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When My Child First Went Gluten-Free, I Noticed _______
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My 2 year old has been gluten free for one week. I have not seen any changes yet. I know one week is not much, but I was so hoping for a magic bullet...

When did you first notice changes/improvements?

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Give it more time, what were his main symptoms???

I know for myself, I felt worse before I felt better.

We did see an instant improvement with my young ds though, but he was pooping 5-7 time per day.

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Up to 5 poops/day, mostly undigested food.

Today, her first poop was at 1:30pm, and from a distance, it would have looked normal and formed (up close there was still undigested food, but not as much).

So maybe we're turning a corner...

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The first thing we noticed was his energy level increased and his naps got shorter. It was a couple of weeks when he started looking healthier (skin complexion, darkness under eyes lessened). It was about a month to see real weight gain and growth and ...chubbier cheeks! Be patient, it can take a long while to heal and recover.

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My son had just turned 3 when he was diagnosed. He had been very tired all the time prior to that, and dropped his nap altogether within 6 weeks after going gluten-free. He seemed to have lots more energy in general - less reliance on the stroller and more interest in walking/scooting. Also he started growing a bit within a couple months - went from 18 mo clothes to 2T.

I would give it a bit more time. We didn't have any bathroom-related symptoms, so there wasn't much change in that for us.

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It can take a while. My daughter was 13 when diagnosed so she had been ill for a while. Our pediatrician said 6 mos. for recovery. He recommended giving her fish oil too as apparently it is healing for your insides. Prior to diagnosis she was pale, thin, had eczema, not a whole lot of personality, always looked sad. About 3 mos. in she started getting more color in her skin, started gaining weight. She looked better but still had stomach problems so we went back and she was also diagnosed with irritable bowel syndrome. We've been filtering out what foods are triggers and for her dairy is definitely out. Give it some time but don't wait too long if you aren't getting any results. Oh! Her eczema is gone!!

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Hi, I'm new here. We're coming up on the 4th anniversary of our diagnosis. My son was 3-1/2 at the time of diagnosis, about 6 months into symptoms. Poor kid was eating pasta 3 times a day, because it was all he wanted and I just wanted him to eat something. So, when we finally went gluten-free, his improvement was rather dramatic, but he was also very, very sick. Like others, I noticed an improvement in his energy first. He would mostly just lie around on the floor all day; didn't run with his twin brother, or partake in other activities. After about a week, I noticed he was moving around more, smiling more, and just seemed happier. Within 2 weeks he had a lot more energy.

His gastro symptoms were white, yes white poop, and throwing up daily. The vomiting stopped within a few days. I don't remember how long it took his poop to return to normal.

Good luck. I know the not knowing is always the hardest part; the part that keeps parents up at night and makes us sit in the dark and cry.

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Within days, older son's rash disappeared, and his behavior did a 180 turn for the better. We were considering an evaluation for autism, but now as long as we keep gluten out of his diet I don't think it's necessary. He can actually function and has lost most of his aggressive behavior. He got glutened this weekend and I got a glimpse of what he used to be like. It wasn't pretty.

My younger son hasn't shown much change. He did have a sandpapery rash along his torso that's mostly gone now so he was definitely reacting to some extent. That disappeared within 2 weeks or so.

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He stopped throwing up 10 times a day. The bloody noses stopped. He stopped fighting with his sister all the time. The rash went away. He was more organized at school. He was happier.

But, he kept getting glutened. It took a long time to figure out which foods he could eat. He is very sensitive and we found that we had to avoid "processed in a facility that also processes...". Then we had to carefully check everything for cc. Big pain. We spent the summer doing elimination diets to figure out what started to get him near the end of the last school year. We finally figured it out and it's back to school again. What a summer!

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My 2 year old has been gluten free for one week. I have not seen any changes yet. I know one week is not much, but I was so hoping for a magic bullet...

When did you first notice changes/improvements?

I think your 2yo is lucky. My son had some GI symptoms, dental enamel defects, delayed growth/puberty, recurring mouth sores. He was 15, had a bone age of 12 and weighed only 95 pounds (and had weighed 92 at age 12).

He didn't notice any immediate improvements, but what he said broke my heart: "I never realized that eating wasn't supposed to hurt." The poor kid lived 15 years with this.

We used to wonder why he was so crabby and lacking in energy. As you can see from my signature, he went gluten-free/DF and though we don't have a true diagnosis, he is happy to be bigger and healthy. He will have to decide for himself whether or not to do a gluten challenge in a few years.

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My dd was 4 when she was diagnosed--no more tummy aches (that was her only symptom)

My son was 2 1/2. Major changes in a matter of a week:

All Autistic tendancies were GONE!!!!!

gained 3#

started speaking in complete sentences

started potty training

started eating us out of house and home

started interacting with kids at school

no more brain fog-he could concentrate on 1 activity for more than a few minutes

greatly reduced amount of tantrums and frustrations

Honestly, he was a different kid and this is no exaggeration, all this happened within the first week. His teachers were telling me by day 2 that he was a totally different kid and people who saw him regularly-like my parents and girlfriends-couldn't believe the change.

The hardest part was that in 3 months, he went from the 10% in height and weight to the 75% for height and the 50% for weight (and has remained exactly at that point for the past 3 years!!). He was in so much pain! He went from wearing 12-18mo clothing (as a 2.5 year old) to wearing 3T clothes. His shoe size went from a 6mo old infant size, to a size 7 in those 3 months as well. It was CRAZY!

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Are there any more folks with stories like these? My son is 4yo and has just had a positive blood test com so hoping his grumpiness and aggressiveness will vanish.

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My daughter had not gained a single ounce from the age of 1.5 to 2.5. In the first weeks on a gluten-free diet she gained about a pound a week. She stopped vomiting. She immediately lost her dissented belly a few days into the diet. The circles under her eyes were gone within weeks. Her mood stabilized although she is still a toddler ;) and she regained an appetite. It has been an amazing transformation and such a relief! Now we aren't sure what symptoms to look for if she is accidentlly exposed., if it will be a full blowing vomit episode or a belly ache....

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It took us two weeks to notice an improvement. She gained 2 lbs over the first month. Eating was better, mood was better, more active, happier, definitely more energy! I think she is still healing though. It's only been 2 months and she is 20 months so we are also dealing with the terrible 2's. It's tough to know what the full extent of Improvement in behavior is!

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It was a dramatic behavior change that took us to the doctor in the first place. Our 5 year old was suddenly having tantrums over nothing, struggling with the slightest frustration (socks won't go on!), and no longer enjoyed things that he previously loved. The change was overnight (seemingly). The actual diagnosis took months, so we sort of got used to it. When he was finally able to be gluten free, the change in behavior was almost immediate (yay!) and then I gradually saw changes - some that I hadn't even noticed as "symptoms." He was sleeping better, happy, full of energy, etc. He also grew 3 inches in about 2 months.

I was sad when I heard him singing in his room while playing legos. I hadn't even noticed that this cheerful habit had stopped! We were so stressed by the tantrums I didn't notice all the little subtle things. Poor kid felt so crappy that he couldn't really enjoy anything.

After two weeks it was like we had our son back.

Cara

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My 2 year old has been gluten free for one week. I have not seen any changes yet. I know one week is not much, but I was so hoping for a magic bullet...

When did you first notice changes/improvements?

Our situation might be a little different because my son has a gluten intolerance related to his autism but is not celiac. Unfortunately I did not notice any changes right away. I say unfortunately because I didn't have any immediate clues that it was helping. But over 6 months his language test scores went up by 20 points (from severe deficit to "within normal limits"). The biggest thing that told me that it was helping was when we did a gluten test. After a few days of gluten his behavior changed completely - meltdowns, very unfocused, hyper. So hang in there. I think one of the most frustrating thing about testing a gluten free diet is that you don't always see any changes right away, which leaves you wondering whether it's helping.

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make sure you eliminate any possibility of cross contamination. my daughter didnt show any signs of improvement until we replaced all pots/pans, spatuals, toaster, etc in the kitchen. she was diagnosed as hypersensitie celiac though. she has been gluten free for almost 3 months and is just starting to go a whole day without complaining of her tummy hurting. but for her, that is a huge improvement!!

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My 2 year old has been gluten free for one week. I have not seen any changes yet. I know one week is not much, but I was so hoping for a magic bullet...

When did you first notice changes/improvements?

We've only been gluten free for about 4 weeks, but the first thing I noticed is FINGERNAILS! She has always had very brittle nails that don't grow, just crumble off. I looked at her the other day and realized that she has healthy fingernails! It feels like a victory.

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My daughter was 5 when she went gluten-free after being diagnosed.

First month:

It was HORRIBLE! She was SO moody. She was having huge tantrums all the time, her tummy was constantly hurting her too. I was so frustrated and upset. It was very difficult.

After that:

All her sensory issues have been getting less and less apparent. Previously she had severe tactile defensiveness and it was SO hard to find anything for her to wear. Everything bugged her. That is almost gone now after 2.5 months gluten-free free.

She is SO much less moody then before she was gluten-free. Previously she would have meltdowns for no apparent reason and act SO agitated. Now it is SO clear when she has been glutened because the old behaviours come back.

She seems happier overall.

We are still struggling and even though our house is totally gluten-free she must be very sensitive because anytime she eats anywhere else she gets glutened.

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make sure you eliminate any possibility of cross contamination. my daughter didnt show any signs of improvement until we replaced all pots/pans, spatuals, toaster, etc in the kitchen. she was diagnosed as hypersensitie celiac though. she has been gluten free for almost 3 months and is just starting to go a whole day without complaining of her tummy hurting. but for her, that is a huge improvement!!

I am in agreement with this. We actually had our daughter go gluten-free when she was 3 after a naturopath said she had a gluten/ wheat intolerance. Not thinking it could be celiac we eliminated 95% of the gluten in her diet and saw no improvement, so we figured the ND was wrong. If only we had had more info and known she couldn't have ANY gluten at all to see any improvements.

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    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
    • Mnoosh, I had swollen lymph nodes prior to celiac dx and for a while after going gluten free. My neck as well as groin. The groin ones were the worst. Guess what? All gone! It's hard to recall a time line & consider that everyone is different but I think mine completely resolved within a year.  You've been given great information. Just breathe and then again, breathe. You're going to be fine. 
    • It is the only thing you have eaten, so it can't be anything else?  I eat it with no issues so I am not sure how you can be certain that is the problem.  All I am saying is that its sort of "your word against mine and the company's word".  
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