My Son's Not Getting Better-post 20 Months

[dalss1]

Our two boys (ages 9 and 13) have been diagnosed since Jan. 2006 (endoscopy to confirm in Feb. 2006), and we have been gluten-free ever since. We are especially careful at restaurants, and the kids take their gluten-free lunches to school. Believe me, no one could be more anal about their food than me (their mom), but our youngest son's blood tests keep coming back high. His original number was 142...now it's 14, but our GI doctor says he wants it under 7, and that he MUST be getting wheat/gluten on a daily basis. He had another scope Aug. 3 and the results show some improvement in inflamation, but still abnormal cells. He is a little guy, and we are trying everything possible to get him to grow. He is N-E-V-E-R hungry, and our GI wants to put him on Periactin, but I can't find the manufacturer's phone number to confirm it's gluten-free. We are at a loss as to why our son is still not healed, and why is he constipated, bloated and not growing well if he's been gluten-free for 20 months now. Does anyone have any answers or similar problems that they've dealt with? Do we get a new doctor? Thanks for any advice.....

[gfpaperdoll]

Is your home completely gluten-free? Are you cooking with wheat flour in the house???

Have you double checked things that he is eating? Did you completely clean out your kitchen of things like chopping boards, wooden spoons, rubber spatulas, colanders, scratched up teflon pans, old baking pans, when you went gluten free?

Are you in contact with your local support group or ROCK group?

You might give us an idea of the foods that he is eating & maybe we can spot something.

[Juliebove]

Could it be something external? Play Doh? Shampoo? Soap?

Or could he be eating something at a friend or neighbor's house?

[hathor]

He has made a great deal of progress. I've heard people say that it can take two years to heal. I don't have a feel for how long it takes numbers to get down completely. Perhaps someone can tell you that it CAN take longer than he's been gluten-free? If it can take longer, then he might not be getting gluten somewhere.

Other things -- oats? toaster? licking envelopes? lip balm? toothpaste? paste or other art/school supply? bulk foods you buy (sometimes folks move scoops around or the bins don't get thoroughly cleaned)?

Does he eat fried foods at restaurants? I know you say you are extra careful -- does this include making sure that anything has a separate fryer with oil that hasn't been used for anything breaded?

Have you checked labels? I've found I may react to things that are processed on shared facilities. Unfortunately, manufacturers aren't required to put this information down.

The other idea I have is that he may be sensitive to something in addition to gluten. This could explain his continuing symptoms at least. The most obvious things are casein or lactose. Those can cause constipation and bloating and seem to be intolerances that are frequently paired with gluten problems. So you might eliminate dairy (and anything with added casein or caseinates) and see. It seems if someone is sensitive to it the reaction is fairly definite.

Also difficult on the gut can be soy. But I would check the dairy first.

[Cam's Mom]

Hi!

We have had the exact same problem with our daughter. Original number was 180+ then 6 months in she was down to 70+ then another 4 months and she was still high. Doctor wants the number under 19. We were going totally NUTS! You want to talk about anal - I think we were scarring this poor kid for life because we started just freaking out about everything she came in contact with.

Here is our current stance: We stopped doing blood work and watching the numbers constantly. We are super tight about our control and have stopped letting her eat anything at all that wasn't prepared in our home (we've just started to ease up on this a tiny, tiny bit). For instance, she now occasionally (and I mean really infrequently) can get an ice cream out but the server has to change gloves use a new, clean scoop and open a fresh container of ice cream - yeah, they love us!).

The other thing is that it can feel really infuriating when it is implied that you are missing some daily gluten and it certainly made us a little more than defensive however, here are a few things we decided to consider as a possibility:

1. we no longer use any item that is produced on machinery that also handles wheat and are extremely cautious of items from a facility that processes wheat (which eliminates almost anything from trader joes). And, we allow absolutely no gluten in our house - including pet food.

2. We learned that vit. e - usually referred to as tocopheryl acetate can be wheat germ oil. It can also be derived from soy or coconut or other sources but is completely unclear. I think food products are required to say if it is wheat but cosmetics are not. We were using a lip balm on our daughter's lips that contained vit. e - when we called the manufacturer we were told it was indeed wheat germ oil - yikes - right on the mouth!! Also, watch out for vitamins, make sure to get ones that actually say gluten free - or check with the manufacturer.

3. The other thing we did was switch brands of all of our daily staples - ie. peanut butter, canned beans, pasta sauce, etc. anything that was not specifically labeled gluten-free (and even some that were). We figured if there was something we just weren't catching we'd never know so we researched new brands and just switched as many as we could.

Sorry, this is becoming a really long post, feel free to PM me if you want more info. But the long and short of it is that after doing all of this, she is doing much better. Way less constipated and gassy. She now "goes" every other day rather than once every week or two. And she's growing and feeling well. The other major key is that she has been doing much better since being out of school. I think there is a fair amount of cross contamination from really crumby, touchy little kids that we just have not been able to control.

The other possibility is that perhaps these things just take time. I have never gotten a clear answer on how long it should be expected to take to really clear those antibodies out of the body. Good luck!

Barb

[gfpaperdoll]

One tiny thing is enough to make these kids sick. I also suggest you keep wipes in the car & wash hands as soon as you get home. I have gotten cross contamination from my computer keyboard after my computer repair guy left & I was sitting here eating a snack...

Another thing is to keep them out of bakeries & places that use flour, it is really bad. Also, if they are at a friends house & the parents are cooking with flour - also bad.

Just think of wheat/gluten as Rat poison & you get the idea. It is the same thing as a peanut allergy, if a kid with a severe peanut allergy is in someone's home & they are shelling peanuts & chopping them up... or worse frying or roasting them... If your child touches stuff in a friends house & then goes to eat something like an apple with their hands it is enough to make them sick.

[dalss1]

Hi!

We have had the exact same problem with our daughter. Original number was 180+ then 6 months in she was down to 70+ then another 4 months and she was still high. Doctor wants the number under 19. We were going totally NUTS! You want to talk about anal - I think we were scarring this poor kid for life because we started just freaking out about everything she came in contact with.

Here is our current stance: We stopped doing blood work and watching the numbers constantly. We are super tight about our control and have stopped letting her eat anything at all that wasn't prepared in our home (we've just started to ease up on this a tiny, tiny bit). For instance, she now occasionally (and I mean really infrequently) can get an ice cream out but the server has to change gloves use a new, clean scoop and open a fresh container of ice cream - yeah, they love us!).

The other thing is that it can feel really infuriating when it is implied that you are missing some daily gluten and it certainly made us a little more than defensive however, here are a few things we decided to consider as a possibility:

1. we no longer use any item that is produced on machinery that also handles wheat and are extremely cautious of items from a facility that processes wheat (which eliminates almost anything from trader joes). And, we allow absolutely no gluten in our house - including pet food.

2. We learned that vit. e - usually referred to as tocopheryl acetate can be wheat germ oil. It can also be derived from soy or coconut or other sources but is completely unclear. I think food products are required to say if it is wheat but cosmetics are not. We were using a lip balm on our daughter's lips that contained vit. e - when we called the manufacturer we were told it was indeed wheat germ oil - yikes - right on the mouth!! Also, watch out for vitamins, make sure to get ones that actually say gluten free - or check with the manufacturer.

3. The other thing we did was switch brands of all of our daily staples - ie. peanut butter, canned beans, pasta sauce, etc. anything that was not specifically labeled gluten-free (and even some that were). We figured if there was something we just weren't catching we'd never know so we researched new brands and just switched as many as we could.

Sorry, this is becoming a really long post, feel free to PM me if you want more info. But the long and short of it is that after doing all of this, she is doing much better. Way less constipated and gassy. She now "goes" every other day rather than once every week or two. And she's growing and feeling well. The other major key is that she has been doing much better since being out of school. I think there is a fair amount of cross contamination from really crumby, touchy little kids that we just have not been able to control.

The other possibility is that perhaps these things just take time. I have never gotten a clear answer on how long it should be expected to take to really clear those antibodies out of the body. Good luck!

Barb

[dalss1]

Thanks for the important information, and for the vote of confidence about us being careful. Man, there is nobody more careful, and yet I feel like I must be missing something because of the numbers. We went back to our GI yesterday and he agreed that we should NOT do a blood test right now because the numbers frighten me too much. Sam has actually gained two pounds since my last post (actually, since July), although he is still less than 3% on the height chart. He has never been above 3% in his whole life! Now we are off again to the endochronologist to check growth hormones (we've been back and forth between endo and GI). In December, we will check blood results again...and I'm keeping my fingers crossed that he is just taking a long time to heal. As for the constipation, he is on Miralax and cannot get off of it without severe pain (even if we miss just one day's dose). I will take your suggestions about lactose and see if that helps his constipation. Also, we've added a probiotic since our last exam in July, so that could be helping his upset stomach (he is actually hungry now!). Thanks again for your advice. Hope all is well with your daughter.

[Alena]

This is my first time on the celiac forum, I may be a bit confused but I have a similar problem. Similar, not identical and would love to get some advice. My 8-year old son was finally diagnosed this January. Once we got the results - in February, we put him on a strict diet. Since he already had been on the diet for 3,5 years previously (and then on gluten for 2 years) I knew what to do. I'm positive he does not get any gluten in his diet. His antibodies went down and is negative on the prick test. Unfortunatelly, he has also developped a serious allergy to dairy since starting the diet which we tackled and elimanated all dairy from his diet with absolutely no result.

To sum things up, we had a growing boy with perfect blood tests, no anemia, no digestive problems whatsoever. Ever since he has been on the diet, he has been losing weight, stopped growing, lacks minerals (blood test), his teeth have turned yellow, he passes floating stools every 2-3 hours and we are very worried. Adam was originally diagnosed on the basis of raised transgluten antibodies, followed by a biopsy. Instantly after the biopsy I had been told it looks good, there were no visible problems. I called the doctor a week after the biopsy to be told he has Marsh1 which is a very inconclusive result. Yet, two more weeks later, the Marsh was already 3b. I feel we are doing everything properly, Adam is very responsible about his diet and always asks and really avoids eating outside home, yet things are getting steadily worse.

Anybody with a similar experience please?

Thank you

[par18]

This is my first time on the celiac forum, I may be a bit confused but I have a similar problem. Similar, not identical and would love to get some advice. My 8-year old son was finally diagnosed this January. Once we got the results - in February, we put him on a strict diet. Since he already had been on the diet for 3,5 years previously (and then on gluten for 2 years) I knew what to do. I'm positive he does not get any gluten in his diet. His antibodies went down and is negative on the prick test. Unfortunatelly, he has also developped a serious allergy to dairy since starting the diet which we tackled and elimanated all dairy from his diet with absolutely no result.

To sum things up, we had a growing boy with perfect blood tests, no anemia, no digestive problems whatsoever. Ever since he has been on the diet, he has been losing weight, stopped growing, lacks minerals (blood test), his teeth have turned yellow, he passes floating stools every 2-3 hours and we are very worried. Adam was originally diagnosed on the basis of raised transgluten antibodies, followed by a biopsy. Instantly after the biopsy I had been told it looks good, there were no visible problems. I called the doctor a week after the biopsy to be told he has Marsh1 which is a very inconclusive result. Yet, two more weeks later, the Marsh was already 3b. I feel we are doing everything properly, Adam is very responsible about his diet and always asks and really avoids eating outside home, yet things are getting steadily worse.

Anybody with a similar experience please?

Thank you

Hi,

Not sure I understand your post. Did you say when your son was "originally" diagnosed. Do you mean he has been diagnosed twice? Also are you saying he has been on the gluten-free diet twice? What happened the first time (3,5 years)? Was he on or off gluten when he appeared to be doing fine? Is your home gluten free ?

Tom

[Alena]

Hi,

Not sure I understand your post. Did you say when your son was "originally" diagnosed. Do you mean he has been diagnosed twice? Also are you saying he has been on the gluten-free diet twice? What happened the first time (3,5 years)? Was he on or off gluten when he appeared to be doing fine? Is your home gluten free ?

Tom

Hi Tom, Adam had an allergy to milk and when he was 20 months old I asked the allergologist to test for gluten antibodies because he had the ocassional loose stool. The test came out negative for all types of gluten antibodies but showed allergy to milk. At the time of the blood test we were advised to take him off gluten "just to see". Adam seemed better on the diet though the number of loose stools only went down, the problem did not end there. I kept him on a strict diet for 3.5 years in the course of which he was tested every half year, always with a negative result, no anemia, perfect blood test. When he was about five we were told to reintroduce gluten and half-yearly tests continued. Sudenly he shot up in height and generally seemed happier. We thought he was fine. The tests were always spotless untill the last, two years after reintroducing gluten. The TTg was 300+! I couldn't believe it and tested him myself with the prick test which came also positive

We do not have any gluten products at home and his antibodies are OK, i.e. within norm.

I should add that we live in the Czech Republic and I'm Czech.

Alena