I think my daughter has celiac

[Aries213]

My daughter who is only 4 years old has symptoms of celiac disease. She’s very short(2 percentile), hasn’t gained weight for a year and she has a distended abdomen. I was suspecting celiac disease and GI doctor ordered a complete celiac panel which all came back negative. We also did abdominal xray and her xray showed a lot of stool in her rectum and the doctor told us to take miralax which wasn’t helping her distention. We did pediax, exlax, mylecon to relieve gas but nothing worked. She looks like she’s pregnant. We finally did the genetic test to rule out celiac completely but her genetic test came back positive. She has the hla dq8 not the dq2. The doctor said she does not have celiac now but she has twice the chance of developing it later in her life. I asked her how do you know if she doesn’t have it right now and she said the complete celiac panel was repeated and it all came back negative. I’m just not completely assured that she doesn’t have it right now since she’s still symptomatic. She wants me to try gluten free diet for now to see if her symptoms get better and wait to do the endoscopy since she’s still too young and she has to go through anesthesia. I’m just so worried and nervous. Any word of advice or encouragement  is appreciated. 

[knitty kitty]

Welcome to the forum!

Some Celiacs are serionegative.  Some have diabetes or anemia which affects their antibody production.  Since your daughter is already having symptoms, assuming her Celiac genes are active is a safe assumption.  

Has your daughter been checked for vitamin and mineral deficiencies?  Checking for nutritional deficiencies is part of proper follow up care.

Most Celiac patients have low Vitamin D (which helps growth), and iron.  A good gluten free B Complex may be beneficial.  

Keep a food/mood/poo'd journal may help connect her diet with symptoms, (and provides proof for doctors).  

Do watch for a reaction to dairy products, as these can sometimes exacerbate symptoms.  

Hope this helps!

[trents]

Young children's immune systems are immature and may not react antibody wise as that of adults.

I agree with knitty kitty that you should trial the gluten free diet for your daughter but just beware that if she ever did go for more testing, either serologic or the endoscopy/biopsy, she would need to go back on gluten for at least 2 weeks (biopsy method) or 6-8 weeks (serum antibody method) beforehand to ensure the testing is valid. And after you have been off gluten for a significant period there is typically a stronger reaction to it than before. On the other hand, if you take her off gluten and she improves you have found the problem. That is, she is either a celiac or she has NCGS (Non Celiac Gluten Sensitivity). Many of the symptoms are the same for both but NCGS does not damage the lining of the small bowel and thus it does not produce antibodies. And it is 1-12x more common than celiac disease. A NCGS diagnosis is arrived at through first eliminating celiac disease. The antidote is the same for both, total elimination of gluten from the diet.

[Sabaarya]

On 4/22/2022 at 12:20 PM, Aries213 said:

My daughter who is only 4 years old has symptoms of celiac disease. She’s very short(2 percentile), hasn’t gained weight for a year and she has a distended abdomen. I was suspecting celiac disease and GI doctor ordered a complete celiac panel which all came back negative. We also did abdominal xray and her xray showed a lot of stool in her rectum and the doctor told us to take miralax which wasn’t helping her distention. We did pediax, exlax, mylecon to relieve gas but nothing worked. She looks like she’s pregnant. We finally did the genetic test to rule out celiac completely but her genetic test came back positive. She has the hla dq8 not the dq2. The doctor said she does not have celiac now but she has twice the chance of developing it later in her life. I asked her how do you know if she doesn’t have it right now and she said the complete celiac panel was repeated and it all came back negative. I’m just not completely assured that she doesn’t have it right now since she’s still symptomatic. She wants me to try gluten free diet for now to see if her symptoms get better and wait to do the endoscopy since she’s still too young and she has to go through anesthesia. I’m just so worried and nervous. Any word of advice or encouragement  is appreciated. 

Hi Aries. I was diagnosed 8 months ago with celiac disease and never had positive antibodies,even though at the time of diagnose I was Marsh 3A stage,pretty advanced stage. My celiac disease was confirmed with biopsy and genetic test. I do have the same concerns about my 4 year old son. He is so thin 11 percentile for weight and 40 percentile for height. We have had appointment with Pediatrics GI today,he did ordered celiac panel and also his thyroid function tests. He was not concerned about his height and weight since I’m tiny person myself so he said he just might have my genes,but he also mentioned that he might have celiac disease for some reason he didn’t ordered genetic panel which I don’t understand. While my own GI mentioned that it’s not common for celiac patients to have negative antibodies my son’s GI doctor today said that it’s actually became common,that he’s seen a lot of kids having negative antibodies but positive biopsies for Celiac. So now I’m kind of concerned. But he also asked for couple of symptoms which my son doesn’t have. Like nausea or vomiting,pain in abdomen,bleeding.I don’t like his stool texture and I did mention that to him, but it also maybe related to foods that he consumes since he has pretty much low level of allergies to bunch of staff. Have your doctor to check for food allergies,blood count,metabolic panel and also thyroid functions. That’s what we did. His blood count and metabolic panel came back fine,but still waiting for celiac antibodies and thyroid functions tests.