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

Please Tell Me I'm Doing The Right Thing.


mommyto2kids

Recommended Posts

mommyto2kids Collaborator

My mom thinks I am wrong to get the kids tested for celiac. She says they don't have symptoms and if they test positive "with no symptoms" that would be mean of me to make them eat gluten free. I'm going to get them tested next week. Just kind of bummed with no family support. How do you explain this to family members?


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



Celiac.com Sponsor (A8-M):



rosetapper23 Explorer

Your mom needs to educate herself more on celiac rather than relying on you to explain something that is so necessary to protect your children. However, in the interim (since she SHOULD do some research on celiac), you might explain to her that if your children have celiac, harm may be occurring, though silently, at this time. For example, they could be receiving poor bloodflow to the frontal lobes of their brains and/or plaques could be growing throughout their brains. With neurological damage, it sometimes takes years before it becomes apparent, and this type of damage is not always reversible once a person goes on a gluten-free diet. How I wish that my pediatrician (and mother) had known that I had a celiac as a child. As a result, even after nearly eight years on a gluten-free diet, I still don't have the ability to absorb fat-soluble vitamins.

Also, you should remind your mother that one's bone strength is developed during the teen years, and we can't go back in time and change that fact. Doctors don't test children and teens to see if their bones are receiving adequate nutrition to be strong so that osteoporosis can be avoided later in life.

Since your mother doesn't seem to be too knowledgeable about celiac, does she know all of the possible symptoms of celiac....and how does she know that your children have no symptoms? Perhaps they suffer from headaches, difficulty sleeping, moodiness or anxiety, depression, allergies, ADHD, weak teeth, sore muscles, achy joints, etc. Many children suffer silently or feel that these symptoms are "normal." Night blindness can go undetected for years (due to vitamin A deficiency), children can be plagued by viruses and infection due to low Vitamin D, and nutritional deficiencies can cause hundreds of symptoms that people simply brush off as something that will go away.

I don't know if the above information will arm you with enough ammo to change your mother's perception of celiac and the possible harm it could do to your children, but I hope that you won't change your mind about having your children tested. I commend you for being a great mom...

Mizzo Enthusiast

Well said Rosetapper!!!

Stay the course and get them tested no matter what anyone says. My daughter went misdiagnosed for 2 years and my aunt for 6 yrs (we think, probably more). My aunt will be 70 and years of destruction has occured and I fear for her. she also cannot keep gluten free as she is too set in her ways to give up her pizza and bagels, even though she suffers for it for days.

Thank goodnes my dd is only 8 and can live her life the right way to avoid all the issues that can occur with the silent sufferers.

Kuddos to you for doing the right thing, hopefully a test will give you the answers you need.

T.H. Community Regular

How do you explain this to family members?

I like this site's symptom list:

Open Original Shared Link

Basically, mom needs to learn that no 'discernable' symptoms doesn't mean no damage. And on the more dramatic side, long term undiagnosed celiac disease can set a person up for permanently debilitating damage or death.

Celiac disease means we're nutrient deficient. That means every system starts having trouble. It means we're more likely to develop even more serious diseases, like diabetes or hypothyroidism. It means that when we catch diseases, we're more likely to develop serious complications, like getting pneumonia when we get the flu. It means our bones are more likely to break, our tendons more likely to tear. It means we're more likely to have growth issues, sterility issues, mental problems (including suicidal depression).

I've had this since I was young - it took over 20 years before I was diagnosed. as an adult, I was sick for an entire year with a disease that normally would have caused a month's illness, because of undiagnosed celiac disease, and this disease is now dormant and can recur at any time.

If I'd been tested when my father was diagnosed, I might have avoided that. I try not to think about it, but it's a big reason behind why we tested my kids. They're both gluten-free now, if that tells you anything.

Sorry you're mother believes that it's not a big deal, but you'll get a LOT of support here for getting the kids tested.

StephanieL Enthusiast

You are 1000% doing the right thing. No outward signs does NOT mean there isn't damage going on!

My DS was 3 when he was tested. He had NO signs at all. He has other food issues and had a non-existent Vit. D level. This led the Enod Doc to test for Celiac. Here we are 18 months later and still working on getting his levels down. No signs and over 100 tTG levels.

You are so doing the best for your child!

Skylark Collaborator

You are doing the right thing! Rosetapper and TH gave you great advice. I'm just chiming in to offer more support. :)

alex11602 Collaborator

Definitely doing the right thing. We just tell our family that they eat a certain way and that if they try to give them something not safe, they will not see our children. My youngest had major symptoms and my family was still not wanting to believe that gluten was the problem, but when they saw improvement they just let it go except for saying that a little won't hurt. And then there was my oldest who had no noticeable symptoms except for exzcema from dairy, upon removal of gluten she lost her horrible gag reflex and a few other things and has nightmares and now hears voices when she gets gluten. Family still thinks that she does not have a problem with it and that I'm not right to keep her from the foods she loves, although they have learned to respect our decision. Hopefully if your children do test positive your mom will be fully supportive, but you are definitely making the right decision.


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



Celiac.com Sponsor (A8-M):



nmlove Contributor

Just supporting you. As someone else said, no symptoms doesn't mean no damage! It's harder to see if you're CC or not (without the bloodwork) but you still need to eat gluten-free.

As for telling family, it takes time and lots of it and sometimes even then they don't get it totally. Because they're not living it. We explained celiac disease and things the kids could not eat to our parents at the beginning. We've since added foods they can eat and now feel confident they can pick the right food. CC in their house is another story however and something we're still working on at almost 2 years out. And still, my MIL brings up a comment that makes me think she doens't totally get this yet (like saying you can outgrow after I've repeatedly said you cannot, that you have to eat gluten-free FOREVER). It's frustrating but you learn to ride it out, keep explaining, and have a hawk's eye while you're there eating. Plus, I think it helps to always share doctor appointment info with them. Like how the kids are growing, what the latest labs are, how they're doing on the diet, etc.

Good luck!

lovegrov Collaborator

ALL major celiac experts I know of advise that ALL first-degree relatives be tested. That would include your mom. My father, brother, sister, and two children got tested and my father was VERY positive.

richard

NCM Newbie

I was recently diagnosed and insisted on having both of my kids tested. My family doctor didn't think it was necessary because they didn't show obvious symptoms and she said the chances of them having it were low. I insisted on it and she did agree to test them and they BOTH came back positive! I'm am so glad that we know and they won't have to endure the 20+ years of being so ill like I did. I can't imagine you ever regretting testing them but you could definitely regret not testing them!

Roda Rising Star

I was recently diagnosed and insisted on having both of my kids tested. My family doctor didn't think it was necessary because they didn't show obvious symptoms and she said the chances of them having it were low. I insisted on it and she did agree to test them and they BOTH came back positive! I'm am so glad that we know and they won't have to endure the 20+ years of being so ill like I did. I can't imagine you ever regretting testing them but you could definitely regret not testing them!

At least your kid's doc finally did the test. A month after I was diagnosed I asked my children's pediatrician to test my kids. He REFUSED! I was so angry. Luckily (or not so lucky) my kids were seeing a pediatriac allergist/immunologist at the time and he ordered the tests for me no questions asked. At that time both the kids tested negative on blood work and were doing fairly well that we let things be. Retested the oldest a year later and was negative again. Two years later retested both boys and my youngest was positive and oldest still negative. Younger brother went gluten free as soon as we found out the blood tests results, with no scope. Older boy's new allergist is encouraging us to put him gluten free because of me and brother. We go this Wednesday for a scope/biopsy since he has had negative blood work.

For the original poster, you are definately doing the right thing by having them tested. Keep in mind that they could develop it at any time so something to be on the look out if they are negative now.

pain*in*my*gut Apprentice

I posted this on a different forum, but I thought I would re-post it here...

These are my thoughts about doing the biopsy on a child. If my son does have Celiac disease , I want to be able to give him a solid reason if I am going to make him gluten free for the rest of his life. Sure, while he is little I can make sure he eats gluten free, but as he grows up he is not going to have a reason to stick to the diet. He may think I was just being neurotic or liked to make him eat healthy stuff. If he knows he has a disease that can have serious consequences if he does not control it (like diabetes), he will be more likely to stick to the diet. It takes a lot of work to be gluten free, and peer pressure and convenience may over-rule at some point if he thinks it's just something his mom made up.

I have alway been a scientific person. I am a medical laboratory tech (I have worked in immunology for 9 years before my son was born). Knowledge is power. If I can protect my son's health by giving him every available tool to do so, I will. What is one day of him feeling icky while undergoing a minimally invasive medical procedure when we are talking about the rest of his life?

I totally respect everybody's decision wheather to biopsy or not. I just know my son, he is a stubborn one, and he loves his gluten filled foods. Also, my extended family and hubby would need an official dx, on paper, to get them to cooperate with the diet. They all have signs of Celiac, too, but they all refuse to get tested. But that is a whole different post.... :angry:

You are absolutely doing the right thing. YOU are the mommy, and YOU know what is best. Don't ever let anybody tell you differently.

melikamaui Explorer

You're absolutely doing the right thing. You could save your children years of pain and suffering by testing them now.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - slkrav posted a topic in Introduce Yourself / Share Stuff
      0

      Gluten free beer ?

    2. - cristiana replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      16

      Ibuprofen

    3. - Mari replied to KathyR37's topic in Coping with Celiac Disease
      5

      New here

    4. - Colleen H replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      16

      Ibuprofen

    5. - Colleen H posted a topic in Coping with Celiac Disease
      0

      Methylprednisone treatment for inflammation?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,879
    • Most Online (within 30 mins)
      7,748

    Peta Dunn
    Newest Member
    Peta Dunn
    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

    • slkrav
      Help me out here. Lauren Dam gluten-free beer from Spain is listed as gluten free. Yet its made from Barley Malt. I thought barley and any form had gluten. Anybody have any more information about it?
    • cristiana
      Ferritin levels.  And see what your hemoglobin looks like too, that will tell you if you are anemic?  You can have 'low normal' levels that will not be flagged by blood tests.  I had 'low normal' levels, my lab reading was. c12, just over what was considered normal, but I had small benign lesion on my tongue, and sometimes a sore mouth, and a consultant maxillofacial ordered an iron infusion for me as he felt my levels were too low and if he  raised them to 40, it would help.   Because you are not feeling 100% it might be worth looking at your levels, then discussing with your doctor if they are low normal.  But I stress, don't supplement iron without your levels being monitored, too much is dangerous.
    • Mari
      Hi Katht -  I sympathize with your struggles in following a gluten-free diet and lifestyle. I found out that I had Celiac Disease a few months before I turned 70. I just turned 89 and it has taken me almost 20 years to attain a fairly normal intestinal  function. I also lost a lot of weight, down to 100 lb. down from about 140 lb. What Trents wrote you was very true for me. I am still elimination foods from my diet. One person suggested you keep a food diary and that is a good idea but it is probably best just to do an elimination diet. There are several ne and maybe one for celiacs. I used one for a while and started with plain rice and zucchini and then added back other foods to see if I reacted or not. That helped a great deal but what I did not realise that it would only very small amounts of some foods to cause inflammation in my intestine. Within the last few years I have stopped eating any trace amounts of hot peppers, corn and soy(mostly in supplements) and nuts, (the corn in Tylenol was giving me stomach aches and the nuts were causing foot pains). Starting an elimination diet with white rice is better than brown rice that has some natural toxins. In addition it is very important to drink sufficient plain water. You can find out how much to drink for your height and weight online. I do have difficulty drinking 48 ounces of water but just recently have found an electrolyte supplement that helps me stay well hydrated, Adding the water and electrolytes may reduce muscle cramps and gag spams you wrote about. . Also buy some anti-gluten enzyme capsules to take with meals. I use GliadinX advertised here. These are a lot of things to do at one time as they reflect my 20 years of experience. I hope you do what you can manage to do over time. Good luck and take care.
    • Colleen H
      Yes thyroid was tested.. negative  Iron ...I'm. Not sure ... Would that fall under red blood count?  If so I was ok  Thank you for the detailed response..☺️
    • Colleen H
      Hi all !! Did anyone ever get prescribed methylprednisone steroids for inflammation of stomach and intestines?  Did it work ??  Thank you !! 
×
×
  • 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.