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Can You Be Celiac And Not Ftt?

sarahelizabeth

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sarahelizabeth Contributor
sarahelizabeth
Posted

I am just wondering if all kids who are diagnosed as celiac are failure to thrive. My son is small but definitely not ftt. He's gaining weight and staying on his growth curve at around the 10th percentile. He's gone from almost 19lbs at a year to about 24lbs at 22 months... so he's gained 5lbs in 10 months which is a good weight gain I think. He's got a lot of symptoms though... chronic constipation and now alternating constipatin and diarrhea, TONS of gas, bloated little belly, irritable, very poor appetite, tires very easily and sleeps a lot, plus constant rash/eczema issues. I am taking him to the Drs on Friday to push for a test but I recall in the past that my ped didn't think he could have celiac because he was maintaining his growth curve and not ftt (this was something he brought up on his own when brainstorming through the constipation problems we were having at about 9 months and that statement was what lead me to start looking into celiac as I had never considered it prior).

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Ursa Major Collaborator
Ursa Major
Posted

Your doctor is very ill informed about celiac disease. Ftt is ONE possible symptom of celiac disease in babies. But even though it's a red flag for celiac disease, it isn't nearly always present. For some kids the only symptom could be ADD, or anemia, or angry outbursts!

Your son has enough symptoms to be tested. And even though he is growing, he isn't growing that well, really. If your pediatrician won't test him, find a new doctor who will.

Juliet Newbie
Juliet
Posted

My son didn't fit the typical "failure to thrive" symptoms until he started to become very dramatically ill. Until that time he was consistently in the 50th to 75th percentile in height and weight, but had the irritability (doctor said it was probably just teething), discoloration of the teeth (doctor said he needed fluoride supplements), lots of ear infections, and constipation/diarrhea cycle (diagnosed as toddler diarrhea at the time, even when he started getting scary ill).

But in a sense, he wasn't thriving before he was diagnosed. Like I said, he was consistently in the 50th to 75th percentile in height, but his father and I were normally taller than that while growing up (we're both on the tall side). Once he became gluten free, within 6 months he shot up to the 90th percentile. At just under 3 1/2 years of age, he's taller than most 4 year olds we know.

Nantzie Collaborator
Nantzie
Posted

My son was a little on the short side for our family and quite thin, but nowhere near the point where FTT was even ever brought up. When we put him on the gluten-free diet, he plumped up and his irritability and reclusiveness went away. He went from being what I called quiet and "serious" to a happy, goofy, loud little 2yo boy.

My advice is to get a new doctor. Even if you can't get a new doctor or the new doctor is just as poorly informed at the first one, you CAN put him on a gluten-free diet without a doctor's approval. It seems like such a dramatic thing to do without knowing for sure he has celiac. But, whether you have a doctor's approval or not, the ONLY thing that can be done in the case of celiac is a gluten-free diet.

There are tons of people on this forum who do not have an official diagnosis and just decided to try the diet just to see what would happen.

If you can let us know where you're located, maybe someone here knows of a good doctor.

Also keep in mind that other foods can cause serious problems. The other top food allergens are all common foods: Soy, dairy, eggs, peanuts, tree nuts, fish and shellfish.

Both of my kids had the Enterolab tests done. www.enterolab.com I decided to try the gluten-free diet for them because of positive Enterolab tests. I keep them gluten-free because of the dramatic improvment for both of them on the gluten-free diet. My 4.5yo daughter doesn't want anything to do with gluten and knows exactly what it does to her. We didn't put her gluten-free until last summer, so she still remembers the tummy aches.

I'm so glad you found us here. Unfortunately the medical community in general isn't as well-informed as it could be, but there are various associations that are working to improve that. The number of people who find us here AFTER diagnosis has increased quite a bit, so I'm sure the information is getting out there slowly but surely.

Nancy

sarahelizabeth Contributor
sarahelizabeth
Posted
  • Author

Hmmmmm... I never associated his chronic ear infections with celiac?? He's had 11 in his short little life and may have been antibiotic resistant. He's had tubes twice now :(

He does have food allergies... peanuts, tree nuts, vanilla, and green pepper... but we have most of those removed from his diet now (still struggling to completely remove vanilla... but we are getting there slowly but surely). We always thought he had a milk allergy but he has tested negative both with skin prick and RAST.

I appreaciate all of your replies. I hope that our ped will agree to testing when I take him in on Friday... I really do hate the thought of finding a new Dr as I really do like him a lot... but of course am willing to do whatever is necessary for the health of my child!!

Nantzie Collaborator
Nantzie
Posted

If you like your doctor that's a VERY important and very GOOD thing. If I liked my child's doctor, I would approach it differently. So many of us are ridiculed or dismissed or treated like hysterical parents that that's the conclusion we tend to jump to.

If he's a good doctor, it's not that he doesn't care, he just doesn't KNOW.

If you can bring in a print-out of some information for him to look at, with some key points color-highlighted (pink or green highlighters are usually especially effective, I've found), you may be helping him to learn more about this, and in turn helping other patients of his.

When I first found out about celiac, and how it wasn't just the people who were skin and bones, I found some good, reliable sources to print out and show to my doctor, as well as my kids' ped GI. Just in case they hadn't heard more than the old-fashioned basics.

Here are the links I used:

These two are from the National Institutes of Health, a .gov that is part of the federal government -

Open Original Shared Link

Open Original Shared Link

This is from the Mayo Clinic -

Open Original Shared Link

Nancy

Ursa Major Collaborator
Ursa Major
Posted

Sarah, what most doctors (and as a rule, they know NOTHING about nutrition) don't tell you is, that an allergy and an intolerance are two different things. Those tests you had done only register immediate reactions, while intolerances often have delayed reactions. Your son could well be dairy intolerant, and it wouldn't show up on allergy testing.

A dairy intolerance could cause recurrent ear infections, as could celiac disease. I've long known of dairy causing ear infections, long before I even knew what gluten is.

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ptkds Community Regular
ptkds
Posted

I agree w/ everyone else. My dd was diagnosed when she was 16 months old. She was also my biggest dd at that age. She was around the 25th %. Then I was diagnosed after she was, and I am overweight. I definetly don't have a FTT problem! :rolleyes:

Ask for the test. I requested it on my dd and it came up positive. My ped didn't have a problem w/ doing the test, and she even agreed that it was a good idea. And she didn't even have as many symptoms as your dc.

Good Luck and keep us updated!

ptkds

Juliet Newbie
Juliet
Posted

And you mentioned about problems with lactose - our pediatric g.i. said often when people have active celiac disease they can't digest lactose since it's the first enzyme to go. Our son could not digest milk well at all when he was first diagnosed, but after a week and a half of being gluten free, he was drinking milk without any problems.

Kibbie Contributor
Kibbie
Posted
I am just wondering if all kids who are diagnosed as celiac are failure to thrive. My son is small but definitely not ftt. He's gaining weight and staying on his growth curve at around the 10th percentile. He's gone from almost 19lbs at a year to about 24lbs at 22 months... so he's gained 5lbs in 10 months which is a good weight gain I think. He's got a lot of symptoms though... chronic constipation and now alternating constipatin and diarrhea, TONS of gas, bloated little belly, irritable, very poor appetite, tires very easily and sleeps a lot, plus constant rash/eczema issues. I am taking him to the Drs on Friday to push for a test but I recall in the past that my ped didn't think he could have celiac because he was maintaining his growth curve and not ftt (this was something he brought up on his own when brainstorming through the constipation problems we were having at about 9 months and that statement was what lead me to start looking into celiac as I had never considered it prior).

My daughter was diagnosed with celiac Disease and was not even close to FtT! At her lowest weight she was still in the 56% fo her age and height! Her chart did drop from 98th percentile to the 56th but that drop happened after she had the blood test done... she was still in the 90 something percentile when her blood results came back! So tell your ped that my daughter was maintaining her growth curve when she was diagnosed... it was the month after that she began to drop while we waiting for the biopsy date!

AMSL Newbie
AMSL
Posted
I am just wondering if all kids who are diagnosed as celiac are failure to thrive. My son is small but definitely not ftt. He's gaining weight and staying on his growth curve at around the 10th percentile. He's gone from almost 19lbs at a year to about 24lbs at 22 months... so he's gained 5lbs in 10 months which is a good weight gain I think. He's got a lot of symptoms though... chronic constipation and now alternating constipatin and diarrhea, TONS of gas, bloated little belly, irritable, very poor appetite, tires very easily and sleeps a lot, plus constant rash/eczema issues. I am taking him to the Drs on Friday to push for a test but I recall in the past that my ped didn't think he could have celiac because he was maintaining his growth curve and not ftt (this was something he brought up on his own when brainstorming through the constipation problems we were having at about 9 months and that statement was what lead me to start looking into celiac as I had never considered it prior).

My five year old had no symptoms other than constipation and irritability. We found it by having a doctor that felt we should rule it out. The constipation is better but she is still irritable (which I now attribute to being five). I would definetly push for the test especially if you have any family history. Good Luck

kittyme Newbie
kittyme
Posted

Listen, I had 4 Peds tell me nothing was wrong with my daughter. The 5th one I went to I TOLD them I wanted her tested for allergies, cancer, colitis, croms(sp), Celiac and IBS. They told me it wasn't necessary. I told them it wasn't their choice. I was paying the bills and I didn't ask any way I was telling! Guess what? They did the testing. They wern't happy about it. When the test came back positive for Celiac and so did the biopsy later I stopped going to Peds altogether and started going to, younger family Doc. For some reason the younger Docs. seem to know more about celiac disease and are willing to listen to you and realize that you aren't stupid and that you prob. know your child better then them!

Juliet Newbie
Juliet
Posted

After our whole ordeal with our son, we switched from our older, more experienced pediatrician who continually ignored our concerns to a younger pediatrician, too. He actually doesn't know as much about Celiac Disease as even I do, but he works with me, explains exactly what he's doing and why, and if he doesn't know for sure he admits it. He works with me and listens, unlike our old one. Maybe it's because they're still learning, too, that makes them more open and willing to believe that you actually know your own child!

Nantzie Collaborator
Nantzie
Posted
Listen, I had 4 Peds tell me nothing was wrong with my daughter. The 5th one I went to I TOLD them I wanted her tested for allergies, cancer, colitis, croms(sp), Celiac and IBS. They told me it wasn't necessary. I told them it wasn't their choice. I was paying the bills and I didn't ask any way I was telling! Guess what? They did the testing. They wern't happy about it. When the test came back positive for Celiac and so did the biopsy later I stopped going to Peds altogether and started going to, younger family Doc. For some reason the younger Docs. seem to know more about celiac disease and are willing to listen to you and realize that you aren't stupid and that you prob. know your child better then them!

You rock Kitty!

Good for you for taking things into your own hands. With doctors, their attitude is everything. Some doctors seem to be more aware that they don't, and can't, know everything.

Nancy

Electra Enthusiast
Electra
Posted
I am just wondering if all kids who are diagnosed as celiac are failure to thrive. My son is small but definitely not ftt. He's gaining weight and staying on his growth curve at around the 10th percentile. He's gone from almost 19lbs at a year to about 24lbs at 22 months... so he's gained 5lbs in 10 months which is a good weight gain I think. He's got a lot of symptoms though... chronic constipation and now alternating constipatin and diarrhea, TONS of gas, bloated little belly, irritable, very poor appetite, tires very easily and sleeps a lot, plus constant rash/eczema issues. I am taking him to the Drs on Friday to push for a test but I recall in the past that my ped didn't think he could have celiac because he was maintaining his growth curve and not ftt (this was something he brought up on his own when brainstorming through the constipation problems we were having at about 9 months and that statement was what lead me to start looking into celiac as I had never considered it prior).

Many doctors are misinformed about FTT even those treating adults. When I first told my primary care doctor I wanted to be tested for Celiac, he said sure, but he never thought that was a possibility because he was told that you had to have chronic diarrheal and be losing tons of weight from malnutrition. Through my research I've found that there are a lot of celiacs who are overweight despite being malnourished. In any case I'm always going to tell you to get tested just to be sure. Good Luck!!

prinsessa Contributor
prinsessa
Posted

Neither of my kids were FTT. My son has always been very low (and fell off once or twice) on the charts. My DD was always in the middle of the charts, but about a year before going gluten free she started gaining a lot of weight. After going gluten free, my son gained weight and my DD lost some. And I didn't even think my DD was gluten free. I just decided to test her (through Enterolab) because I am gluten intolerant and I thought DS was. DD had diarrhea once in a while and that has gone away since going gluten free. If you really like your doctor, just talk to them about your concerns. I talked to DS's doctor about it and she agreed that it would be ok for him to go gluten free even though the blood tests were negative. I know I didn't need her permission, but it is good to have her support.

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