Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

3 Yo Undergoing Tests... Low Bmi, Possible Celiac - Help!


balmerhon

Recommended Posts

balmerhon Rookie

This is a bit of a long story, but I'll keep it as short as I can.

My DS plateaued on weight around 1 yo. He had always been 'below average' but not hugely so. For about 4-6 months he gained very little. At the time, we were living in the UK where he was born. We were referred to a pediatrician who ran celiac, cystic fibrosis, and absorption tests. All came back fine. Aside from poor weight gain, he had diarrhea. Other than that, no symptoms. He then began to gain some weight though he was still small for his age.

The diarrhea continued with the diagnosis of 'toddler diarrhea'. In the UK, they wait until the child is 3 before they consider further investigations. But we moved to the US back in November.

The diarrhea has persisted (always once a day, often 2, rarely 3). He was retested for parasites in January as the ped here was intrigued that a round of antibiotics he took for an ear infection seemed to improve things. Again, all came back negative. Still, she referred me to a ped GI at the University of Maryland for further investigation as she felt things had gone on too long. She knew I wanted to start potty training in order to get him into preschool and diarrhea, as you know, makes that a bit hard.

A couple days ago we had the appt with the ped GI. She was very abrupt with us and I was not pleased with the whole dept. That said, the first thing she noted was that his BMI is below 5%. His height and weight are low (esp weight) but it's the BMI that is off the chart. No one has ever done his BMI before!

She took blood to rerun all the tests including celiac. She sent a dietician in to see if he's getting 1300 calories a day (depends on the day!). We're now waiting for the results.

Here are some other points about him:

he has no symptoms of abdominal pain, bloating, gas, etc.

his father is 5'11 with a 31" waist and a low BMI

there is a short gene in the family though neither his father nor I are short

he is very energetic and is a dream sleeper

he eats though he's picky and doesn't have a big appetite

there is no celiac in the family that we know of

however, I have mild IBS and there is autoimmune disease in the family

I don't know how long the test results will take to come back. Meanwhile, I am now stressing about getting more calories into him and how on earth we will cope if he is celiac. A gluten-free diet in our current situation will be very difficult as we live with my mother, cousin, husband, and my youngest son (who is only 26 months but weighs more than DS#1, eats well, and has little diarrhea).

As I pointed out, this will be the second test for celiac. Any thoughts on what will happen if this one also comes back negative?

To be frank, he is a happy, energetic kid. I'm not sure how worried I should be!!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Genna'smom Apprentice

Hi and welcome. I had an almost 2 yr old at the time stop eating and drinking totally. She had no symptoms of Celiac and it does not run in either family. She ended up in 2 hospital for FTT but no one ever did a BMI on her that I know of - just that her weight was off the charts. While in the hospital looking for things they did blood work for tons of stuff which all came back negative and then they did an endoscopy to check her esopgas (sorry spelling>?) as she has acid reflux and was wondering if that was the problem but while in there they did biopcies and when the test came back she had early warning stages of Celiac...

On another note - blood tests are often false at this age.......

Bonnie

swalker Newbie

How many ear infections has he had? After antibiotics he should be on probiotics for a month to repopulate his good flora.

In my family, ear infections are one symptom of our milk intolerance. I'd probably take out milk for four days (rice milk is a great replacement, soy is also a highly allergic food) and see if that cuts the D. If not then I'd remove gluten for four days. The next likely candidates are soy, corn and nightshades.

balmerhon Rookie
How many ear infections has he had? After antibiotics he should be on probiotics for a month to repopulate his good flora.

In my family, ear infections are one symptom of our milk intolerance. I'd probably take out milk for four days (rice milk is a great replacement, soy is also a highly allergic food) and see if that cuts the D. If not then I'd remove gluten for four days. The next likely candidates are soy, corn and nightshades.

He's had only one ear infection in his life. This was in October of 2008. He'd had D before then and it started up again after the antibiotics wore off. That said, his poop was still soft when on the antibiotics, just not as soft as before! So far none of the medical professionals we've seen think he has milk issues - though I'm aware the symptoms can vary pretty widely?`

swalker Newbie

They do I my family. We have symptoms ranging from chronic ears infections, red cheeks and ears and late bed wetting to self limiting to dairy and autistic mannerisms.

It only takea four days for a food to completely clear the body. Then when you eat the food, first thing on an empty stomach, the reaction is very obvious.

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,397
    • Most Online (within 30 mins)
      7,748

    Megannnnn
    Newest Member
    Megannnnn
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Scott Adams
    • Scott Adams
      I had the same thing happen to me at around your age, and to this day it's the most painful experience I've ever had. For me it was the right side of my head, above my ear, running from my nerves in my neck. For years before my outbreak I felt a tingling sensation shooting along the exact nerves that ended up exactly where the shingles blisters appeared. I highly recommend the two shot shingles vaccine as soon as your turn 50--I did this because I started to get the same tingling sensations in the same area, and after the vaccines I've never felt that again.  As you likely know, shingles is caused by chicken pox, which was once though of as one of those harmless childhood viruses that everyone should catch in the wild--little did they know that it can stay in your nervous system for your entire life, and cause major issues as you age.
    • trents
    • Clear2me
      Thanks for the info. I recently moved to CA from Wyoming and in that western region the Costco and Sam's /Walmart Brands have many nuts and more products that are labeled gluten free. I was told it's because those products are packaged and processed  in different  plants. Some plants can be labeled  gluten free because the plant does not also package gluten products and they know that for example the trucks, containers equipment are not used to handle wheat, barely or Rye. The Walmart butter in the western region says gluten free but not here. Most of The Kirkland and Members Mark brands in CA say they are from Vietnam. That's not the case in Wyoming and Colorado. I've spoken to customer service at the stores here in California. They were not helpful. I check labels every time I go to the store. The stores where I am are a Sh*tshow. The Magalopoly grocery chain Vons/Safeway/Albertsons, etc. are the same. Fishers and Planters brands no longer say gluten free. It could be regional. There are nuts with sugar coatings and fruit and nut mixes at the big chains that are labeled gluten free but I don't want the fruit or sugar.  It's so difficult I am considering moving again. I thought it would be easier to find safe food in a more populated area. It's actually worse.  I was undiagnosed for most of my life but not because I didn't try to figure it out. So I have had all the complications possible. I don't have any spare organs left.  No a little gluten will hurt you. The autoimmune process continues to destroy your organs though you may not feel it. If you are getting a little all the time and as much as we try we probably all are and so the damage is happening. Now the FDA has pretty much abandoned celiacs. There are no requirements for labeling for common allergens on medications. All the generic drugs made outside the US are not regulated for common allergens and the FDA is taking the last gluten free porcine Thyroid med, NP Thyroid, off the market in 2026. I was being glutened by a generic levothyroxin. The insurance wouldn't pay for the gluten free brand any longer because the FDA took them all off their approved formulary. So now I am paying $147 out of pocket for NP Thyroid but shortly I will have no safe choice. Other people with allergies should be aware that these foreign generic pharmaceutical producers are using ground shellfish shell as pill coatings and anti-desicants. The FDA knows this but  now just waits for consumers to complain or die. The take over of Wholefoods by Amazon destroyed a very reliable source of good high quality food for people with allergies and for people who wanted good reliably organic food. Bezos thought  he could make a fortune off people who were paying alot for organic and allergen free food by substituting cheap brands from Thailand. He didn't understand who the customers were who were willing to pay more for that food and why. I went from spending hundreds to nothing because Bezo removed every single trusted brand that I was buying. Now they are closing Whole foods stores across the country. In CA, Mill Valley store (closed July 2025) and the National Blvd. store in West Los Angeles (closed October 2025). The Cupertino store will close.  In recent years I have learned to be careful and trust no one. I have been deleberately glutened in a restaurant that was my favorite (a new employee). The Chef owner was not in the kitchen that night. I've had  a metal scouring pad cut up over my food.The chain offered gluten free dishes but it only takes one crazy who thinks you're a problem as a food fadist. Good thing I always look. Good thing they didn't do that to food going to a child with a busy mom.  I give big tips and apologize for having to ask in restaurants but mental illness seem to be rampant. I've learn the hard way.          I don't buy any processed food that doesn't say gluten free.  I am a life long Catholic. I worked for the Church while at college. I don't go to Church anymore because the men at the top decided Jesus is gluten. The special hosts are gluten less not gluten free. No I can't drink wine after people with gluten in their mouth and a variety of deadly germs. I have been abandoned and excluded by my Church/Family.  Having nearly died several times, safe food is paramount. If your immune system collapses as mine did, you get sepsis. It can kill you very quickly. I spent 5 days unconscious and had to have my appendix and gall bladder removed because they were necrotic. I was 25. They didn't figure out I had celiac till I was 53. No one will take the time to tell you what can happen when your immune system gets overwhelmed from its constant fighting the gluten and just stops. It is miserable that our food is processed so carelessly. Our food in many aspects is not safe. And the merging of all the grocery chains has made it far worse. Its a disaster. Krogers also recently purchased Vitacost where I was getting the products I could no longer get at Whole Foods. Kroger is eliminating those products from Vitacost just a Bezos did from WF. I am looking for reliable and certified sources for nuts. I have lived the worst consequences of the disease and being exposed unknowingly and maliciously. Once I was diagnosed I learned way more than anyone should have to about the food industry.  I don't do gray areas. And now I dont eat out except very rarely.  I have not eaten fast food for 30 years before the celiac diagnosis. Gluten aside..... It's not food and it's not safe.  No one has got our backs. Sharing safe food sources is one thing we can do to try to be safe.        
    • Mmoc
      Thank you kindly for your response. I have since gotten the other type of bloods done and am awaiting results. 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.