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

Is This Common?


Mnicole1981

Recommended Posts

Mnicole1981 Enthusiast

Is it common to start suggesting to family members who suffer the same digestive issues that you have get tested?

I have probably been driving my family nuts with all of this because I have no diagnosis of anything. Everything points to Celiac disease, but if I could just get one person in my life to care, it would be appreciated. I feel like I have been dealing with this on my own.


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



Celiac.com Sponsor (A8-M):



Adalaide Mentor

Everyone I'm related to by blood lives 1000 or 2000 miles away. I haven't let that stop me! My husband has had the blood tests which like mine came back negative, fortunately his doctor knows that means nothing. I was diagnosed by biopsy, but our insurance won't pay for an endoscopy and we just don't have the money for it. So instead I have finally after almost 6 months nagged my husband into trying gluten free. It's so painfully obvious to me and he is finally willing to admit that gluten may be his problem. I call it my sixth sense (like the movie), I see celiac people.

IrishHeart Veteran

Yup, I always say I am like that little boy in the movie Adalaide mentioned.

I SEE CELIACS....everywhere. :ph34r:

I have educated my large extended family ---full of AI diseases and GI troubles ---and not one (except my Mom) has done a thing about it.

And yet, perfect strangers listen to me. My cat's vet, the dental tech, the phlebotomoist who draws my blood, the UPS guy---all went to be tested.

Are any of them celiacs? yup!

Are any of my family celiacs? Oh, you betcha.

I can talk about it until I'm blue in the face, but until someone gets as sick as I was, they will not believe it. They think I am the only one. (no, I am just the FIRST)

I gave up. They know where to find me if they want help. I lost enough sleep over it.

Don't make yourself crazy over it.

Mnicole1981 Enthusiast

Thank you. I will definitely try. I would like to be okay with my self-diagnosis, but while I feel a little bit better, there are still new things happening that worry me.

nvsmom Community Regular

I just came here to write the same thing about my mother. She says she is healthy and just has stomach issues and joint pain and heat rash and fatigue... UGH! I am almost sure she has it but she's talking about how she can eat gluten moderately and she will be fine. I argue with her but...

I told her that I'll call to nag her everyday until she gets tested. lol :rolleyes:

psawyer Proficient

You can mention it to family members. All first degree relatives of a diagnosed celiac should be screened for it.

It is common for them to refuse the idea, and there is no point in nagging them--it will only hurt your relationship with them in the long run. Mention it once--then move on.

Many claim that they are fine; many have overt symptoms, but deny that gluten has anything to do with it; many are scared of the idea of having to eat gluten-free--they would rather keep suffering.

For those who have not actually done the gluten-free diet, it sounds impossible. Even for those of us starting out, it is a major challenge. After 12 years, for me it is not a big deal. But my first year was a steep learning curve, and I did not have the benefit you do of this online support group.

IrishHeart Veteran

I told her that I'll call to nag her everyday until she gets tested. lol :rolleyes:

Don't bother. I pressed my sister (diabetes, hypothyroid, high BP, etc. etc.) because I know siblings should be tested and her symptoms are obvious, but it just irritated her and I backed off.

I worry about her, but as my doctor (and Peter)both have pointed out, she does not want the hassle of dealing with a gluten-free diet and prefers to manage her symptoms with medications and remain status quo.

She an intelligent woman. I know she reads all the info I send her and so, I have to respect that decision.


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



Celiac.com Sponsor (A8-M):



Mateto Enthusiast

I've been noticing lately a lot of my family members (and I mean a lot) are having gastric, arthritic, mood, and thinking problems....so I'm positive that coeliacs is in my family.

nvsmom Community Regular

Ahhh, yes. But my mother understands nagging, I think she sees it as a way of expressing her love. Maybe it is our Ukrainian Polish background.... Lol

I hear what you are saying though. For my brother, I told him, gave him info to look into and advice on how to get an accurate test and he'll decide whether to test based on that.

My mom on the other hand won't do any research and comes up with her own ideas based on.... I don't know what. She obviously ddin't believe me when I told her that her niece's celiac was not caused by an eating disorder as a teen. I only say I'll nag her becAuse it will work and she understands it.

Thanks for your advice.

Mnicole1981 Enthusiast

I've been noticing lately a lot of my family members (and I mean a lot) are having gastric, arthritic, mood, and thinking problems....so I'm positive that coeliacs is in my family.

Me too. My sister had pasta last night and just kept burping and passing gas all night. I notice everybody's problems now.

veruca Newbie

My parents and sister were tested and no one has it. I really thought my Mom had it. She has so many health problems that I almost wanted her to have it so she could start to feel better. No dice though. Blood tests were normal and so was her endo.

I have a cousin with fibromyalgia who I've urged sooo many times to be tested. Some people are just too overwhelmed with the idea of going gluten-free. Maybe I wouldn't have sought out a GI to figure out my issues if I had thought for a second that I could have celiacs.

~**caselynn**~ Enthusiast

Is it common to start suggesting to family members who suffer the same digestive issues that you have get tested?

I have probably been driving my family nuts with all of this because I have no diagnosis of anything. Everything points to Celiac disease, but if I could just get one person in my life to care, it would be appreciated. I feel like I have been dealing with this on my own.

When I was diagnosed my GI doc suggested I tell other family members about it so they could get tested if necessary. I have mentioned it a few times, but I figure it's ultimately their decision. Although, I don't refrain from bringing it up when I hear them complain of their gut issues! Haha no better time to have that discussion! :)

Raven815 Rookie

Hi there,

I have an opposite story. My Mom has had celiac for about 30 years and for a long time she has nagged me that I had it. I never had any symptoms and have always had a weight problem. I have had many auto immune diseases, but thought because I didn't have gut issues and was heavy, there was no way I could have it. Lo and behold, at 49 years old, I became very sick w/ DH. I ahve now had two tests come back positive for celiac (biopsy & celiac blood panel). I am dumbfounded. My Mother is gloating (not really). Now it's my turn to convince my sisters and extended family to be aware. I'm sure none of them will listen to me, either. All I can do is try.

Laura :rolleyes:

  • 1 month later...
Gemme Rookie

I think we should have a discussionamong family members. All first degree relatives of a diagnosed celiac should takeit seriously. I have tried to explain my family but no one has done anythingabout it. But there are visitors who listen to me and are living a better life,until they get as sick as I was, they will not believe it. They think it

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. - 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.

    2. - 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.

    3. - 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.

    4. 0

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

    5. - 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.

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

    • Total Members
      133,329
    • Most Online (within 30 mins)
      7,748

    klkarius
    Newest Member
    klkarius
    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
      @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. 
    • trents
×
×
  • 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.