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

My Sister Has It


laurelfla

Recommended Posts

laurelfla Enthusiast

hi, y'all --

my sister just called a half hour ago and had gotten her bloodwork back.... guess what... positive. :( i feel a lot of different things... somehow guilt, like i brought this on all of us (which i know isn't true!), and sadness for her that she will have to give up foods she loves, and some relief (which i feel guilty for) about the holidays coming up and not being the only special dieter in the group.

i just can't believe it. my family is all getting tested just to check, but somehow i never thought she'd really have it.

i think she sees me as a sort of pioneer in our family ;) for learning all about the diet and coping on my own. (she lives in north Mississippi, btw, parents are in AL.) i'm glad to be able to help out and i also couldn't believe how much i'd learned... for instance, she asked me if my brother-in-law could kiss her after he'd had a beer. i was like, "NOOOO!" and then i smiled bc i remember asking questions like that that now seem so obvious to me. ;) i've come a long way!

she's going to eventually get a biopsy, but with positive bloodwork and me to boot, there's no way she doesn't have it, i guess.

just think about us.

thanks!


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



Celiac.com Sponsor (A8-M):



skoki-mom Explorer

Wow! You are just like me and my sister, except it was my sis who was Dx first and I got screened and have it too. Personally, I'm a little suspicious that she is very happy I have it too, cuz now she's not the only one swimming in the shallow end of the gene pool!!! I have to admit I was a tad pissed at her (totally irrational I know), because she seems to have a knack for wrecking things for me! LOL

Did you sister have any symptoms?? I didn't have any, I never thought I actually had celiac disease! But, you are right, when more than one person in a family has it, it makes family functions more gluten-free friendly. For instance, I'm making gluten-free stuffing for my Thanksgiving turkey and the rest of them are going to have to eat it! How is your sister coping with it so far??? My sister at first tried to police what I ate and I finally had to say to her "shut up! I'm not stupid!", lol.

Well, I'm sorry your sis has to deal with this too, but I'm glad you aren't alone! I can really relate to the mixed feelings. ((Hugs)) to you both.

taweavmo3 Enthusiast

It's great that your family took your advice to heart and got tested. You really did them all such a huge favor, if they don't realize it now, they will. I wish my family would be as receptive to the idea. My brother, who is 27 and has always been sick as a dog, isn't very keen on getting tested or going gluten free. He said he tried the diet, but it is too hard. He and his wife have been trying to get preggo for two years, but he still won't stick to the diet. Then there's my mother, who also has alot of symptoms.....but would rather take pills than try a diet because she doesn't want to give up her sweets, UGH.

Anyway, don't mean to vent on your post! I just think it's great they listen to ya and take it seriously. That's such a blessing, and not that you'd wish celiac disease on anyone, but it will make family functions much easier! I've gone on the diet with my celiac daughter, and although I didn't have testing, I feel better than I can ever remember. I had gluten a couple of weeks ago, and felt miserable, physically and emotionally. The emotional part was worse....I felt so depressed. I've tried telling my family how much better they could feel, and that once you feel healthy, it's very easy to turn down any and all gluten filled treats. But, no one listens! Oh well, maybe they will one day.

Congrats on having someone else to share your gluten free experiences with, a little support goes a long way!

laurelfla Enthusiast
Personally,  I'm a little suspicious that she is very happy I have it too, cuz now she's not the only one swimming in the shallow end of the gene pool!!! 

<{POST_SNAPBACK}>

haha! you made me laugh. :D it's really weird bc i never would have thought anything was wrong with me until D, nausea, etc. started to happen in May. if any of us had ever heard of this, we would have had my sister tested, bc she's had stuff going on digestively for a while. so it's strange that i was the one who found out first.

she seems to be handling it really well. when she talked to me, she sounded a tad overwhelmed but cheerful. she said she'd cried about it earlier, though. i sent her a bunch of links and some recipes, but i don't want to overwhelm her more, so i'm going to hold off until she asks for anything.

her doc seems to be up on things (he admitted he'd done some research since she'd asked for the test) and he tested her vitamin levels yesterday.

i still can't believe it, though. now my dad has to get on the ball and get tested! i think he's the guilty party!! ;)

taweavmo3, vent away! i'm all in favor of venting. i hope your family gets tested soon! i can see how that would be very frustrating for you. so yes, i do feel blessed that my family took my diagnosis to heart. my boyfriend -- not so much... i think he should get tested bc he has plenty of the symptoms... but he said last night -- "as long as i don't get tested, i don't have it!" aaaargh!!!

SharonF Contributor

That's an interesting comment about the mom who doesn't want to give up her sweets--I guess you mean baked goods?

Because I sure haven't given up candy since being diagnosed! Twix bars, sure, but M&Ms are still okay.

LLCoolJD Newbie

I have a sibling with Celiac disease as well. Both of us went on the diet around the same time and had similar remarkable turnarounds in health. I think it helps you cope with something when a sibling is also dealing with it.

laurelfla Enthusiast
I have a sibling with Celiac disease as well.  Both of us went on the diet around the same time and had similar remarkable turnarounds in health.  I think it helps you cope with something when a sibling is also dealing with it.

<{POST_SNAPBACK}>

i think you're right... we're already close, but this is bound to bring us even closer! i talked to my mom today and she remarked on how it was going to make the holidays interesting. i told her i'd already found a recipe for stuffing here! :) thank you all for your replies -- it helps to know someone is out there listening!


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



Celiac.com Sponsor (A8-M):



Archived

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

  • 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. - SilkieFairy replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      IBS-D vs Celiac

    2. - 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.

    3. - 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.

    4. - 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.

    5. 0

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

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,336
    • Most Online (within 30 mins)
      7,748

    Jeffrey Yeres
    Newest Member
    Jeffrey Yeres
    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

    • SilkieFairy
      Thank you both for the replies. I decided to bring back gluten so I can do the blood test. Today is Day #2 of the Challenge. Yesterday I had about 3 slices of whole wheat bread and I woke up with urgent diarrhea this morning. It was orange, sandy and had the distinctive smell that I did not have when I was briefly gluten free. I don't know if it's a coincidence, but the brain fog is back and I feel very tired.   
    • knitty kitty
      @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
      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
      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
      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. 
×
×
  • 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.