What happens when Andy and I eat things we shouldn't?

This is a rash on Andy's arm that he has been scratching at and I didn't catch right away.
These hives are just starting on his upper leg. They are super itchy.
This is a fungal rash from dairy products on my leg. The round appearance is a clue to it being fungal.
These are some itchy hives on my hand from eating gluten.

I am not really sure what is causing Andy's latest round of hives, but we have been fighting them for about 3 weeks now. I treat them with prescription ointment and they go away pretty quickly and the next morning a new crop pops up somewhere else. We are think we may have figured it out and that it is Bananas - but we are not really sure yet.

Change in Kirkman's Toothpaste Gel

If any of you are using the GFCF toothpaste gel from Kirkman's you should be aware that the formula has changed. It is still GFCF - but if you have a child like I do that is resistant to change - you might want to be aware that the taste is different.

When we bought our last tube of it, Andy decided he didn't like it - but since I don't use it myself - I thought Andy was just being Andy and rejecting something that he has always liked. I bought a couple of other types of nonflouride gfcf toothpastes, but he didn't like them either. So I gave told him that he just had to use one of them - no choice and I am pretty firm about things like this.

Well, then I went to Atlanta for a conference at work and was gone for 4 nights and Dan had to help him brush his teeth. He put on quite a stubborn front for Daddy and Dan calls me at the conference all upset. Andy refused to use any toothpaste and what should he do? I told him to pick his battles - Mommy is out of town - it is not going to be the end of the world if he brushes his teeth without toothpaste one or two nights - but Dan was not going to let Andy win on this - we recently put quite a bit of money into Andy's mouth with caps (because we wouldn't do the mercury filled analgram fillings) and Dan does not want the rest of Andy's teeth to rot. They had quite a blow out - but Daddy won and Andy brushed his teeth. When I got home I found a cabinet door pulled off in the bathroom - Andy had pulled in out in his fit and thrown it at his Daddy (didn't hit him). I had quite the talk with him about that not being acceptable behavior and we have kept the cabinet door off for the time being - to remind him to behave. He has been brushing his teeth with no complaints.

Yesterday I received an e-mail from a new friend in the UK (Karan) and she asked me if I had noticed any difference in the Kirkman's gel - her son with autism refuses to use it. I wrote back to her and told her that Andy had refused to use it at first but that I hadn't realized that it had changed - I thought Andy was just being Andy (bad mommy - how could I have not noticed?). I suggested that we both e-mail Kirkman's and ask them to change the formula back or make the old formula available to those of us with kids that don't like change.

Before I had a chance to send an e-mail to Kirkman's - she forwarded me her reply from them (boy they are speedy - great customer service there - even if we don't like what they conveyed).
Here is the response:
I spoke with Larry, our chemist, about the toothpast gel. Our old manufacturer has quit making the formula that you had before. We are unable to get the old formula back. The product number has changed. I was not aware that you had not had this formula before when I sent it out to you, or I would have told you about the changes. The new formula is not as sweet as the old formula. I apologize for the inconvenience. Also, we do not have any of the old products anywhere. Thank you very much. Again, I am very sorry.

So if you are currently using Kirkman's you might want to be aware when you order again. Hopefully you won't end up with a damaged bathroom like I did. Although now that we are past that I don't think I would want to go back to the old - he might have the same reaction!

My son was fed a regular muffin at school!

It has been almost 3 years since Andy was diagnosed with Celiac Disease. During those 3 years I have been most fortunate to not have too many problems with his diet. His schools and daycare have always taken it very seriously and I have always packed all of his food and provided bulk snacks for special occasions. In the past, they have either called before feeding him something or only fed him food provided by or approved by me. And Andy is very good about questioning what is set before him.

That is not to say that Andy has never had an infraction and consumed gluten (or dairy). Most of the time it is minor and it is something that I, myself have given him - either because I did not read the label as closely as I should have and missed something or because it was previously safe and I missed that they changed something in it - or it had hidden gluten and I neglected to call the manufacturer to check.

So I was quite surprised when Andy started showing signs that he had consumed gluten and even more surprised when I tracked the source down and found out that it was a muffin given to him by a paraprofessional (aide) assigned to work with him at school. But I think I handled the situation appropriately (I always worry if I am too much of a bitch about these things or too soft) and I feel pretty confident the situation has been resolved and won't happen again.

Here is the story from the beginning:

School started the day after Labor Day. The week before school started, the school had a meet and greet day where all of the kids come to school and meet their teachers and get aquainted with their new classrooms. Dan and I took Andy to that and took along a list for the new teacher of the foods that Andy could and couldn't have. We chatted briefly about it. Although I was offered a private time to bring Andy to see the classroom and talk with the teacher by the principal I turned that down and only attended the meet and greet. We were short staffed at work and getting out early for the meet and greet was all I felt I could handle.

In the written letter I had given the teacher with the list of foods was a request that I be kept informed of all food related activites in the classroom so I could provide alternative foods for Andy and an offer to send in bulk snacks to keep on hand. I assumed the letter had been read. On the first day of school I learned that the paraprofessional assigned to Andy's class was one that had worked with him the previous year in Kindergarten. I was thrilled. She was very good with him.

We continued to be short staffed at work. I sent Andy's lunch in daily with him and he has a button on his lunch box that says "I am on a special diet and can only have foods brought from home." With being so busy at work I overlooked the fact that it was a new school year and the teachers are overwhelmed with getting to know all of their children and I did not persue talk about the diet any further. I assumed everything was OK. I let my child down.

So we get through the first two weeks of school and I think everything is going well. When I picked Andy up from daycare on Friday (which I normally do not do, Dan does), his daycare teacher tells me that she thinks something happened at school because Andy was brought out to her by his PE teacher and it appeared that he had been being difficult - something about reading - and he had a meltdown - but she wasn't sure. That was sign number 1 of a gluten infraction - but the signs are easy to miss - he has plenty of meltdowns that have nothing to do with gluten.

I read his school communication notebook when I get home and there is nothing in there about an afternoon meltdown over reading. There is a note from his para saying that they had celebrated a birthday at school today and could I please send in some fruit snacks or something to keep on hand so he can have a treat in situations like this? It did not state that they had given him anything to eat.

He continues throughout the evening on Friday to fly off the handle very easily and lack self confidence. This was sign number 2. But again - nothing to really point to gluten. Dan does homework with him every night - even if there isn't any from the school. This time there was some from the school - luckily we had all weekend to get it done because he was not being very cooperative - couldn't even get him to try. All he would say was "I can't".

Sign number 3. The diarhea begins. He asks me to come and wipe his butt and I notice that his BM's are much softer than normal and ask him what he has eaten - how much fruit had he had today? (this kid loves fruit) I assume he has just been eating too much fruit. But 30 minutes later he is in the bathroom again and so it continued until bedtime. At this point I am starting to suspect he has consumed some gluten and I question him on what he has eaten that I didn't give him and he informs me that Mrs. C gave him a muffin - but that it was tiny and had no frosting on it. I wonder where she would have gotten a gluten free muffin from and question him further and he says he asked her if it was OK and she said it was. I decide he couldn't possibly be telling me the truth and start reading labels on everything in the house he has eaten. Mrs. C worked with him last year and certainly knows his dietary restrictions.

Signs number 4 & 5. He starts complaining that he has "growing pains" that his bones are hurting and his skin is itchy.

Signs number 6 & 7. He wakes up in the middle of the night terribly congested and with a cough full of phelgm. It would be easy to think he is just developing a cold, but with all of the other signs, it is pretty evident at this time that it is all related to the gluten.

All of this continued throughout the weekend. Sign number 8, the rash didn't appear until Tuesday - something it happens that way - he is itchy for several days before you see anything physical.

By Monday morning I was pretty sure that I wasn't going to find the source of the gluten this time. I wondered if he snuck something from another child - which he has never done before, but there is a first time for everything. But I kept coming back to the fact that he said Mrs. C had given him a muffin. I still wasn't believing it - if I had I would have gone into the school and talked to her - but I did write a note in his notebook asking if she had and if so, what type of muffin was it?

Monday evening I rush home from work so I can spend a little time with Andy before going to a PTA meeting. I read his notebook and find a note from Mrs. C. She had given him a muffin - it was a regular, gluten laden one - and she was sorry. I was stunned. I went to the PTA meeting and I actually sat right next to the principal, but I didn't say anything. It wasn't the time or place - and I hadn't fully processed it yet. Had I said something then I probably wouldn't have handled it as well.

I spent a pretty restless night on Monday wondering how best to proceed. I had to make sure this didn't happen again. But on the other hand I didn't want Mrs. C to get in trouble - she is very good with Andy and she did admit her mistake and she did apologize. I just want to make sure it doesn't happen again.

So I get up early on Tuesday as usual (I'm an early bird, always up at 5am). I print out information on Celiac Disease to send into the school and I wrote a long e-mail to the principal. I copied his teacher on the e-mail so she would know what I said and not feel I was going over her head - I just felt this needed to go up a level. If an aide that was really familar with Andy could make this mistake, what about the specialist that only spends time with him once a week or less? I needed to know that everyone who works with Andy knew about his diet. I needed some assurance that this would not happen again.

In the e-mail I tried to just lay out the facts. What had happened, what the long term effects of consuming gluten are, the symptoms that Andy had been experiencing and how unacceptable it was that he should have been given gluten by a staff member. I made it clear that I was not out to get anyone and an apology had been given but I needed assurance that it wouldn't happen again.

I feel I got that assurance. I just love our school and our principal. Somerset Elementary and Mary Bowman are the greatest. Mary called a meeting that day with all of the staff that works with Andy and she went over it with all of them. They all understand the importance of this. She then called our home and spoke with Dan and apologized to him. When I dropped Andy off at school on Wednesday morning I got apologies from his teacher, Mrs. C and the principal. I sincerely feel that they have taken this seriously and it won't happen again. They all feel bad.

It was a wake up call for all of us. Next year I will make sure I make as big of deal of his diet at the beginning of the school year as I did when he started Kindergarten. As a mom of a child with celiac, you just can't ever let your guard down.

Andy is doing better. His only lingering sign is a small rash and a cough (which is getting better daily). Gluten can take several weeks to leave the system. We are lucky that this appears to be working it's way through his system fairly quickly.

Andy had a bad day yesterday

Andy rarely has bad days at daycare (school is another story) and his bad days at daycare when they do occur are usually just normal kid stuff. The staff there really has trouble at times believing that he has autism.

Yesterday he was acting like he does when he has just a tiny bit of gluten (a lot of gluten produces bad tummy aches) - just being overall naughty - little things set him off into a major tirade - he gets angry and runs away and there is no talking to him - and he usually throws things - he cries easily and loudly - he has low self esteem and gets frustrated easily. I don't think I am describing it very well, but it is not a minor melt down, it is major. Not a pleasant thing to experience at home - really not cool in a room with 30 school age kids who wonder why he is acting like such a toddler.

The behavior continued at home all last night. It was too much. I shut him in his room for a period of time trying to get him to calm down and Dan retreated to the basement to try and calm down as well (Andy's episodes get on both of our nerves, but Dan has to remove himself from the situation - and that is OK - once Andy is calm, I take my break and Dan distracts him with a new activity).

So the detective work begins - what could be causing this behavior? I question everything he ate yesterday. I question if anyone shared food with him - he assures me he would not take food from another child. Wednesday is Dairy Queen Day at his daycare - he didn't have Dairy Queen, did he? No, he had his fruit cup that I had sent in. I re-read the labels on all of the foods that he had consumed at home looking for the culprit. Everything appeared to be OK.

Sometimes I never figure it out - but most times I do - it just takes awhile. I figured that I would question the daycare staff in the morning at drop off - his lead teacher is on vacation this week - maybe something slipped by.

Then bingo - the culprit is identified. As I was supervising his bedtime routine, he holds his hands out for inspection and tells me - "I played with play doh today" He goes on to tell me that he washed his hands really good afterward - do I see any play doh left? Yes, I do - under the nails. I determine that he did not use a nail brush and that he played with this play doh before he ate lunch (and he still eats mostly with his fingers). I ask him if a teacher assisted him with his hand washing or inspected his hands afterward. He tells me - No, Tracy isn't there this week and I just did it myself. Upon further questioning he reveals that he didn't tell the staff on purpose because they tend to "worry too much about those things and probably would not let him play with play doh again".

I will talk with the daycare this morning and send another nail brush in. And I guess I will rethink allowing Andy to play with play doh that is not gfcf. I just like him to be normal whenever possible - he has to have his special foods, but he shouldn't have to have special play doh as well. I may have to make up a batch of gfcf play doh tonight.

I will also talk to Andy today about how he acted yesterday and if he likes acting like that - and point out to him that the play doh was probably the culprit. I will let him help me make the decision - do we ban play doh? Make gfcf? or wash his hands better. He always is more likely to follow the rules when he has helped set them.

Life just isnt' fair for our kids.