New To This- Need Advice

[Mushy1127]

Hi Everyone-

I am new to this group and new to food intolerance/allergies in general. I have been reading older posts but honestly there is too much information out there! I hoping to get some input from Those in The Know about my almost 2 year old son. I appreciate any input anyone has to give me. I apologize if this is VERY long.

I would like to preface this by saying I do not know if my son has a gluten intolerance, please don't assume he does just because I am posting here. No one in our entire family (DH included) has any food allergies or intolerances. And Leo is a very healthy happy child. He is not cranky, fussy, whiny, growth restricted, has no troubles sleeping, is compliant, warm, social, reasonable, and extremely intelligent. He has never been on antibiotics, have never really been SICK even.. except for reflux as an infant which he outgrew quickly. He did take Zantac for that, but a much lower dose than most of the babies I knew and was more or less "over it" buy the time he was sitting up and on table food. He was never fussy or unhappy with the reflux, he was stiff and vomited a LOT. A lot. A whole whole lot. But looking back, I am not sure I would put him on the medication if I could go back. It didn't stop him from vomiting and he was really a very happy baby.

Anyway from the very moment he started eating what my husband refers to as "people food" he began passing undigested food. It is also safe to say he has never had a "formed stool." He stool runs the gamut from sand- to vomit smelling and appearing- to foam- to peanut butter. He has an enormous appetite. He eats almost as much as my husband at meals and remains at about 28 pounds and 35 inches tall- which is fairly normal for a child his age. I have read what others posted as being an enourmous meal their child ate, and frankly Leo puts them all to shame. This morning he ate 2 eggs, an entire plum, 3 slices of cheese, and 2 packets of oatmeal for breakfast. An hour and a half later he was hungry and I gave him 6 pretzels. He ate an entire pot pie for lunch 45 minutes after that.

He is full of energy and always happy. But come naptime he crashes our for 3-5 hours, and will then go to sleep for 12-14 hours that night. Most people who know him explain away the sleeping and eating as "well look at him! He never stops moving." But it still seems strange to me. About an hour after he wakes up he starts to look like he's exhausted. We have a lot of diaper rash issues- welts, redness, burns, bleeding, etc. He also used to get red cheeks and chin from certain foods but that seems to be gone now. We've had some incidence of eczema but nothing some heavy cream couldn't handle.

I have started cutting foods out of his diet- milk, apples, pears, citrus fruits including tomatoes, etc. I wondering if I need to take a look at gluten too? In some ways he seems to be a classic case, but in others not at all. We took him to an allergist on Monday who did a blood test and referred us to a GI. Our appointment is on the 29th. The bloodwork will be back on Monday- I am not 100% sure what it was being tested for, but the allergist seemed pretty confident it would come back with dairy and citrus fruits. The rest he thinks is some sort of intolerance. Our pediatrician said Leo has "Toddler Diarrhea" I googled it and it does indeed sound alot of like him.

I should say that I am *VERY* hesitant to put Leo through any invasive testing. The blood test was really pushing it for me. I did not want scratch testing done, but would have gone that route if the doctor thought I twas necessary. I am not willing to consider any test that would require any anesthesia.

My questions are this:

1. Does it seem like my son may be gluten intolerance?

2. Anyone have any thoughts on Toddler Diarrhea?

3. What can I expect from the GI and how should I prepare?

4. Is there any connection between Gluten intolerance and IBS?

5. How about Reflux?

Thanks so much and extra thanks to those of you who made it this long! I really appreciate it!

Michele

[Ursa Major]

Hi Michele and welcome to these boards.

Toddler diarrhea just means that the doctor is too lazy or too ignorant to figure out what the problem is, and the same goes for IBS. Those are SYMPTOMS and should never be considered a diagnosis in themselves.

Your son sure sounds like he may be gluten intolerant, he has a lot of the symptoms (and no two people with celiac disease present with exactly the same assortment of symptoms).

Since he isn't really very ill yet, it is very likely that his celiac testing will come back negative, because those tests are extremely unreliable in young children.

Since you have had the tests done already, you might as well just try the gluten-free diet right now. The gluten-free diet is a perfectly healthy diet, so you won't deprive your son of anything he needs if you eliminate gluten. If he improves on the gluten-free diet, you will have your answer.

[feedmykids]

My son sound much like my DD. She was the happiest baby out of all our kids. She was very healthy with no sign of any food allergies or issues. THen at around 20 months she stared to loose weight fast. WE were in the middle of a move at the time so by the time I found a doctor she had lost 4 pounds. The doctor told me it was just stress from moving, whe she started to get sores all over her bottom, he said it was just a virus, when it didn't go away and the diahrea got worse he said maybe she had worms. I was just soo angry that he wasn't listening.

I went ahead and got the testing done and it showed positive. WE took her off of gluten immediatly. She improved right away and within a month gained back 2 pounds. WE did get her allergy tested because we have a family history of food allergies (no parents or relatives, just my own kids) She showed positive to 3 other foods we were giving her. She did even better.

WE did not do a scope because she was only 2 at the time and we didn't want her to go through that and we could see the diet working so there was no point. AS for allergy testing - we always do the scratch test and I can tell you that it wasn't as hard as ever getting blood drawn from my kids. It really only feels like a cat walking across your back, not comfortable, but it doesn't last long. My kids only whimper for a second (and they are pretty whiney kids) and then just complain about the itching.

It is worth it to find out how to help your child feel better. My other two kids vomited everything as babies and we could only keep them on certain formulas (not soy or milk) one DD has food allergies, My DS (only just turned 2) shows nothing yet, and hopefully he will stay that way!

[Mushy1127]

Hi Michele and welcome to these boards.

Toddler diarrhea just means that the doctor is too lazy or too ignorant to figure out what the problem is, and the same goes for IBS. Those are SYMPTOMS and should never be considered a diagnosis in themselves.

I love my pediatrician. I chose him because he is very hands off and "wait and see" about things. He hold back on jumping onto the reflux/allergies/antibiotics band wagon and lets his gut feelings and experience work for him. He has always been terrific with Leo and his various problems. I cannot complain for a moment about him, I feel truely blessed to have found such a terrific ped. We waited out the Toddler's Diarrhea but when it became clear it wasn't going away he immediatly suggested testing and so here we are.

My husband has IBS. He refuses to have any testing done. So once they ruled out Crohns and Colitis he decided he had IBS. He has a referral for a colonoscopy but won't have it done. His new plan is to wait and see how Leo's testing pans out and go from there. They have almsot the same symptoms for almost the same foods. I blame him.

Leo was tested for allergies not a gluten intolerance. It is my understanding that if I withhold gluten now it is a pretty good sign that he WON'T test positive later. Correct?

Would it be beneficial to do an elimination diet first? Or gluten free diet? I just don't know.

[Ursa Major]

Yes, if you put him on a gluten-free diet, he is guaranteed to test negative for celiac disease. So, I suggest you have him tested for celiac disease immediately, and then put him on the gluten-free diet right after.

But don't hold your breath, kids his age rarely test positive unless they are already very ill. The response to the gluten-free diet is the best test in young children.

I was saying that pediatricians who claim there is such a thing as toddler diarrhea are either lazy or ignorant. I guess your ped is just uninformed then. Of course, he was probably taught in medical school that there is such a thing as toddler diarrhea and IBS.

Toddler diarrhea should NEVER be considered a valid diagnosis! There is always a reason for diarrhea. Anybody who has more than two bouts of D a year (which is considered normal) has an underlying problem that needs to be figured out.

You are right, your husband probably has celiac disease, and your son inherited it from him. If adults have the same problem your son has, they will call it IBS, and in toddlers they call it toddler diarrhea.

Many on this forum were 'diagnosed' with IBS for years before getting the proper diagnosis of celiac disease or gluten intolerance.

[gfpaperdoll]

Since I cannot say anything nice about "Toddler Diarrhea" or "IBS" I will just say - yes to what Ursa said.

my usual saying is that there is also no such disease called vomiting.

I will say welcome & good for you for checking out the gluten intolerance/celiac problem that obviously your husband & son have. & I hope that you get both of them to the doctor to check their blood levels for vitamin & mineral deficiencies. Your husband is at increased risk for osteoporosis plus a host of other illnesses. (my son is not gluten-free but should be & at 37 has liver damage already...)

my 10 year old granddaughter has lost all the enamel on her teeth

my mother died of colon cancer...

& we are just gluten intolerant with the DQ1 genes - most of us double DQ1