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Think My Daughter Might Have Celiac-starting The Whole Process


mommy2almost3

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mommy2almost3 Newbie

My 3 yr old has been complaining for weeks now (probably 3 months) that her stomach hurts, 1-4 times a day, at random times. It goes away though after a minute and then she's fine. I brought it up at her 3 yr check up and her ped. told me to monitor it and call back if it keeps up, which it has-last night she woke up crying because her stomach hurt and then she had massive diah.-the first time she's had it after complaining of her stomach. It had a really bad odor too-not normal. My husband's cousin's 2 children have celiac and the episode last night got me thinking about it-she really doesn't have any other symptoms, except she's very thin for her age and doesn't eat a lot at all-she's 3 and weighs 27lbs (10th percentile). I have another appt. with her ped. next week and I'd like to bring up celiac but don't even know where to start, if I'm reading correctly, it sounds like blood work at this age is not accurate? sara


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dandelionmom Enthusiast

My 3 year old's blood work was accurate. She had the Celiac Panel and had it come back highly positive. I hope you find answers soon!

Kibbie Contributor
My 3 yr old has been complaining for weeks now (probably 3 months) that her stomach hurts, 1-4 times a day, at random times. It goes away though after a minute and then she's fine. I brought it up at her 3 yr check up and her ped. told me to monitor it and call back if it keeps up, which it has-last night she woke up crying because her stomach hurt and then she had massive diah.-the first time she's had it after complaining of her stomach. It had a really bad odor too-not normal. My husband's cousin's 2 children have celiac and the episode last night got me thinking about it-she really doesn't have any other symptoms, except she's very thin for her age and doesn't eat a lot at all-she's 3 and weighs 27lbs (10th percentile). I have another appt. with her ped. next week and I'd like to bring up celiac but don't even know where to start, if I'm reading correctly, it sounds like blood work at this age is not accurate? sara

My daughters blood work was positive at 18 months old.... if you get a positive there is no question so I believe its worth a shot.

mommy2almost3 Newbie

I'll bring up the blood test at her appt. since there's a chance it might pick it up-my husband's sister has a lot of celiac symptoms and had blood work done-she said some came back 'gray' zone?? The gi specialist suggested the biopsy but she won't have it done-she's 22 and she just doesn't want to deal with it right now. But if she has it, then the heredity thing is a lot closer to my kids. sara

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    • Mari
      I havesome of the replies to your post(which by the way is a gread piece of writing) and think that it will take lots of time and reading to decide what you are going to do. I would like to give you some practical suggestions. Your anxieties and OCD are a perfectly natural response when your body is sending signals that you have physical problems. The body does not use words it uses biochemistry and electric interactions. Celiac disease is not a killer disease so you are not going to die in the near future if you get glutened.  It can be a disabling problem unless you stay gluten free. For OCD attacks I have used spearmint or peppermint teas to relax. I also sitorlay down , relax as much as possible and review what I have been eating for the last few days and can usually identify that I have been eating too much of something and not enough of other foods that would balance my body. My body may have become too acid when it needs to be slightly alkaline. For me this means eating more vegetables and less starches and proteins. There are some websites that will list acid forming foods and alkaline forming food and many foods that are in between. Just admit that you are anxious about gluten being present in foods and anything that is used to prepare foods or even in your environment. When you eat anything that makes you anxious take a capsule of an anti-gliadin enzyme. I use a brand called GliadinX. It works in the stomach and will break down small amounts of gluten. Look up online the amount of plain water your body height and weight needs every day. Two years ago I was 5' 4" and weighed 100 lbs and needed 48 oz. every day.  Even if you can't drink the full amount if you just drink more water you will notice some improvement in your digestive system.  That's enough for tonight and it's way past my bedtime. Don't hesitate to ask more question or ask for more information.       
    • Scott Adams
      Canker sores can definitely be frustrating, especially when you're already managing a strict gluten-free lifestyle and have been diagnosed with celiac disease for so long. While these painful mouth ulcers aren’t exclusive to celiac disease, they can be linked to nutritional deficiencies—particularly of iron, folate, or vitamin B12 (as @trents mentioned )—which are common in people with celiac, even those who are very careful with their diet. Ongoing fatigue and aches might also suggest that your body isn’t fully absorbing nutrients or that there’s some underlying inflammation. It could be helpful to get bloodwork done to check for these deficiencies, and possibly even a full nutritional panel. Sometimes, new sensitivities or hidden sources of gluten or additives like sodium lauryl sulfate (common in toothpaste) can trigger symptoms like canker sores too. Since your reactions are so severe and you're highly vigilant, it might also be worth considering whether any other autoimmune conditions could be involved, as they can develop over time and overlap with celiac. Consulting with your doctor or a celiac-informed dietitian may help pinpoint the cause and bring relief.
    • knitty kitty
      @Dora77, You shouldn't worry about getting glutened through your skin.  You would have to touch a gluten infested doorknob and then put your hand in your mouth.   I'd be more concerned with your mom's heating up gluten bread in the oven and boiling gluten noodles.  These methods cause particles of gluten to become airborne which would then enter your nose and be swallowed, going into your digestive tract.  I have to avoid the bakery aisle at the grocery store for this reason.  An M95 mask helps. If you get nutritional deficiencies corrected, your immune system will calm down and be less reactive to gluten expose.  Vitamin D helps regulate the immune system.  Thiamine and Niacin help make digestive enzymes which would help digest any accidental gluten exposure.  Thiamine helps Mast cells not to release histamine, an inflammatory agent released as part of the reaction to gluten, and also a neurotransmitter that causes alertness and anxiety, and the flight or fight response.  Pyridoxine will help improve the OCD.  Remember your brain is part of the body.  Vitamin deficiencies affect your brain and mental health as well as the rest of your body.  
    • Jacki Espo
      I do not have evidence other than anecdotal but I am certain when I have gotten these it's the result of eating gluten (back when I did).  I don't get them now that I don't eat gluten. 
    • Dora77
      What really bothers me is if worrying about getting cc‘d from touching the same door knob as others touched is valid. Seems like an extremely unlikely way to get glutened but i read people saying that.    If thats true then theres realistically zero chance i dont get cc‘d in a non gluten-free household unless i Cook Everything myself and wash my hands multiple times in between and store all of my stuff separately
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