This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc. Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful?The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients)Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients)Gluten-Free Alcoholic BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity
I can understand your fears. If DD was not my last child I would be scared to give my kids gluten, too. With all that she went through I don't know if it would be worth it. I like the idea of waiting until he can communicate to you how he is feeling. If you start now you may end up playing a guessing game to try to figure out if there are symptoms.
One thing I would ask is did you breastfeed? Were you eating gluten? My DD's issues started with just the little bit of gluten she got through breastmilk and then the cross contamination in the Gerber Rice Cereal. So, unless he has been strictly formula fed or you were eating a gluten free diet, then your son has already been consuming gluten through breastmilk. The gluten in breastmilk was enough to cause problems with my DD. Although, we didn't figure that out until much later when she was older and eating gluten products herself.
My LO is 18 months old. She also had similar symptoms to your LO, including the huge drop in weight %ages. I would not discount gluten even if the test comes back negative. We know that gluten is my daughter's issue and her bloodwork is negative. She is a totally different baby without gluten. She also reacts pretty violently now when she does get exposed to gluten.
She loves to eat gluten free chicken nuggets (from Wegman's), hot dogs, Annie's Mac & Cheese, fruity pebbles, honey nut chex, those pureed fruit pouches, yogurt, toast (from gluten-free bread), lunchmeat, cheese. She tends to be a picky eater, but there are several foods we know that she will eat. At 20lbs we give her whatever we think she will eat. It took some time for us to know what we could feed her, but now it comes pretty easily. I keep a lunch bag of food with me where ever we go just in case.
Let us know how everything turns out!
My LO started with issues just from the gluten that was passing through breastmilk. The info your ped gave you is not correct. Her weight gain issues started before the introduction of solids. Her initial reaction to rice cereal (due to cross contamination) was open sores on her bottom. We did not pinpoint gluten until she was 10 months old and had dropped from the 50th% in weight to the 5th%. She had all sorts of funky bms and had very little energy which was causing developmental delay. My husband also has type 1 diabetes which puts her at risk for celiac's.
So, when she went to GI the first thing we were told to do was to put her back on gluten and take her off of dairy and soy. Is your daughter getting dairy and soy? This is typically what would cause the symptoms that you are describing. It is much more likely to be dairy and soy protein intolerence than it is to be gluten. It would also be very hard to tell because unless you are not consuming dairy or soy products or if you are not gluten free then your daughter has been getting all of these foods all along through your breastmilk.
If I were in your shoes I would get rid of dairy and soy products at this point. This intolerence is not able to be tested for and it is very common in infants. You need to get rid of trace amounts as well (look at all processed foods).
That isn't to say that gluten isn't an issue. It just makes sense to try to cut out the most common offenders in babies first and then go to the less common ones (like gluten).
If it is a true allergy you can do the skin testing. Most of the time in young children it is a protein intolerance. This is known as Milk/Soy Protein Intolerance (MSPI). There is no test for this. Also, if there is an issue with gluten and the intestine is currently in the healing phase there is a good chance that your LO will not tolerate dairy.
My 18 month old drinks Almond Milk. It actually has more calcium than Cow's Milk. I give her the Vanilla flavored because she needs the calories (she is only 20.8lbs). I have never had a daycare question giving my child the milk that I provide. Not sure if you want to do that, but it is a great alternative to Cow's Milk.
My middle son struggled with constipation and a daily probiotic did the trick for him. He also did not sleep well when he was constipated, but he did not have night terrors.
My daughter (who has gluten intolerance) was failure to thrive from her issues with gluten. It doesn't sound far fetched that your daughter might have it. It might be good to get her tested before initiating a gluten free diet.
My 18 month old was failure to thrive from her gluten issues, so I have also tried hard to give her a high fat diet. So (please do not judge, it has been a painful road watching my baby waste away) she eats french fries, potato chips, gluten free chicken nuggets, hot dogs, bacon, anything I can put peanute butter on, gluten free pizza (either homemade or from a restaurant), Amy's Mac 'n Cheese (you can add shredded cheese to it), bologna and cheese rolled together, yogurt (I use the gerber graduates ones because they don't have to be refridgerated and they are higher in calories than the others. She would rather eat all fruits and the fruit and veggie pureed pouches, unfortunately this doesn't do much for her weight.
I am hoping that her weight gain comes around soon. She is up to the 6th%, so I guess that is better than the constant dropping.
I just commented on your other post. Pediasure is dairy, so that may be making her issue worse at this point.
I will just share my daughter's symptoms of Celiac's, but I know that it isn't the same for everyone.
She was dropping off the charts for weight despite eating a TON of food. She had no energy and was having developmental delays because of it. She was having 4-6 loose, mucousy, pale bms/day. She would scream out for no reason. She was extremely irritable and by 9 months old would throw temper tanrums over anything and everything. She had dark circles under her eyes, her skin and hair looked flat and dull. She had delayed teething. All of this was gone within 4 days of going gluten free.
I think that you should talk to your ped about seeing someone for feeding issues. Has she always not eaten much or is this new? Is she acting ill? Is she having a lot of bowel movements or frequent urination? If she is not eating much during the day it wouldn't be surprising that she is waking up acting like she is starving. I would really work on her feeding before trying anything else. It sounds like she might just be too busy during the day to eat and then she is hungry at night. Also, with her being gassy...it is much more common for toddlers to have issues with the protein in milk than with lactose. I would do what PP said and try soy or almond milk. You can also try cutting out all dairy. Some kids have a lot of GI trouble from dairy.
An issue with dairy is far more common in toddlers than Celiac's. I would probably try cutting out all dairy (even trace amounts) first. If you aren't seeing changes within 2 weeks I would then pursue testing for Celiac's.
Her reflux/constipation issues sound similar to my son's. I ended up putting him on a probiotic every day and that cured him of his constipation. He was bouncing back and forth between constipation and diarrhea when on Miralax, also. When he was constipated he would not sleep well and was miserable all around. As far as we know he does not have issues with gluten (his sister does). I started him on the probiotic 1 1/2 years ago and he hasn't had issues with constipation since.
That isn't to say that your daughter doesn't have issues with gluten, it may be worth exploring further.
My daughter's issues with gluten were trouble gaining weight and frequent loose bms.
If you have a pretty good pediatrician, you may even be able to convince them to do the bloodwork for Celiac's Disease. They may be sensitive to gluten without having Celiac's, but if they did have it you would definately have an answer. Regardless it sounds like it may be worth going gluten free even if they tested negative.
My daughter's biggest issues were failure to thrive, but behaviorally she is a nightmare when she has consumed gluten. By 9 months old she was throwing herself on the ground if the tiniest thing ticked her off. Now, at 18 months I can tolerate being around her (in other words, she doesn't scream at me constantly).
My 17 month old is also very picky. She does like yogurt, gluten free mac and cheese, french fries, hot dogs, fruity pebbles and cocoa pebbles cereal and bars, fruit (all kinds), gluten-free pancakes (I use the Gluten Free Dreams mix), gluten-free chicken nuggets (Wegman's grocery store has their own brand) and lunch meat. I am hoping that her pickiness gets better soon. She used to love cheese, but won't eat it anymore, either. So, mealtimes are a fun guessing game. She was failure to thrive from her gluten intolerance, so I am still working at increasing her weight, also. It has been challenging.
I would strongly encourage you to try for an official diagnosis first. Schools do not (and will not, usually) make accomodations without a letter from the dr stating specific dietary needs. My daughter's bloodwork was negative and I know that we will have to revisit this issue later. But, I took her off gluten and then unsuccessfully attempted to do a 2 month gluten challenge. It was so hard to watch her suffering that I don't think I gave her enough gluten.
Glad to read your update. I think that you did the best thing. Any damage is bad and hopefully she will be better once gluten free. My 17 month old also looked like her belly was so distended by the end of the day when she was on gluten. Hopefully your little one will get healthy soon!