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Possible Celiac 19 Month Old


sleepyrainfall

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sleepyrainfall Newbie

Okay, so here is where I am just clearing my mind out a little.

18 month appointment was not as expected. Dr. mentioned she had fallen into the 5th % for weight gain. Was told that the loose bm's (with large chunks of undigested food) could be toddler diareah, or due to the virus she got in Feb. which may not have allowed her intestines to heal. Stop drinking milk. It's okay to consume other dairy products. Come back in a month for a check up. OK. I can do that.

19 month check up. Still little to no weight gain. Kid eats everything she sees. Not picky. Rephrase, rarely picky. Eats fruits and veggies with indiffereance. Drinks 1/2 juice and 1/2 water (at most 1xper day). Soy milk has been supplemented. Drinks water throughout day. Likes turkey and chicken. Not a fan of beef. Eats cheese like it's going out of style. Avoids sweets, cakes or breads. Appears to enjoy oatmeal and cereal. Still pooping 1-3 times a day w/chunks of food , occationally bm looks like she's ate sand. 1st bm is more formed. 2nd is partially formed, more "watery" and can leak out of diaper. 3rd is always watery. Smelly. They always smell like what she eats (if that makes sense). Dr. says he wants her to drink 3 pediasures a day (yikes!) and see him in one month. Discontinue if causes diareah to worsen. OK. No problem. Well maybe problem. She didn't like sidekicks, but will do what we must. Dr. mentions Celiac and FTT as possibles if not "fixed" in 1 month. Also says may recomend to GI specialist, as he does not trust blood work.

4 days into pediasure- call Dr. Diareah has increase when Pediasure intake increased. Normal bowls 2-3 per day until day 3. Day three finally convinced her to drink 1.5 pediasure drinks (after withholding her favorite alternative, water) Day 4: she woke in pain @ 7am. Struggled to have BM which quickly became diareah. refused to eat BF 9:30 am loose bm #2. 10:30 a.m. 1/2 after breakast. loose bm #3 still not eatting at L. eats immeadiatly after returning home from BabySitter's. Injests maderine orange and popcorn. Eats little spagetti 15 mins after dinner (@ 6:00) loose bm #4. Day 5 still has serious diareah and does not want to eat. Called Dr. may see him tomorrow if still not eating.

Possible relivant information:

My DX- acid reflux, IBS, Diverticulitus, depression, Gestational Diabeatis when prego with her. 4 lbs gained entier pregancy. Baby's weight at birth 7lbs 14 oz. current weight 21 lbs. also cystic fibrosis gene carrier.

My Mom's DX- acid reflux, IBS, Lactos Intolerance, depression

Husbands DX- Also carrier of cystic fibrosis gene.

Baby was screened at birth for CF. She is not a carrier of the gene

There are some symptoms she is not showing, but from reading the posts (especially about sandy poo and red bottoms)I am more convinced than I want to be that she has this and that my mother and I also suffer from the same thing.

Just from looking up information I feel like I may be onto something. Any advice/stories to share? I know that experiances are varied and differ per case, but I am feeling a little overwhelmed and unprepared.


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squirmingitch Veteran

There are others on here who are far more versed than I. But, having said that; I think you could well be MORE than onto something!

She needs to be tested, you need to be tested & your mom needs to be tested. And ALL of you have to remain eating gluten until all the tests have been completed.

Mdhriggin Newbie

Sounds a lot like what my daughter experienced before getting the diagnosis at around the same age. Start with the blood test. If nothing else the smelly diarrhea is a malabsorption of some kind.

mommida Enthusiast

Do not start a gluten free diet for her until testing is done.

To keep some sanity, keep a food journal (it looks like you have started doing that). Keep the amounts of food, time consumed, and BM reactions with any other symptoms.

sleepyrainfall Newbie

Do not start a gluten free diet for her until testing is done.

To keep some sanity, keep a food journal (it looks like you have started doing that). Keep the amounts of food, time consumed, and BM reactions with any other symptoms.

My babysitter wanted to start the diet right away, and I saw from everyone's posts that it's not even a good idea to go light before we are tested. She is doing better today. Back to 3 bm's and eating. Also considering she may have had a virus as I got similar symptoms yesterday and then phone call from Babysitter also mentioned same symptoms. Either way were are going to see Dr. on Monday for a follow up and prob. referal for allergy testing as well as stool sample until we get into the GI.

I started keeping a log of her food back when taking away the dairy for a month did not appear to help her reduce amount of BMs. I am used to measuring my food from my gestational diabetes. Thanks to all for support. Sometimes it just helps to hear you are on the right track.

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    • trents
      So the tTG-IGA at 28 is positive for celiac disease. There are some other medical conditions that can cause elevated tTG-IGA but this is unlikely. There are some people for whom the dairy protein casein can cause this but by far the most likely cause is celiac disease. Especially when your small bowel lining is "scalloped". Your Serum IGA 01 (aka, "total IGA") at 245 mg/dl is within normal range, indicating you are not IGA deficient. But I also think it would be wise to take your doctor's advice about the sucraid diet and avoiding dairy . . . at least until you experience healing and your gut has had a chance to heal, which can take around two years. After that, you can experiment with adding dairy back in and monitor symptoms. By the way, if you want the protein afforded by dairy but need to avoid casein, you can do so with whey protein powder. Whey is the other major protein in dairy.
    • jenniber
      hi, i want to say thank you to you and @trents   . after 2 phone calls to my GI, her office called me back to tell me that a blood test was “unnecessary” and that we should “follow the gold standard” and since my biopsy did not indicate celiac, to follow the no dairy and sucraid diet. i luckily have expendable income and made an appt for the labcorp blood test that day. i just got my results back and it indicates celiac disease i think 😭   im honestly happy bc now i KNOW and i can go gluten free. and i am SO MAD at this doctor for dismissing me for a simple blood test that wouldn’t have cost her anything !!!!!!!!!!! im sorry, im so emotional right now, i have been sick my whole life and never knew why, i feel so much better already   my results from labcorp:   Celiac Ab tTG TIgA w/Rflx Test Current Result and Flag Previous Result and Date Units Reference Interval t-Transglutaminase (tTG) IgA 01 28 High U/mL 0-3 Negative 0 - 3 Weak Positive 4 - 10 Positive >10 Tissue Transglutaminase (tTG) has been identified as the endomysial antigen. Studies have demonstrated that endomysial IgA antibodies have over 99% specificity for gluten sensitive enteropathy. Immunoglobulin A, Qn, Serum 01 245 mg/dL 87-352
    • JoJo0611
      Thank you this really helped. 
    • Samanthaeileen1
      Okay that is really good to know. So with that being positive and the other being high it makes sense she diagnosed her even without the endoscopy. So glad we caught it early. She had so many symptoms though that to me it was clear something was wrong.   yeah I think we had better test us and the other kids as well. 
    • GlorietaKaro
      One doctor suggested it, but then seemed irritated when I asked follow-up questions. Oh well—
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