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Does This Sound Like Celiac In A 17 Mo. Old Girl?


immykidsmommy

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immykidsmommy Newbie

New here. Will be going to 18 mo. checkup on June 8th and need advice.

DD is 17 mo. was born 7 lb 11 oz, 20 in.

15 mo check up - 19 lb 16 oz, 31 in. I didn't get the percentiles but I know the weight is LOW

I am 35 yr. old. My first cousin was diagnosed with celiac when an infant. She is a few years older than me. I also had an aunt who had lupus - died over 20 years ago. These 2 relatives are both on my father's side of family.

My biggest concern here is that my daughter seems to be so skinny, and though she is gaining weight, she is in the lowest percentiles.

She has mushy poops about 4 times a day. Not wet, not runny, not particularly foul smelling - but I'd say 70% of them are pale in color. She is awake from 7 am to 7 PM with a 1 1/2 - 2 hour nap in the afternoon. She is very well adjusted, happy, social, loves to run about, play, eat - she eats like a pig.

She just poops alot (in my mind) and its starting to freak me out.

What questions should I pose to my ped when we go in June and is there a way for my husband and I to get some simple tests that will either 1) preclude the need to stick up my DD with needles or 2) necessitate that we do #1.

Thanks for any advice!

CR


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TCA Contributor

My son's symptoms started with his weight falling off, tooth enamel defects, and mushy poops, which turned into diarrhea 6+ times per day. The bad news is that he had 2 negative biopsies and inconclusive bloodwork before we realized the tests for kids under 5 are very inconclusive. We did the gene test and he has both the DQ2 and DQ8 genes for celiac. It was through prometheous and very expensive. We started a diet trial in January and the results have been amazing. His D stopped. He potty trained almost immediately. He's gaining weight and growing taller. He is less irritable. The doc now agrees that it's celiac. I don't know your doc, but be aware that not many are aware of celiac and how widespread the effects are. You might want to simply try the diet for a few months and see if you see any improvement. It's hard to know what to do, but that's what finally worked for us. If you do get blood work make sure they test for all the antibodies (4), and IgA deficiency, and do a CBC to check for anemia. Good luck!

immykidsmommy Newbie

TCA - thanks for your reply. THere is so much out there about what you can and cannot eat that I was wondering if you could give me a reference as to where to find the diet. I'm going to continue as present until our June 8th appt so I can get the weight gain for the last 3 months but already plan to institute a gluet free diet after that to see for myself what happens. If she starts thriving on it, then that pretty much tells me that we have a problem here with gluet.

What is really freaking me out is I read somewhere on the net that untreated celiac can spark off autism!

As a special ed. teacher I know that often this condition emerges around 2 to 3 years old. Have you heard anything on this?

thanks again

My son's symptoms started with his weight falling off, tooth enamel defects, and mushy poops, which turned into diarrhea 6+ times per day. The bad news is that he had 2 negative biopsies and inconclusive bloodwork before we realized the tests for kids under 5 are very inconclusive. We did the gene test and he has both the DQ2 and DQ8 genes for celiac. It was through prometheous and very expensive. We started a diet trial in January and the results have been amazing. His D stopped. He potty trained almost immediately. He's gaining weight and growing taller. He is less irritable. The doc now agrees that it's celiac. I don't know your doc, but be aware that not many are aware of celiac and how widespread the effects are. You might want to simply try the diet for a few months and see if you see any improvement. It's hard to know what to do, but that's what finally worked for us. If you do get blood work make sure they test for all the antibodies (4), and IgA deficiency, and do a CBC to check for anemia. Good luck!
TCA Contributor

There are soooo many things that gluten can cause to those who cannot tolerate it. For me it was rashes, joint pain, irritibility, and gas. My son, D, late walker (16 mos), poor speech development, tooth enamel defects, irritibility, rashes, insomnia. My daughter, tooth enamel defects, projectile vominting, reflux, constipation. She is very delayed, but probably because of her heart condition more than the celiac. There is a strong link with Autism. Many references can be found on this site, but here is one. Open Original Shared Link

Maybe by learning about this connection you can help your students....

As for the diet. I have a list for my son that I will be glad to send you. He's a picky eater and it's taylored for him. Just PM me your e-mail address.

This site has a foods list that is good too. Look under the Site Index to find it. I'll be glad to answer anything I can!

VydorScope Proficient

I think this is the list TCA is refering to...

https://www.celiac.com/st_prod.html?p_prodi...-30106230273.0a

My advice, and what I wish I was told when I was in a simular postion... Try the diet for a few weeks and see what happens. EPLSY in young ones (mine was 18mos when we learnd or celiac disease) the diet is the best and safest test. And be extremly strict on the diet, do not allow ANY chances. Its all or nothing. Even a little gluten will invalidate the enitire test.

Im not a doctor, just a parent thats beenn there....

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    • par18
      Thanks for the reply. 
    • Scott Adams
      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
    • Scott Adams
      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
    • Seaperky
      I found at Disney springs and Disney they have specialist that when told about dietary restrictions they come and talk to you ,explain cross contamination measures tsken and work with you on choices. Its the one place I dont worry once I've explained I have celiac disease.  Thier gluten free options are awesome.
    • Churley
      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
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