newmom07

We couldn't be 100% sure going gluten-free would change my DS's life when we started last spring. Within days he could be put down, within weeks he was running around again. Seeing his turn-around, I would give it a try. If you want a positive diagnosis, you'll need to keep or return to the gluten. For us, getting him growing again was more important to us. He also failed the allergy prick tests and the allergy dr said he isn't allergic, but his life experience (going from 10% to 50% on the weight charts in 4 months and not up all night screaming with abdominal pain) proves otherwise. We also appreciated having the test from enterolab to have some independent support. Good luck to you as you find what is best for you.

We are just realizing DS doesn't do well with corn. Crabby and uncomfortable with soft yellow stool for days. This includes corn & corn tortilla meals, but not corn tortilla chips or gluten-free cornbread. Still, I think we'll cut all corn. Thankfully he doesn't get the gas, bloating and all-night screaming from gluten!

DS went gluten-free in February at age 20 mos. He is now almost 2 1/2. This summer his feet were smaller than his brother's at the same age. No biggie, by the end of the summer he had grown into that size. We went shoe shopping yesterday - he is now the same size his 4 year old brother was just this past spring! His feet have gone from a size 6 to a 10 in 8 months!

Yippee!!! Bring on the growth spurt!! I am so excited! He has gained weight and muscle tone and lost that terrible distended belly, but this is our first major growth spurt and I feel like I am walking on air!

I am so grateful to have found out that celiac might be the root cause of our troubles and to have gone gluten-free. I can't imagine where we would be if we hadn't taken the leap and had stayed eating gluten. My poor son. He ate gluten for a full year before we knew (he could barely walk in those last weeks), and now here we are and he is turning it all around and growing - and running and jumping and riding a balance bike!!

I am writing this because this community has been so helpful to us and I often see posts like mine from last February wondering if my child could have celiac. All I want to say to those moms is, maybe, but gluten-free is worth trying -- for us, the real proof was in his change (within days he was walking, within weeks he was running) and having a growing child feels so so good!

Brianna,

Welcome! Although I know here is the last place you want to be, this is a great community full of answers. My son, age 2, went gluten-free this spring and also couldn't seem to live without milk. He didn't tolerate it well, but he wanted it so badly. So, we tried lactaid since it seems that some folks have trouble with the lactose and some the casein and we didn't know what was giving him the trouble. Lactaid worked like a charm for 5 months or so and then he was able to tolerate regular milk again. We also found Kefir, which is like a smoothie, was a delicious alternative option for our son. Finally, there is a diet called Paleo - and a great book Everyday Paleo - that is gluten-free and Dairy Free and delicious. I agree with the others, back your stash with processed gluten-free foods if you need (with a toddler, this is a need for us, and I remember college being similarly crazy) and fresh fruits/veggies. Many lunchmeats are gluten-free (Hillshire Farms comes to mind) too. My DS never had trouble with cheese, for others cheese is not a good option. I know how overwhelming this all seems, but it was amazing to watch the transformation of our son, and I hope for you that you will also find that you've never felt so good.

-Betsy

Welcome, Rachel. Celiac is scary, but so are the symptoms you are living with. We discovered my son's condition 6 months ago and honestly, we have no trouble with 99% of our life. Our home is gluten-free, which makes things easier. We don't eat out much, and we carry snacks/gluten-free treats so we can participate in other activities. There are so many good gluten-free products, my kids still have pancakes and waffles and pasta, but in general we eat a more meat-fruit-veggie diet. Does it impact us, sure, but have we already found good work-arounds? Yep! And this board is a great place to start with the support and information you need.

DS was glutened last night by Hershey Kisses. I had read on a list of safe Halloween candies from a blog and thought they were safe. Not so. He screamed for 4 hrs last night. It reminded me of the days before we took him off gluten. It was the worst response he has had since we started this 6 months ago. He has been cross-contaminated before and has a milder reaction (screaming for less than 2 hrs, so still not mild to me), but this was like I had fed him french toast (which I used to do before we knew and I was trying to get him to gain weight). It was terrible. DH and I are just so upset, we worry about the impact on his health. I am praying he doesn't start his typical 3 day hunger strike. My lesson is to always search here (the deal with Hershey's is apparently well known) and to double and triple check. Still, the guilt is so hard. My poor little boy.

My poor little 2 yr old had the worst reaction since we discovered his condition 6 months ago from Hershey chocolate last night. He has had the fun size bar before with no reaction and ate 1, but he had 5 hershey kisses and wow. He was up for FOUR HOURS screaming in pain last night and is refusing anything to eat this morning (likely the beginning of his typical 3 day hunger-strike). I had read on a site that Hershey fun size and kisses were gluten-free, and there were no ingredients that appeared to be hiding anything, but he is very sensative and I'm betting on cross-contamination. Sigh. Just wanted to help spare someone else the misery.

My DS (age 2) gets a pink tint around his eyes when exposed to gluten. It went away being gluten-free, but when I see it, it is often my first clue that something got him. Sometimes it is followed by other symptoms, sometimes it clears up without more obvious impacts.

I just needed to thank this community for its wisdom and support.

In February, my 20 mo old son was going down-hill fast. He couldn't keep weight on and was constantly sick. His belly was crazy distended and his arms/legs were withering. He was looking gaunt. My 10 lb baby was just 23 lbs and had shrunk to 10-25% for weight and 25% for height. A friend mentioned celiac and it was from seeing a picture on this site of a little boy who looked just like him that turned our family around.

Since February he has been gluten-free and now just 4 months later he is amazing! The clingy, whiney child has been replaced with a vibrant, energetic kid. He is 28lbs and is back to 50% for weight and 50-75% for height! Although he is likely "only" intolerant (blood tests negative), he got his Enterolab dx (under 10 is normal, he was a 12) in April, and we are convinced this is a healthy path for him.

We never would have made this journey without this forum and we have received so much support and information, I just needed to thank you from the bottom of my little wonderful boy's newly growing again body '-)

I can only share our story and hope it helps. Like you, our child is about 2. We realized he might have gluten intolerance in Feb at age 20 mos. He weighed 23 lbs. His belly was totally distended and had the classic skinny arms/legs. He was clingy, and had been sick for 6 weeks seemingly constantly. We went gluten-free and he gained 2.5lbs in 6 weeks (10% of his body weight!) and his personality and energy returned. He blood tested negative, but we saw the proof in his turn-around which begun immediately and was a stark difference in 2 weeks. We put him on whole milk lactaid and that helped a ton - no more massive gas attacks. He began sleeping like never before. Still, he is skinny (although I love that I can no longer meet my fingers around his thigh) and the belly is not hard but is still oversized. We may eliminate dairy and corn, but we are so pleased with the gluten-free changes. We are new, but PM me anytime.

My DS is nearly 2 and has been gluten-free for 2 mos, with major improvements and many thanks to this group! We are going on our first road trip, and I'd love some tips for a full day living out of the car/ what road-trip restaurants might be safe for us. We have gluten-free snacks, but aside from pulling over for pb + apple, I'm just not sure how to keep my boy happy and full. Thanks for any tips!

I could have written your post 2 mos ago. We has DS blood tested after being gluten-free 1 week. Negative. I hemmed and hawed about restricting him to gluten-free without "proof" but after support from here, and a push from DH, we stayed gluten-free. We also ordered the enterolab, but the results aren't in yet. But here's what I know - he no longer has pink under his eye, foul loose stools and goes on hunger strikes. But all those instantly appeared when he was cross-contaminated. He also spent a day in pain and needing cuddles, but then he returned to his new normal self - happy, energetic! He gained nearly 3 lbs in 2 mos - more than 10% gain! To me, you know wheat is poison for him. When he is a teen he can make his own choice, but no way will we gluten-challenge until he wants to and is old enough to understand his symptoms and communicate clearly.

Sounds exactly like my son, who is 21 mos and seriously is it strange how similar our posts are except for the poop color (we go orange-yellow). We took him gluten-free 3 weeks ago and then switched him to lactaid. He is a different child - and he has gained 1.5 lbs in 3 weeks. He hasn't been sick since - even though his brother was - he is so happy. His blood tests are negative, we're puzzled but so relieved for the quick turn around.

We thought my 21 mo old son might have a wheat or gluten issue, but his labs came back in negative. He has the classic look of very thin arms/legs and a large distended belly. It is like a miracle since we put him gluten-free -- he was sick at least every other week for months and months and for 6 weeks straight, now he has been healthy for 3 weeks. He had lost a lot of weight and is now packing it back on. He acts like himself again and I can no longer wrap my fingers completely around his thigh. We switched him to Lactaid after a week of gluten-free and that seemed to clear up the remaining issues (we even did a 1 day test back on regular milk and could immediately tell a difference). But the celiac tests were negative. We don't know what to make of it. Our pediatrician thinks he is now healthy (no flu, stomach bug, etc) and that's the change, but we aren't so convinced. Should we do an eteralab (sp?) test? Do those virtually all come back positive? Do we check with an allergist for other allergies (but he has no skin issues)? My DH is convinced gluten-free is best for him and could care less what the medical community thinks. I don't mind keeping our home gluten-free, but I would love not to have to freak out if he has a cupcake at a friend's birthday party or to be able to go out to eat without worrying about cross- contamination. Our Dr. would like us to put him back on gluten this summer (after the flu season has passed) to give him a gluten-challenge. DH would want to wait a few years until he can really communicate with us how he feels. I don't know how quickly we'd be able to see the gluten-free impact - would it be obvious like the milk? His poop is more solid now, but he never had the serious runs, so I don't know that watching his poop could teach us much. Sigh, we just don't know what to do. This is causing some marital discord, so we'd love some advice.

Thank you all so very much. Your responses were so thorough and helpful in our meeting with the Dr. today. I actually printed the thread and brought it with me. Our Dr. is ordering the celiac panel described above, a common allergen panel and a stool sample to check for malabsorption. Of course, our poor little guy's veins weren't cooperating today so we have to go back TH for another appointment and otherwise will have to go to the hospital's lab department if the nurses at the office can't get him.

While we were there, we found that he had swollen lymph nodes and a red throat, so we tested and sure enough he has strep (and he has been feeling *better* for 3 days now!) and so I brought his brother back and he does too, so antibiotics have begun. The best news was that they measured him at having grown 1 1/2 inches in the past 2 mos, so my complete freak out at his lack of growing is much relieved. I don't think the measurements are all that accurate, so I am going to start my own here at home. He has lost a little weight in the past 2 mos, but given the number of illnesses he has had, I am not surprised. I still think, given his distended abdomen and shrinking body, something isn't right, but I am relieved that we have started the process to find out what is happening.

I posted in the testing forum, but DH thinks this might be a good path for us: Open Original Shared Link Has anyone done the stool testing through this lab?

Thanks, again, for all your help - it really made a world of difference today!

Hi,

We think our 20 mo old son may have a wheat allergy. Our Dr. is less interested, but is ordering the celiac panel recommended here, a panel of common allergies and having his stool evaluated for malabsorption. My DH found this lab which tests using a stool sample, but seemed to be respected among the celiac community. Open Original Shared Link Anyone have any experience with this option? Is blood test to biopsy really the path, or could we opt for this less invasive diagnosis?

Thanks for any expertise you can share - getting up to speed is hard, but we're working at it!

-Betsy

Hi,

My DS2 is 20 mos and we believe he may have celiac or an intolerance to wheat or something in that genre (sorry I'm still learning the distinctions). Here is a little about us, but if you have *any* feedback - things to ask the dr., things we should be doing, things we shouldn't do etc, I could really use some guidance from people who have BTDT. I am feeling very overwhelmed, and just want my healthy boy back - he is really sick.

DS2 was a healthy 10lb at birth and slowly slimmed down to about 50-75% for weight and 90% for height. After he began eating (around 8-9 mos) and moving more, he slimmed down more but stayed on the tall side. Since the flu season struck in October he has been sick at least 1 week every month and he has been sick 4 of the last 7 weeks (stomach bugs, cold/cough/fever etc). He looks sick and malnourished. He has no muscle tone left in his very skinny legs/buttocks/arms and has a large distended belly. He is generally a happy child, but he has been increasingly sad and cuddly and some days won't let his feet touch the ground. He is now waking up at night, uncomfortable, gassy, in pain. His poop often has undigested food and is usually wet/strange colors but isn't particularly fluidy. I was worried since he has been so sick and looks so unwell and I called the doctor and he has not gained any weight or height since he was 18 mos - bringing him now to 10-25% weight and 10% height. A friend mentioned celiac (she is a genetic counselor) and we have been reading everything we can. Then, on this forum, someone had posted a picture of her very ill little boy upon entry to the hospital --- it was like looking at our son. I've never seen another child who looks like him, and there he was, and well, let's just say we are convinced that this is more than just being exhausted from being so sick. Auto-immune diseases and severe food allergies are present in our family (my siblings/parents/their kids).

I will call our ped tomorrow and hope to get in early this week, but I don't really know where to begin - do we want testing? do we care about the biopsy? why do we need a diagnosis if we go gluten-free and it works? what else should we be ruling out/considering (it seems from what i've read that cancer is another possibility for our symptoms)? what else might we need to know about? should we just go gluten-free or do we need to go dairy free too? do we need an allergist and a GI specialist? what smart-mom things do i need to know (my SIL had good suggestions about keeping food on hand, frozen cupcakes to bring to birthday parties etc)? seriously, any advice you have, thank you, thank you for sharing with me.

-Betsy