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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,554
    • Most Online (within 30 mins)
      7,748

    Becky 0163
    Newest Member
    Becky 0163
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • 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.