Please Tell Me I'm Doing The Right Thing.

[mommyto2kids]

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?

[rosetapper23]

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]

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.]

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]

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]

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

[alex11602]

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.

[nmlove]

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]

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]

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]

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]

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....

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]

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