New G/f Mama Frantic About Babys Weight!

[MarsupialMama]

Hi, I just started researching the whole gluten-free ordeal a few weeks ago. My baby (now about 22 months) weighs around 16-17 pounds. She has all the signs of celiac (minus the vomiting and diarreah - rather constipation since she was born). I have no problem putting her on a gluten free diet - we started 4 weeks ago. I am doing doing it too because I have had the same problems my whole life (24 y/o) and think I probably have it as well.

I have not had her tested because I know the tests at this age can be inconclusive and I don't want to further damage her intestines by putting her back on gluten. I'm not into have her undergo a biopsy just to get an actual "label" if I can just try out a gluten-free diet change for several months.

We had a horrible experience several months ago when we took her to the hospital for dehydration (she had the stomach flu and wasn't keeping anything down - she started getting lethargic and it was a true emergency). During the time there because her weight was so low (14 pounds?) they called CPS on us and threatened to take away all of our children for "medical neglect". It scared the life out of me. She gained a few pounds after she left the hospital (no wonder after she starved there!), so it looked like improvement, but she hasn't gained any since (6 months later). While the doctors/CPS are not on my case right now, I am frantic wanting her to get better and gain weight because I live in continual fear of her being taken away from me if something freaky were to happen. I want to avoid doctors at all costs unless she really doesn't have celiac and we have to go further with finding out what could be the problem.

Any testimonies about babies, experiences, or information on how long it takes for children to gain weight once gluten free, would ease my mind to the Nth degree! Since she has been off gluten, her appetite has improved MAJORLY, and so have her sleeping habits and her attitude. We have had two accidents with gluten (her sister gave her a few bites of wheat bread) so, I'm not surprised if we have had a setback. Any websites or infomation on where to read stories of parents experiences with their babies and weight/symptoms would be so helpful. I haven't been able to find many stories.

Thanks so much. I'm usually a laid-back person, but the whole fear of losing my daughter has made me a frantic nut-case who cries everyday and can't sleep at night. I don't want my family to have to live like this.

[celiac-mommy]

Our dd was 4 when she was diagnosed and was growing totally normal for her age up until that year, our son, however was always in the 10th percentile and at age 31mo was 26# and still only wore a size 5 (infant) shoe. 3 weeks gluten-free and he gained 3#, 1 week back on gluten and he lost 1.5#. It's been almost 4 months gluten-free now and he's about 33# and has grown 2-3 inches (will find out in 3 weeks) and went from that size 5 to a size 8 in 1 month(!!!!!--poor kid) He started talking in complete sentences, potty trained (finally) with no real issues, now has focus and concentration and hardly ever throws a tantrum (unless he's super tired). He is a COMPLETELY different kid, no doubt!!! And he now eats a TON, where before he hardly ate anything past breakfast.

[Ridgewalker]

Any testimonies about babies, experiences, or information on how long it takes for children to gain weight once gluten free, would ease my mind to the Nth degree! Since she has been off gluten, her appetite has improved MAJORLY, and so have her sleeping habits and her attitude. We have had two accidents with gluten (her sister gave her a few bites of wheat bread) so, I'm not surprised if we have had a setback. Any websites or infomation on where to read stories of parents experiences with their babies and weight/symptoms would be so helpful. I haven't been able to find many stories.

Thanks so much. I'm usually a laid-back person, but the whole fear of losing my daughter has made me a frantic nut-case who cries everyday and can't sleep at night. I don't want my family to have to live like this.

Welcome to the forum, ya poor thing! I'm so sorry you've been going through this. This really is the BEST place I've found to talk to other parents of Celiac kids.

I think it's an excellent sign that her appetite, sleeping habits, and attitude have improved! I don't blame you for not wanting to put her through a biopsy now that you're already seeing improvements.

Are you keeping track of her weight at home? I know a home scale won't match up perfectly with the doctor's scale, but it will help you keep track of changes.

Setbacks happen. Try not to sweat them- done is done, move on from there.

Have you been reading up on cross contamination (cc) issues? If you have questions about that stuff, please just ask. Don't forget to check any medications she takes (check the manufacturer's websites,) shampoo, baby bath, diaper creams, etc. Even though she doesn't eat some of those things, you really don't to put that stuff on her skin.

My kids' improvements on going gluten-free:

Lucas, went gluten-free May of last year, at age 6 1/2. Stopped having constant poopy accidents, lost the dark circles under his eyes, improved appetite, gained a couple pounds (is still somewhat thin, but Dr says is within healthy limits,) MAJOR increased energy, improved immune system (used to get viruses and infections constantly, now only two infections in a year,) has normal poops instead of a sticky, sandy mess. Mystery fevers disappeared.

Ezra, went gluten-free October of last year, at age 4 1/2. Attitude improved (behavior had gotten so bad at home, and he had no focus or interactiveness at preschool- Dr was beginning to think he may be Bipolar. All improved on gluten-free diet.) Appetite improved, pickiness improved- he actually eats a variety of foods now, instead of having 5 foods that he would eat. Sleeps better. Had normal poops for the first time in his LIFE- instead of a pile of mush in the toilet.

[okgrace]

Wow, that sounds like a scary experience. I would recommend finding a doc that understands celiac's and won't make you try to test her, but could be supportive of you. My daughter was always under weight and never slept as an infant and even now at four wakes up once a night. Before we started gluten-free she was up two or three times. As an infant she slept 10-20 minutes at time most of the night. The first couple hours she might sleep 1 hour at a time and napping was about 30 mins of sporadic sleep. We tried everything and the doc kept telling us this is how some babies are. I haven't met one yet like her.

She wasn't 20 pounds until she was well over two. She is four and still thin we have been gluten-free since Jan 08. When we started the diet she immediately started gaining weight, was happier, slept, more energy and boy has she grown from a barely size three to a five and don't think we are going to be a five long.

Good Luck to you!

[slmprofesseur]

Hello and welcome!

my little guy is 2 and is only 22#. I think he weighed the same as your dd at 22 mos. He was a 33 wk preemie (4 lbs)(probably due to my gluten intolerance...) he was in the 4-10 percentile until his wheat/eggs/nuts/shellfish allergy diagnosis. We tried the wheat/allergen free diet (allowing rye etc.) He made some gains on the charts but was still in the 25 % or lower. Then I decided to go gluten free. After going gluten free for 6 months he made it to the 50%.

Does she have any skin rashes? You may want to consider allergy testing. I found that eliminating the allergens (which were coming from my breastmilk) really helped a lot. Allergy testing doesn't require her to have a scope, just maybe 6 pricks on the back. You can request just to be tested for major food allergens.

In the meantime try some foods such as avocadoes high in fat but good for baby. Rice cereal, ds likes bob's red mill. He can only tolerate Gluten-free oats, but really likes them. He also loves fruits...and sweet potatoes. He likes Tinkyada pasta (esp. the shells) they are good finger foods. Beans are good also.

Don't fret! Do try the home scale. Let us know what you decide!

Sabrina

[sixdogssixcats]

We have been gluten-free for two weeks now, and my 3 1/2yo daughter is eating well for the first time in her life. She still drinks most of her protein and we're now able to work on weaning her off as she's starting to eat so much and be able to sustain herself with "real" food. Prior to being gluten-free, her diet primarily consisted of kefir, dry cereal and crackers, stage 2 sweet potatoes and applesauce. She now shovels in fresh fruit and took her very first few bites of meat EVER last week. We could not be happier!

She's 3 1/2 and about 30 lbs, which is petite but not tiny, but she's only that good weight because she's been supplemented with a liquid diet her whole life. We are very hopeful now that she'll be able to maintain that weight and grow on table foods just like every other "normal" kid.

Lesley

Catherine's mom

[Fiddle-Faddle]

I tried to pm you last night, but my computer's been weird, so I don't know if it worked.

Anyway, please consider eliminating all dairy from her diet, as well as yours if you are breastfeeding. If she has problems with gluten, her villi are likely damaged, and the villi are what produce lactase (which digests the lactose in milk).

My rule for my underweight #1 baby was NO EMPTY CALORIES. Every calorie should be packed with nutrition, so no cookies, no cake, no sugary snacks, no bread (even gluten-free). We did lots of fish (broiled salmon, NOT tuna, as that is high in mercury), tofu (make sure baby isn't sensitive to soy), ground meat (try to buy organic), beans, avocados, fresh fruit (no citrus or strawberries before 1 year of age), mashed steamed carrots, sweet potato, well-cooked green beans, peas, etc. and rice (brown is more nutritious, but white may be easier to digest). My kids never had problems with outs, but I think a lot of celiac kids do.

If she is still constipated, give her lots of stone fruits (peaches, plums, apricots). Bananas are good for both constipation and diarrhea.

I would consider making the whole house glutenfree and dairy free until she is stable. I would also do a LOT of research on vaccines, as there is a strong relationship between vaccines and autoimmune disorders. A good place to start is www.nvic.org. If you do go ahead with vaccines, giving any more than one shot at a time is asking for trouble--but the doctors either don't know this or won't admit it.

Best of luck to you!

[Fiddle-Faddle]

I just remembered--a year or two ago, there was a mom posting on here who had had her kids taken away and she was accused of Munchhausen's by proxy. She fought, and eventually regained custody of her baby, who did have celiac. You might try a search on this board of Munchausen's (not sure of the spelling, though).

[MarsupialMama]

I haven't gotten a scale for at-home use because I knew I would drive myself nuts and be weighing her several times a day! LOL! Weight can go up and down by several ounces depending on bowel movements, drinking liquids, sweating in the sun, etc, so I didn't want to make myself neurotic. There is a really accurate scale for people to weight themselves on at the grocery store and I've decided to go to that store once in a great while to check her weight (about 30 minutes from us), but not have the access every day to make myself crazy.

I think she hasn't gained any/much weight in the last month because I was still giving her cereal with Rice Dream milk, which I just found out today is not gluten-free, and also the two mistakes with bread/soup that she got from her sister. Other than weight I see improvement. She is becoming a different kiddo, though some days I credit it to just getting older.

I appreciate all the replies - it helps to have people who "get it" and not just stare at you blankly when you start talking about gluten-free and they wonder what tangent you are getting off on next. LOL!

[ptkds]

My dd#4 wasn't on the charts a yr ago. She has been gluten-free for about 1 yr and she is now in the 25%-50% range and doing great. It will happen. just give it time. If your pedi is truly understanding, you shouldn't be afraid of them. Not taking your dd to the dr for routine checkups (esp for vaccines and such), then you may just add fuel to the fire for CPS to claim medical neglect. The mom that was on here last year who lost her kids had medical proof of what was going on. That is how she got her kids back (if I remember right).

I am not saying to put her back on gluten. You need to find a dr who is willing to accept the positive results from the diet as proof. Find a local Celiac support group and ask around about good doctors. PLus, it can take 6 wks or more for the damaged villi to heal. So if they did a scope really soon, they may see some damage. My dd#4 only had stomach ulcers, and all her tests were negative, but her GI agreed that gluten is what caused the ulcers and to put her on a gluten-free diet right away.

Good luck, and keep us updated. This is a great site for support, venting, etc!

[MarsupialMama]

That's not a bad idea - about finding another pediatrician. We like the one we have - he actually advocates for us and our choices - against the doctors at the hospital during our whole ordeal who were the ones really after us. The nurses at his office are rather condescending though, so it's not really him - just his help that I don't like. We are moving to another state soon so will have to find a new ped anyway. Before I do though I will find a celiac mom's recommendation. Lol! What a great idea.

We did take her to a naturopathic doctor to get some blood tests done and get some advice, and they came back testing positive for slight anemia (B12 and iron) and fecal fat positive, which are right on target with celiac babies. I told the doctor that we wanted to wait (since we had just started a gluten-free diet and were starting to see improvements) a few months and see if her levels (stool and blood) improved and she agreed it was reasonable to try. She is not a pediatrician, but is a regular medical doctor, so as far as having our butts covered about the "neglect" thing right now, I think we will be okay....for a little while anyway. At least enough to see if this is really the problem (which I think it is).

[Fiddle-Faddle]

Not taking your dd to the dr for routine checkups (esp for vaccines and such), then you may just add fuel to the fire for CPS to claim medical neglect.

You are totally correct about this. Unfortunately, multiple vaccines have caused irreversible damage to even healthy babies. Celiac babies are at far greater risk of vaccine-induced damage, since they already have leaky guts.

I would say that her baby's health is the first priority--and that means no multiple vaccines.

Note, I am not saying no vaccines at all. There are many pediatricians who are willing to either delay vaccines or work with the parent to come up with a modified schedule that only gives one vaccine at a time and puts off unnecessary ones like Hepatitis B (which is transmitted primarily through contaminated needles and sexual contact--hello, this is not necessary for a baby unless his mother is infected).

In fact, as more and more doctors have their own children diagnosed with autism, they are starting to pay attention to this and THINK, instead of believing everything the pharmaceutical industry shoves down their throats.

[gfpaperdoll]

yes, thank you Fiddle Faddle, I agree with everything that you have posted.

to the original poster, hang in there mom - just feed her plain good food & I double the advice to just take the whole house gluten-free, it is a lot easier on you & safer for the baby. chances are you two are not the only ones with a problem. No need to buy expensive gluten free breads etc, just get some Mission Brand white corn tortillas to heat up as a bread substitute. great with PB & jelly (& bacon or ham or chicken).

cook a turkey & you will have a lot of meat - eat with cooked veggies, make tortilla roll ups, toss some in scrambled eggs, freeze some for chicken salad, make a soup with the carcass. just add some carrots, cabbage & maybe a can of tomatoes & tomato paste - if ya'll can tolerate tomatoes.