Please Tell Me I'm Doing The Right Thing.
Posted 13 August 2011 - 04:21 PM
Posted 13 August 2011 - 04:55 PM
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...
Posted 13 August 2011 - 05:09 PM
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.
Posted 14 August 2011 - 12:59 AM
How do you explain this to family members?
I like this site's symptom list:
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.
Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease.
Father, brother, and daughter: celiac positive
Son: celiac negative, but symptoms resolved on gluten free diet
Posted 14 August 2011 - 09:44 AM
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!
Posted 14 August 2011 - 11:04 AM
Posted 14 August 2011 - 02:21 PM
Posted 14 August 2011 - 04:55 PM
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.
Posted 15 August 2011 - 07:21 AM
Posted 15 August 2011 - 03:53 PM
Posted 15 August 2011 - 05:02 PM
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.
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!
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.
Celiac disease(positive blood work/biopsy- 10/2008), gluten free oat intolerent, Hashimoto's Thyroiditis/Disease, Raynaud's Disease
celiac disease(positive IgA tTG, no biopsy- 11/2010)
repeated negative bloodwork and negative EGD/biopsy. Started on a gluten free trial(8/2011). He has decided to stay gluten free due to all of the improvements he has experienced on the diet.
Posted 16 August 2011 - 02:12 PM
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.
Hashimoto's Thyroiditis 10/2011
Premature Ovarian Failure 11/2010
Rheumatoid Arthritis 10/2011
Sjogren's Disease 10/2011
"The best way out is always through" ~Robert Frost
Posted 16 August 2011 - 06:26 PM
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