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

Guilt?


Guest maddiesmom

Recommended Posts

Guest maddiesmom

Do any of you guys ever feel guilty that you have passed on the celiac gene to your children? I have not been tested myself but I am sure my daughter has gotten the gene from me. My unlce on my father's side has Chron's and so do he's kids..(my daughter has the gene for Chron's also) as far as we know nobody on my husband's side has the gene for either. This is new to us and I pray that the guilty feeling goes away. I know deep down that it's not my fault but I still feel guilty.


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



Celiac.com Sponsor (A8-M):



CarlaB Enthusiast

No need to feel guilty. I'm sure your daughter would rather exist with celiac than not exist at all! ;) You passed on what you could.

2kids4me Contributor

Nope, I passed on a genetic flaw for autoimmune disease to both my kids. I did not plan it that way or do it on purpose - no one does. I also passed on the gene for brown hair and green eyes to my daughter, my son got blue eyes from daddy and an amazing brain for math and music.

We have no control what gene combination they get and we dont find out til there here on earth.

A surprise package with no instruction manual and no guarantee. :o:)

Maybe its not so much guilt but rather a sadness that the future you envisioned has a fork in the road and went in a direction you hadn't planned. There is a grieving process that accompanies a life changing diagnosis. Allow yourself that, and then celebrate healthy gluten free eating.

As you can see my my signature - I've been through the process more than once with both children.

The nagging underlying feelings you have right now will disappear, just needs some time.

Sandy

:)

kbtoyssni Contributor

If celiac is the worst thing you've passed on to your kids, they're doing pretty well! And celiac is not a death sentence. It can be inconvenient, but they will be able to lead a "normal" life and do whatever they want even with the celiac. I don't have kids, so I can't quite understand the guilt, but it's not like you did something wrong. There's no way you could have known.

Nic Collaborator

This reminds me of a conversation I had with my aunt. She has a friend who was diagnosed with Celiac as an adult. Well the woman decided not to have children due to the possibility of them having Celiac. To each his own of course but I watch my son, who was diagnosed with Celiac 2 years ago at 4, and he is happy, healthy, and well adjusted. The only difference he is gluten free. Once you get past that beginning of adapting to the knew diet and way of life, and you begin to see your child grow into a healthy person, you will not feel guilty anymore.

Kyalesyin Apprentice

We've actually held off having children a few years, because I know she'd feel guilty if our kids came out celiac. We did discuss having them selected, so that we can make sure the gene doesn't get passed on, but they'd be coming into a gluten-free house anyway...

As it is, we're now tempted, rather than having our own kids, to adopt celiac kids, since I know from having friends in the care system that kids with any kind of disorder like that never get proper care and have a hell of a time getting anybody to care for them because the majority of people don't seem to want to interrupt their nice, neat little lives for someone else's 'defective' kid. They'd be coming straight into a gluten free house, and we'd know exactly what they'd be gowing through. I think its a worthy cause!

Juliet Newbie

We've gotten past the guilt (and blame since we haven't gene tested ourselves yet) of who gave Celiac Disease to our child, and I'm sure you will, too. It definitely was around at first, plus I had a TERRIBLE time dealing with the guilt of "poisoning" my child nearly to death until we were told that he might have this disease - that guilt took longer to get over. It didn't really matter that I had never heard of this disease until then, I was his mother and I continually fed him something that nearly killed him. And when he was getting critically ill was the same time I gave birth to our daughter, so I then had the guilt of "what if we gave it to her, too?"

But you get over it the more you adjust to the diet and then see your child healthy. In fact, by comparison our son acts and looks healthier than most kids his age. He's almost exactly 3 1/2 and looks more like a 4 1/2 year old now. He's very happy and outgoing, well coordinated, and knows more about food than any other kid. He loves to help me cook, and he also loves to run, play baseball, and go to every train themed store/event/place we can. And we decided to keep our daughter gluten free, too, until we know if she has the gene or not. And our whole house is gluten free, too, so that he always has a "safe" place to eat. Now the only guilt that pops up is if there's an accidental glutening, but that happens rarely at this point.


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



Celiac.com Sponsor (A8-M):



darlindeb25 Collaborator

As was said, not so much guilt maybe as an overall sadness. When I had my kids, I didn't know I was a celiac. I have 5 kids and I think they would all be better off gluten free. My daughter was born with a hip defect and yes, I feel very bad about that, yet I know it was not my fault that it happened, there was nothing I could have done to prevent it without knowing I was a celiac. Had I been gluten-free then, maybe it would not have happened, but who knows.

FeedIndy Contributor

My guilt was never about who gave them the disease. I felt like the worst parent in the world for poisoning my children for so long. DD was 9 when we figured out that celiac was the source of all her problems. It took the baby to figure it all out as she had more classic symptoms. Three doctors over 9 years never figured it out, but I somehow felt guilty because I didn't.

I have since gotten past that, but it was pretty overwhelming at first.

Kibbie Contributor

I felt guilty for a while... but I'm not sure if it was guilt or it was more hurt that my daughter had something "wrong" with her. I felt like I needed to blame someone to get rid of the horrible feeling that something was WRONG with her so I blamed myself. Replaced the feeling of disappointment and sadness with blame. Then I felt guilty for feeling badly that my daughter had CEliiac disease when there are so many other parents out there who hear that their child has a life threatening disease.

Now that we are 6+ months into Gluten free life I still wonder which of us "caused" this to happen but I no longer see it as blame. I was a teacher before I was born and never looked at kids with physical, emotional, or learning disabilities as something being "wrong with them" and I never looked at people with Diabetics as something being wrong with them... it was just a part of who they are. It has taken me a while but I have now realized that this is just one of the many things in her life that is going to shape who she is and how she reacts to things. I know it has changed me for the better.

Some positives:

1. I am more sensitive to my friends food allergies and they have a better time going out with me and being at my house (I was carefully before but now I KNOW what they are dealing with

2. I am a better cook and baker and get better every day :) Something that I am beginning to like bragging about!

3. It has forced us to be healthier than before.. I love the fact that my 2 year old chooses fruit and veggies over cookies and candy :)

4. My daughter at 2 is already beginning to recognize that there are foods she can't have pointing them out at restaurants and saying "That has Gluten in it" And a grocery stores she even pretends to read labels :)

5. I've actually started eliminating other things from out diets completely :) Trans fats are out as is High Fructose Corn Syrup. Everyone in my family is healthyer because of it.

So really as horrible as this was... the diagnosis changed our lives for the better and when I weight the negatives with the positives.... so far the positives are winning :)

Remember its okay to feel guilty... I think everyone does :) But try and focus on the positives because after all we all want our children to have a positive outlook on life... and we need to do everything we can to teach them how :)

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,547
    • Most Online (within 30 mins)
      7,748

    gizmo1jazz2
    Newest Member
    gizmo1jazz2
    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
      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
      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
      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
      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
      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.