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What Symptoms Did You See In Your Little One?


goodnews

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goodnews Apprentice

Hello everyone! I am in the process of testing for celiac and the more I think about my daughter, the more I wonder about her symptoms. I wanted to know some of the symptoms that you noted in your children that lead you to think of possible celiac. My daughter is 3 1/2. She LOVES carbs....noodles and crackers are her favorite things ever. I have to tell her no often and give her other things. She has been constipated since she started eating solids (not sure if it was when I introduced gluten or not...it seems so long ago, lol). A new symptom is she has had diarrhea (just once a day mostly) for about 8 days this month. Also, her bowel mvmts are at times very pale in color and sometimes have fatty acids floating in on top. She has never had a big appetite, but it has decreased and she just looks tired a lot and doesn't have as much energy. She is very petite. She is sleeping a little more than usual too. And she sometimes says her tummy doesn't feel good. she can have some very irritable moments, but those haven't been too bad lately. So...those are my concerns. I was kind of wanting to wait until my genetic testing comes back in a week or so before I brought it up with her doctor. They already saw some questionable things in a biopsy I had that suggested celiac, but my blood test was negative so this is the route they are going with me.

So what symptoms did your kids have?


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divamomma Enthusiast

My daughter was chronically constipated, irritable, short attention span, constantly hungry, constantly tired, exhaustion, dark cirlces/bags under eyes. She was never underweight nor short. HTH.

goodnews Apprentice

My daughter was chronically constipated, irritable, short attention span, constantly hungry, constantly tired, exhaustion, dark cirlces/bags under eyes. She was never underweight nor short. HTH.

Thanks, that is helpful. It is interesting how different everyone can be. My daughter generally often hungry for snacks...just eats frequently and smaller amounts. But this past week hasn't really been as hungry much.

Roda Rising Star

My youngest son started complaining of random daily tummy aches and "puke burps" last June. Sometimes he would just lay around on the couch and other times he would go off and play. I also noticed on a few occasions fat floating in the toilet. He also developed an irrational obsession with his velcro and strings on his shoes. Every day was a battle if they were not "so so" and even then he would throw major temper tantums over it. He was 5 1/2 at the time and it went far beyond a normal kid fixation. He had his positive ttg in Nov. last year and thats when I put him gluten free (he had negative testing after I was diagnosed). At is 6 yr check up in Feb. the new NP noted that he gained quite a bit of weight (he is still skinny minny). At age 5 he was at the 10th percentile on weight and 50th in height. At 6 she stated he had come up to the 50th in weight too. Hmm... He had bad reflux as a baby and could not tolerate eating, or me eating, any dairy, oats, rice, or tree nuts. He also had issues with chronic rhinosinusitis starting at 2 months old. Eliminating so many foods from my diet, in hindsight, is what eventually lead me to find out I had celiac. So I wonder if he has always had a gluten sensitivity since a baby and it took until he was 5 1/2 to show up on blood work. He rarely if ever complains of tummy aches or reflux any more and the irrational fixation with the velcro straps and shoe strings has ceased to exist, YEAH! He will still have an occasional temper tantrum, but I can directly relate those when he has had a bad case of strep and not gluten.

mommida Enthusiast

My daughter was diagnosed "probable" celiac at 17 months. She exclusively breast fed and her BMs would sometimes have a green cast of the more liquid part and stringy blobs of more of the "fatty" part. This was explained as the description of "over milk production" of the feeding mother. Her first attempt at rice cereal mixed into Breast milk caused severe constipation. Doctors weren"t concerned. Told me to switch to barley cereal that the rice was too binding. Gave her some of the barley cereal and her belly bloated instantly. Brought her into the office and tried to explain how radically her belly distended. They told me babies have bellies. She started vomitting and having severe explosive "D". Honestly I did the research and had to ask to have her tested. Experimented with the gluten-free diet because the wait was so long to be reffered to ped. gastro. She had a major improvement. She was put on a gluten challenge, and ended up being hospitalized for dehydration from the "D" and vommiting. She was too sick to have the scope, blood test results came in elevated, and then she genetic tested (positive for DQ2 and DQ8).

At 17 months the gluten free diet was started and things were great until she was 5.

She starting having symptoms like she was getting gluten from somewhere. Now she was old enough to talk. "D", vommiting, headaches,tired, dark circles under her eyes, and she was complaining that "her whole stomach hurt". She would circle from just under her ribs to just above her hips. The vommiting was getting worse and worse. "Puke burps" and vomitting an entire meal 5 minutes after eating. She went in for the endoscopy with biosy and was diagnosed with Eosinophilic Esophagitus. She has more food "triggers" to avoid but she is doing pretty good and she is 8 now.

Kimmik95 Rookie

My son was just diagnosed a few months ago. His main complaint was joint pain, but he did have occassional belly pains. He also wasn't growing. He'd gone from 75% height and 25% weight to 15% height and 3% weight in about a year and had gained no weight in about a year. We are pretty sure his celiac disease was triggered last year during Kindergarten because he was severely bullied. Chris did also have floaty bm, but wasn't ever really constipated or loose.

Since you are being tested, I would go ahead and have your daughter tested. It won't hurt and then you'd know.

Hello everyone! I am in the process of testing for celiac and the more I think about my daughter, the more I wonder about her symptoms. I wanted to know some of the symptoms that you noted in your children that lead you to think of possible celiac. My daughter is 3 1/2. She LOVES carbs....noodles and crackers are her favorite things ever. I have to tell her no often and give her other things. She has been constipated since she started eating solids (not sure if it was when I introduced gluten or not...it seems so long ago, lol). A new symptom is she has had diarrhea (just once a day mostly) for about 8 days this month. Also, her bowel mvmts are at times very pale in color and sometimes have fatty acids floating in on top. She has never had a big appetite, but it has decreased and she just looks tired a lot and doesn't have as much energy. She is very petite. She is sleeping a little more than usual too. And she sometimes says her tummy doesn't feel good. she can have some very irritable moments, but those haven't been too bad lately. So...those are my concerns. I was kind of wanting to wait until my genetic testing comes back in a week or so before I brought it up with her doctor. They already saw some questionable things in a biopsy I had that suggested celiac, but my blood test was negative so this is the route they are going with me.

So what symptoms did your kids have?

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    • trents
      Understood. And don't beat yourself up about this. Many are in the same boat as you, having experimented with the gluten-free diet before getting formerly tested. It is a logical, common sense approach when you don't have the knowledge about how testing works or you don't have the healthcare resources to afford testing. And some experience such severe reactions to gluten that it is impossible to get through the gluten challenge in order to get tested. So, they must live with the ambiguity of not knowing for sure if they suffer from celiac disease or NCGS. But at the end of the day, the antidote is the same for both. Namely, life-ling abstinence from gluten. Recently there was an article on posted on this forum about the develop of a new testing method for diagnosing celiac disease that do not require a gluten challenge. It is still in the developmental stage and probably years away from becoming main streams even if it pans out. But there is hope at least.
    • Dema
      Ooh thanks for all the info I'll check them out, though I may not be functional after 6 slices for 6 weeks 😅
    • Dema
      alright thank your help! 🤍
    • Scott Adams
      Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
    • Scott Adams
      Your experience is incredibly common and frustrating for many in the celiac and gluten-sensitive community, and it's especially challenging with the added layer of healthcare disparities for people of African descent. A negative endoscopy and blood panel, while the gold standard, are not infallible and can miss cases, particularly if you weren't consuming a significant amount of gluten leading up to the tests (the "gluten challenge"). Your dramatic improvement on a gluten-free diet is the most critical piece of evidence here—your body is giving you the answer the tests could not. The symptoms you're describing now, especially the dyshidrotic eczema and blister bumps, are huge red flags for a gluten-related disorder, and your GP dismissing the possibility of dermatitis herpetiformis without a biopsy is a significant oversight. Requesting a new dermatologist and specifically asking for a skin biopsy next to an active lesion (not on it) is the absolute best next step. In the meantime, documenting your symptoms with photos and a food/symptom diary will build a powerful case for yourself. While the financial burden of a gluten-free diet is very real, your health is the priority; perhaps focusing on naturally gluten-free whole foods like rice, beans, and vegetables, rather than expensive processed substitutes, could be a more sustainable path forward until you can get a definitive opinion.
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