Biopsy Says No But Can He Still Be Coeliac

[Guest Angi]

My 28 month son is a typical coeliac. He is below teh third percentile in weight and now below the 10th in height. While he was exclisivly breastfed he was on the 50th percentile. He has has the TTG tests, feacal fat tests and also a biopsy. All say he is not coeliac. Bu I think he is. He has pale bulky poos. Low iron and protein bloods and also low white cell count and high urea/creatatine levels. Small buttocks, large stomach. He does not seem to have the energy that kids his age have. Is it possible that he could be? Or do you think he may be just wheat intolerant. He dropped to the 3rd percentile within a month of starting solids. I don't know what to do anymore. Doctors say feed him junk and what he wants to eat. He is such a fussy eater as it is I don't want him eating crap. He does not seem to be in any pain.

What do you think?

[Worriedtodeath]

Im in the same boat! Except mine is 22 months and we've been dealing with this since she was 12 months and we still have no definite dx. We do have a mild lactase deficiency but not enough to cause all of her problems. After the biopsy we on our own without any medical support or agreement removed all gluten. she dropped from many bms a day to one or two within the week. Then the lactase test came back with a mild deficiency and they said put her back on wheat and take out the dairy. That lasted 5 days and she was much worse than the week before when she was gluten free. We then went back to gluten free/dairy free.

I really don't know if she has a problem just with wheat or one with all gluten. Given how we react to cc and have 2 siblings and myself that are doing far better gluten free, I'll err on the side of caution.

It's been a full 3 months gluten free ( I thought longer but we started Jan 23) She has had the greatest height and weight gain in over a year equaling out to be something like 4 lbs and 2.5 inches.

Our ped says the proof is in the pudding. We don't know why the Celiac diet works but it's working and working well. Maybe it's missed Celiac, maybe it was caught way early before any real damage was done, maybe it's the whole genetically modified debate, or maybe something entirely different that is yet undiscovered (my husband is betting on chemicals in the wheat)....who knows!

It can't hurt to do the diet. Yea you will get a lot of flack but if he improves, then you will know.

Stacie

Oh and two of mine were horrible picky eaters! Just horrible. They now eat everything. And I mean everything. They scarf food constantly. I think their tummies no longer hurt.

[Fiddle-Faddle]

Of course he could still be coeliac.

Damage to the villi--which is the criteria for diagnosis--is not instantaneous. It takes time to develop. And testing is notoriously high in false negatives for children.

You could feed him gluten until he DOES develop damage, and only then admit that gluten might be a problem. And in the meantime, he is at more and more risk for more severe autoimmune issues.

Have you tried a gluten-free diet yet? If so, did he have a good response? Or are you waiting for official permission from a doctor before trying a gluten-free diet?

If you try the diet, and he has absolutely no response to it, then you might need to keep looking for answers. If his growth picks up, and he loses that typical celiac look, then you've got your answer.

In the meantime, I'd delay vaccines until this is resolved, and even then, only let him have ONE at a time. You might do some research on vaccines if you haven't (www.nvic.org is a good place to start). Coeliacs have a very high concurrance of severe vaccine reactions.

Best of luck.

[holiday16]

With our son the only test that came back positive was the genetic test. He's had the blood test and scope both of which were negative. Based on the fact that I react so strongly to gluten and his positive genetic test he's on a 3 month gluten free trial right now and we're supposed to challenge after 3 months. We can already tell a big difference. He has more energy after just a couple weeks gluten-free and his chronic constipation is getting better. I'm very grateful that the GI Dr. we're seeing went this route. I would have done it anyway, but my son also has a heart condition so it's easier doing this under guidance for a few reasons. He did have low iron stores years ago which we gave him a supplement for, but that's not uncommon for heart kids so we didn't think too much of it. Sort of ironic that we had to discontinue it because it contains gluten, but hopefully with the diet it will go back to normal.

We have 4 of us on the diet at this point. I was diagnosed via Enterolab as was my oldest daughter. Both our blood tests were negative. My youngest started feeling better after I began cooking gluten-free for me so that's how we found hers. She tested it once and within 24 hours was doubled over in pain. She's never had any blood tests and the reaction was strong enough that no one has ever suggested it. If we had gone only by traditional tests without considering the symptoms we would all still be having problems.

So, yes even if you have negative results there can still be a problem!

[Guest Angi]

Wow thanks for the replies. I know he has it. People think I am neurotic but I just know everything isn't right. I am going to go at least wheat free for a couple of months. I know this sounds bad but he is just such a picky eater. he eats no fruit and veg and I just don't know what the hell he will eat. I will not have any wheat in the house. Our whole family will go wheat free cause he is just such a wheat fiend it would be cruel to be anything else. Someone tell me it is not as hard as it sounds. He does so much socializing and every kid seems to be eating when they are socializing. Why does everything social revolve around food? Why can't it revolve around excercise and play?

WorriedtodeathI am absolutley hoping that somehow he will miraculously start eating fruit and veg when we do this.

By the way how do you get the gene test?

[Fiddle-Faddle]

My picky eater will eat raw carrots and raw sweet red pepper strips if I give him something to dip them in, like ranch dressing. (We told our oldest that ranch dressing was white ketchup when he was 2, and he thought that was just fine!) Sometimes they will even dip carrot sticks into ketchup (yuck)!

We also had good luck with frozen peas-and-carrots, nuked for 4 minutes with NO water, just a pat or 2 of unsalted butter and a bit of salt, pepper, and a pinch of sugar (not good if you have candida issues).

Green beans are good --boil for no more than 4 minutes with a spoonful of chopped garlic, drain, and toss with tamari, sesame oil, and again, a pinch of sugar. You can do the same thing with broccoli (call them "broccoli treets" or "broccoli flowers"--good marketing always helps), or just steam in the microwave for 4 minutes. They can dip in more tamari. Dips are essential!

You could try filling an ice cube tray with with different tiny portions of fresh fruits and vegies, maybe with the cubes on one end filled with different dips for him to try and rate. Make sure you putit to him in a positive way: "Which ones are your favorites? Which ones have the prettiest colors?" etc.

The rice pastas are an easy switch-out. You don't even have to tell him that they are different--he'll never know.

Try Asian rice crackers (read the label, some have wheat) --most kids love those.

Good luck!

[gfgypsyqueen]

I knew my youngest was in trouble before she was 1 yr old. By her second birthday I finally forced the Drs to test her. She started at the 75th to 90th percentages when she was a baby and when she got food the percentages started dropping. By the time she got tested she was at 3 percent for weight and 7 percent for height and the Dr still said she was fine, just petite!!!! The biopsy was inconclusive, but she has the gene for Celiac. So we went dairy free and saw small improvement. (She was always intolerant of dairy.) Then against the Drs wishes I made her 100% gluten-free/CF. Waalaa I have a new kid. She is growing, she sleeps, she isn't starving, her moods are so much better! She seems to have DH, but I have not had that tested yet. Her percentages are around the 50th now and she has been gluten-free/CF les than a year! She grew through three sizes since going gluten-free/CF! I am thrilled.

None of her Drs thought she had Celiacs. I have it and it runs in my family. All of her Drs tried to talk me out of it and question whether I really had celiac disease. (I have a positive biopsy.) So in the end, her pediatrician agrees that the diet makes a world of difference in her and keep with it.

I would try the gluten-free/CF diet with your son for a few months. See what happens. Keep a diary about his eating, sleeping, growth, weight, potty, moods, speech, attention, etc. For mine, the changes that were not expected were the ones that have become the most important. (Moods, attention, laughter, no more clingyness, sleeps through the night, eats at meal times and gets full!)

As for social things...it is hard sometimes and it makes the kids sad when their friends don't always get it. But for my kids, we bring dessert to share, we brign food and snacks that are safe, and this diet is just a fact of life. Some people have blue eyes, some people have brown, for most people wheat is fine, for some reason our bodies consider it poison. I explain it to parents and little kids as "She has some food allergies and can't eat everything you can, so we bring safe foods." Most of the kids are fine with that. Or bring something really good for the kids to try. Some parents will ask questions and some will not care or remember no matter how many times you explain it.

The diet is not that hard. At first it seems beyong overwhelming, but it gets easier pretty quickly. Start with naturally gluten-free foods. Fresh fruits and veggies, plain unprocessed meats, and packaged foods that are gluten-free and others have recommended. (Van's waffles and Kinikinnik chocolate donuts) You can still eat out too. Go to restaurants with gluten-free menus or just order plain burger or plain cheeseburger with fruit is usually safe. I bring supplemental food into restaurants too. So order the drink and the meat and bring the rest from home.Just be discreet and they usually don't care. Keep in mind it is against the law to bring food into a restaurant in some states.

Hope your little one feels better soon!

[missy'smom]

Make sure you ask about the results. I know a woman who had her son biopsied and the Dr. came back and said "It's negative" "he doesn't have it" and happened to say"only one of the samples showed damage". Well she knew better, that if "only one" showed damage, that meant that he DID have celiac disease and it was POSITIVE.

[Guest Angi]

thanks, I am hoping I won't have to much trouble. We don't really eat to much processed food anyway but I dind't realize gluten was in everything. I mean soy sauce!!!!. I am in Australia and I think our eating habbits are a bit different here. Most of the things you talk about on here I have never even heard of. The city I live in actually has the highest amount of coeliacs in the Southern Hermisphere. We are only a small place (pop 110,000). It is funny becuase we grow a lot of wheat and produce around here. It makes you wonder if it is something to do with the sprays and things. there is a gluten free shop in Brisbane about 1 1/2 hours away.

Fiddle/Faddle: Thanks for the tips and I wish that would work for me. Believe me when I had Jeremy (firstborn) I gave him only fruit and veg no proccessed foods and I had such opinions on how to feed kids. He used to eat everything while it was a puree and one day he just stopped. I have tried everything possible to get him to eat healthy and now of course he is two and just wont' try anything new at all. He is happy to strave if it meant he had to try something new. I keep persisting but there is nothing. I am hoping it will change once we go gluten free.

How long do you think it will take to see a differnce? He is now below the third percentile and the Drs still say he is not coeliac. I am sure I will prove them wrong and look forward to seeing them do a double take.

ang

[Fiddle-Faddle]

I love the name Jeremy!

The dips seem to help because then the kid is feeding himself--and deciding what to dip, and in what, and it makes him feel very grown-up and in-charge.

My picky eater (#2 out of 3) would only eat bananas if I cut them into circles and sprinkled them with cinnamon sugar. Eventually, I started making my own cinnamon sugar instead of buying the prepared version, and I used more and more cinnamon and less and less sugar.

When they were 3, we started the 1-bite rule--they had to have one bite before leaving the table. It was a rule--no arguing permitted. They didn't have to like it, just eat one bite, and they were allowed to dip it or mix it with anything they liked. And I never made disgusting things, like liver or Brussels Sprouts.

Now they're bigger, it's now the 3-bite rule.

I don't know if you've read about it yet, but there is an addictive aspect to wheat, especially towards gluten-sensitive people. It causes an opioid response in the brain, so that could very likely be why he doesn't want anything else.

Hang in there, I'm sure you'll get to the bottom of this one way or another!

[Guest Angi]

Far out, it just makes so much sense. I said just not long ago as Jeremy tucked into 4 pieces of bread and avocado that it was justlike he was addicted to wheat. My natrupath says that nobody should eat wheat "wheat is for the chooks" he says. I am getting a quarter of beef delivered next week and will shop for some wheat free products. I have set the date as next Thursday. Yep it is daunting not from my aspect but we just went to see his great grandfather and he gives him lollies and sweat bikkies. It is his little treat. I will have to reeducate everybody. They all say the same thing "oh a little bit won't hurt" and they just don't listen to you. I am really quite excited. I've tried the dipping thing. I've tried everything you could ever think of. But I am sure it will change when he goes gluten free. Looking forward to it. What do you find is the best flour to use for cooking?