Just Wondering

[Kolla]

Hi everyone, my little girl, 12 years was diagnosed in january, she had been very sick and this is one of the things the doctors found out. She had hyperthyroidism or Graves disease and as well she has Asperger. Her Asperger is not bad, she is a very smart girl and has friends and loves it. When she was diagnosed with Graves and then Celiac she was very sick, now on her medcine her thyrod has gone stable and that and the gluten free diet has healed her body. She has but on 17 kg and that is not little for a person who is only 155 cm despite that she needs few more kilos, but at least she lookes like a normal child now.

Well the question is, is it celiac or was it a mix of all this, she was skinny becouse of the thyrid was burning everything. I have been very careful about the diet but she has had accidents, and when that happens no symptons shows up, I cant see that she gets sick, she had a slice of pizza in a birthday party once and a wheet tortilla with friends at the mall.... she is careful about her food but yes she is only 12 years and its all about food when you are that age. How can I know, if it is realy a celiac or could it be a gluten intolerence... dont even know what Im asking you about

I heard about some ensymez would that help if she has something with gluten in ? Its not often, has happened 4-5 times since was diagnosed and there is no gluten in the house but what she does with friends I cant realy control it

[Familytradition]

In my opinion (based on tons of research and personal experience), it is all related. I believe I have Asperger Syndrome (never officially diagnosed) and I have one son who was just diagnosed with Autism (and the other 2 sons are suspect as well). I was always skinny growing up and really I still am. My sister has hypothyroidism and I always suspected I have hyperthyroidism (all the signs). I also have all of the indicators of celiac disease (genes included). I know I am not of much help but I do believe it would benefit her to continue a gluten free diet as strictly as possible. I wish I had a mother who would have helped me figure all of these things out many years ago. Unfortunately, my mother STILL doesn't see the link or doesn't care.

[Takala]

If she was diagnosed with celiac by a medical doctor, she has celiac. Giving approval for her to "cheat" on her diet is wrong, and giving her enzymes, which don't work anyway, is wrong, because then she will think it is okay to cheat. She is still damaging herself.

It is likely the undiagnosed celiac caused the damage to her thyroid. Just because she's under social pressure to conform with what her friends eat, will not change that. Celiac will also ruin other parts of her body, if untreated. Try to reward her when she does the right thing, and keep emphasizing to her that she will make herself sick if she does not stick to the diet. Some people go through a phase where they think this isn't serious, and they start making excuses.

Send nice gluten free snacks with her when she goes out, which she can carry in her purse or a travel snack/lunch bag. Be sure to make gluten free versions of what she likes to eat out, sometimes too. You can make a batch of gluten fee mini pizzas, and freeze them for when you need a pizza serving, for example. Eating is social, so make sure your family is eating the same thing with her, so she doesn't feel left out.

[Kolla]

Thanks, that is exacly what I do, there is nothing with gluten in the house, we are all gluten free from the day she was diagnosed, at least at home, if we go to a restaurant we all eat gluten free as well, and her grandparents and family are also understanding and having partys with them is not a problem, there is always something there for her.

Its only a problem when she is with friends, its not a problem at home. There is always something at home for her to take out and so on. I think I have done everything right, and she can read labels. But as i said, those accidents she has had, she has not shown any symptons, she is just fine. I will not give her enzymes to give her the message that it is okey to cheat, but if it helps if she cheats, I personally would feel better. She is 12 years old, its hard to be different at that age, and as I said she has Asperger and is realy hard trying to fit in and by social pressure she has done misstake. I know I cant control her completly, sometimes I wish that she would react to gluten and would get sick, then it would be easyer for her to understand what this is about.

[Di2011]

You are a good mum

When I first went gluten free a few months ago I made lots of mistakes and many people on this forum write about similar experiences.

I'm undiagnosed but suspect I am celiac because of the type of skin disorder I have - Dermatitis Herpetiforms in look and reaction to gluten/iodine. Salt has been even harder to avoid than gluten!! I am definitely gluten intolerant with all the usual symptoms. My mum, son, two sisters, and grandfather (died young with digestion system cancers ) ) also have/had similar symptoms and signs.

I count myself VERY lucky that I have such an obvious and public reaction to gluten. Strangers have seen my wrists/hands and have body language/facial expressions that clearly indicate they think I am highly contagious ((I cover the rest as I have very awful looking arms and legs which are either very scarred or still healing)). My digestion problems follow soon after the skin. There are stories on websites such as this forum of people having serious digestion/nervous system reactions when they get glutened and some talk about fact that the longer off gluten the worse the reaction when glutened.

I wonder if your daughter has any such reaction (skin, digestion problems etc)??

If not you should, if you haven't already, be very very clear with her about what her adult life might include if she doesn't stick to gluten free. Does she know anyone at school, sport etc who is also celiac? Can you get her on this forum? The Celiac Disease - Teenagers & Young Adults Only might be good for her and perhaps she can track down some people in her local area. I wonder if you doctor/clinic can help with this too.

[Kolla]

Thanks for that, Im trying to do everything right.

The problem is that celiac and gluten intolerence is not common where I live, suprisingly few has it in my country, its a mystery to doctors why.

So she does not know anyone, and its hard to get gluten free products, I went to a large supermarked with my problem and they started to import Bob Reds Mill, it was great for me. Then I asked them about Maza Harina and they got that for me as well. I also shop on the internet someting and when I or friends or family are going abrod I led them buy for me some products, and most of my free time I read gluten free blog and recipis :-), I have sometimes thought about moving to another country where it would be easyer for her to live.

Im trying to be an expert in my child, noone else will, and I will never forget how sick she was one year ago, when her thyroid was hyper and noone knew about the gluten.

She has no skin problems, a year ago she was always sick and only 29 kg, and was getting sicker and sicker, now she is healthy and 46 kg, looking healthy and happy.

This forum has been a great help for me,

[jswog]

Does she know anyone at school, sport etc who is also celiac?

That just hit one of my BIG pet peeves! None of us ARE celiac! We have celiac disease, but ARE NOT celiac. Celiac is a part of us, but it does not define us!