How Long Until They Feel Better?

[NewGFMom]

Just another "unofficial" poll.

When you took your child off of gluten cold turkey, how long until they felt better? It's only been a week, and my son still says his stomach hurts all the time. I am truly dreading cutting out dairy because that is the only protein he eats. But I'm worried it may come to that.

He had no behavioral or growth issues, just a tummy ache and some weird stuff was going on in the bathroom (which seems much better as far as I can tell). So, there's not a lot objective measures I can look at and say, yes, this is working, or no it's not.

I know each kid is different, but I'm just wondering how long before you saw appreciable changes in your kids?

Thanks,

margaret

[Darn210]

We also did not have significant symptoms. She would spit up (about a mouthfull) one or two times a day. She was on Prevacid which helped (she had some days where it would happen a dozen times prior to the Prevacid). My daughter was tested for and diagnosed with gastroparesis (slow tummy) about a week after we went gluten free. So we started Erythromycin two weeks after going gluten-free. She was also a little constipated and I was told to start Mirolax. I waited a few weeks after starting the Erythromycin - personally, I wanted to know the effect each of those changes made. The end result was that shortly after starting the Mirolax (which was a little over a month of gluten-free eating), she stopped spitting up.

Do I really know which one of those things helped the most? It looks like the Mirolax but maybe it really took a month of gluten-free eating.

We went another month and stopped the Erythromycin. We've had two instances where she spit up. Both after eating the same item (which I thought was OK - I threw the packaging away so I'm headed to the store later to read the ingredient list again). If we go another month doing OK, we get to stop the Prevacid . . . then another month and we wean off of Mirolax.

I'm sure that's more info than you wanted but OUR results are subject to interpretation . . . Also, I know most people (including us) make a few mistakes in the first week or two (Why would they put wheat in that?!? ) - just part of the learning process.

It's so confusing . . . I've got two doctors telling me different things and then telling my pediatrician something different alltogether . . . but I believe that is for a different area of this forum!

[EBsMom]

Margaret -

My daughter (9) has been gluten-free/cf for around a month now. Her reflux symptoms and her gassiness started to decrease a bit during that first week, but didn't seem to actually disappear until the middle of the third week. I noticed, midway through the first week, that she had had a particularly bad day after eating a lot of dairy, so we cut out the casein, too, and that seemed to help a lot. It's been kind of subtle - her symptoms just kept lessening, and then one day I realized that she hadn't had her "reflux cough" in a couple of days. I checked on her, umm, toilet contents one day recently, and things seem to be getting better in that department as well (firmer, darker, not floating.)

She did experience some withdrawal, I think. The first week she complained of a headache and some transient nausea, and her energy level was way down. The second week, her energy level rebounded, but she was moody and tearful for several days. Then all that cleared up and she's been pretty even-keeled since then. I read recently that it can take 6 - 12 months for a child to return to a healthy baseline after going gluten-free (and possibly cf.) I don't think that applies to symptoms, necessarily, but rather to what is going on inside (enteropathy, anitbody production, etc.)

Good luck to you and your son!

Rho

[EmmaQ]

at age 3 my Celiac went gluten-free, the change was almost immediate. The diarrhea stopped in the first 3 days. Behavioral changes were on going monthly. He never really knew what "pain" was to say he was in pain, simply b/c he had never known any different, poor thing.

I will say he did have leg pain on and off those first few months and I had no idea what it was attributed too. He was dairy free already b/f going gluten-free.

A hungry child will eat what is served eventually. Hunger wins over. This is why I think it is so important to really examine what children decide not to eat over the long haul, my celiac never liked bread, cookies, donuts, cake, none of it and he would take just enough of a bit of sandwich to not be hungry, but not enough to truly gain calories to grow. If you serve gluten-free/DF food, the child will eventually try it and eat some of it and may like it enough to eat more. It is a harsh measure to do especially at the onset of a new gluten-free diet. But on the other hand a limited diet is not healthy for a growing body. I serve a meat, a veggie and a salad for dinner every night, some nights only the veggies and salad are eaten -- it's okay, incomplete proteins can be acheived through veggies & fruits. But it also happened repeatedly that I started to look at our meat source as a problem.

It is entirely possible that a very sensitive person could react to meats. It sounds a little far fetched until you look at what animals in the US in the meat industry eat which is against what they would naturally eat if they were not in factory farms. That grain feed is also becoming more wheat based from corn based. I noticed my celiac child started to not want to eat chicken anymore. He would eat the beef we purchased locally which was out in the pastures, grass fed. I started to to do a little digging, it is possible that gluten is in the muscle tissue of animals, possible. Well the proof is in my child not wanting to eat it. We have bought free range chicken and coaxed him to eat it, he has not refused it again since the change in our source.

If a child is only drinking milk for a protein source, that needs to change. Milk is not an adequate protein source for children, it inhibits calcium and iron absorption something a Celiac child does not need in the early stages of healing the gut. www.realmilk.org Cow's milk truly isn't all it's cracked up to be.

[celiac-mommy]

Hi, our daughter was diagnosed 1.5 years ago. She was complaining of horrible stomachaches and her belly would swell up any time she'd eat a high gluten meal. Immediately after her biopsy (our GI was positive by sight) we went cold turkey. I had been doing research and had a list of things to start her out with. Within 3 days it was as if she never had a problem. I was extremely cautious about what I was feeding her, almost nothing processed no matter what the labels said. Strictly fruits, veggies, chicken and fish, she doesn't have a dairy issue (thank God), so we stuck with yogurt, cheese, milk and ice cream. I knew for sure she wasn't getting any gluten. At her 1 month check-up, she had gained 3 pounds!! (hadn't gained a pound in an entire year). She is the type that has a VIOLENT reaction if she gets a grain of gluten in her system, so I always know for sure when it happens-only 3 times since her diagnosis and one time was from her playing at the pumpkin patch last fall--they were climbing in the hay bales and the dust from the hay caused 2 days of vomiting. If you think that their might be a chance of cross contamination (think jars in your fridge and cupboard too) I would try cold turkey again and just stick completely with whole foods--its a great time to do that with kids now with all the berries in season--mine had a blast this morning picking them--none made it into my container!!

Here's a few more ideas:

soap and shampoo

toothpaste

lotion--all of these also apply to parents who are fixing their meals as well--wash your hands if you use any product with gluten--makeup, hair products etc...

cross contaminated jars-PB, butter, mayo etc..

non-diswasher kitchenware (handwashing in the same water screams contamination)

those are just a few ideas. I read back on this and I sound a little OCD, but I can't be too careful. Hope this helps, good luck!!

[Danesmommy]

My son is 15 months old and was just diagnosed with Celiac after a biopsy on June 18. He had a blood test done first, but it was inconclusive. As an infant he was put on Prevacid for his projectile vomiting, and later he was weaned from that and he no longer vomited. He was perfectly fine until his 12 month visit to the doctor and he hadn't put on any weight since his 9 month visit. At that point his doctor recommended we see a Gastroenterologist. It took a while to get in, and in the mean time I noticed that he always had diarrhea. When we finally got in to see the GI doctor she sent us to the hospital for some blood work on a number of problems. Everything came back normal except his IgA ( I think that is what it was called) so she suspected Celiac at that point. We went ahead with the biopsy, which was positive and I have been doing my best to feed him a gluten-free diet for 4 days now, although I havn't seen the nutritionist yet. I'm not only hoping he starts to feel better soon, but I hope he starts growing. He's almost 16 months old and weighs 17lbs 3 oz. Everyone likes to point out how small he is to me. I'm new to all of this and I find myself having a difficult time dealing with this disease, and I'm not even the one who is sick. I wish you luck and hope your kid starts feeling better soon too.

[Momof2cuties]

My son is 15 months old and was just diagnosed with Celiac after a biopsy on June 18. He had a blood test done first, but it was inconclusive. As an infant he was put on Prevacid for his projectile vomiting, and later he was weaned from that and he no longer vomited. He was perfectly fine until his 12 month visit to the doctor and he hadn't put on any weight since his 9 month visit. At that point his doctor recommended we see a Gastroenterologist. It took a while to get in, and in the mean time I noticed that he always had diarrhea. When we finally got in to see the GI doctor she sent us to the hospital for some blood work on a number of problems. Everything came back normal except his IgA ( I think that is what it was called) so she suspected Celiac at that point. We went ahead with the biopsy, which was positive and I have been doing my best to feed him a gluten-free diet for 4 days now, although I havn't seen the nutritionist yet. I'm not only hoping he starts to feel better soon, but I hope he starts growing. He's almost 16 months old and weighs 17lbs 3 oz. Everyone likes to point out how small he is to me. I'm new to all of this and I find myself having a difficult time dealing with this disease, and I'm not even the one who is sick. I wish you luck and hope your kid starts feeling better soon too.

I'm with you!! It seems our kids are nearly identical. Allison hasn't gaine any weight in the past three months! She's almost 18 months and is still just 19lbs. Her blood test was also inconclusive, but we're assuming it's positive based on a family history of Celiac. We can't get in to see the pedi GI until the end of September, so we started the gluten-free diet as suggested by her pediatrician. She goes in for a check up on Wednesday...I'm curious to see if she's gained any weight!! Her 8 wk old younger brother is already over 13 pounds!

[NewGFMom]

Looks like we're making some progress. Suddenly, my son is consuming large amounts of food, which he almost never did. I'm used to him eating about half of his dinner and being done eating for the night. Suddenly he just keeps eating! It's all good stuff, rice pasta, applesauce, fruit, cheese and yogurt.

So, I'm quite pleased with that. And his BM's are no longer hurting him. So I think we're on the right track!

[celiac-mommy]

Looks like we're making some progress. Suddenly, my son is consuming large amounts of food, which he almost never did. I'm used to him eating about half of his dinner and being done eating for the night. Suddenly he just keeps eating! It's all good stuff, rice pasta, applesauce, fruit, cheese and yogurt.

So, I'm quite pleased with that. And his BM's are no longer hurting him. So I think we're on the right track!

So happy for you!!! Hope it keeps up for you and you see more progress each day!

Take care,

-rachelle

[Nic]

My Celiac son was diagnosed 2 years ago at 4 years of age and we saw some improvement within the first couple of weeks. But over the past 2 years the symptoms came back and actually worsened this past winter and finally a doctor said to take him off dairy. Up until then our previous doctor swore to me that he symptoms weren't consistant with dairy. Days off the dairy and he is a new kid. He is now symptom free for about 2.5 months. His symptoms were: projectile vomiting from birth on milk based formula (eventually put on nutramigen), constipation once introduced to cows milk at 12 months, eventually severe constipation which even 4 enimas in the ER couldn't get fixed. He barely ate anything as he was always so backed up. So while I dreaded ever having to take the milk, as this boy is a complete milk lover, it was truly worth it. He eats normal meals now and he has a normal bowel movement everyday.

Nicole

[janelyb]

Really my son's tummy didn't stop hurting until about 2 months into the diet and I noticed the most improvements since dairy has been removed as well. It does take time, I actually went into the diet thinking don't be suprised if you see little improvements the 1st 6 months......some people take longer than 6 months. Like you said everyone is different. Make sure you have cleared your house of gluten because some small things that you may not even realise might still be causing tummy pain.

Like for me it was my shampoo. I didn't realise it or even bother to look until a month into the diet.

Janel

[buffettbride]

My DD noticed a change with every single meal. If it was a gluten-free meal--she didn't get a tummy ache or reflux symptoms. If it was gluten-y, she'd get reflux. Every single day.

So, pretty much from day 1 of gluten-free she has felt better.

I will add, though, that she had pretty mild symptoms compared to some to begin with.