New - 16Month Just Diagnosed

[raeskids]

Hi everyone.

I am new to the boards, but wanted to introduce myself and my story. I'm Rachel and that's my little Samuel in the picture -- he has just been diagnosed as Celiac. We've spent 7 days in the hospital, and that includes one day where he had an endoscopy and biopsy which showed damage consistent with Celiac Disease. He's tested positive in all labs, including the genetic screening.

Right now, I'm dealing with severe malabsorption issues and am looking for help. Prior to getting diagnosed he was getting extremely ill. Doctors kept dismissing him until finally a different pediatrician told me to go right to the Childrens Hospital and get in the system. Even there, it took some convincing. However, we have come to a diagnosis -- even though there is still other labwork that is flagged. But because of the delay in diagnosis his system got weaker and weaker.

Back to nutrients. What can I do to help him? From the endoscopy samples he is absorbing hardly anything. He's depleted in all vitamins -- including vitaminD, zinc, and iron. What did you find to help a child this little who is not absorbing well at all? He's got little to no energy. He sleeps a great deal of the day. He's also extremely pale.

He's lost quite a bit of weight, and his GI doctor wants him to gain. I'm just unsure how to accomplish this with small intestines and duodonem that is damaged.

I look forward to hearing from you, and am so grateful for these boards.

[salexander421]

Have you started on a gluten free diet yet? Once on a 100% gluten free diet his body will start to heal and hopefully be on it's way to absorbing nutrients again. Is he taking any vitamins? You'll want to make sure it's gluten free also.

I don't have a lot of advice since my girls are still in the testing process. Hope others will chime in soon!

[T.H.]

What can I do to help him? From the endoscopy samples he is absorbing hardly anything. He's depleted in all vitamins -- including vitaminD, zinc, and iron. What did you find to help a child this little who is not absorbing well at all? He's got little to no energy. He sleeps a great deal of the day. He's also extremely pale.

He's lost quite a bit of weight, and his GI doctor wants him to gain.

Okay, here's what I'd do:

1) I'd keep him off of dairy, right away. The tips of the villi are where lactase to digest lactose is produced, so if their is intestinal damage, most celiacs are lactose intolerant until they heal. I was told by my GI that it can also slow the healing if he eats dairy while intolerant to it. If your doctors took some convincing to look at celiac disease, I would bet they aren't celiac experts, so they may not have mentioned this. And the other reason I mention this is that a lot of formulas and drinks for weight gain in infants and small children include dairy. :-(

2) I'd stay away from gluten free oats for a while. A small percentage of celiacs react to all oats, even gluten free ones, as though they were wheat, rye or barley. Since your little needs to gain weight quick, I'd just stay away from these as a precaution.

3) I would keep a food log, where you record down what your little one is eating (and what brand name), at what time, and any reactions throughout the day. These can be physical, emotional, mental - anything that deviates from the norm, jot it down. Yes, you're going to get some 'needs a nap' and 'bad day' stuff, too, but if a pattern is emerging of a tantrum every time he has X brand of soup, you'll catch it. Many celiacs end up having other allergies or intolerances that show up after going gluten free, so you are honestly looking for anything that starts making a pattern. Since he's so young, hopefully it'll just be gluten, though.

4) Good thing to remember: Gluten free does not mean 'zero gluten.' It is a legal term, where gluten free defines how much gluten a product can have. Some gluten free products choose to keep their product to even lower limits of gluten than required. The reason I mention this is because it's good to pay attention to how much of the 'processed' gluten-free food the little guy is getting a day. Just like too many low calorie foods can add up to excessive calories, too much 'really low gluten' products can add up to too excessive gluten, at least for a celiac. For this reason, a lot of people on the diet drop the processed foods at first and go for whole foods: meats, veggies, fruits, whole grains, nuts and legumes. (although watch out for plain nuts and legumes. They often have a 'made in a facility that processes wheat' warning on the label)

5) Keep an eye on xanthan gum - it's in most gluten-free baked goods, and some people have an intolerance to it.

6)For foods that might help? I'd go for meats that are higher in fat, carbs like sweet potato and potato, and whole grains if his tummy will take them. Carbs are usually better for gaining weight - hence the reason so many dieters have to give them up. Nuts are very good for calorie-heavy food sources, too, as long as you find safe ones. If you can't find any, in a pinch, you can always get ones that you have to shell yourself.

- I'd avoid soups, as these make you feel fuller, but give less calories.

- I'd avoid juice, too, as these give sugar, fullness, but little nutrition.

- You can take most dry whole grains, whirr them for a few minutes in a blender, and you have a powder that you can use to make porridge out of.

- For sweet potatoes, if you add some orange juice concentrate, or orange juice that you boil down until the volume is about halved, then add it to baked sweet potato, it's very tangy and sweet and your midget will likely enjoy it.

- You can also puree garnet yams and add them to ground meat with a whole grain rice, bake, and it's a mild but nutritious meatloaf that should be an acceptable texture for that age.

- Quinoa is a grain that cooks just like rice, can be used wherever you might use rice, and is also offically NOT a grain - it's a full protein and higher in iron than most grains. Amaranth is also a non-grain grain that is a full protein.

- Avocado- high in good fats, lots of good vitamins. You can mash it and add a little lime juice and sugar and it's a nice dessert, too. They even have avocado frosting!

- The brighter the veggie, the more vitamins it has, is the general rule. However, be careful of dark leafy greens and...carrots, I believe (you can look this up on-line to double check). These veggies are much better at absorbing nitrates from the soil, and in our well-fertilized farms, they can be too high in nitrates for babies and toddlers to handle too much of.

- Veggies - you can puree any of them and add them to gluten-free pancakes and such. They actually help bind them a little, so it helps the gluten-free foods some.

- hummus is a nutritious, high calorie food that's the right texture for little ones, too, and can be used as a veggie dip, or just eaten with a spoon. They have some hummus recipes for other veggies, too, like beet dip that's made to eat with cucumbers, for example.

and...that's all I've got, off hand. Good luck on getting your little one's weight and health up!

[raeskids]

Thank you all for your help and suggestions. I am really grateful. Samuel has been eating some lately, but I can tell that he's not absorbing much in nutrients. He's quite pale still.

When you reached a diagnosis what other issues did they look for? Samuel has red blood cells that are kicked out prematurely -- is that possibly due to an underlying anemia issue? And how many of you have dealt with anemia on top of celiac?

How long till he perks up? Or the color returns to him?

Thanks again.

[mushroom]

Both iron defikciency anemia and pernicious anemia (low B12 and folate) are common in celiacs. A lot of our posters have taken iron injections because they could not absorb iron in their small intestine. I take B12 injections because I cannot take the sublingual form of B12. Three years on I take them only every three months.

What supplements is Samuel taking? Because you will need to supplement until his tummy heals sufficiently to be able to properly absorb the nutrients he takes in.

[raeskids]

They have not prescribed a supplement nor have I found one. Do you have a recommendation? The doctor told me to give him Poly-vi-sol, but I haven't checked to verify if it is gluten free.

I am slightly overwhelmed right now -- I know it will get easier -- but, phew, the learning curve is steep!

Thanks.

[mushroom]

I hope one of the parents on the board will respond with their experience. I am not in the least qualified to recommend what to give to a child. Has your doctor not helped you with these issues? Measured what things he is deficient in and recommended/prescribed supplements?

[curlyq]

Welcome to the boards! So sorry that about everything your little guy has gone through, but yay for a diagnosis! When my dd was diagnosed I was so very relieved to finally know what was wrong and what I can do to help her. Here are a few thoughts that I had.

Make sure that you have the VERY BEST pediatric GI in your area, someone who is up to date on the most recent celiac findings. If you are not sure about your GI, you can look and see if your area has a celiac support group (such as R.O.C.K.-Raising Our Celiac Kids), contact the group and ask for recommendations. Ask also for recommendations for a registered dietician who has experience with kids with celiac. Many times the doctor can diagnose, but it takes a dietician to really answer all of the dietary concerns. I would also make sure that you have a normal pediatrician who has experience working with babies with celiac. It is so important that you have medical professionals that you can reach out to with your concerns and who can answer your questions.

[SandraD1971]

It looks like you have some really good responses but I wanted to add some more suggestions. I am the mother of a child that was diagnosed at 24 months old - about 4 years ago. Lactose intolerance is definitely a symptom of Celiac until the villi heal. I kept my son of all lactose (including whey) for 8months until he was healed. My doctor (specialist at Children's Hospital) recommended that you do not have a high fat diet while still recovering - I wish I could remember exactly why but I can't.

When you keep a log, make a note to see if Caesin and/or corn could also be a problem for your child. He may have multiple allergies which could be making his recovery more difficult.

Best of luck to you. My son had an amazing recovery - gained 10 pounds and grew 6 inches the first year on his gluten free diet. There are so many good food choices for him now that he enjoys eating!

[T.H.]

Kirkman labs specializes in vitamins for kids and people with multiple allergies - it was recommended for myself and my kids after diagnosis. They have chewable vitamins, liquid vitamins, or powders designed to into soft food or drink. They have been quite good about talking with me about dosages, different products of theirs, etc. Might be worth checking out.

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For the poly-vi-sol: it is both gluten free and lactose free. :-) However, it's from Enfamil. Usually, that means that your doctor may not be choosing it because it's the best, but because he's the most familiar with it. Enfamil sends out a LOT of information to doctors so that they'll use their products. I'd shop around. Not that you can't double check back with your doc, but...might be worth looking at other vitamin sources and comparing, ya know?

[raeskids]

Thanks for all the replies and helpful hints.

Samuel got very sick this weekend and was diagnosed with pneumonia. They are attributing his weak immune system with his damaged gut. We've got appointments with an immunologist and infectious disease doctor.

There is also a chance that Samuel will need immuglobins via iv and parental nutrition. I'm really hoping we don't need the latter as the risk of infection is high and his immune system is shot.

Any more advice for gaining weight? And absorbing? I just don't think he has a great deal of time to wait for the intestines to heal.

Thanks again!

Rachel

[JennyW]

Rachel,

So sorry for all the craziness you have been going through. My little girl was about 14 months when she just got worse and worse, would throw up everything she ate (as it almost all had wheat) and would literally eat nothing. The doctors told us to be patient with her and spend more time feeding her, but I don't think they understood that when I said she wasn't eating anything, I meant it....I think we were happy when we got her to eat a few bites of a banana and that was for an entire day. She lost a LOT of weight and dropped to the weight she was at like 8months old! She too lost almost all energy and would sit or sleep all day...crawling to a toy seemed like an incredible effort and she certainly couldn't walk, she didn't have the energy. Finally, they tested for celiac and luckily got her in right away for an endoscopy which also positively confirmed how bad her intestines were and how little they were absorbing. We went gluten free that night and luckily her response was immediate. We were told to try to avoid dairy the first month or two while the villi are healing as when they are damaged they have trouble processing the dairy. We were also told to put her on polyvisol which is gluten free. Additionally, because she had lost so much weight, they told us to add olive oil to a lot of things we served her....it is a little thing, but the calories in it REALLY add up.

Sorry to hear your little one got sick again, but I think you are on the road to success. My girl is 2 now and has regained all the weight and started growing again too. In fact, her hair has started coming in finally. It was as if the celiac shut down all non-essential functions! So, I know it's difficult to wait, but I am confident he will start to improve soon as his little body starts to heal itself.

I'd add this forum to your favorites as I know I have definitely consulted it for all sorts of questions that you come across moving forward. Best of luck and best wishes for your son.

[mommida]

Did the doctor ever suggest the amino acid formula? (Crazy thing, it has artificial sweetners in it! Splash comes in little drink boxes and I forgot how many different flavors. My daughter HATED it and we were getting prepared for her to be tube fed. The all top * allergen, gluten free (of coarse) and pea free elimination diet starting working and she did not have to tube.

[raeskids]

He's perked up today. They put him on some antibiotics for the pneumonia, and it seems to be helping with the energy level.

They've allergy tested (RAST) for almost all other food groups and he is allergic to none. Including wheat -- although that isn't the gluten in wheat. Ironic, isn't it?

He still hardly eats. And when he eats he eats in waves. The only thing that he will eat will is a couple scrambled eggs. Other than that it's almost nothing.

[raeskids]

Did the doctor ever suggest the amino acid formula? (Crazy thing, it has artificial sweetners in it! Splash comes in little drink boxes and I forgot how many different flavors. My daughter HATED it and we were getting prepared for her to be tube fed. The all top * allergen, gluten free (of coarse) and pea free elimination diet starting working and she did not have to tube.

How long did it take? I'm quite nervous we're on the the tube feeding route. He's up and moving around, but not absorbing hardly anything. May I ask what your doctor's final straw was with regards to the feeding? Just curious.

Thank you!!

[Anya]

Hello Rachel,

I have just responded to another post of yours and have now come accross this one. I am so sorry for what you and your little one are going through. It is heartbreaking. I can relate, since our daughter (now 2) was very sick for 10 months with recurring c.diff infections. As soon as we took her off the antibiotics, the infection would return. We have also discussed IV IG in our case. So, I understand your concerns.

In regards to eating, we have an extremely picky eater and at times it was very difficult to get her to eat anything. We also tried the elemental formula (like one person suggested), but she did not take it. It was Elecare. I did not like it because it was dairy based.

Have you tried something simple like beef broth? I make it myself and my daughter loves it. It is nutritious and very easy to digest. Another food item that worked out great for us are avocados. They are so nutritious. I would avoid sweet potatos, they are a very complex carb that is difficult to digest. I do not understand why every infant/toddler cook book recommends it. It was a big problem for my daughter. It is fine for kids who have no GI issues.

We are giving our daughter a multi-vitamin each day and additional C for an immune boost. The multi-vitamin does not have enough C. We are using vitamins from ChildLife and they are glutenfree. We are also giving her a very potent probiotic. All the GIs we have seen recommend that. Check with your GI.

How long has your son been glutenfree and dairy free?

Evelyn