Should I Be Seeing More Results?

[jesslynn555]

After a positive blood test (no biopsy) my 3 year-old son was diagnosed with celiac. He has been on a strict gluten-free diet for 5 months. I have seen a noticeable improvement in his mood and energy level, but they are still not comparable to other kids his age (ie, he can walk out to the car now, but can't run or play outside.)

I was also hoping for more physical growth. He has gained one pound and grown 1/2 inch. He is almost 4 and wearing 18 month clothing.

People comment to us that he looks healthier than he did before, but I know that he is nowhere near feeling 100%.

Are my expectations too high, or should I be seeing more improvement by now?

I don't want to over-react, but I don't want to under react and not get him the help he needs.

I appreciate any comments.

Thanks,

jesslynn555

[kbtoyssni]

If your kid was too sick to walk to the car before, I'm guessing he had a lot of damage. So it could be that he's going to take a long time to heal. But five months is a long time. I would do another look at the diet to make sure he's 100% gluten-free. What about personal care products of everyone in the house, pet food, siblings getting crumbs around, a spouse accidentally double dipping in the mayo, cutting boards and wooden spoons, meds, often-CCed foods like Lay's chips, etc.

If you don't think of anything there, you might look into other food intolerances like casein (milk protein) or soy. They can often have similar symptoms as gluten. A food journal or elimination diet might help.

[Ursa Major]

I agree, dairy and soy can really hinder healing, and may also be lifelong intolerances in addition to gluten. If you haven't eliminated those two, you may want to do that, it might make all the difference.

Also, have you made sure of everything around being gluten-free? Does he have his own toaster? Is his play-dough gluten-free? What about his shampoo, conditioner, bubble bath, toothpaste etc.?

You might want to make your whole house gluten-free, not allowing anybody to eat gluten in your house at all, and scrubbing down everything to make sure all traces of gluten are removed. If a child is that ill, extreme measures may be needed.

If you haven't done that already, you will need to replace plastic colanders that have been used for gluten pasta (you absolutely cannot clean them well enough to be safe for draining gluten-free pasta), as well as wooden cooking spoons, scratched non-stick cook and bakeware, wooden cutting boards and any dishes, cook and bakeware with sharp corners that can't be cleaned properly.

Gluten is extremely sticky, and unless you can directly scrub something thoroughly, you won't get it off. Just putting it through the dishwasher might not be enough the first time.

[OBXMom]

My son is a bit older (8) but after 4 months on a gluten free diet I found myself asking the same questions. My son's energy level was good, and he did have a growth spurt, but his stomach still hurt lots of the time. We have been on an elimination diet to see what other foods are harming my son. First an allergist tested him for many foods, and he only ate the handful that he was definitely not allergic to for 10 days. Well, we actually didn't make it to 10 days, because he just ate less and less each day and lost 4 pounds in a week, but that was the plan. Since then we have been adding one new food every three days, starting with the ones he had the least allergic response to, like rice and eggs. Because my son's tummy is an accurate little barometer, this has been very helpful for us. But I understand it can be much trickier if you don't have pain as an immediate symptom.

If you feel like you should be seeing better results, listen to your instincts. You sound like you are already on the right path and I hope you get it all worked out very soon.

- Jane

[jesslynn555]

Thanks for the comments. I agree that he may need further testing for an additional food allergy, it just seems really overwhelming right now.

Can anyone tell me how long it took them to see results? We are seeing improvement with him, the progress is steady, it's just slower than I had hoped for.

Please keep the comments coming. THey are so helpful and I'm feeling pretty desperate.

jesslynn555

[Joni63]

Hi jesslynn555,

I'm the one in my family with Celiac. I'm sure it must be tough when it is your child. I can tell you that my energy has not improved much and I am 8 months gluten free. My stomach is also still bloated and I'm trying to find the cause. I know it is a lot different since I am age 43 at diagnosis. Some things that you could try to keep an eye out for:

Does he ever seem sick or relapse after eating something?

Is it possible he is getting hidden gluten from toothpaste, hair products, soap, etc.?

Is he taking a good childrens chewable multi-vitamin?

You could go back and re-check everything to make sure, but the fact that he has grown and started to gain weight and has a better energy level sounds like a really huge success. It takes our bodies a long time to get worn down from gluten and it will take some time for him to heal. If nothing stands out as a problem, I would keep doing what you've been doing and maybe he will make progress faster in time. Best wishes!

[AliB]

I very much agree that it could be other foods that are hindering your little ones' recovery. If we are still consuming foods that are contributing to the damage then recovery is bound to be slower or 'incomplete'.

A good multi-vitamin is also a good idea. As the damage causes malabsorption issues then it may take a while for the reserves to build back up. When we are sick like that we need all the help we can get. The more nutritional support we have, the more likely some of it is to get through. Even just one a day will undoubtedly help. Don't be tempted to give too much more than that though as although some vitamins and minerals may be deficient, others may not. Unless you are able to get a full-spectrum nutrient check done for him it can be a bit hit and miss.

Complex carbohydrates, grains and starches, sugar and dairy will be much more difficult for an impaired digestive system to cope with. Along with protein foods, simple ones like those in fruit, vegetables, honey and some nuts are usually much easier to digest and are less likely to contribute to the damage. The Pecanbread website gives some good recipes and ideas for simple foods if it is any help.

Improvement can take some time - it really depends on the individual. Some get results pretty quickly, some take longer, but any progress is proof that the diet is working. Sometimes though, it just needs a little more 'tweaking' to get it to work to the best possible way for each individual. An elimination diet is a good place to start as it cuts out any background 'antagonists' and enables you to monitor individual reactions, if any, to different foods.

[ShayBraMom]

The severe damage that occured to his small intestines,which caused him to have stunt growth low weight and so on, due to nutritions not getting through. takes time to heal. It takes up to a year even for it to heal depending on how severe the damage was! 5 month in his case how sick he was is not really a long time and he will catch up, just give him time! He did gain weight and he did grow, for a body thart is still healing this is a huge accomplishement in 5 month. Really! Overall in general most that had bad damage like that it takes them a year to feel great sometimes even longer. Overall it's said it can take up to 5 years to have the maximum Benefits fo the glutenfree diet- I do however believe that this is more tailored to Adults then kids. I gues it'll be aobut ayear before you see really big results, he's still so young~! Good luck!

After a positive blood test (no biopsy) my 3 year-old son was diagnosed with celiac. He has been on a strict gluten-free diet for 5 months. I have seen a noticeable improvement in his mood and energy level, but they are still not comparable to other kids his age (ie, he can walk out to the car now, but can't run or play outside.)

I was also hoping for more physical growth. He has gained one pound and grown 1/2 inch. He is almost 4 and wearing 18 month clothing.

People comment to us that he looks healthier than he did before, but I know that he is nowhere near feeling 100%.

Are my expectations too high, or should I be seeing more improvement by now?

I don't want to over-react, but I don't want to under react and not get him the help he needs.

I appreciate any comments.

Thanks,

jesslynn555

[jesslynn555]

These comments have been great. Thanks so much for all the support. I agree with everything posted, I just don't know what to do next. I agree that he is improving and that I may need to be more patient in seeing results, but if he does have another food allergy, I want to start working on it.

With gluten, it was easy, you can't argue with a blood test. As for caesin, lactose, soy, or anything else, they are more difficult to pinpoint. Does anyone have any suggestions on how I go about assessing for these allergies? I would assume I need to do them one at a time. Which one should I do first?

He has been mostly off dairy for 5 months, ie, no milk, yogurt, or ice cream. But I still butter his gluten-free toast and he eats some cheese. I have replaced the missing dairy with soy, which he could also be allergic to. I don't want to take him off dairy and soy at the same time because I feel he needs the calcium, and I can't imagine his diet being anymore restrictive than it already is.

I appreciate any thoughts on this.

Thanks so much,

jesslynn555

[gfp]

I don't want to take him off dairy and soy at the same time because I feel he needs the calcium, and I can't imagine his diet being anymore restrictive than it already is.

I appreciate any thoughts on this.

Thanks so much,

jesslynn555

He can get more available calcium through greens and things like whole sardines ... and as has been said the diary and soy are harder to digest.

As Ursa asked .. is the whole house gluten-free?

[Lizz7711]

I'm not at all an expert, and haven't dealt with celiacs with toddlers, but it seems to me that a 3 year old should show more improvement in 5 months so I think your instinct is right. My daughter and I were just recently diagnosed (4 months now), she is 8. We are completely gluten and casein free, with minimal soy and eggs. I also have noticed a lot of behavioral improvement, but she's still pretty skinny so I think we need to be much more strict with the soy, eggs, and also corn. We did our testing through enterolab.com, which you could order just a casein, soy, egg, or yeast test...they do stool testing which makes sense becasue there are more antibodies to the food in the intestines than in the blood for many people. That's the expensive but quicker route. Otherwise, you have to do a food eliimination diet.

We use gluten free fortified rice milk so you can get calcium there...and also fortified orange juice, I also give her a gluten/dairy/soy free multivitamin and calcium supplement (gummy bears by Hero). (for treats, Rice Dream makes a really good ice cream substitute (you have to check and get the organic gluten/dairy free one, think it's soy free too)

It sounds like his intestines are pretty damaged so he's not absorbing well at all. It's highly likely he has casein and soy problems, i'd eliminate all casein first as that tends to cause alot of symptoms. We are still using earth balance margarine which is a blend of oils and does have some soy in it...but it would at least be better than butter I think. With malabsorption and a leaky gut it does take drastic measures to heal...really cut out all processed foods, just stick to fruits/vegetables/meats/minimal whole grains. I'd also cut out corn since it's a high allergen. Probiotics might help with digestion and absorption too. There's a book I just ordered so haven't read it yet, but it's supposed to be really good, called "Digestive WEllness for Children" by Liz Lipski ($13 on amazon)

I think you really should look at finding a good local dietitian who knows about food sensitivities to work with you since he's so undernourished.

good luck!

Liz

These comments have been great. Thanks so much for all the support. I agree with everything posted, I just don't know what to do next. I agree that he is improving and that I may need to be more patient in seeing results, but if he does have another food allergy, I want to start working on it.

With gluten, it was easy, you can't argue with a blood test. As for caesin, lactose, soy, or anything else, they are more difficult to pinpoint. Does anyone have any suggestions on how I go about assessing for these allergies? I would assume I need to do them one at a time. Which one should I do first?

He has been mostly off dairy for 5 months, ie, no milk, yogurt, or ice cream. But I still butter his gluten-free toast and he eats some cheese. I have replaced the missing dairy with soy, which he could also be allergic to. I don't want to take him off dairy and soy at the same time because I feel he needs the calcium, and I can't imagine his diet being anymore restrictive than it already is.

I appreciate any thoughts on this.

Thanks so much,

jesslynn555

[OBXMom]

I wish I could say I had answers, but we are still very much working through the same thing. I knew that we needed to do an elimination diet, and I was delighted when the team at our Children's Hospital said the same thing, and offered to guide us through it with a nutritionist to help. We started with blood and skin allergy testing, then for 10 days my son ate only verified non-allergens. Then he added back foods one at a time, at 3 day intervals.

But . . . the first things he reacted to were milk, soy and corn, which I see on the boards many, many celiacs react to. So I wonder if we would have been better off just to start eliminating those three, and not so many other things. The advantage of a nutritionist helping is that they can give you supplements to make sure you are getting complete nutrition. My son, of course, refuses all of them, so they aren't that much help to us. If you like I could send you information on the ones that were recommended to us, and you could order some.

My sons diet is unbelievably limited, it always was due to pickiness, and it is getting worse based on our results. I just hope in the long run he'll have a better diet and will be better nourished. Hope the same for you guys . . .

[April in KC]

Hi there - great replies. My husband and I both have Celiac (both initially diagnosed by blood work) and have three sons who range from gluten intolerant to outright Celiac. I have been in a similar situation with my oldest Celiac son (the sickest of the family) - he was a year off gluten and dairy and most soy, with some improvement but not what I expected (based on my own recovery, which was faster). I made an appointment (with a new pediatric GI specialist who had some knowledge of food allergies as well as Celiac Disease - since my son also had peanut and soy allergies). I get a little nervous about forgetting important details during my 15 minutes of face time with the doc, so I made a one-page sheet of concerns/goals/questions (could it be X, help rule out Y), etc.

Here are some of the things his GI did:

* Check vitamin levels, not just B vitamins and iron but also all fat-soluble vitamins A, D, E and K. My son was low on Vitamin E (a deficiency described as "rare in humans").

* Recheck his Celiac bloodwork repeatedly - give at least a couple of months between checks. They used TTG as their measurement of choice, but some 3-year-olds do not develop a positive TTG. Do you know what kind of test was positive for your son? The retesting will help you understand whether you really have the gluten out or not. You can be really conscientious and still have hidden gluten. Suspect any processed foods until you confirm that others are fine with them.

* After supplementing the Vitamin E and agreeing that the TTGs were trending downward, our GI suggested scoping with biopsies (something we had never done since his blood work was so obviously Celiac). We are really glad we did. It was enlightening to say the least. He did not have flattened villi (they were fine), but he did have another condition called Eosinophilic Gastroenteritis that can sometimes occur in children with a history of food allergies (IgE allergies, the kind that give you hives), atopic diseases, asthma, eczema, etc. The EGE was causing another type of protein-losing enteropathy. The treatment for EGE is not simple, but we now have a direction to pursue. So he has both Celiac and EGE! At least we knew from the scope that we were doing well on the gluten part - since his villi were fine. Important - the GI said he took NUMEROUS biopsy specimens from stem to stern (esophagus, stomach, duodenum, colon).

I wanted to share, in case any of these steps help. I agree that getting all dairy out, followed by soy, can be a starting point. But I also think for a child who has been that ill and continues to have low energy, you should get blood vitamin levels checked and consider the other steps.

Do you have a great doc? If not, post in the docs section and try to find a great pediatric GI in your area.

Take care & big hugs for your little guy. We'll say a prayer that he gets healthy soon.

April

[OBXMom]

April, thank you for sharing this. My son is celiac and still having issues, and eosinophilic esophagitis has been mentioned. What treatment will your son be receiving for the EGE? I printed out your email, and will make sure I have my little guy's blood vitamins checked as well.

[Ursa Major]

Jesslynn, that you have replaced his milk with soy could be a huge problem! First of all, dairy will NOT supply any calcium, because pasteurization kills the enzyme that will allow humans to use the calcium from dairy. In fact, it has been shown that dairy will actually deplete calcium. The dairy industry has done a great job at brainwashing the general population (including doctors and nutritionists) to believe that dairy is essential for calcium.

In fact, green leafy vegetables have tons more calcium than dairy, and we can actually absorb that. You may want to ask yourself how cattle and other large herbivores (like elephants) get the calcium for their large, heavy bones? Certainly not from dairy, but rather from grass and other green vegetation.

It would be best if you do take all the most likely allergens out of his diet all at once, and keep them out for at least a week. Then you test if they are a problem by adding them back into his diet one at a time, several days apart to catch delayed reactions. That is how a true elimination diet is done.

If you take one possible allergen out at a time, you will never know if he has multiple intolerances!

So, eliminating dairy and soy, as well as corn and eggs all at the same time is the wise thing to do. Then, if he starts feeling better, you know that the problem food(s) is included in those foods. If he still isn't any better, you may want to eliminate nightshade foods as well (potatoes, tomatoes, peppers, eggplant). Rice could be a problem as well (it is for me), as it isn't as hypoallergenic as most people believe. Beans could be causing trouble as well, and one big troublemaker is MSG, and hydrogenated vegetable oil is a no-no as well. Food dyes could be causing trouble as well, as could sugar. But any substitute sweeteners are worse than sugar.

[ryebaby0]

I'm just going to answer your original question : YES, after 5 months gluten free, he should be gaining weight and feeling better. Either there's still gluten in his diet, or he has some other issues, or both. If it were me, I'd go back to your peds, or even better a peds GI dept. at the closest big hospital. Not to knock all the free advice, I don't think it's as easy as eliminating things and seeing what reaction you get. If there's something else wrong -- something beyond the scope of food intolerance or allergy --- you don't have an unlimited amount of time to find out. (Yes, the disclaimer --- as many of you know, my son was dx as celiac, but didn't respond. Turned out he also has other autoimmune dysfunction that only doctors could have found, and they did, but only just in time and only because we would not settle for "give it some time")