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ashleybrynne32
member
Celiac Disease/ Gluten Free Diet
ashleybrynne32
member
This is my first time posting on this board, and please forgive me if this isn't the proper place to seek help, but I couldn't think of any other boards that would be appropriate.
DD has been diagnosed Failure To Thrive and DH & I are trying to avoid an endoscopy if at all possible. We've consulted GI specialists at Children's Hospital of Philadelphia and Dupont Children's Hospital and have gotten conflicting opinions. I consulted a third doctor, who believes in a more homeopathic approach, and I think we're going to give his advice a shot. He suggests we give DD a completely dairy/ nut/ soy/ gluten free diet for a month in addition to probiotics and other vitamins to see if that helps her gain weight. I'll also have to eliminate these items from my diet since I'm still breastfeeding.
Is anyone else dealing with possible Celiac Disease/ GI issues? Any advice on how to eliminate these foods with an already extremely picky eater?
TIA
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Re: Celiac Disease/ Gluten Free Diet
If you're already diagnosed as FTT and your doctors have not given you a celiac's diagnosis yet- I wouldn't personally cut all of those foods from her (and your) diet. I'm not sure why a doctor would suggest to a parent of a FTT child to cut some major calorie sources from her diet...My son has severe food allergies and can not eat wheat, dairy or eggs among other things. Cutting those food groups cuts a huge source of calories for a growing toddler. My son is not on the growth charts and it's a constant struggle to get enough calories into him.
If you do procede with the diet restrictions- I'd get to a dietician/nutritionist quickly for an appointment. (your GI's office probably has one) Ours has given us a lot of suggestions to boost his caloric intake. There are some yogurts and kefir that are coconut milk based. You could order Ellecare/Neocate formula and add it to a bottle or oat cereal to boost the calories there.
Again though- I'd really push for a diagnosis before changing her diet so drastically. What are they hoping to discover with an endoscopy? Why are you and your DH opposed to having one if it may diagnose the underlying issue? (not being snarky- just curious) Finding enough calorie and nutrient dense sources with those restrictions is a huge challenge for us.
Is the lacking weight gain the only symptom your child has of celiac?
FWIW, I know a LOT of people who have celiac, one who as a toddler gets the rash, and a whole family who lose a ton of weight and feel awful.
There is a blood test to check for the antibodies created when someone has celiac. You can do this step prior to an edoscopy if that's the only thing your checking for. If it comes back positive you can do an allergen removal test and if it improves the symptoms and your LO gains weight then you can have a diagnosis without an endoscopy.
However, there are false negatives. FTT can be a whole slew of things, my DS was on hypoallergenic formula and diagnosed as FTT, turns out he can't handle something in them and is growing well on regular formula now. The other issue is to find out if FTT is caused by GI or eating issues. You mention she's an extremely picky eater (I know most kids are naturally picky eaters) but is it possible it's something to do with the food physically? Maybe have an evaluation by a speech therapist who specializes in feeding issues?
Eli's FTT/formula issues are because of his severe reflux. Is it possible your LO has silent reflux and is not eating well because of this?
There are so many possiblities and I hope you're able to find something to help your LO.
We are going through this right now. Trying to find out if my youngest has Celiac.
He was first sent to the GI doctor for low weight/not gaining height. He is not following his own curve & is way below the chart. He was always a great eater though. So this was a concern as it appears he was not getting any nutrition. He is on a supplement (kids boost essential 1.5) instead of whole milk that has helped so much, but they are still leaning towards Celiac. He no longer eats though. But has started to gain both weight & height.
My son had a Celiac Genetic profile done & is only positive for 1 of the 2 Celiac markers but has a few symptoms (but they could be anything too): Short stature, not gaining weight, low iron.
Since it only came back with 1 marker she suggested the biopsy (this is after 2 months of testing, we did not just jump on this procedure). We are going ahead with it since I want a clear answer on what is wrong with my child & not guess with this. I would not choose for a toddler boy to live a gluten free diet unless he wanted to do so by choice. Also I have two older boys that can eat whatever they want (so I want to be sure) & most importantly I cannot play a guessing game with his health - that is not fair to him.
Anyway his doctor recommends that he eat normally until we have a diagnosis otherwise they will not be able to see any allergies. His procedure is this Thursday
But, maybe I am also a little more relaxed since my oldest was born with a birth defect & has undergone more serious surgeries. So this seems like something small in comparison. Also he will never remember, the procedure itself is about 5-10 mins.
Why are you so against the biopsy? Have you done any bloodwork?
We had the celiac blood panel done back in August- she came back negative, but the GI specialist said the test wasn't accurate because her IGA was too low to get a reliable response.
We're trying to avoid the endoscopy b/c of our fear over anesthesia & sedation. Unfortunately, they have said it's the only way to determine if she has CD.
We've tried Neosure, CIB, are currently trying Duocal and have given her other powders to increase calories (she wont take anything!)
We've been seeing a nutritionist from CHOP since August and every effort to increase calories has failed. The nutritionist has told us it's time to take "a more drastic" step to see what the problem is.
She had reflux as an infant and was put back on Prevacid in case it is silent reflux.
Sorry for the itemized list, I'm not trying to be snarky, just respond to all the questions.
The major concern (in addition to not gaining weight) is her failure to eat. More then 1/2 the time she refuses to eat, and when she does it's such small doses. Recently she's been vomiting undigested food (from 24-30 hours prior) and the "list" of foods she eats has been cut in half.
Hi there!
I understand how frustrating it is to have a little one that won't eat or is a picky eater. I have twin boys. My little one was always in the 5th percentile. He followed his growth curve so he was never FTT but, it was always a concern.
This past August we started the GFCF diet (just recently cut soy). He's eating habits are such much better. Before we used to pack high calories meals, now he eats healthier and gaining weigh. I do feel that his little belly feels better and he's able to process the food easier making him want to eat more.
We do lots of meats, veggies and fruits. Is really like going back to the old days and feeding them less process food.
I'm sure your nutritionist can guide you on where to starts. We did it cold turkey (I didn't know any better) but from what I've read is best to start with one item at a time.
GL!! there are many GFCFSF blogs out there than can help.
here's one:
https://gfcfblog.blogspot.com/
I have Celiac (actually Dermatitis Herpetiformis - maybe spelled wrong)...the difference between the two is mine (DH) comes with a horribly itchy rash. The easiest way to be GF (I do not adhere to this diet 100%) is to eat meat, fruits, veggies IMO. There are many GF and GF/CF items on the market like bread and other such items. If it is truly Celiac, a biopsy of the small intestine has to be done. That is the only conclusive way since other testing is not 100% accurate. They look for damage to the villi. If gluten is an issue, it could also be a sensitivity to it vs an intolerance to it. You would need to be GF for a solid 2-4 week minimum before before any changes would even be noted (body needs time to get rid of the gluten in the system). And if you do the biopsy, you have to be eating regular which means you need to be eating gluten. I would assume that if there is a high intolerance there would be more issues then just lack of weight gain.
Are you sure your 3rd opinion doc isn't trying to just sell you stuff? Doing dairy/nut/soy/gluten free PLUS probiotics and vitamins seems like a lot of change all at once and if your LO isn't eating a lot now, do you really think they'll take to this much change? I'm not trying to be snarky even though it may sound that way. I'm genuinely curious. Plus, not only would it be a big change for your LO but it would be a big diet change for you too I am assuming. A GF diet is totally doable, but you need to be prepared to read all food labels especially for hidden gluten, for the increased grocery bill and the different texture that comes with GF food.
What exactly are the conflicting opinions? How old is your child? Has there been any allergy testing already completed? FWIW, my child has been sedated for a MRI and he came out like a champ. No issues at all whatsoever.
The conflicting opinions are (1) The CHOP specialist said it's likely something physically wrong with her, whether that's CD, a hernia, an allergy, severe silent reflux, etc & (2) The Dupont specialist believes it's totally behavioral. We consulted the homeopathic MD b/c we're trying to get as many opinions before doing the endoscopy. Initially we were concerned about the sedation & were under the impression that an endoscopy involved an exposure to radiation, but we have since learned that isn't the case. (DD has been exposed twice already for other issues and we would like to avoid that of course).
As far as the 3rd dr trying to "sell us" stuff...I didn't get that impression, he's a friend's father.
You don't come off snarky at all... going dairy/ nut/ soy/ gluten free plus pribiotics is a HUGEEEEE change, and I'm just as skeptical. Unfortunately, at this point it's been about six months of tears at almost every mealtime and doctor's appointment. I just don't know what to do to get her to gain weight & eat.
DD is 14 months & her weight has plummeted starting at 6 months when we introduced cereal/ solids. (She's dropped about 20% on the charts so that she's now below the BF babies chart)
Also, she had an allergy test last week- everything came back negative. As awful as it sounds, I almost wish she was allergic to something & we could just eliminate it from her diet so we could have an answer & move forward.
My son has been through many of the same things. He also has had reflux since birth. He is still on reflux meds. He started having progressively more severe issues when we started to introduce solid foods. He lost weight and did not gain. He had diarrhea, vomiting, and started refusing to eat. Our GI did a ton of blood work and ruled out Crohn's, multiple food allergies, infection, CF, CD, and a ton of other things. His b/w was negative for CD, however, like your LO it could have been a false negative. We took him off all solids and switched him to Neocate exclusively (at 14 months). He instantly gained weight. We finally started to re-introduce foods to determine what is triggers were. We have determined he can't digest dairy, soy or wheat. He temporarily has a dx of Multiple Food Protein Intolerance. They are referring him to a new allergist to look at a F-Pies (Food Protein Induced Entercolitis Syndrome).
He had another flair up this past October. We finally agreed to a Endoscopy to rule out further irritation, allergies, or CD.
We knew that the CD would be negative. He has been gluten-free since January. If you remove gluten from yours and her diet, you may never get a proper diagnosis.
My DS also has eating issues. We have concluded that DS has so many fears that food will hurt him that he stopped eating. He has been in OT for several months and has made a ton of improvements as far as eating. GL! I know that being near CHOP would be a huge comfort for me.
2 of my daughters and I have celiac disease. I have some info in my bio.
I would strongly encourage you to have the testing done before going gluten-free. It is a pain in the ass lifestyle to live and it helps to have an official diagnosis. It is easy for me to say that though since we had definitive blood work positives and didn't need the scope.
Let me know if I can answer any questions for you! We've been gluten-free for over 3 years now.
ETA: my oldest daughter was also the world's pickiest eater and she was afraid of food. It was amazing how much braver she got about food once she was healing though. She still has some food phobias (won't eat things that are too mixed up like casseroles, will not eat any form of pasta) but the list of things she enjoys eating is much longer than the foods she won't touch. I think I cried with joy the day she announced that falafel was one of her favorite foods.