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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

8 Yo Refuses To Eat
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I did search for this topic on the boards, and I know it's been discussed, but usually about a toddler/preschooler. I think this may be different in that it's not a will struggle.

My 8 yo daughter has been gluten-free for about 3 weeks now. The first two weeks, she still had her regular stomachaches, diarrhea, headaches. Her hives went away, and her stomachaches and headaches weren't as bad as before. Her energy level shot up, I'd never seen her with so much energy. Well, at the start of the third week, she got a slight cough/cold. She was complaining that her chest and throat hurt too, so I took her into the doctor. Her lungs were fine and she had no strep, just a cold. Well, she got over the cold within a few days, but for the last five days, she has been sleeping in until 10 a.m. (if I let her, because I know she's not feeling good), refuses to eat breakfast or anything else until around 2 in the afternoon. She says it's because her stomach hurts so bad and it doesn't want anything in it. She describes her stomach as feeling like someone punched her really hard, and yet she also says it feels like a balloon (bloated.) If I let her, she'd lay around all day reading or moping or saying she's bored. (I homeschool her, if you're wondering why she's not in school.)

The thing is that as soon as she decides to eat, she usually feels better. I let her eat whatever she feels like within reason on her list of foods (I wrote a long list of easy to make breakfast/lunch/dinner ideas) In fact, I used this method before she was diagnosed as well because she's such a picky eater, so this is not something new - just the foods on the list have changed slightly. As an example, today I woke her up at 10 a.m. and told her to eat breakfast and get ready for church at 11. She was mad as a hornet and refused to eat anything. She refused to even go to church. I told her that even though her tummy hurt, she still had to go - in her pjs or not. I told her she could decide to be happy and get dressed and go, or she could be mad (as long as she didn't yell or hurt people) and stay in her PJS but she was going either way. The last two weeks I've stayed home with her because she didn't feel good, but I know that when I make her get busy, she seems much better.

She decided to get dressed and come with us and she was trying to be happy. She didn't eat breakfast, but I brought some gluten-free toast and an apple. She ate it as soon as we got there. Since our church doesn't get out until 2, I knew she'd be really dragging if she didn't have anything to eat. She hasn't complained about her tummy hurting since before church, and now she's cutting out snowflakes with her little brother.

So, is she just messing with me? Is this a psychological problem? Is this common after going on a gluten-free diet? Maybe her tummy really does hurt in the morning. Before being diagnosed, she often was nauseated in the morning and didn't want to eat either.

What do I do? Make her eat? Wait it out for a few weeks because she won't let herself starve (even though I have my doubts about that?) Let her rest? Make her work on school?

Of course she also gets very angry that she can't eat things like the christmas cookies at grandma's house or her favorite pizza. And I try to be empathetic and yet not allow her to to indulge in too much self-pity. I feel like a big meanie already!

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Boy do I understnad your problem!!!!! My daughter was 11 when she was diagnosed. It was a major battle. My gut tells me you may have multiple things going on with your daughter. She may be going through that initial stage when your body is adjusting to the new diet and trying to figure out what is happening. My daughter and I both went through a period of time when we felt whacked out and exhausted...almost depressed. Our bodies almost rebelled at not having the gluten. I have talked to several others who had similar experiences and my doctor said that he saw it regularly.

You might also want to be certain that your doctor checked her for Epstein Barr Virus (EBV). Our entire family had it, but only Jenn and I took months to get over it and had it recur over and over. It is the virus that most folks know as mono. It is a normal childhood illness and more than half the population has had it by the time they are five or so years old. It wreaks more havoc on the system the older you are when you finally get it. For some of us with immune system problems, it will also recur regularly because this virus is not killed off by the system but is encapsulated (as it was explained to me by my endocrinologist). During stressful times either emotionally or due to another physical problem, the capsules can break open and retrigger EBV.

My daughter is also very strong willed (and home schooled, by the way). It was a major battle to keep her on the diet until she hit about 13 1/2 and decided that it wasn't worth the consequences to her body and life.

At least with a home school environment you can adjust her schedule to her needs. Keep praying and encouraging. Hold your ground with her. Let her adjust in her own way within reason. Also watch her for signs that the problem may be something in addition to celiac (like EBV or another illness).

Hope this helps. E-mail me direct if you want to just talk. We have been HS for 15 years now.

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I completely agree! I was also thinking about the EBV when I first read your post. I have 2 daughters with Celiac and are awaiting my own test results. However, I can tell you that in addition to a host of the GI issues, I've had the mono virus three times in the last 10 years (I'm 29). Most physicians that practice family or internal medicine tell you it is rare to have it more than once but with immune issues, it can certainly live on and reactive relatively easily under periods of illness or stress. Fortunately, IF what your daughter is experiencing is linked to mono.....a mono-spot blood test will catch it. It will not come up on a regular CBC. Not to complicate things but mono can create alot of nausea type feelings too.

Gosh, I hope that's not what your looking at though. Perhaps her system is just trying to catch up from feeling run down with the cold in addition to her body going gluten-free.

Hope she's on the mend soon!

Christine

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When you noted she doesn't feel well (stomach problems and fatigue) and doesn't want to eat, but feels better if she does, it reminded me of the hypoglycemia symptoms I get. Not entirely the same - I also feel grouchy and somewhat nauseous - but it reminded me of that. Just a thought (even if not a very likely one).

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Maybe it is just her body adjusting to the gluten-free diet. I know the poor thing is really messed up with all these things going on. She's been craving juice like crazy. She won't eat too many of the gluten-free things, and much what she does eat isn't too nutritious (like white tapioca bread). But of course this isn't too much of a change over before going gluten-free.

She's also developed some wierd behaviorial things. Ever since Kindergarten, she's gone through many periods of baby talk - I've noticed she does this when she feels somewhat insecure about things (or at least I think so.) She's been doing baby talk almost constantly (worse than ever) for about the last three weeks. (And although I try to be patient it's been driving me CRAZY!) Then in the last few months, she's been putting her hand in her mouth and picking at her teeth and gums with her fingernails. I tell her that she needs to stop that bad habit, that'll make her sick faster than anything with all those germs she's putting in her mouth. I know I'm not helping her break this habit like I should be either. It's just so hard with so many things going on! Got any tips on these ones?

I've wondered if she was hypoglecemic pre-gluten-free, since she would get very irritable if she hadn't eaten within three hours. Whenever she got seriously grumpy, I would make sure she ate and then try to deal with the problem. How do you test for that?

Now as for the Epstein-Barr Virus. I didn't know what symptoms this causes, but I found this information: "Many children become infected with EBV, and these infections usually cause no symptoms or are indistinguishable from the other mild, brief illnesses of childhood. When infection with EBV occurs during adolescence or young adulthood, it causes infectious mononucleosis 35% to 50% of the time."

So she could have EBV w/o having mono necessarily.

I also read this: "mono can be accompanied by a streptococcal infection of the throat." My daughter has huge tonsils and gets strep throat probably 2-3 times every winter.

Then I read this: "Epstein-Barr virus, frequently referred to as EBV, is a member of the herpesvirus family" and I found this VERY interesting. My daughter broke out in shingles twice this past summer, which is part of the herpesvirus family! So there is definitely something going on there.

So I guess I'll call my doctor tomorrow and request a mono-spot blood test and ask about hypoglecemia too. Do doctors get offended by me asking for stuff like this? I've never been one to go into the doctor and make suggestions. If she DOES have it, what is done for it? Since it's a virus, antibiotics won't be effective.

It's actually a very good thing I decided to homeschool before I knew anything about her health problems. (Been HS for 5 years, also have older 10 yo.) She would've missed a TON of public school, so it's nice that we can HS year round when she feels good and make up for all the lost sick time.

Thanks for your good ideas and encouragement and keep 'em coming. I need LOTS of them with this poor kid!

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If your doc does get offended, I think it's a sign that the doc isn't the right one for you and your daughter. :-) Good luck with that; it certainly seems a reasonable place to start, and I hope it goes well (and is recieved well by your doctor).

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I have mild hypoglycemia. The only time I felt nauseous from it was when I was pregnant, otherwise I get nervous, edgy and, according to my husband, crabby. :rolleyes: When I am reacting like this, I am NOT hungry, but I've learned to force myself to eat something and then I'll feel almost instantly better. What I have to do is make certain I have something to eat every two hours. It doesn't have to be a lot, my usual are a piece of cheese (like a cheese stick), a handful of cashews, a corn (rice) cake with some peanut butter, 1/2 c yogurt, etc. If I'm out and about I have protein bars or nuts in my purse. Usually I try to have something that will stay with me, low glycemic snacks, rather than candy or fruits (unless I add peanut butter to the fruits, like dipping apple in them.) Eating in the morning is always a problem, but if you can find something she'll eat immediately (like a caramel corn cake with a little peanut butter or even alone or even get her to drink something warm, tea with milk and honey or, like my one son, coffee-milk with a little sugar...it's decaf, btw), she'll be able to eat something healthier in just a little while (if this is what's bothering her.)

My eldest has had mono several times over the last two years. I hadn't realized it was rare to get it more than once! Apparently, doctors regularly check for this in teenagers where they don't think of it in younger or older people. Go figure...

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