Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

8 Yo Refuses To Eat


dmchr4

Recommended Posts

dmchr4 Apprentice

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!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



cdford Contributor

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.

CMWeaver Apprentice

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

tarnalberry Community Regular

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).

dmchr4 Apprentice

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!

tarnalberry Community Regular

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).

FreyaUSA Contributor

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...


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      10

      My only proof

    2. - NanceK replied to Jmartes71's topic in Related Issues & Disorders
      10

      My only proof

    3. - knitty kitty replied to Hmart's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Is this celiac?

    4. - Trish G replied to Trish G's topic in Gluten-Free Foods, Products, Shopping & Medications
      10

      Fiber Supplement

    5. - trents replied to Hmart's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Is this celiac?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,357
    • Most Online (within 30 mins)
      7,748

    Grandmax6
    Newest Member
    Grandmax6
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      Hello, @NanceK, I'm glad you're willing to give Benfotiamine with B Complex another go!  I'm certain you'll feel much better.   Yes, supplementation is a good idea even if you're healing and gluten free.  The gluten free diet can be low in B vitamins and other nutrients. A nutritionist can help guide you to a nutrient dense diet, but food sensitivities and food preferences can limit choices.  I can't consume fish and shellfish due to the sulfa hypersensitivity and iodine content, and dairy is out as well.  I react to casein, the protein in dairy, as well as the iodine in dairy.  My Dermatitis Herpetiformis is aggravated by iodine.   Blood tests for B vitamin levels are notoriously inaccurate.  You can have deficiency symptoms before blood levels change to show a deficiency.  I had subclinical vitamin deficiencies for years which affected my health, leading to a slow downward spiral.  Because the B vitamins are water soluble, they are easily excreted in urine if not needed.  It's better to have it and not need it than need it and not have it.   Wheat and other gluten containing grain products have vitamins and minerals added to them to replace those nutrients lost in processing.  Manufacturers add cheap vitamins that our bodies don't absorb or utilize well.  Even normal people can suffer from vitamin deficiencies.  The rise in obesity can be caused by High Calorie Malnutrition, where people eat more carbohydrate calories but don't get sufficient thiamine and B vitamins to turn the calories into energy.  The calories are stored as fat in an effort to ration out diminishing thiamine  stores.    It's time to buy your own vitamins in forms like Benfotiamine that our bodies can use well.   Not sleeping well and fatigue are symptoms of Thiamine deficiency.   I'm certain Benfotiamine with a B Complex will help you immensely.  Just don't take them at night since B vitamins provide lots of energy, you can become too energetic to sleep.  Better to take them earlier in your day.   Do keep me posted on your progress!
    • NanceK
      Oh wow! Thanks for this information! I’m going to try the Benfotiamine again and will also add a B-complex to my supplements. Presently, I just take sublingual B12 (methylcobalomin). Is supplementation for celiacs always necessary even though you remain gluten-free and you’re healing as shown on endoscopy? I also take D3, mag glycinate, and try to get calcium through diet. I am trying to bump up my energy level because I don’t sleep very well and feel fatigued quite often. I’m now hopeful that adding the Benfotiamine and B-complex will help. I really appreciate your explanation and advice! Thanks again Knitty Kitty!
    • knitty kitty
      @Hmart, The reason why your intestinal damage was so severe, yet your tTg IgA was so minimal can be due to cutting back on gluten (and food in general) due to worsening symptoms.  The tTg IgA antibodies are made in the intestines.  While three grams of gluten per day for several weeks are enough to cause gastrointestinal symptoms, ten grams of gluten per day for for several weeks are required to provoke sufficient antibody production so that the antibodies move out of the intestines and into the blood stream where they can be measured in blood tests.  Since you reduced your gluten consumption before testing, the antibody production went down and did not leave the intestines, hence lower than expected tTg IgA.   Still having abdominal pain and other symptoms this far out is indicative of nutritional deficiencies.  With such a severely damaged small intestine, you are not absorbing sufficient nutrients, especially Thiamine Vitamin B 1, so your body us burning stored fat and even breaking down muscle to fuel your body.   Yes, it is a very good idea to supplement with vitamins and minerals during healing.  The eight essential B vitamins are water soluble and easily lost with diarrhea.  The B vitamins all work together interconnectedly, and should be supplemented together.  Taking vitamin supplements provides your body with greater opportunity to absorb them.  Thiamine and the other B vitamins cannot be stored for long, so they must be replenished every day.  Thiamine tends to become depleted first which leads to Gastrointestinal Beriberi, a condition that doctors frequently fail to recognize.  Symptoms of Gastrointestinal Beriberi are abdominal pain and nausea, but neuropathy can also occur, as well as body and joint pain, headaches and more.  Heart rhythm disruptions including tachycardia are classic symptoms of thiamine deficiency.  Heart attack patients are routinely administered thiamine now.   Blood tests for vitamins are notoriously inaccurate.  You can have "normal" blood levels, while tissues and organs are depleted.  Such is the case with Gastrointestinal Beriberi, a thiamine deficiency in the digestive tract.  Eating a diet high in carbohydrates, like rice, starches, and sugar, can further deplete thiamine.  The more carbohydrates one eats, the more thiamine is required per calorie to turn carbs into energy.  Burning stored fats require less thiamine, so in times of thiamine shortage, the body burns fat and muscles instead.  Muscle wasting is a classic symptoms of thiamine deficiency.  A high carbohydrate diet may also promote SIBO and/or Candida infection which can also add to symptoms.  Thiamine is required to keep SIBO and Candida in check.   Thiamine works with Pyridoxine B 6, so if Thiamine is low and can't interact with Pyridoxine, the unused B 6 accumulates and shows up as high.   Look into the Autoimmune Protocol diet.  Dr. Sarah Ballantyne is a Celiac herself.  Her book "The Paleo Approach" has been most helpful to me.  Following the AIP diet made a huge improvement in my symptoms.  Between the AIP diet and correcting nutritional deficiencies, I felt much better after a long struggle with not feeling well.   Do talk to your doctor about Gastrointestinal Beriberi.  Share the article linked below. Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Keep us posted on your progress!
    • Trish G
      Thanks, that's a great addition that I hadn't thought of. 
    • trents
      Other diseases, medical conditions, medications and even (for some people) some non-gluten foods can cause villous atrophy. There is also something called refractory celiac disease but it is pretty uncommon.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.