Feeling Scared, Guilty, Overwhelmed

[anemic]

Just needed to share my anxieties at the moment. I was diagnosed Celiac in February and have adjusted reasonably well to the diet (sometimes I freak out) My father-in-law is Celiac but has refused the diet, also diabetic diet (crazy, eh?) So last week my husband, daughter and son had the blood work done, it may be back at the end of the week.

My daughter is almost 8 and last year was diagnosed inattentive ADHD and has been taking Strattera which has helped her at school. She has no behavioural problems, just anxiety and daydreaming, unable to complete tasks, stay focused. It was very difficult to decide to use medication but she was failing grade 1 and her self-esteem was suffering. If she tests positive for celiac, I am terribly worried that we medicated her unnecessarily and the celiac is the true cause of the "brain fog"

My son is almost 6 and has been a terror since birth. He had a lot of problems as a pre-term infant and was off soy, meat, nuts, dairy for his first 2 years, giving his intestines extras time to recover. Since then he has been just fine except for his Jeckyl / Hyde behaviour.

My husband has some intestional symptoms of celiac, but is basically a really healthy guy.

I guess I'm just worried about whether my kids will test positive and the difficulties this will cause for them. My daughter is already concerned about what it will be like for her. The other issue is that I hear so many people say the blood work is inaccurate, should I take everyone off gluten regardless and just see what happens?

[lonewolf]

Welcome to the board! I'm sure someone will come along with more information for you, but I wanted to say hi and respond.

It sounds like going gluten-free would be a great idea for the whole family - even if all their tests come back negative. Going gluten-free is actually a lot easier if the whole family does it. I have 4 kids and we are all gluten-free at home. Two kids and hubby eat gluten occasionally away from home.

My 12 year old son was having problems at school last year and his teacher asked if we would get him tested for ADD. She suggested that medication might help. His grades were slipping to B's and C's and he was totally unfocused at school and at home. To make a long story short, he went gluten-free, his teacher noticed an immediate improvement. This year in middle school he's back to straight A's and his teachers can't believe that anyone ever thought he might be ADD. He's finally "on board" and actually reads labels for himself. He says that eating gluten makes his brain feel funny. (Although he has his moments when he wants to eat something he shouldn't and gets upset.) BTW - he tested negative on his Celiac panel.

My 15 yo daughter put herself on the gluten-free diet because she started realizing that she felt better when she ate at home and felt funny when she ate at other people's homes and at camp. She also tested negative on the bloodwork.

My opinion is that the "difficulties" that eating a gluten-free diet will cause them (or anyone) are much easier to deal with than the behavior and health issues that they might otherwise face.

[gfgypsyqueen]

I have to agree with the last poster. Bloodwork can be unreliable. The biopsy can also be unreliable in young babies. But your body will let you know if gluten-free lifestyle is right for you. I was negative blood work and positive biopsy. Feel much better gluten-free.

BTW: I daydreamed through many years of school . In todays world, I would have been on meds for years, probably decades. Don't beat yourself up about medicating the kids. You do the best you can with what you know. Try herbalists. They have very good advice.

Wait to hear the results about Celiacs before getting too concerned. Truthfully, I would NOT hope that my child was a celiac. But if something was wrong with my child and celiacs was a possibility I would be content, almost happy, to hear they had Celiacs. It is a diet to follow, but it won't kill them if they make a mistake. It is not life threatening when followed. It is a healthy diet and lifestyle. So all things considered, hearing the kids are celiacs might not be terrible, but you will be sad for a little while. I was. I was happy when I was diagnosed - it was the best possible option for me. I already have had numerous surgeries in my abdomin. Hearing the kids had anaphylactic food allergies made me very upset. They can be deadly if you make a mistake. So really, I just hope for the best possible option sometimes. We only have ONE food allergy per person, that is pretty good.

I hope things work out for the best option for you and your family.

[taweavmo3]

Liz, you sound alot like us! I have four kids, and although a bit younger.....my 8 year old made the choice himself to stay gluten free. His test was negative too, but he realized on his own that he felt bad when he ate gluten. I've been really amazed at how well he has stuck to the diet, even when it isn't convenient to do so. Jack does have his moments too, especially at soccer when they hand out

Oreo's or something.....but he sticks with it. I can't help but hope this is a life lesson he's learning early that will serve him well! I do keep alot of gluten free candy and such around the house, so they never feel deprived of anything I don't think, and that seems to help.

Anyway, I'm rambling! I agree with everyone else. If you get all the testing, and everything comes back negative, it wouldn't hurt to try the diet. And give yourself some time before writing it off if you don't see immediate results. Everyone makes mistakes in the beginning, so it takes a few weeks or longer I think before most families are truly 100% gluten free. If your daughter is having learning problems, I really would give the diet a shot. We are going through something similar with my 5 year old....she has done alot better since going gluten free, but she has been in therapy for almost two years, and still has a long road ahead.

The way I see it....when they are adults, they can eat what they want. Right now, I want them to feel their absolute best so they can reach their full potential. And if nothing else, they'll have learned how to take care of themselves and eat well.

Good luck to you, this diet really isn't bad once you get the hang of it. The hardest part for me, especially with a big family, is the inconvenience of it. I had to really buckle down and get organized, and start planning all my meals out. But you really do get used to it! And this board is wonderful. Take care, and let us know how things go!

[mandasmom]

Just needed to share my anxieties at the moment. I was diagnosed Celiac in February and have adjusted reasonably well to the diet (sometimes I freak out) My father-in-law is Celiac but has refused the diet, also diabetic diet (crazy, eh?) So last week my husband, daughter and son had the blood work done, it may be back at the end of the week.

My daughter is almost 8 and last year was diagnosed inattentive ADHD and has been taking Strattera which has helped her at school. She has no behavioural problems, just anxiety and daydreaming, unable to complete tasks, stay focused. It was very difficult to decide to use medication but she was failing grade 1 and her self-esteem was suffering. If she tests positive for celiac, I am terribly worried that we medicated her unnecessarily and the celiac is the true cause of the "brain fog"

My son is almost 6 and has been a terror since birth. He had a lot of problems as a pre-term infant and was off soy, meat, nuts, dairy for his first 2 years, giving his intestines extras time to recover. Since then he has been just fine except for his Jeckyl / Hyde behaviour.

My husband has some intestional symptoms of celiac, but is basically a really healthy guy.

I guess I'm just worried about whether my kids will test positive and the difficulties this will cause for them. My daughter is already concerned about what it will be like for her. The other issue is that I hear so many people say the blood work is inaccurate, should I take everyone off gluten regardless and just see what happens?

The Gluten free lifestyle is such a healthy choice --I dont see how it can hurt! When my daughter was diagnosed as a teen she soon figured out on her own how much better she felt gluten-free. Diagnosed or not it certainly seems worth an earnest effort to see if the family feels and does better on the diet..Best of luck!!