Taking Eli Back To The Gastro.

[imsohungry]

Hey everyone,

My two year old, Eli, is going back to the Gastro. He went as a small baby (about 10 months) and tested negative for celiac, but the dr. told me it is often inaccurate in babies (which I knew) and to bring him back at a minimum of every two years for testing.

At this point, I just want to know what is wrong! He is so very thin. And shortly after he eats, he ALWAYS has diahrea (sp?). He bruises very easily and is pale.

I worry that he is not absorbing the nutrients he needs from his food; How could he get what he needs?...he poops within 5-60 minutes of every meal or snack (he usually has between one and five "runny" poops a day). It is not uncommon for his BM's to go out of his pants and up his back/all over the sofa, etc. Potty training right now is impossible.

He is also in the process of allergy testing at his allergist. He is not allergic to milk (found out last week). I am obviously glad about that. We have more tests to do this week.

He hates to eat now (you can see his little ribs). I am just ready to find out what the heck is wrong with my baby boy! Please send us prayers and good thoughts.

-Julie

[Worriedtodeath]

How long has he been on gluten? Has he ever gone off of gluten?

This sounds so much like my baby. All of her testing came out negative but we did the diet and within the week the runny poop stopped. Within the month, she started gaining weight. Now after 4 months, she has grown and gained weight. Her gi dr wanted us to continue to feed her gluten for another year and then return for another round of testing. We decided to do the diet without dr apporval. The turn around has been unbelivable.

Sometimes , you have to go against their opinion and do what makes sense. If he's been on gluten all this time then get the blood work done. But positive or negative do the diet. IF everything resolves, then you have your answer whether the test ever agrees with it or not.

Stacie

[ShayFL]

If it were me and I was watching my baby waste away, then I would try the diet. It will not hurt and could help. Wheat is not what we need for good nutrition anyway. There are so many healthy foods. Meats, veggies and fruits. My daughter loves veggies when most of her friends wont touch them. She got them from the get go. Start em young and they will love healthy foods.

Wishing you all the best and hope he gets better soon.

[jerseyangel]

Julie,

I will keep you and little Eli in my thoughts and prayers. Please keep us posted as to how he does.

Are you planning on making him gluten-free regardless after the testing?

[Ursa Major]

Eli sounds just like my granddaughter Zoey. From the time she started solids until my daughter took her off gluten and all dairy, she NEVER had a normal poop. It was always blow out diarrhea five or six times a day, going everywhere, just like Eli.

Within a couple of days off gluten at the age of 15 months, she had her first normal, solid bowel movement ever. And she gained weight and had so much more energy!

In reality, the blood tests are notoriously unreliable in children under six years old, and not a whole lot better after that. A negative test can NEVER rule out celiac disease. And that goes for the biopsy, too.

So, there is no guarantee that Eli's test will turn up positive this time, either. But it sounds like he needs to be off gluten immediately, and should have been off it at ten months.

And just because he didn't test allergic to milk, doesn't mean he isn't intolerant to it. Allergy testing will not rule out intolerances, especially if there is a delayed reaction.

The best person to test for intolerances is a naturopathic doctor, not an allergist.

I would do the blood test for Eli, and then immediately put him on the gluten-free diet. And in my opinion, he should be off all dairy and soy as well, at least for the first few months on the gluten-free diet, to allow him to heal.

If you wait to take him off gluten until he finally tests positive, his growth and brain development could both suffer. Not to mention having severe nutritional deficiencies and the pain he must be feeling. For a child that age to hate eating means that it causes him pain. He is just not able to tell you yet what the problem is.

[imsohungry]

I hadn't even considered taking him off gluten yet. The medical community is so critical about "over mothering" or being a hypochondriac if you try to take action yourself.

Some of you do a lot of research, maybe you could help me. Orange juice goes through Eli within five minutes...the results are dramatic. Yet he can eat peaches and have just his regular diarrhea. I wonder why?

I hadn't even thought of a dairy intolerance; I always assumed it was an allergy (he has been unable to tolerate dairy since a baby). When he was able to eat yogurt (with only his usual BM issues), we just assumed he had grown out of his milk digestion problems.

I want to cry. It is 7:00 pm and Eli has only eaten three tater tots, and a cup of yogurt. I just wish I could do something. But three pediatricians have told me his picky eating is normal for a toddler, and as long as he is eating, I shouldn't worry. But don't toddlers usually eat SOMETHING substantial every day? Shouldn't he eat enough to make a meal every day? I would love for him to simply "be picky." At least I can cater to picky...

About once a week he has a good "eating" day...

Perhaps I should take him off gluten if this test comes back negative again. It can't hurt to try. He is such a happy child. I don't want him to go through what I went through.

Thank you for the advice. Is there anything else you can think of that I should/could do?

hugs. -Julie

[Rachel--24]

Some of you do a lot of research, maybe you could help me. Orange juice goes through Eli within five minutes...the results are dramatic. Yet he can eat peaches and have just his regular diarrhea. I wonder why?

Is it any brand of orange juice that causes this reaction? Is he ok with apple juice? Orange juice is very acidic but some kids also are very sensitive to phenols and can get this type of reaction from orange juice because the phenol content is high.

Are there any foods that he seems to crave?

I would definately try the gluten-free diet regardless of test results. I would also eliminate dairy since he's had problems with it in the past.

I think some foods are probably causing him problems....I think its a really good idea to eliminate gluten first...see what happens...and then go from there.

[jerseyangel]

Julie,

In your case here, I wouldn't consider it "overmothering" at all--if he were my baby, I would immediately take him off gluten and dairy after the testing.

I agree that it's more likely a dairy intolerance than an allergy anyway--the best way to figure out an intolerance is by elimination.

Orange juice is pretty acidic, and his poor gut is already irritated so that's probably why the juice goes right through him--citrus is also a pretty common intolerance (I'm intolerant to it).

As for the medical community--so many times they want us to keep eating gluten just so they can obtain a "positive" test result. I'm not against testing at all, but I also hate to see anyone, especially a child, keep eating something that is damaging to them.

[home-based-mom]

Poor Baby!

No matter what the doctor says, something is definitely not right. But mother's intuition usually is!

I would take him off of gluten and dairy, too. As Ursa so often says, you don't need their permission to do that. My guess is that Eli will improve a lot in a very short time. Toddlers can indeed be picky but they don't hate to eat unless there is something very wrong.

Someone posted here that their child would have D while still eating a cracker, before the cracker was finished - it went through that fast. The doctor said that was not possible. I told that to someone at church who suggested the doctor hold the child on his/her lap while the child eats the cracker!

If your doctor gives you any flak you can always try that!

[Worriedtodeath]

The gi isn't going to tell you to take him off of gluten without a positive biopsy and blood unless your baby is in the hospital dying. Hate to be dramatic but I've been there. My child couldn't speak, did nothing but scream and went from bad to worse. The gi even said he had never seen someone get so sick on a gluten challenge so quick but still refused to back us in a gluten free diet. We couldn't leave the gi center without an appointment with our ped the next week because the gi was worried about her going a WEEK without seeing a dr. SHe was that sick. My mother instinct kicked in and I took her home and off of gluten to see her bms drop to one a day within the week. I cancelled the ped appointment while the gi was an idiot who told us to put her back on gluten and off of dairy since the biospy was negative and the lactase was low. My hubby insisited on that for 5 days until she dropped another 8 ozs and was back up to 5 or 6 bms a day. I was between a rock and a hard place. Continue feeding the baby according to the drs and watch her get worse or go "off the grid" and try my own experiment. God knows they had made her one big experiment all ready. The diet can't hurt. All it can do it is help.

He is in pain and he is refusing to eat because it hurts. NO that type of eating is not normal and that is not typical toddler behaviour. You are not overreacting. Taking him off of all gluten- obvious and hidden. GO to a strict cooked by you and you alone veggie diet with a little fruit - apples/bananas- and plain meat for two months. Nothing processed, nothing prepared by anyone but you. Throw out all the old pans, get new can openers, chunk anything that could hold onto gluten like wooden spoons, cutting boards, toasters, etc. I even went as far as if it didn't say gluten free and wasn't from the produce stand we didn't eat it. The problem was I had 2 months (the next ped appointment) to have a dramatic improvement or things were going to get nasty around here (since the baby had been checked for everything then mom and dad must be doing something wrong )

First week we were down to one or two bms a day. The liquid all over the place run down your legs puddle on the floor stopped. It took about 3 months for them to become solid and normal but they were no longer liquid. Various ranges of mush and some firmness but it did take 3 months before we were noticing normal stuff down there. By the first month, she was at least trying to eat. By 2 months, she was walking around with her box of gluten free cereal and put it down to eat lunch and dinner and snacks. We gained a pound or so and 1.5 in height after no growth for the better part of year. We are now in month 5 and our daughter is incredible. She has a fat face though her weight will never catch up. She is back up on the growth chart and is at least moving up. She is sweet, adorable, is now talking in SENTENCES when she couldn't speak in Jan. The gi thinks we are idiots for being gluten free while the ped openly admits that only because I stepped in and took charge did our daughter get better instead of having "problematic" outcome.

THe point of all of that is the drs don't know everything and can only tell you and ADVISE you according to the test results. YOU have to decided to follow that or work on another path. Everything in the medical books tells us my kid is fine other than some unexplained low vitamin d, vitamin k, low igg's levels, low bone density, severe malnutrition and chronic diaherra. No one can tell my why she has all of that but gluten free is the only thing that is working to reverse all that.

All you can do is pray and follow your gut. God gave you that instinct and don't be so quick to dismiss it just because the dr can't prove it right.

[imsohungry]

Thank you Rachel, Patti, Sandi, and Worriedtodeath (sorry I'm not sure of your name).

Patti, I didn't know citrus was a common intolerance. As soon as I realized it was OJ giving Eli the tummy trouble in the morning, I stopped giving it to him. You made a good point about the acids too.

Rachel, he does seem to be fine with apple juice. I am unsure of what phenol is...I'll have to google it.

Sandi, doesn't Ursa always have useful input? I love when she responds to my posts. I completely agree with you...if I could time Eli's poops, I would have him go right there on the doctors table.

WTD,

Your post touched my heart. It must have been hell for you, as a mommy, to watch your baby suffer like that. I am so hoping to find what is causing Eli's problems soon. God Bless you and your family.

I had another thought last night: I have Sjogren's (dry mouth and eyes) secondary to Lupus. I wonder if Eli has a severely dry mouth (he is always thirsty)...maybe he spits his food out because there is not enough saliva???

Maybe I'm grasping at straws? Maybe he needs to see a pediatric rheumatologist? God, I don't know.

Thank you all. -Julie

[purple]

You could take him to a good alternative health care provider. Ours is an osteopath. Our first visit was 1 hour. He was really good, wanting to know everthing.