Still Trying To Determine If 2yr Old Has Celiac Disease?

[sadiesmom]

Hello all,

My daughter is small and had very low weight gain from 9 months on. This fall the dr sent us to a ped GI who ran tests and did a biopsy. IgG was the only one elevated. The whole panel was done including the genetic markers. Which she does have one of the genetic markers. The biopsy was negative. In March the ped GI said he did not think it to be celiac. Sadie has no other signs just low weight. When the genetic marker came back positive and she still hadn't gained any weight - she was 19 lbs 13 ounces and had been for months as a two year old - he said to try a gluten-free diet.

To make a long story short, we tried - and I failed MANY times. I am so ashamed to say this but we did not stick with it well. She had several bouts of stomach flu and wasn't eating so I would be willing to give her anything - even a slice of Wonder bread just to get something down her.

So we only did the diet halfway (by that I mean that I didn't buy gluten- but if we were out - she had it - and I am sure there were unknown times she had it too). I was to get her weighed every two weeks. I did - and sometime she gained 8 ounces in one week. MOre than she'd gained in 2 months before. After the two weeks where I was WAY too lazy about the diet - the weight gain would be modest or nothing at all.

We saw the ped GI last week and he said there is no way that the gluten is the problem in regards to her weight. A tiny bit would have hurt her. So by not really going all the way with the diet - I could not have seen any results. He said I must have been making up for the loss of carbs with an increase in fats.

I am SO ashamed of myself for not doing the diet 100%. It was so hard when they kept telling me that they really didn't think it was celiac. So - she has not gained any weight at all in a month - and we have had a mostly unrestricted diet.

I kept thinking that her sudden weight gain just happened and maybe it would happen again and if she was on a gluten-free diet - I might think it was the diet and wrongly assume that she needed to be off gluten.

Does anyone have any thoughts on this? By the way - I still breastfeed her. She is 28 months and weighs 22 1/2 pounds. Developmentally she is on target or above.

I feel like a horrible mother for not doing 100% gluten-free and now I am confused and not sure why she gained the weight if what the dr said was true about it being impossible for the gluten reduction to have resulted in her weight gain.

Amy

[CarlaB]

Your doctor is right that gluten-lite is not enough to see if gluten-free would help. I would try the gluten-free diet, really gluten-free this time, and see what happens. Since you are still breastfeeding, you need to eat gluten-free, too.

Does your daughter have any other symptoms at all than the low weight?

IgG positive is not specific for celiac, so her results were really inconclusive.

[mama2two]

I am new here too, so I don't have that much info to offer, I just wanted to say not to beat yourself up for not following the diet, it is hard to follow especially with a little one. And the inconclusive results make it harder to have a real reason to follow it. I think for the ones who are dehydrated and suffering with diarrhea it makes it much easier to stick to it, because you are scared for their life, when we don't see much in the way of results and they outcome of not following it is not making them sick, it is harder to tell ourselves that we really need to follow it. We have somewhat the same situation with my daughter and we follow it as close as possible at home, I don't buy anything with gluten, but saturday we went to a party and she had cake while I was outside with my son. this sunday we are going to another party so I will bring gluten free cupcakes, I will bring extra so that she will not be the only one eating them, Pamela's has an awesome cake mix. Eating is a very social thing and I don't want her to feel left out, so if other kids want a gluten-free cupcake I know she will be glad to share, and they are very tasty. For me the easiest way to follow the diet has been to educate myself on what she can have, my husband too is gluten-free, but he doesn't follow it too well away from home and he pays for it with stomach trouble and diarrhea, you would think he would learn. I found that if I make a list of everything you can have and buid meals and snacks around that, it's easier to stick to. By the way it's been said that the gluten-free diet can reverse the signs of aging, and lots of people at work have given me comments about looking good, losing weight etc, although I have not lose any weight. Since you are still breastfeeding your daughter, it may be that she has celiac disease and that her symptoms are not very bad because your milk is healing her intestinal villi, so the gluten is not as damaging to her, when she is weaned she may develop more symptoms or have a positive biopsy. I am still nursing my almost two year old and I have thought of pumping milk for my daughter, to see if it would help her. She nursed for two and a half yrs and did not have any symptoms of celiac until 4yrs old. good luck to you and your little one.

[jerseyangel]

Please don't feel like a bad mom--you were doing the best you could with what you knew.

Celiac testing is pretty unreliable in young children, so I think your doctor's suggestion to try the gluten-free diet was a good one.

The thing is--giving her gluten here and there is like not being on the diet at all. The gluten-free diet is really an all or nothing thing. I would try again and try very hard to be as close to 100% gluten-free as you can.

Maybe have a loaf of gluten-free bread in the freezer to make her toast when nothing else is setting right. The frequent "stomach viruses" could very well be from gluten intolerance. I would give the diet 6 weeks, and see if she dosen't improve and put on some lasting weight.

A gluten-free diet dosen't have to be hard--fruits, veggies, meats, rice, and eggs are all naturally gluten-free. I would also stay away from dairy products for a while. Of course, since you're breastfeeding, you will need to be gluten-free as well.

Good luck, and let us know if you need anything.

[taweavmo3]

Well, by the book.....just going on the diet a "little bit" should not make a difference.

BUT, when we were trying to figure out what was going on with my daughter, we did a gluten lite trial for two weeks. I really didn't know what I was doing, I didn't do the homework to find out what gluten was in. We fed her alot of rice, but she was still getting gluten too. In those two weeks, I did notice a change in her. She did gain some weight, not a huge amount, but some. That's when I figured we were on to something, and pursued a diagnosis. Once we got on the diet 100%, we saw HUGE changes. She was a completely different child. Now, I have three more children on the diet, without positive tests. After learning how unreliable the tests are, and after seeing how sick my daughter had to be in order to get a + dx.....I think dietary response is the only gold standard you can trust.

Don't beat yourself up at all, it's a difficult diet in the beginning, especially when you are out. But it gets easier with time, and becomes worth all the work as soon as you see your child get better. I would start the diet 100% as soon as you can, and see how your child responds. That will be your answer.

[Nic]

And one of the best things about starting this diet so young is that as they get older, the diet becomes second hand and they don't ask for gluten foods. My son started the diet at 4 years and he is now 6. He just accepts the diet now for what it is with no questions. As a matter of fact, he questions me with , "is this gluten free?" when I give him something new . Dairy was a little harder for him to give up, while he had always been a big carb eater, he drank milk all day long. But he has adjusted well and if gluten turns out to be your daughters problem, she will adjust well too as she will never remember not eating this way.

Nicole

[mdsuzetta]

Isn't it true that breastfed babies often have a delayed onset of celiac. I breasfed my daughter almost exclusively until she was 2(because of the MANY reactions she had to food). When I stopped breastfeeding at 2.5 things got really bad...My daughter had the blood test for celiac and it came up negative. We are in the process of getting the endoscopy anyways. I have found through trial and error that even gaurunteed gluten free grains cooked in a pot where gluten once was causes her incredible discomfort, extreme irritablity, almost insomnia regardless of the sleep deprivation and extreme constipation.

I have had no cooperation/support from western med doctors. I am learning to be very assertive! I would try the total gluten free..it was only a couple of days of pure torture for us. Bobs red mill online has a great selection of food. I also talk to my daughter about the reasons for the change, as long as she isn't in her gluten infected mode, she seems to understand and is very cooperative.

I feel for you, it is unreal-so, so difficult and lonely to deal with.

susannah hansen

Hello all,

My daughter is small and had very low weight gain from 9 months on. This fall the dr sent us to a ped GI who ran tests and did a biopsy. IgG was the only one elevated. The whole panel was done including the genetic markers. Which she does have one of the genetic markers. The biopsy was negative. In March the ped GI said he did not think it to be celiac. Sadie has no other signs just low weight. When the genetic marker came back positive and she still hadn't gained any weight - she was 19 lbs 13 ounces and had been for months as a two year old - he said to try a gluten-free diet.

To make a long story short, we tried - and I failed MANY times. I am so ashamed to say this but we did not stick with it well. She had several bouts of stomach flu and wasn't eating so I would be willing to give her anything - even a slice of Wonder bread just to get something down her.

So we only did the diet halfway (by that I mean that I didn't buy gluten- but if we were out - she had it - and I am sure there were unknown times she had it too). I was to get her weighed every two weeks. I did - and sometime she gained 8 ounces in one week. MOre than she'd gained in 2 months before. After the two weeks where I was WAY too lazy about the diet - the weight gain would be modest or nothing at all.

We saw the ped GI last week and he said there is no way that the gluten is the problem in regards to her weight. A tiny bit would have hurt her. So by not really going all the way with the diet - I could not have seen any results. He said I must have been making up for the loss of carbs with an increase in fats.

I am SO ashamed of myself for not doing the diet 100%. It was so hard when they kept telling me that they really didn't think it was celiac. So - she has not gained any weight at all in a month - and we have had a mostly unrestricted diet.

I kept thinking that her sudden weight gain just happened and maybe it would happen again and if she was on a gluten-free diet - I might think it was the diet and wrongly assume that she needed to be off gluten.

Does anyone have any thoughts on this? By the way - I still breastfeed her. She is 28 months and weighs 22 1/2 pounds. Developmentally she is on target or above.

I feel like a horrible mother for not doing 100% gluten-free and now I am confused and not sure why she gained the weight if what the dr said was true about it being impossible for the gluten reduction to have resulted in her weight gain.

Amy

[gf at last]

Hi!

Hope things are going well. It is hard to change your food buying and preparation habits, but it can really help. I think it is really worthwhile to make a commitment, just do the best you can, keep trying, and know that mistakes are inevitable, but just keep trying, for even several months. Write down a log, for a week or so, of symptoms, and then after a few weeks, and after a few months, repeat, and see if things have improved.

We had a very similar situation. We nursed for an extended amount of time, and he became less willing to eat foods. The "bloodwork for celiac", when he was 1 or1 1/ 2 years, came back negative. I didn't get a copy of the results and didn't ask, so I'm not sure what was actually run at that time. He was tested for cf and some other things, all thankfully negative, but still not much guidance. We were counselled by the ped gi to avoid the top 8 allergens, which we did. Although things were somewhat better , still numerous problems, frequent diarrhea every day, fussy, not active, numerous ear, nose, throat problems, etc., etc., etc. He wasn't able to go to kindergarten due to still numerous episodes of urgent bathroom problems. I was really unsure what to do. Even some family members thought the restrictive diet was crazy, and that if we just let him eat regular food, he'd be fine. It was a lot of work, and things weren't good. Thankfully, eventually our family practice doctor (who we were seeing constantly, for ears, sinus infections, bronchitis, skin rashes, diarrhea, viruses, bacterial infections, dehydration, and on and on) attended a continuing education program on celiac. He sent us there. Bloodwork was again negative, but he encouraged us to have the biopsy anyway. We were desperate. He was prescription reflux medicine, since practically birth, plus allergy and asthma medicines. We were always at the doctors' office. He wasn't "outgrowing" any of these problems. Speech therapy since 1 year old. He had previous biopsies, but as things were "visually" ok structurally, they hadn't taken any biopsies, even though I requested it since we were in there anyway. Path report came back with lots of damage, consistent with celiac disease. We went to the nutritionist the same day. Although we had been on a very restrictive diet, with no wheat, dairy, soy, tree nuts, peanuts, fish, citrus, we hadn't been avoiding "gluten" per se. The rice milk we were purchasing (Rice Dream) has tiny amounts of gluten, and we were using oreo- like cookies that were wheat free, dairy free, but made out of barley! The nutritionist went over the changes we needed to make. Those were the two major issues. Also, I had thought (wrongly) that simply removing a meat patty from a wheat bun was sufficient, as long as he didn't eat the bun.

I replaced wooden utensils, like mixing spoons. We purchased some new cookbooks, and started going through the recipes. We continued to make mistakes, but they become fewer and far between. I met with the school system nutritionist several times, and we kept in close touch during the year. Also the kitchen staff at his school, and servers. He ate school lunch. His lunch didn't have as much variety, but still he had more than 5 different menus. We supplied his snack box, for morning snacks when the other kids had graham crackers, and also for birthday treats. The school supplied the safe rice milk

Anyhow, the first year he gained over 10 pounds,! And this was a kid who never, ever had a "normal" diet. He is still a thin child, but way more active, taller, completed kindergarten this year, played baseball, finally graduated from speech therapy after years there! His sleeping is so improved, he used to suffer from muscle pain, which would wake him up at night. His whole body would twitch and jump during sleep. He had behavioral issues. He was tired and cranky. He didn't sleep well. We hadn't slept well in years, either. We have had so much improvement. We still sometimes make a mistake here and there. We really need to keep vigilant in taking safe foods along with us to his older brothers sports events, as desperation can make you try things you really probably shouldn't.

We've attended an area support group a few times, which has been really helpful. It conflicts with my work schedule, so we haven't attended as much as I would like. There are no kids, which was disappointing for my son. Hopefully, one of these years we can get him to a neighboring state which has a ROCK summer camp for kids.

So, although gluten-light for several years helped, it wasn't until we really made the commitment to be gluten free, or as very close to it as possible, that we saw the most fantastic results.

Hang in there. It is hard when you don't have a doctor to help, and family members and friends think the diet is wacky, and you aren't really sure if it is the problem, and the testing seems so unreliable.

Good luck!

[EmmaQ]

You stated she is IgG positive and a gene marker positive. Was she IgA deficient or IgA total serum lower than "normal", but not exactly deficient? If there is not enough IgA total serum the other tests will come back negative. DId they do the new IgG TTG test?

Just remember that the biopsy is only 33% effective in catching Celiac Disease in absence of Total Villi Atrophy!!! So, just b/c it is negative, does not mean a gluten-free diet would not aid her in feeling well.

At the age of 2, the tests are even more inaccurate than in an older child or adult as well. It really stinks, trust me.

Try the diet again, strictly and see if weight comes on. My ds put on 6 lbs in 3 months, I was thrilled, he was very low on the weight charts, he also gained 3Inches in height. He was 3 1/2 and he does not even want gluten foods, we taught him well. I realy liked Danna Korn's book Kids with Celiac Disease.

[sadiesmom]

Thank you all so much for the responses. I really have felt so bad about all of this. You always want to do what is best for your child, you know? it is just so hard when you don't know what that is. I had actually heard as welll that the breastfeeding could be minimizing teh damage that is being done - if indeed she does have a problem with gluten. And I am pretty much for child led weaning - so she'll probably wean here within the next year.

I think I will take your suggestions and really do the gluten-free diet and see what happens. She did tell me she had a tummy ache last night - and I swear that kids stool goes from loose and runny to massive size and shaped clumps that I am in amazement could have come from that little body. I guess I always think "oh she doesn't have any othe symptoms." but it might be interesting to see if there are any changes with teh gluten-free diet. Myabe she has had symptoms - that I really have just thought to be normal for her.

I really appreciate the stories about going gluten "lite". I knew that really in theory it would not matter - but I wondered if in practice anyone ever noticed anything. Your posts have really helped me alot!

Thank you!

Amy