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

Family Members And Testing

lilypad23

Recommended Posts

lilypad23 Explorer
lilypad23
Posted

I was diagnosed with Gluten Intolerance through Enterolab in September. Since then, I have tried to get my aunt on my dad's side to get tested because she has been told for years that she has IBS. She has many stomach problems, she is overweight, has diabetes, and has heart problems. When she was about my age, she got the skin prick allergy testing done and was told that she was allergic to wheat, milk, and many other things. However, she still consumes foods containing these things and still has many problems. Yet, she absolutely refuses to get tested. I've pretty much dropped the subject, but I really worry about her. Has anyone else ever had problems like this with family members? Is there a way to convince them that it might be a good idea to get tested?

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

Celiac.com Sponsor (A8-M):


Gemini Experienced
Gemini
Posted
I was diagnosed with Gluten Intolerance through Enterolab in September. Since then, I have tried to get my aunt on my dad's side to get tested because she has been told for years that she has IBS. She has many stomach problems, she is overweight, has diabetes, and has heart problems. When she was about my age, she got the skin prick allergy testing done and was told that she was allergic to wheat, milk, and many other things. However, she still consumes foods containing these things and still has many problems. Yet, she absolutely refuses to get tested. I've pretty much dropped the subject, but I really worry about her. Has anyone else ever had problems like this with family members? Is there a way to convince them that it might be a good idea to get tested?

This is a very common problem for many compliant Celiacs.....stubborn family members who refuse to believe they may have it also and think they will die if thy have to give up gluten. My own family all have symptoms and many autoimmune diseases amongst them but have gotten petty nasty at times when I tried to press the issue. So now I am patiently waiting and watching as some of them get sicker and sicker and when they become sick enough, they'll probably ask for advice or help. When you hit the wall, denial is no longer an option. Be patient but try not to bite your tongue too hard! ;)

dandelionmom Enthusiast
dandelionmom
Posted

I've encouraged all of my family members to get tested ever since my daughter's diagnosis. We've all got a crazy history of "stomach problems." So far, it looks like only two people have taken me seriously and the others just roll their eyes. I'm hoping that each family member who gets a diagnosis will encourage a couple other family members to get tested. It is slow going, try not to get frustrated. :)

babygirl1234 Rookie
babygirl1234
Posted

in my house im not the only one with celiac disease my 9 yr old has it, my 6 yr old has it my 3 yr old has it, and my 1 yr old has it, thanksgiving is going to be hard with my family, but i'll take something for us that has celiac disease something that we can have, my hubby asked me "are you sure the other children dont have it" im like they havent showed smt of it, Sean said to me "we should own wegmans or the heath food store lol" but they are handleing it pretty well,

SillyBoo Newbie
SillyBoo
Posted

I am very sympathetic! My family members are also very resistant.

I spent decades feeling borderline sick and got labeled as a hypochondriac by my family. Now that I know what caused all of that, and am finally starting to feel better, most of my family dismisses my celiac as my latest diet fad. Except for one brother, who took my advice and put his 2 year old autistic daughter on a gluten-free/cf diet, with amazing results! Even though the rest of my family sees what this has done for her, they still dismiss what I say.

So, the only thing I can suggest is that you aim to help the youngest members of the family. There may be more openness to hearing what you are saying, and maybe eventually others will be willing to hear and act.

Good luck!

bookworm Newbie
bookworm
Posted
I was diagnosed with Gluten Intolerance through Enterolab in September. Since then, I have tried to get my aunt on my dad's side to get tested because she has been told for years that she has IBS. She has many stomach problems, she is overweight, has diabetes, and has heart problems. When she was about my age, she got the skin prick allergy testing done and was told that she was allergic to wheat, milk, and many other things. However, she still consumes foods containing these things and still has many problems. Yet, she absolutely refuses to get tested. I've pretty much dropped the subject, but I really worry about her. Has anyone else ever had problems like this with family members? Is there a way to convince them that it might be a good idea to get tested?

My daughter was diagnosed 2 weeks ago, and I really want my college-age son to get tested. I am going to insist, but I am really sort of afraid of the results. He will not want to take care of himself the way my daughter does. It is hard with him living so far away.

lilypad23 Explorer
lilypad23
Posted
  • Author

Thank you guys for the advice. I really appreciate it.

SB, my family basically labeled me a hypochondriac, lazy, etc... for years and my mom still thinks I'm a hypochondriac. But, anyways, that's awesome that you were able to help your neice. :)

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

Celiac.com Sponsor (A8-M):


  • 1 month later...
ryebaby0 Enthusiast
ryebaby0
Posted

I think there is nothing as annoying as a newly-diagnosed person who feels they "know" what other people have. :) When we were dx, all I did was email all our family in a blanket email, explaining the heredity factor and suggesting that if they were getting other bloodwork done, adding tTgs in would be wise. I don't know who followed that, and who didn't, because they are grown-ups and their health is their concern, not mine. (and the opposite is true as well. I don't much care if Aunt Edna "believes" that my son can't have toast or not. Not her call, not her problem, so she's just background noise to me...)

tarnalberry Community Regular
tarnalberry
Posted

there's not really anything else you can do. it's her decision, whether you support it or not. it's the same thing we want from people who don't believe us - for them to accept that it's our decision, whether they support it or not. you've let her know of your concern, and then backed off. that's all you can do.

loco-ladi Contributor
loco-ladi
Posted

I have simular issues with my family, I have intollerance at the least my cousin (maternal)is a diag'ed celiac disease altho i hear she cheats quite frequently on the diet...

I have tried to get my mother and sister to at least concider the possibility and so far my sister just ignores me and my mother now is "thinking about it"

Patience is a virtue and it is their health not mine so........ I will be patient and SWEAR I will NOT say "I told you so" when they find out their results.

  • 2 weeks later...
Tazzie Newbie
Tazzie
Posted

I just got diagnosed and I am convinced my husband has it.. bloated stomach, ( looking 9 months pregnant, bloated stomach ) stomach problems, bleeding ulcers.. rheumatoid arthritis.. so on and so forth and I cannot convince him to get tested or to try to go with our gluten or wheat for a week..

He already thinks since I have it he is going to starve to death..

I can help him to be gluten free with the food I cook at home, but I can't control the junk he eats when he is at work

psipsina Rookie
psipsina
Posted

I'm in a unique situation because I am a medical student so friends and family actually come to me for medical advice alot. I never push it but if I think they have possible symptoms I always mention it and offer to elaborate more if they are interested. One of my best friends tried to do my candida diet with me for moral support two years ago and couldn't stick with it because her cravings were soooo bad which was proof positive for me that she needed it as badly as I did. About a year later she asked if there was any test she could do and I told her about the spit test which came out positive but she still didn't do anything because she is so intimidated by giving up bread. I haven't pushed it at all and yesterday she called me and asked more about the diet and for advice and discussed some of her fears with me. She is going to see a naturopath to get tested. DH is definitely gluten intolerant but doesn't want to admit it. He did a gluten-free/CF diet for about a month and really had improvement with his GI symptoms but decided in his head at some point that it wasn't worth it. My house is gluten-free but he has beers and sandwiches and pizzas at work and with his buddies (he works in a microbrewery so its sort of hard to blame him lol). I don't push it with him either and only say something when he asks me for advice. Just the other day he admitted that his GI symptoms had started up after having a beer and said that he's going to go gluten-free/CF again. I don't think you can push it or they just get defensive. I have a cousin who has severe autoimmune disease and I suggested that she see a naturopath but her mom won't take her for whatever reason. That one bothers me the most because her disease is killing her and she's in the hospital all the time but I don't say anything unless they ask for my advice. It is frustrating though.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,550
    • Most Online (within 30 mins)
      7,748
    Blough
    Newest Member
    Blough
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Taken Seriously

      By Scott Adams · Posted

      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      Looking for a gluten-free roomie in Denver CO

      By Scott Adams · Posted

      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Allergy medication: cetirizine by the HealthA2Z is it gluten free?

      By Scott Adams · Posted

      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      Protein or fat?

      By Scott Adams · Posted

      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • 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.