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mrobinson

Concerned About Anxiety Disorder

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My daughter is gluten intolerant, she has been tested and is NOT celiac.  She has really done a ton of research and we know what she can eat and what makes her ill (gluten and lactose).  My concern is that she seems to be so anxious over everything involved with eating now.  She is afraid to eat salt, fat, too many calories, too few calories, etc.  She has let it stop her from doing things socially with her friends because she is afraid of what food will be served and she doesn't want to be singled out for not eating things.  She is continuing to lose weight and she definitely can't stand to lose any pounds.  Help, have any of you had your child develop intense anxiety over their gluten intolerance?

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My daughter is gluten intolerant, she has been tested and is NOT celiac.  She has really done a ton of research and we know what she can eat and what makes her ill (gluten and lactose).  My concern is that she seems to be so anxious over everything involved with eating now.  She is afraid to eat salt, fat, too many calories, too few calories, etc.  She has let it stop her from doing things socially with her friends because she is afraid of what food will be served and she doesn't want to be singled out for not eating things.  She is continuing to lose weight and she definitely can't stand to lose any pounds.  Help, have any of you had your child develop intense anxiety over their gluten intolerance?

No, but I have immense anxiety over not eating things at social events. For the most part I just do not go. I do not tell anyone except family and work - that's a tough one to hide so work knows. I don't suggest this approach but after longer than eight years that is where I am still at. I lost twenty pounds rather rapidly when first diagnosed. I think that is part of the craze with those who go gluten free as a form of diet. It takes a while to figure out what one can eat and really is a constant effort. Ill be honest, a constant effort for my wife. Without her care who knows where I would be? The short answer is your daughters reaction and weight loss are completely normal in my opinion. Best wishes.

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How old is your daughter?  I think that when you find out how careful you have to be to avoid gluten, it can seem excessive.  Some of us get sick from very small amounts.  On the other hand, some adolescent girls have serious food issues.  I would seek professional help if you are concerned.  It is too important to depend on strangers in a forum.

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Vitamin defiency can cause anxiety.  (B12)

 

If accidental gluten causes her to have uncontrollable "D" or vomitting, can you blame her for being anxious?

 

You are the mom.  If you feel this needs to be addressed, get counseling.  I have heard there can be a higher risk of developing an eating disorder with celiac disease/gluten intolerance.

 

I also want to add...  Vitamin D defiency can make children seemed like they are depressed.  My daughter was sleeping like crazy and just had no energy.  (I did have her checked for depression.)  It was just vitamin D defiency.

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Thanks to all for your replies. My daughter is 15 and I feel she needs to see a counselor regarding her anxiety but it is hard to convince her that it would be best, and I'm not sure how affective it will be if I force her.

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You could try bringing it up with the pediatrician and have him/her access her and discuss counselling with her.  Good luck.  It can be hard to get a child that age to do anything.  You also need to recognize the fact that some the anxiety might be your own.  If you approach it with her with that in mind, it might help.

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    I was offering my experience not advice. True I am a stranger but in this forum you have a community of knowledgeable people who have experienced it and are living it. Follow your heart and it will lead you in the right direction. My experience is that the professionals have extremely limited knowledge or understanding of Celiac. I have put out a plea to anyone in the Celiac network in my state more than once if they have a doctor who understands it to let me know and I would go anywhere in the state. I received no response. Hopefully your experience with doctors is better than mine has been. Best luck to you and your daughter. This site is helpful. For me the phobia of getting contaminated at public events is very real and being on this site has helped me realize that I am not alone in that.

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    I was offering my experience not advice. True I am a stranger but in this forum you have a community of knowledgeable people who have experienced it and are living it. 

 

I am sorry if my comment about advice from strangers seemed like a reflection on you.  I didn't mean it that way.  What I meant is that a personal exam by a doctor is required for a medical opinion.  I agree that personal experience can be helpful, especially to make us feel less alone in our eccentricities. 

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I can totally relate to your concerns about anxiety in your daughter. Mine is almost 12 and she's not as anxious about what she eats as she is about many other things. About 2-3 years ago, she was a much more relaxed, happy child...not afraid of much of anything. Today she's terrified of bees, bugs, and much more. She jumps and screams about certain things that scare her. She has trouble falling asleep at night, and worries about her school work.

 

I feel that our medical system is TERRIBLY REMISS (sorry about the all caps). They do not seem to understand the anguish of Celiac disease for girls and for all of us.

 

Do I have Celiac disease? So far, I think I do -- both daughter and I have one of the genes....she tested positive on blood test, which was performed while she was still eating gluten. I tested negative after 3 weeks gluten free. I refuse (at this point) to subject her to a biopsy and have not had one myself.

 

So -- many doctors see me and my daughter as not following through. I find it dreadful that doctors, KNOWING that gluten makes my daughter ill, would expect her to eat it in order to take a biopsy. With the chances of biopsy returning negative anyway?!

 

AND, since she went gluten-free she's gained some weight and grown an inch....this is after 2 years of not gaining any weight.

 

Ok, so bottom line -- I know I'm rambling a bit here -- I'm not sure what to do about the anxiety. I took my daughter to a psychiatrist, which was dreadful, and he gave us Lexapro. The Lexapro made her nauseous, so we stopped it. What has helped me most is seeing a social worker myself. I find that the more calm I can be, the more I can help my daughter. The more I find ways to work through this, and to realize that we are making progress, it's a process, the more I feel that I can intelligently (less emotionally) assist her in healing.

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I don't think it is all that surprising for a person to be hyper-vigilant about their food at first.  Adjusting to the gluten-free diet means becoming aware of our food in ways that most people never do.  For celiacs being aware of what's in our food is a medical issue.  Over time with experience and success on the gluten-free diet the anxiety should lessen.  I think it is better to question everything at first in order to build up a new understanding of what is safe vs what it not safe.  Read every label, and skip anything that is questionable or you aren't sure about.  There are lots of foods to choose from that are naturally gluten-free.

Celiac damage can cause gall bladder issues and problems digesting fats.  Your daughter may be experiencing problems when eating fats because of that.  She might do better if she takes digestive enzymes and pro-biotics.

A simple, whole foods diet is a good way to do gluten-free for a beginner.  Skip the gourmet meals and eat plain foods with little window-dressing.  Think about eating the way people did 200 years ago before processed foods became the norm.  The fewer individual ingredients there are in a meal, the fewer chances there are for unidentified gluten sneaking in.  If you buy processed foods, try sticking to items with 3 ingredients or less at first.  After things are going better and you and she are used to eating a safe diet, then branching out a little, slowly, makes sense.  The trick is to not add more than one new foods to the diet a day.  That way if there is a problem you know it is from that new food.  It may be a boring way to eat in some people's opinions.  But it's better than being sick and it can give the person a sense of control over their diet.  Once the know they have a list of safe foods to eat the anxiety should decrease.

Recovery from celiac disease on the gluten-free diet is variable, and can take months to years.  It is often enough not a steady improvement for people, but rather a back and forth journey.  It is easy to get discouraged if you don't think you are making progress.  That why I suggest a simple whole foods diet.  It gives the best chance for some progress early on.

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I like the idea of being simple in the foods we eat -- I find that tough to present to my 11-year-old daughter. She craves pasta and bread and I've found a few that she loves....I think that she doesn't get stomach aches from them.

 

I've been baking Anna's Breads and hope that the bakers in our group will try this. You can order them online. :-)

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