacean shells. When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly. This is safe...
    2. Jane02
      - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency. I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently...
    3. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Hello, @Jane02, I take Naturewise D 3. It contains olive oil. Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets. Fractionated coconut oil is not the same as coconut oil used for cooking. Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the...
    4. Scott Adams
      0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

      until
      Hello! Join me and treat yourself to a four-day, three-night restorative gluten-free retreat in a peaceful, private coastal retreat setting near Penobscot Bay in Maine. Dates: April 10-13, 2026 Enjoy engaging classes...
    5. Scott Adams
      - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,327
    • Most Online (within 30 mins)
      7,748
    dnamutant
    Newest Member
    dnamutant
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Scott Adams · Posted

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By trents · Posted

      Contact them.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.