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    Do you have questions about celiac disease or the gluten-free diet?

rebeckalyn79

Help My 3 Year Old, My Have This?

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Okay I will try to make a long story short. Im Rebecca and I am hoping to get some answers here.

My 3, about to be 4 year old was a colicky baby. Diagnosed with reflux and put on soy formula. He has ALWAYS been fussy. He would have meltdowns as a 2 year old to where we had to hold him down from hurting himself. Never knew what brought these on, as he is the sweetest little boy ever and very loving.

He has always been a cryer. Never bad bowels really, besides it was never a good consistency. Either constipation or diahrea.

Fast forward to now, he is delayed in speech and social interactions. He still has wild meldowns and wakes up crying everymorning. He constantly is asking for food even if he just ate. Most of the time its chocolate or sweets. He wakes in the middle of the night asking for chocolate. He gave up naps by two and has a hard time going to sleep now.

He has had a rash (doctor said a childhood wart that is common in small children)

This rash has been around for 9+ months and spreads, gets better, than spreads again. He just never seems focused, like he is in a fog and he gets confused easy which leads to tantrums. Autism, ADD, and a few other things have been ruled out by our previous pedi.

Now I have researched everything and plan on taking him to an allergist (going through a move/insurance change)

Ive heard about Gluten and decided to try it out and see if I saw any changes. Strange but that day ( day and a half gluten free) he napped at school (prek for IEProgram) he has NEVER naped at school! He came home and was talking in fuller sentences he remained calm, and he rash wasnt so "red" it actually looked better. He also fell asleep easier that night and slept through the night with no complaining about food!

We stayed on for 4 days and then I kinda found out a few things he had, had gluten in them (I think) then I gave him regualr cereal today (was going to switch up to see if he changed) And today was bad. Asked for sweets, whined all day and had tantrums.

So my question is, is can you tell a change THAT fast? And does this even sound gluten related?

The problem is, is that he never comunicates pain, so I suspect stomach aches for the reason for the constant asking for food.

Im just so unsure and plan on going back on the diet full force and doing two full weeks to see, I just hate to screw his little system up if I shouldnt.

Any insight on this?

(and sorry for any typos, late and my contacts are out ;) )

Thanks everyone!

~rebecca

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Hi Rebecca, and welcome to these boards.

Yes, every symptom you describe could be caused by gluten, dairy, soy or a combination of all three.

It is very telling that the day he didn't have gluten, his symptoms started clearing up. And yes, it can happen that fast.

If you want a firm diagnosis of celiac disease and go the doctor testing route, you need to keep him on gluten until after the official tests (blood work and endoscopic biopsy) are done, otherwise you are guaranteed false negative results. Just beware that those tests are notoriously unreliable in young children under six and often yield false negatives anyway.

The good thing about trying, and hopefully getting positive results is, that it will be easier for you to convince everybody around him that he needs to be gluten free.

On the other hand, at his age the diet trial is the most reliable test. If he gets better, you have found the cause of his problems.

If you are just going to put him on the diet without testing, you need to take all dairy and soy out of his diet as well, at least for a few months to allow his intestines to heal. After a while you could try dairy again to see if he reacts. Soy is a terrible idea, no matter what.

One of my granddaughters used to have terrible tantrums several times a day (from the time she started solids). When my daughter put her on the gluten-free diet at 16 months, those tantrums stopped and she turned back into her own sweet self.

One of my grandsons would eat and eat and eat, until my daughter told him he had enough and wouldn't get anything until the next meal. And then he cried and cried (he was awfully emotional and would cry for hours if even you'd look at him the wrong way). He was so skinny that you could see his ribs, he looked starved. When my daughter made her family gluten-free, he immediately starting gaining weight, stopped being so emotional and just eats a good sized meal without crying for more food right afterwards (he is five now). His twin sister is speech delayed and used to have a terribly bloated, hard belly.

I am seeing great improvements in my grandchildren. They also all react badly to dairy and soy (as do I), and the twins also to nightshade vegetables (sigh, another thing they inherited from me I'm afraid).

Anyway, I think you are definitely on the right track. Good for you!

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Yes, the change can be THAT fast. I did a dietary trial with my daughter when she was 15 months old. I couldn't believe the difference in her behavior, eating and sleeping habits.

Prior to going gluten-free, my dd was fairly happy....until the evening when it seemed that the slightest thing would pitch her into a major meltdown. We chalked it up to her going into the "terrible twos" a bit early. After going gluten/dairy/soy/egg-free, I no longer believe in the terrible twos. I believe that the terrible twos are just another indicator of a problem with digestion. Our standard diet is too poor to raise happy and healthy kids. And I wish that more pedis would look at hundreds of years of evidence and realize that children should in the least, have minimal grains until their molars come in. Until then, they don't produce the enzyme amylase that helps break down grains. Instead, cereals are pushed for a first food.....it just doesn't make any sense.

As far as testing for celiac disease, Ursa is correct. Your son would need to be on a normal diet. But even then, the chances are slim that testing would be positive. We did find a doctor who has helped us provide the school with medical proof that my dd is in the least gluten intolerant. So there is no problem with the school in that regard. And there's also no formal record of celiac disease to potentially prevent my dd from getting good health insurance in adulthood (pre-existing conditions can be problematic in that way).

I vascilated a lot the first year on whether or not I should have put her on gluten for testing. But the problem was....the improvements were so marked once I took her off....I quickly realized that she had been in a lot of pain and I just couldn't bring myself to torture the kid for a slip of paper that just reinforced what I already knew. There is no cure for celiac disease or gluten intolerance. Just the diet. For me, it boiled down to the fact that I didn't need a doctor's note telling me that my dd had to be on the diet. ;)

I have to commend you on following your instincts and putting forth the effort to do the dietary trial with your son. Many others would see it as too much of an inconvenience to bother with. The first few months of this diet are tough. Mostly because you have to re-learn how to cook and every few weeks, it seems like you run out of ideas of what to fix....not to mention that if only your son is gluten-free, it gets old always making separate meals. After 3 weeks, I gave up and decided to keep all of our meals at home gluten-free. lol! It was probably the best decision I ever made as both my dh and I feel better than we have in years.

The gluten-free diet can be a very healthy one, despite popular medical opinion. Doctors know very little about nutrition and they can't help but think that the only grain on earth is whole wheat. Needless to say, with that lack of knowledge, they don't recommend cutting out an entire food group! As you delve further into this, you will find that there are dozens of other grains out there which are more nutritious than wheat and which provide your ds with his RDA of grains. Don't worry. You won't be messing up your ds' system....you'll actually be helping it immensely.

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We did notice almost instant improvement just a day or two after my daughter's diagnosis (from the celiac panel blood test). She had symptoms very similar to your son's.

If you decide to have a formal diagnosis, he will need to eat gluten until the test. My daughter was diagnosed with a very positive blood test at age 3. We opted not to have the endoscopy done because her doctors were very confident diagnosing her based on the high positive and her amazing response to the diet.

There are some great books that have really helped me figure all of this out. My favorite ones are Kids with Celiac Disease : A Family Guide to Raising Happy, Healthy, Gluten-Free Children by Danna Korn and Living Gluten-free for Dummies by Danna Korn.

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Thank you so much everyone! This is a -wealth- of knowledge! I really hate to have to put him on a regular diet again. He is pleseant again this morning, rash looks better and he is not complaining for food.

I guess I will call his doctor today and hope maybe to get an appointment before we move and change insurance.

Thanks again everyone. Im so thrilled I found this forum!

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@Alaskaguy With regard to the timing, I think that everyone is a bit different! I used to have a shorter time to onset when I was first diagnosed (within 24h). As time has gone on, and I've glutened myself less and less, I have noticed that the time gets a bit longer.  Recent history seems to matter a bit too - if I've been glutened recently and then get glutened again, the rash will show up faster on the second round. For example, in the last 3 weeks I got slightly glutened by inadvertent
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