[p1gg1e]

I could use some other mama's to bounce ideas and symtoms off of.

My Youngest has issues with gluten. I say she has celiacs due to our elimination diet that we did when she was around 10 weeks. She is now 22 months (ish)

her symtoms include:
Painful urination
unconsolable crying
weight loss
FTT
low enamel on teeth

She is still breastfed so I'm GF as well. We had a set back with my IL's watching her and me not being super anal about ingredents. I feel overwhelmed. I'm finding little about what others have gone through with their infants or toddlers.

 

[memiles]

My daughter is now 5, was diagnosed at 3. I look back at our time breastfeeding and beat myself up, as no one ever suggested gluten as the culprit making her so sick. We eliminated and eliminated, but not until we hooked up with a ND did we get the gluten answer, and by then she had self weaned.

For what it's worth, it's still two steps forward, one back on keeping her healthy. Cross contamination is everywhere, and as hard as I try, she still has reactions. As she gets older she has become better at protecting herself, but I imagine it's going to be like this for a while, and I'm dreading the next few years as she wants to be more social. We just do the best we can, take it one day at a time, and know that we are keeping her as healthy as possible.

 

[fullofhope]

My kids have celiac, as do I. They are 4.5 yrs and 18 months.

Their symptoms are so all-encompassing it's hard to list! So here's a shot, but with a glutening, it could be one symptom or twenty that show up.

diarrhea
constipation
headache
stomach ache
vomiting
hyperactivity
anxiety
obsessive-compulsive about orderliness, routine, food
aggressiveness
decrease in conversation/vocabulary
bed wetting (in 4 yr old)
reversal of potty training (in 18 mo old)
rashes
screaming, crying, moodiness, tantrums for hours
fever
canker sores/cold sores
weight gain (in me)
weight loss (in kids)

I was diagnosed when ds was 7 months, ds was diagnosed at 17 mo, and dd at 4 mo when she got ahold of a cheerio and threw up for several days. We found out ds had it after he was diagnosed with ricketts (from the malabsorbtion) I had trouble getting drs to see a problem with his severely bowed legs and they didn't want to think of celiac because he was such a big baby.

For a long time I felt like we had to live in a bubble. We couldn't go to people's houses, church, school... or trust grandparents or sitters with his diet. Every visit with the grandparents meant a week of sickness after. We made our home gf and made visitors wash hands before playing. We hosted playgroups rather than go to other's homes. Things started to get better when he turned 3- I found a preschool willing to go gf. They had kids wash hands upon arrival, and I supplied gf playdoh, gf pasta, gf whatever. They did cheese and fruit/veg for snacks. The other moms were great about it.

Now we homeschool. I still feel at times like I want to scream- we are back to the "can't go anywhere" with dd, who eats everything off the floor, touches everything, and chews on her fingers.... so we are back to no sunday school, bible study, playgroup at other homes, or any place with food.

BUT I know that it will get better as she gets older. Ds doesn't go anywhere without me yet, but can handle himself so that he minimizes his chances of glutening (hands out of mouth, wash hands often, don't take food from others, don't eat food that has hit the floor or been even touched by anyone else. Celiac isn't why we homeschool, but I am certainly glad not to be braving school with this! But there are ways, I know people do it- in fact I had a student with it, back before I found out I had it.

Karate has been great for ds, as there is no food allowed anyway. He can let down his guard a bit.

I got stickers from nurserysafe.com that are big, green circles that say something like FOOD ALLERGIES. I used to stick one on his back and one on his front (plus give him one to stick anywhere he wanted, with the agreement that he leave the other two put). Worked great. Now I use them on dd's back, since she won't leave one along on her front.

Have you been to celiac.com? They have a board with a forum for parents of babies and kids with celiac. Plus Wheat Free Worry Free and Raising Our Celiac Kids by (I think) Danna Korn are both very good.

Don't know if this tells you anything you are looking for, but there you go! It's an ongoing battle, you just do what you humanly can and forgive yourself the rest.

 

[Multimomma]

You know, my son never had trouble with me eating gluten/wheat while breastfeeding, I ate a regular diet the entire time he was nursing (24 months). But when he was eight months old he had his first exposure to wheat via mouth, and had a severe reaction. First hives and swelling throat, then the intestinal issues. It was the only new thing he had, so it was very obvious to me that it was wheat. The ped has never taken it seriously, but with our new insurance I should be able to see a ped GI in our area who knows about Celiac.

No one ever mentioned that I shouldn't be eating wheat myself, thankfully he never seemed to react to it. He's five, and still doesn't have a dx because he has never had wheat purposefully, and he's only shown slight anemia, and no weight loss. He is smaller than our other children at that age, but still on a good growth curve so no one really cares enough for us to get a referral.

:

We have all the same symptoms fullofhope mentioned, but also, if he has wheat, he wheezes and he has two or three nights of excruciating long bone pains.

 

[crunchy_mama]

We are gf/cf/sf here I suspect Celiac's, his tests show he is intolerant and he carries the Celiac genes. I couldn't get the ped to take me seriously as he wasn't small enough yet- although losing weight on the limited amount of gluten he was eating. He started vomitting in the middle of the night while asleep. Near instant water diarrhea after eating gluten. He had some weight loss as well and muscle wasting in the rear. When he went gf/cf the bedwetting stopped and both him and my little girl had enormous progression with their language. My 4y.o. also had started having symptoms of depression, but that improved as well- not sure if that was improved with the gf/cf or the Feingold diet though.

 

[kjbrown92]

There is a difference between gluten/wheat allergy, gluten/wheat intolerance, and celiac. First of all, the first two can possibly be "outgrown". The third is a life-long disease. All three mean you have to avoid it. But because they can't have gluten now, doesn't mean that they can't have it forever (unless they've been truly diagnosed with celiac). I guess I'm telling you to look on the bright side. It could just be an intolerance or an allergy. Though an allergy is what it sounds like with Multimomma's child (and with hives and swelling throat, it sounds like there should be an epipen there!). And here's to hoping it is something that can be outgrown.

 

[fullofhope]

Whenever I start feeling sorry for myself or my kids, I allow myself to grieve for that "regular childhood" - eating all the normal kid stuff, not being singled out. It isn't easy, and it's full of guilt if your child gets exposed by accident or lax label-reading/shopping cart wiping down, or whatever. You might have to offend a few extended family members by laying down the law, I know I did. They got over it, though, once they finally realized we were not just making this up.

Then I remind myself that it could be worse. Celiac is controllable ENTIRELY by diet. There are so many other things they could have that could be so much worse. Celiac is annoying, inconvenient, and scary when they do get glutened, but it doesn't require heavy medication, repeated surgeries, or ongoing pain. Not to mention that it cuts out almost all processed food and thus my kids eat an incredibly healthy diet!

And in preschool and among ds's friends, what ended up happening was everyone wanted what elliot had. At birthday parties, I'd bring a treat (usually a jello jiggler, ick) and by the 3rd party among our circle of friends, the moms had stopped making birthday cake because everyone wanted the jello anyway! Even in situations where el had simply fruit, the other kids wanted it rather than their goldfish crackers.

I don't know where I'm going with this... just hoping to give a little hope, too.

I find the biggest factor in how other people (my kids and family included) react is my attitude. If I treat it like a fact of life- this is just how things are, look at all the yummy things we CAN eat, then others usually accept it too.

 

[Multimomma]

Quote:

Originally Posted by kjbrown92 There is a difference between gluten/wheat allergy, gluten/wheat intolerance, and celiac. First of all, the first two can possibly be "outgrown".

Definitely. I should have pointed out that Dan has both the allergic reaction, as well as the typical celiac reaction. The allergic reaction has become less as he's gotten older, less swelling and hives, but the celiac symptoms have gotten worse (last longer and are more severe)

Question *I* meant to ask. Someone told me it couldn't be celiac if he reacted to wheat STARCH. That it should just be gluten he reacts to, but he reacts to anything wheaty. Any input (sorry for hijacking)

 

[Chinese Pistache]

Quote:

Originally Posted by Multimomma Definitely. I should have pointed out that Dan has both the allergic reaction, as well as the typical celiac reaction. The allergic reaction has become less as he's gotten older, less swelling and hives, but the celiac symptoms have gotten worse (last longer and are more severe) Question *I* meant to ask. Someone told me it couldn't be celiac if he reacted to wheat STARCH. That it should just be gluten he reacts to, but he reacts to anything wheaty. Any input (sorry for hijacking)

Then my guess is that he's wheat intolerant/allergic and not celiac. Celiac is a problem with gluten only, though you (as you obviously know) can react to different parts of wheat. And the symptoms for both can be very similar (gastro, headaches, weightloss, etc.). So many of these food problems have overlapping symptoms and given that testing is so inaccurate, it's hard to know exactly what you're dealing with most of the time (if a label is important for whatever reason).

 

[Panserbjorne]

None of my kids can tolerate gluten, though only one has an actual diagnosis. I have celiac as does dh as well. Dd was dx at 15 months. She was classic: FTT, no enamel, her hair and nails didn't grow, slick black bowel movements alternating with pasty white bowel movements etc.

I don't buy into the whole celiac label....we just dont' do gluten and are careful. We also use alternative therapies and practices that do help us. I firmly believe we can heal this. In fact we have come a LONG way. I'm excited about the possibilities! For now though, no gluten for kidlets.

 

[whooopsy]

my daughter (now almost 3 yrs.) has also been diagnosed with celiac.

she has been living with a glutenfree-diet for the last year now. her main symptome was a pumpeg-up abdomen. other than that, she didn't grow as fast as she "should".

life without wheat etc. is ok right now, i don't kill myself over this.

i also still nurse her like twice a day.

does anyone know whether there is a suggestion to be on a glutenfree diet as a nursing mother too? i have never thought about this option truly.

 

[tanyalynn]

Quote:

Originally Posted by Multimomma Question *I* meant to ask. Someone told me it couldn't be celiac if he reacted to wheat STARCH. That it should just be gluten he reacts to, but he reacts to anything wheaty. Any input (sorry for hijacking)

I've never seen a wheat starch product that I thought was gluten-free, I'd always assume contamination. I mean--we also avoid dairy, and I wouldn't eat a dairy product that said it had lactose, because I'd assume there was also casein (which is what we need to avoid) unless it specifically said casein-free.

In terms of the general discussion--we are avoiding gluten and dairy because my daughter is clearly gluten intolerant (based on symptoms when we went gfcf, we've never done testing) and because my son and I need to be gfcf for the classic mercury reasons (as far as I can tell, it's just the mercury-opiod theory, we don't have digestive symptoms). I don't know if someday we'll be able to heal enough to eat either gluten or dairy again, we've been gfcf for 1.5yrs now and I think we're at least several years away before we may be at a point where trialling it would be beneficial.

At times it makes me want to cry--a couple months ago, I was at a friend's house with my kids, 2.5y and 4.5y at the time, and we were eating lunch there. I brought our food, of course, but it was sorta pathetic--leftover egg and refried bean burritos from breakfast, not anything fancy. And my friend's kids had hot dogs and frozen French fries (good quality kinds, not scary stuff) and it looked tasty, and my kids didn't say a thing about wanting our friends' food. I didn't even see them staring at it longingly. That's just not normal! They're 2 and 4, but they know that we can't eat other peoples' food most of the time. Near the end my daughter did ask if there were extra apples, and there were and she got one, but overall it made me happy that they weren't upset about just eating boring leftovers, but also really sad.

That said, honestly this has been a really good thing for us. We enjoy food more than we used to, because we think about it and I prepare more interesting food (well, except when I get into a rut) and we talk about foods that make us feel good, and the kids even seem to be learning to listen to what foods their bodies need--which is interesting, because I was 32 when I first started to do that. It's made us more mindful of our bodies and taking care of ourselves and the connection between what we eat and how we feel and how we enjoy life.

Whooopsy--my understanding is that since it can be hard to tell if mom has a leaky gut (sometimes it's obvious, but I don't think it always is), I think it's prudent for mom to be GF as well. It was stressful to be gfcf when I was nursing because although I needed it for my health, I felt extra pressure not to make a mistake because I was worried it would affect my son. So it's not easy, but to me it was very important.

 

[Multimomma]

Quote:

Originally Posted by Chinese Pistache Then my guess is that he's wheat intolerant/allergic and not celiac.

Well, when we did allergen testing for the top eight, he showed very little reaction to wheat.

 

[Chinese Pistache]

Quote:

Originally Posted by Multimomma Well, when we did allergen testing for the top eight, he showed very little reaction to wheat.

The tests aren't always accurate, though. They're just one tool. Observation is the most important. Frankly, with the reactions you mentioned, I'd get an epipen asap. Did an allergist do the test or your reg pediatrician? We've seen two ped allergists and both said observations trump results every tim. Respiratory involvement and hives are the standard reactions with IgE allergies and anaphylaxis. But with IgE or IgG or intolerance, you're likely going to see gastro problems, too.

 

[dannic]

DD and hence our whole family really, has been gf/cf/sf, ect for about 1 1/2 yrs now. I have 5yr old, 4 yr old (who reacts) and 1 1/2 yr old (who's never been exposed--that we know). She wasn't tested, we just began eliminating and this is where it took us--tho I'm noticing a lot of FTT, she was always roly poly (her belly really was distended). I've had guilt for just thinking she was pudgy-cute--HELLO! Not cute!

DD's reactions were:
a huge bloated belly
puffy face
insomnia
difficult to wind down
irritability/crying jags/irrational behavior
stuttering
she quit singing
she would catch every sickness and it hit hard
She exhibited autistic tendencies and that was scary (DH's lil sis is autistic)
I've recently been reading _CHanging the Course of Autism_ again and it's a fascinating read--goes into immune system, allergies, GI issues, ect and much of it applied to dd!
We are all on her diet, tho ds cheats occassionally...it has improved our health as we have to prepare all our food at home and we eat really well...
Really tho, what erks me is the pity we get from others--"Oh wow, she's going to have a tough life" is the latest comment I've received. (meaning abstaining from the "good things" in life). She is really good about looking out for herself and little sister. The stickers are a great idea! Do you have a website?

 

[fullofhope]

We got them from nurserysafe.com, but it was 2 yrs ago, lol! That tells you either how big the roll is, or how few places we took him! But really, it is a huge roll.

Couldn't a child have a wheat allergy/sensitivity AND a gluten intollerance? I would think that possible. Easy to find out, really- feed them something gluten but not wheat. Lots of that around. My son can read "wheat free" so gets his hopes up that something is gluten free.... only to find it contains barley or something.

:

to the OP- are we helping at all? What is it really you are after? Sometimes it helps just to know you aren't alone!

 

[momofmine]

So, from the lists of symptoms in previous posts, are you saying that your kids are still having diarrhea, poor weight gain, despite being gluten free? My older child has a lot of signs that point to a gluten issue, but I am still struggling with having him gain weight, stool issues, etc, so I just feel like it is more than just removing gluten for him.

 

[tanyalynn]

Quote:

Originally Posted by momofmine So, from the lists of symptoms in previous posts, are you saying that your kids are still having diarrhea, poor weight gain, despite being gluten free? My older child has a lot of signs that point to a gluten issue, but I am still struggling with having him gain weight, stool issues, etc, so I just feel like it is more than just removing gluten for him.

I didn't mention our symptoms above, but all is not rosy with my daughter (gfcf 1.5yrs now). This year, as I've slacked on homemade stock and fermented veggies, her digestion seems to be getting worse. She's been having intermittent stomach aches, and right now I am suspecting (and sincerely hoping) that it's a global digestion issue and not a specific food, based on timing (can't see it associated with any particular food, sometimes before and sometimes after mealtime, and adding in fermented veggies for several days, multiple times a day, seems to help). Her poops have been getting intermittently more yeasty since the end of summer. We've never had growth issues, but things aren't right here. Oh, and her poop is pretty light, I _think_ it was darker last winter, and it's been trending, so I am trying to figure out the bile/light poop connection that JaneS has mentioned (Jane's very helpful link).

http://www.enzymestuff.com/rtstools.htm

Because I'm thinking it's mainly that I've been letting in lots of not-so-easy-to-digest foods, and reducing our easier-to-digest stuff (vs last year), I'm going to reverse that, and I'm thinking sometime next year we may try GAPS. You did SCD, didn't you? And you saw good changes? I am hopeful that as we keep addressing the heavy metals (though I am pausing in chelating her cause I don't want to drag those metals through her when her gut's so marginal), and I make dietary changes, she will get better. But I've been considering the tongue tie thread and wondering if a posterior tie may be contributing to her gut being marginal. I feel like there are lots of things that could be at work, and I'm not sure how many I need to address in order to get to good, robust health.

 

[Multimomma]

Quote:

Originally Posted by Chinese Pistache The tests aren't always accurate, though. They're just one tool. Observation is the most important. Frankly, with the reactions you mentioned, I'd get an epipen asap. Did an allergist do the test or your reg pediatrician? We've seen two ped allergists and both said observations trump results every tim. Respiratory involvement and hives are the standard reactions with IgE allergies and anaphylaxis. But with IgE or IgG or intolerance, you're likely going to see gastro problems, too.

Regular ped ordered them, he would NOT do a referral to an allergist or a GI

:

What the ped said was, well, if you think wheat is a problem, don't eat it. Duh.

lol He does get sick with rye, barley and spelt, but I don't know. I just feel like I'm doing it all alone. KWIM?

New insurance, this next year, and we're starting all over. I know we're already eating wheat-free, but it would help ME to know if it's "just" an allergy, or if there are other issues we're looking at. Like I said, the respiratory stuff is getting better, but the gastro stuff/pains/neuro stuff is getting worse.

 

[p1gg1e]

Quote:

Originally Posted by fullofhope For a long time I felt like we had to live in a bubble. We couldn't go to people's houses, church, school... or trust grandparents or sitters with his diet. Every visit with the grandparents meant a week of sickness after. We made our home gf and made visitors wash hands before playing. We hosted playgroups rather than go to other's homes. Things started to get better when he turned 3- I found a preschool willing to go gf. They had kids wash hands upon arrival, and I supplied gf playdoh, gf pasta, gf whatever. They did cheese and fruit/veg for snacks. The other moms were great about it. Now we homeschool. I still feel at times like I want to scream- we are back to the "can't go anywhere" with dd, who eats everything off the floor, touches everything, and chews on her fingers.... so we are back to no sunday school, bible study, playgroup at other homes, or any place with food.

This is where we are at with visiting and such.

This thread has really helped

thanks!!

Our issues are mostly with going out. when I need to or want to leave her its a whole week+ of me sitting at home nursing and her crying.

Ive been GF since she was 12 weeks this is how we figured it out with me elliminating it.

I took YDD to the Dr, this week I was told to stop BF

I had to press for me info and ask if they knew of anyone that saw allot of babies/toddlers with celiacs. So I didnt get any info.

I'm taking her ( and all of us) to an ND here after the holidays.

Has anyone seen this article on treating the inflamation? Ive been thinking of getting some vitamin D ( for winter ) and probiotics when she feels bad and wont take it unless its in a dropper.

http://www.celiac.com/articles/21685...ase/Page1.html

Thanks for all the posts Mamas!!