Help! I'm So Frustrated

[Helena5150]

My son, who is 4, was diagnosed as celiac almost a year ago. Since then our family has continued to reduce the amount of gluten in our house. Right now I don't bring anything in the house that is likely to contain gluten. The whole family eats gluten-free meals.

The problem is that dispite my efforts his blood tests keep coming back extremely positive for gluten. His numbers have hardly dropped at all in the last 9 mo! I feel so frusterated that I can't keep his little body healthy. He continues to have diarrhea on and off and canker sores in his mouth as well as a lack of appetite.

I've gotten rid of plastic plates and utensils, and I have not used regular flour in the house in at least 6 mo. Is it possible that he's getting gluten from gluten-free foods? I already feel like he hardly has any options for food, do I need to restrict his diet even more?

Please help! I need encouragement and advice from people who have been there.

[Mizzo]

Have you done all the precautionary changes in the kitchen including:

Replacement of:

toaster

strainer

scratched teflon pans (I did)

baking muffin pans, cake pans etc... (I did)

wooden mixing spoons

cutting boards

I changed out my butcher block knife holder as it was filled with crumbs

replaced baking powder, soda, anything you may have inserted a spoon or fork into prior to going gluten-free

cleaned utensil holders

cleaned cabinets to remove crumbs etc...

cleaned frig

cleaned your hand mixer /food processor really well

replaced all condiments/spices/sauces/marinades etc...with gluten-free

Can he be getting cc'd outside the home in Daycare/preschool /grandma's etc...

[Helena5150]

I got rid of the toaster, cutting boards, wooden utensils, and all spices/pantry items that were possibly contaminated. I've been slowly replacing my cookware and bakeware, because it is too expensive for me to do it all at once. But what I have not been able to replace yet goes through the dishwasher and is not recontaminated since I don't have gluten in the house.

We do have cats and the cat food is not gluten free. He doesn't handle the cat food, but could it be causing a problem just being in close proximity. He is with me all day right now. No daycare or preschool.

[suziq0805]

Does he take any medications or vitamins? Since he's been diagnosed awhile ago I'm guessing you've changed toothbrushes since then. Maybe you need to check shampoo, mouthwash, toothpaste, soaps, lotions? Does he play with play-do?

[Ahorsesoul]

Carefully check everything he eats in one day. Each and everything that goes into his mouth. Drinks, toothpaste, gum, candy and all his regular food. My DD was drinking root beer until we figured out the brand had gluten in it. Orange pop is another thing you won't think had gluten. You will find it. Are his symptoms going away?

Remember to even check meats. Chicken can be injected with chicken broth that could have gluten. A lot of meats are now being injected with broths. Makes us pay more for less.

[Helena5150]

Thanks for the help.

I have checked lotions toothpaste and shampoos. We don't drink pop so that's not an issue.

Is it enough to check labels of everything he eats or do I need to research the company procedures of each thing? I do not give him products that say they are processed in the same facility with wheat. And what if it doesn't have any gluten ingredients but doesn't say anything about the processing?

I just don't know if he is extremely sensitive or if there is one or two things I just haven't found yet.

[StephanieL]

We recently had an issue where DS's levels were stalled after a year gluten-free. We have a long list of allergies as well so we are more careful than your ordinary parents. We stick with brands we know. We check, recheck and check again on everything.

We *thought* that we covered everything but we were obviously missing something. There were only a handful of things that I couldn't get clear info on from manufacturers. We decided to by those (very expensive) test strips to check those few things out. We figured out that his mustard (which he was using 2-3 times a week) was not gluten free. There was NOTHING on the ing. list that made us think it would EVER have been an issue but we were wrong. So the moral of the story, if you can't get a clear answer from the company, test the food or pull it and replace it with something you are SURE is gluten-free.

[Mizzo]

We recently had an issue where DS's levels were stalled after a year gluten-free. We have a long list of allergies as well so we are more careful than your ordinary parents. We stick with brands we know. We check, recheck and check again on everything.

We *thought* that we covered everything but we were obviously missing something. There were only a handful of things that I couldn't get clear info on from manufacturers. We decided to by those (very expensive) test strips to check those few things out. We figured out that his mustard (which he was using 2-3 times a week) was not gluten free. There was NOTHING on the ing. list that made us think it would EVER have been an issue but we were wrong. So the moral of the story, if you can't get a clear answer from the company, test the food or pull it and replace it with something you are SURE is gluten-free.

Could you tell us the mustard brand so we can avoid it as well.

Thanks

[domesticactivist]

I have a big post on the blog linked from my profile on going gluten free which might help

[StephanieL]

It was a local brand. Giant Eagle's Natures Basket Organic Yellow mustard.

[nmlove]

If it's potentially coming from his food (and yes, it's possible), try going as whole food as you possibly can. Stick to potatoes, fruits, vegetables, plain meat, etc. Then you could add in more of the "processed foods."

We've been lucky so far but my boys ttg both went up at 9 months out (July of last year was when they were tested). We ate mostly whole foods, did not eat out, had rehauled the kitchen, etc. so it was very frustrating. Since my boys aren't horribly symptomatic unless they're consuming a bunch of gluten I knew it was something they were eating relatively often. Turned out it was their rice milk (they were off cow's at the time). It was labeled gluten-free but obviously wasn't. They were drinking Trader Joe's rice milk which apparently is Rice Dream repackaged. So just that minute amount on a nearly daily basis caused their ttg to rise significantly. They're obviously off it and now, after an entire year later, we finally have normal ttg levels. And that's why I suggest making food that you know where each item comes from. It is a lot of work but you'll have a baseline then.

Best of luck!

[Helena5150]

Ok, after reading everyone's experiences (thanks so much for sharing them) here are my next questions:

Can you trust things like bags of plain brown rice, popcorn kernels, frozen veg. and fruits, plain canned beans, nuts and dried fruit? These are things I use a lot as ingredients.

Also, how can I better help DS (4yrs) to deal with the emotional hardships that go along with all these resrictions? Because of course he dosen't want to be left out. At home I can control the food and we all eat the same, but it's so hard when you're away from home.

[domesticactivist]

Maybe you could try those test strips on things you normally buy. For things like nuts, rice, etc you can rinse them then soak them and rinse them again to reduce the potential of them being a problem. Soaking and dehydrating your nuts is a good idea anyway, because it reduces the phytic acid. Alternate flours are notoriously cross contaminated.

more later...

[domesticactivist]

As for the emotional stuff, it's hard at 4. But you know, all 4 year olds have to hear that they can't have something the other kids have at some time or another. I find that many people, including kids, mirror our attitudes about things. If you can deal with your *own* feelings about him getting left out that will help. I give my kids scripts of what they can say (and more importantly, *think*) in different situations that put a positive spin on it.

It can also help to be prepared. With a 4 year old, you are in control of where you go, who the kids play with, etc. If you know the other kids will be having something *really* good, make sure you pack something your kid loves. If everyone has something different and it's not a potluck situation that helps. If you can schedule play time to not include meal time, do it.

[T.H.]

Can you trust things like bags of plain brown rice, popcorn kernels, frozen veg. and fruits, plain canned beans, nuts and dried fruit?

I'd answer: you can't trust those products completely, no. Some are probably just fine, but since the diet isn't working and you are trying to track down what the issue is, I'd call them all to do some checking.

First (and wow is this frustrating), the label 'also processed in a facility that processes wheat' is a voluntary label. If you see it, it's a good warning. If you don't see it, it still may be an issue.

Nuts and dried fruit are both commonly processed in facilities that process wheat, as we've found out.

Canned anything can be an issue (although it can also be safe). It basically depends on what the cc potential is for it. If something with gluten is processed on the same line, that ups the potential contamination risk. And you usually have to call and ask if it's processed on a gluten-free line to find that out.

Frozen veggies and fruits are usually safer, I'd imagine, but it can't hurt to call them up. The issue would pretty much be the same as the canned goods: what's processed on the same line, in the same facility? We ran into this with frozen fries, for example. They used to be made in a gluten-free facility, and then the company expanded and now they're made on lines that are shared with gluten and made my daughter sick.

popcorn might be safe, might not. Again, the lines and facility cc risks would be the issue.

For the rice, there can be potential contamination with lines and facility, and also many grains are processed with other grains in the same area, so grains themselves can often have a slightly higher cc risk.

You asked earlier if he could be getting gluten from gluten free foods. Yes, he definitely can. Now whether that is enough gluten to bother him is the big question. For most people, if the food is gluten free and has tested at less than 20ppm, it's usually fine.

However, in the USA, it is not legally required for a company to test its food before calling it gluten free. Joy, eh? So some gluten-free foods are great and they are tested and fairly safe. And some gluten-free foods aren't tested and make some of us sick. You have to contact the company to find out if they test for gluten, pretty much.

Now a few of us still react to the very low levels of gluten in gluten-free foods, but that sensitivity doesn't seem to be common, and I'd be looking for normal gluten cc before I'd start worrying about something like that, you know?

Now that aside, a couple other comments:

- does your little one have any gluten-free oats? Does he eat gluten-free processed foods very often? Some 10-15% of celiacs are what is known as 'oat sensitive.' We react to ALL oats, even gluten-free ones, pretty much just like we do to gluten. However, most gluten free foods do not take as much care to prevent gluten-free oat cross contamination, so they can often make oat sensitive celiacs sick. gluten-free mixes, breads, cereals - any of it can be a problem. The CSA certified products DO take care to eliminate gluten-free oats and watch for oat contamination, so they are safer for oat sensitive folks.

- the cats. Yes, this could be an issue. A good friend has a 2 year old celiac boy, and they have been having a horrible time of things. They started house sitting for someone with 2 cats, who are fed gluten AND had wheat based litter, it turned out, and he has been sick every single day they've been there - 2 weeks now. I'm assuming a large part of it has to do with the fact that the cats get the gluten in the mouth, and clean themselves and spread it all over the fur. And we pet the cats, the little ones pet the cats, the cats lie on everything and spread it all around for little toddler hands to touch and stick in the mouth. My daughter is 13 now, and we finally realized that even though the house is gluten free, the cats are not gluten-free enough, and she has to wash her hands every time she's going to put them on her food because she touches so much in the house. And if she's sitting somewhere, she better either have the armrests recently washed, or she has to wash her hands after touching the chair arms and before putting them on her food. If she doesn't do this, she tends to have low reactions constantly.

There is one crunchy food that doesn't have gluten added: Purina One Salmon and Tuna flavor. Just that one flavor, no idea why. I'm sure it's contaminated with gluten, but it's got less than the stuff that has it added, at least!

- Is your lotion and makeup gluten free? If not, does your little one ever kiss your cheek where you might have these products on your skin? That could be an issue. or papa's after shave or shaving cream. Do you use powdered tempera paints? I hear some of those can have gluten. And many construction supplies do, so sawdust from plywood, for example, can have gluten in it. Lots of oddball stuff around the house, in other words.

- has your little one ever been tested for other intolerances or food allergies? My own GI told me that often, intolerances and allergies will prevent the gut from healing properly until they are eliminated.

- is it just the blood work that is high? Have they ever looked at the other conditions that can cause these results? I honestly can't recall what they are, but I know that for SOME of the blood tests, there are other diseases that can cause high numbers.

Re: the emotional hardships...I've read my daughter and son stories about other people having to face problems and physical challenges, and we talk about how they did it, and how it might relate to us or not. Usually, celiac disease ends up feeling pretty mild compared to what's out there in the world, you know? But my children were both older when diagnosed, so they could understand more, as well. Sorry I don't have as much advice for an itty bitty!

[nmlove]

Wow, great responses! My four year old seems to have a hard time occasionally with never eating gluten again (like he can even remember eating it!). I think part of if it is a stage at that age. It's a huge realization to think of forever. You know? My 6 year old was diagnosed at 4 and just really went with the flow and seems to have a grasp on the fact that he can never have it. My 4 year old also really likes me to read the book "Gluten-free with Emily." He loves that her friend's name is Dylan (his name too) and he laughs every time she has to eat fruit, lots of fruit, for dinner one time at his house while everybody else ate spaghetti (laughter is the best medicine, right?). Plus we use the purple elephant line all the time with bloodwork. It produces a few more giggles amongst the tears. Other than that, we keep our attitude straight forward and positive about it. And as someone else said, if you know you'll be out and about, plan so that he can at least eat something similar, or if not, bring along a treat for dessert or something. Find a restaurant close by you can trust (once you figure out what's going on of course) and go there on occasion as a treat out - for him and you.

As for the whole CC thing. Knock on wood, we seem to be doing ok with the pantry items you listed using store brand names: rice (Meijer or Kroger, I don't rinse), popcorn kernels (Kroger), frozen veg (usually Bird's Eye View plain steamers or mixed Kroger veggies), frozen fruit (rarely buy), plain canned beans (Kroger plus I always rinse because of sodium), dried fruit (I check label and if it says made in wheat facility, etc., I don't buy but I haven't had to make a fuss about checking further than that). Nuts are a big made in facility with wheat, nuts, dairy, etc. type of food. The only brand I've found to work around me is Kroger. It is the only one processed in a facility with other nuts only. So I stick to them.

[nmlove]

I forgot to say that I made sure our cat's food did not have obvious gluten (whether it's CC on the line or not is another story!). We feed him wet and dry food (history of UTI issues so can't do just dry): Purina Fancy Feast Classic flavors (wet) and Purina Fancy Feast Gourmet Cat Food Filet Mignon Flavor with Real Seafood & Shrimp. Sure, it costs a little more but we only have the one cat and it takes him awhile to get through a bag.

Also, no one has brought this up and I'm sure based on your posts that you probably know this, but I wanted to throw it out there just in case. You don't have play-doh in the house, right? Just checking because that gets everywhere and is gluten.

[Helena5150]

Sorry it's been a while, I haven't had a good chance to post in a few days.

Also, no one has brought this up and I'm sure based on your posts that you probably know this, but I wanted to throw it out there just in case. You don't have play-doh in the house, right? Just checking because that gets everywhere and is gluten.

Thanks for bringing that up. I do not use play-doh in the house with any of the kids. Also thanks for mentioning the book. We currently do not have any kids books on the subject and I think it might help DS to read a book that is on his level. I will also try to find that cat food to see if that makes a difference and I will start making phone calls to the companies of all the food products that we use frequently. Hopefully I can get this figured out sooner rather than later.

does your little one have any gluten-free oats? Does he eat gluten-free processed foods very often? Some 10-15% of celiacs are what is known as 'oat sensitive.' We react to ALL oats, even gluten-free ones, pretty much just like we do to gluten. However, most gluten free foods do not take as much care to prevent gluten-free oat cross contamination, so they can often make oat sensitive celiacs sick. gluten-free mixes, breads, cereals - any of it can be a problem. The CSA certified products DO take care to eliminate gluten-free oats and watch for oat contamination, so they are safer for oat sensitive folks.

-

I have not used oats in the house for at least 6 mo., for the reasons quoted here. I will have to do some checking on the craft supplies.

What does everyone think about using hand sanitizer to lessen the chances of cross contamination when you're not near a sink? Does it eliminate gluten on the skin?

And what are some opinions about the length of time it takes for blood levels returning to normal? Is it possible that he might take longer than others? And how often do you get blood work done? His GI doctor suggests about every 3 mo. until it returns to normal. Sometimes it's hard to wait 3 mo. to find out if the changes we've made in the past 3-4 weeks are making a difference. His symptoms are more sporadic now than when he was eating regular stuff all the time, but they are still present. Do the symptoms usually go away before the blood levels are completely down? Are the symptoms, either returning or subsiding, a good indication of what's going on?

Thanks again for the help

[nmlove]

What does everyone think about using hand sanitizer to lessen the chances of cross contamination when you're not near a sink? Does it eliminate gluten on the skin?

And what are some opinions about the length of time it takes for blood levels returning to normal? Is it possible that he might take longer than others? And how often do you get blood work done? His GI doctor suggests about every 3 mo. until it returns to normal. Sometimes it's hard to wait 3 mo. to find out if the changes we've made in the past 3-4 weeks are making a difference. His symptoms are more sporadic now than when he was eating regular stuff all the time, but they are still present. Do the symptoms usually go away before the blood levels are completely down? Are the symptoms, either returning or subsiding, a good indication of what's going on?

Hand sanitizer does nothing for gluten CC. The only way to clean gluten off your hands is to wash with soap and water. That's what I always thought and it was confirmed by my kids' GI doc (my husband and I brought up for debate with him).

In our experience, blood levels can take awhile to get back to normal. Both my children, especially my oldest (4 at the time) had very positive celiac panel results. This was late October blood panel results. By late January (3 months out) the numbers were high but going down. Then another 6 months (now 9 months out) the numbers climbed again because they had been unknowingly consuming trace amounts of gluten from a supposed gluten-free item. Took it out and by the next January (now 15 months out), the numbers were coming down. And finally, this past July (21 months out) we have our first normal ttg levels. So for us, it's taken awhile! By the way, they currently go every 6 months (other than that initial 3 month visit). They can go once a year once their levels have been normal two visits in a row and they have no symptoms in-between times.

Symptoms while healing... For us, we had immediate responses to the diet. Now, the symptoms didn't magically disappear but we could obviously tell that gluten was a problem. Their symptoms continued to improve - it seemed slowest with my youngest who suffered from constipation and pale, sticky stool prior to diagnosis. Then the CC contamination occurred and I could see their symptoms slowly return/worsen. So my oldest seemed to recover quickly but my youngest took time and it wasn't really until over a year or a little more that he consistently had daily, "normal" BMs.

[ryebaby0]

Canker sores are often a folate deficiency. He should be taking a multivitamin. If his tTg levels are still positive, he's still getting gluten, that's pretty much it! I would limit his diet to something really pedestrian -- rice and chicken comes to mind --- and do that until the diarrhea stops. I know that seems drastic (it's what we had to do) but it is helpful to find out where it's coming from. Your instinct is that this is alarming, and it is. He should be getting better, and he's not. There's gluten in him, from somewhere. List everything he eats for a whole day, and post it. We'll look at it!! You're avoiding wheat, barley, oats and rye, right? All variations of wheat, right?

.

Another, unlikely possibility, is that something else is wrong. There is something called autoimmune enteropathy, which is a rare dysfunction that looks like celiac disease but doesn't respond to a gluten-free diet. (My son has it, along with true celiac disease). Chances are that's not what's going on. More likely, he's got playdough, or sunscreen, or your lipstick, or the paper towel roll (that first and last towel are held on the tube by wheat paste! Who knew!) or something obvious yet weird.

I would stick with the nuts, veggies, whole foods you list. The "processed on the same line as.." statement I find, personally, useless. I think many companies are just covering their butts from litigation and there's no real issue to worry about. We've only rarely avoided items with that as the only concern. Some notable exceptions can be found in the threads about specific items. Always call and doublecheck --- even here at celiac.com, people are sometimes wrong, or overly cautious when there is no reason to be. Make up your own mind.