Is He Faking This?

[mdzplus2]

I'm a first time poster so if I do this wrong, please be kind.

My 14 yr old DS was diagnosed last July after two and a half years of gastro symptoms. He went gluten-free right away and has been amazing about sticking with it. He has seldom even complained because he felt so much better after starting the diet. But now, all these months later, he still is not completely well. The pain he'd been in before is gone but he still misses days from school frequently with many of the same sort of vague symptoms that had become his trademark before.

His new GI has started him on a month of Levsin and I've added Lactaid and Acidophilus Pearls and this has been administered for about 3 weeks now. But he stayed home today with a headache, muscle aches, neck pain, nausea. Is it flu? No vomiting, great appetite. I feel so guilty about this diagnosis, both my delay in getting him in for testing, as well as the difficult road ahead for him, that last semester I ended up letting him miss so many days of school that he almost got kicked out. And this was after the diet began. I just wonder though. I can't help but wonder if, after three years now of being sick almost constantly, it has just become who he is. I feel like the parent of a chronically ill child who is never really well. I hate what it is doing to us. My suspicions, his denials, our mutual anger and distrust at really a critical time in his life both by his age and with this diagnosis. He wants to exert his independence from me but suddenly can't eat without my direct involvement seemingly.

Any advice?

[celiacgirls]

This is probably not what you want to hear but my guess would be either he is still getting gluten from somewhere, possibly in cross contamination or shampoo or other products, or he has another intolerance as well as gluten.

My daughter was gluten free before the rest of us and she would complain after eating food that was supposed to be gluten free. I never really considered cc. Since going gluten-free myself, I know firsthand that some things that are supposed to be gluten-free have been contaminated.

Does he eat out? Restaurants are very risky for cc.

Is your kitchen gluten-free? If not, could he be getting cc'd at home? Not saying you need to go gluten-free at home necessarily but you do need to take steps to prevent cc.

Check the bath products he uses to make sure they are gluten-free.

If all of that is taken care of, then you might consider other intolerances. My daughter has had to also give up dairy and soy to completely get rid of her stomach problems.

One other thing to consider is that symptoms from a tiny mistake can last for several weeks at least.

[Generic]

I was diagnosed at 13 years old. (I'm 32 now). I still got very sick for years and years after. If it wasn't an accidental glutening it was the flu or a cold or food poisoning or ..... I litteraly got every illness that was contagious also. I can say from experience that this disease really runs your immune system throught the ringer.

The only thing that improved my health, was going to accupuncture. I have had about a year of pretty good health, since going. I had suffered since I was 2 before I was diagnosed.

You may consider looking into a 504 plan, throught the school. They can't throw him out, due to his illness, legally if you have the plan. They will have to work with you about the absences.

I know it is frusterating, I have been on both sides of this fence. I am in the process of getting my daughter diagnosed. I completely understand.

-Laurie

[Mtndog]

I was thinking cross-contamination too or gluten in some product he uses. 14 is a tough age, but unless something is going on at school (have you asked him if school is OK?) then it could be getting gluten from somewhere you don't suspect.

I've been gluten-free for 2 years and I still have days where I have those vague symptoms (the same as his). It was especially bad the first year. It does take awhile to heal too.

[ILOVEOMC]

Watch for any animal food he touches. My son is 13 and he always fed his fish at night and then sucked his thumb, until he and a friend read the label and found it had wheat in it. Just be aware of anything he touches especially if he tends to put his fingers in his mouth. Good luck!

[mdzplus2]

Does he eat out? Restaurants are very risky for cc.

Is your kitchen gluten-free? If not, could he be getting cc'd at home? Not saying you need to go gluten-free at home necessarily but you do need to take steps to prevent cc.

Check the bath products he uses to make sure they are gluten-free.

If all of that is taken care of, then you might consider other intolerances. My daughter has had to also give up dairy and soy to completely get rid of her stomach problems.

One other thing to consider is that symptoms from a tiny mistake can last for several weeks at least.

Thanks so much for your quick response. Our kitchen is very close to gluten-free and those items that are not gluten-free are closely managed, never cooked using gluten-free designated cookware, and are not things that DS would crave. Eating out has only consisted of the Steakbowl at TacoBell for a long time now. The bathroom products is where I'll go next. I think he is lactose intolerant since I've seen an improvement that I am attributing to the Lactaid.

Thanks so much for all the tips.

[mdzplus2]

  laurie@xtreme said:

I was diagnosed at 13 years old. (I'm 32 now). I still got very sick for years and years after. If it wasn't an accidental glutening it was the flu or a cold or food poisoning or ..... I litteraly got every illness that was contagious also. I can say from experience that this disease really runs your immune system throught the ringer.

The only thing that improved my health, was going to accupuncture. I have had about a year of pretty good health, since going. I had suffered since I was 2 before I was diagnosed.

You may consider looking into a 504 plan, throught the school. They can't throw him out, due to his illness, legally if you have the plan. They will have to work with you about the absences.

I know it is frusterating, I have been on both sides of this fence. I am in the process of getting my daughter diagnosed. I completely understand.

-Laurie

Boy, this hits really close to the mark with him. How awful to think now that he really may have several more years of this. How did you cope? May I ask, do you remember feeling better after going gluten-free at 13 but just never quite well or was it that you felt great then but then just kept getting every illness you were exposed to?

-Debbie

[mdzplus2]

[quote name='Mtndog' date='Feb 6 2007, 08:06 PM' post='266999']

I was thinking cross-contamination too or gluten in some product he uses. 14 is a tough age, but unless something is going on at school (have you asked him if school is OK?) then it could be getting gluten from somewhere you don't suspect.

I've been gluten-free for 2 years and I still have days where I have those vague symptoms (the same as his). It was especially bad the first year. It does take awhile to heal too.

[mdzplus2]

  ILOVEOMC said:

Watch for any animal food he touches. My son is 13 and he always fed his fish at night and then sucked his thumb, until he and a friend read the label and found it had wheat in it. Just be aware of anything he touches especially if he tends to put his fingers in his mouth. Good luck!

Thank you so much.

[Nantzie]

I've been gluten-free since Jan 2006, and just in the last month or so I've been having problems again (probably another intolerance). I would give him the benefit of the doubt. It can take a couple of years to be completely healed. Even then you're always at risk of getting glutened, which can take a couple weeks or more to recover from.

It's so hard to tell how someone else is feeling. I have a little bit of an "in" with my kids because we all have gluten issues. If we all get sick in a certain way, I know for sure we've been glutened. It must be really hard to have to guess all the time.

Nancy

[Rikki Tikki]

Just a thought, it took me almost 3 years to get better and then only because I was put on steriods for something else, maybe they should be looking at refactory sprue?

Hope he gets better

[2kids4me]

casein intolerance acts like glutening too.... look up some info on casein intolerance and see if it fits.

Casein is the protein in milk. Lactaid only deals with lactose intolerance.

Sandy

[Mtndog]

I was thinking about animal food and such too...even my dog and cats are gluten free. Another problem could be at school if he's sitting at a table where other kids are eating sandwiches OR if he's getting food from the cafeteria line.

It must be really frustrating for you (and him too) but it really does take time to heal. i went through a "honeymoon phase" where after eliminating gluten I felt GREAT! But then, the little stuff like CC and body products etc got me. It was a long learning curve. I also realized about a year later that i was legume intolerant- no soy, peanuts and beans.

[gfp]

This splits up into two neat categories....

  celiacgirls said:

This is probably not what you want to hear but my guess would be either he is still getting gluten from somewhere, possibly in cross contamination or shampoo or other products, or he has another intolerance as well as gluten.

....

I couldn't agree more including the part not quoted....

The second one ... I even hesitate to say but considering your dilemna I am going to say it anyway and everyone will think I'm a complete idiot... my only defense being I was really young!

As a kid I suffered from tonsillites ... but really not that badly... however I hated school completely and utterly.

I can't really express how much I hated it except to say as a 5-6 year old I would rather do household chores than go to school by a very long margin and boy did I hate chores.

However tonsilites developed into a pattern and got me off school much quicker than belly ache which looking back I suffered more completely (hardly surprising now I look back) but mom was much less likely to pack me off to school if I had a sore throat than belly ache...

In most of the caees the tonsilites wasn't even genuine or if it was it was over exagerated.... whereas the belly ache was but even when I exagerated the belly ache by deliberatly making myself sick I still got packed off to school.... I guess because once or twice the Dr. had confirmed tonsilites.

Well my frequent tonsilites was cause for concern, even though in many cases it magically cleared up before the Dr. saw it... and neither ws I against rubbing my throat with a toothbrush until it bled... so from my mothers perspective she would make an appointment because I was spitting out blood then by the time I got to the Dr. all he would see was a really inflamed throat... it worked far better than I expected (I told you I was stupid) with me having a tonsilectomy... of course by this time it was no good protesting and I had furnished the evidence myself.... but now I needed another excuse....

Just to demonstrate how much I hated school our neighbours but one had a daughter my age and I remember one time getting her to spit and cough over my toast so I could be ill. The thing is I wasn't bullied or anything at school, indeed for the most part I was just ignored and if anything bullied less than anyone because people were genuinely terrified of me because on the occaisions people did try and bully me I totally freaked out (and I mean totally and utterly) I still hate being touched at all by people I am not very close to .... but anyone actually shoving me around or hitting me got much much worse than they deserved pretty much regardless of size or how much I got hurt in the process.

Whenever I tried to bring up not going to school it was a non-debatable subject unless I had my magic tonsilites. I nver actually had it in me to pick on anyone else but I used my freaking out as another way to get sent home and suspended and if anyone ever did pick on me I made sure the damage I did was enough to get me sent home for as long as possible.

If as Mtndog says something is happening at school (or in my case I just detested school full stop) you could be getting yourself worked up over the wrong thing.... However since I was already doing this at 5-6 and he's now 14 he's going to be a lot more difficult to get this out of unless you are really transparently upfront and willing to deal with the issue which is hardly going to be easy....regardless of how much you care!

However one thing is at this age they can see and end... I never actually got to liking school ever.... when I was in my early 20's I had to go into a school (summer work for a playground equipment manufacturing company) and I was upset (shaking, nausia and cold seats) from stepping close to the school so much I physically vomited. I guess this could be a hangover from what I used to feel everyday... who knows... (and I really don't want to find out, somethings are best left alone)

Its actually distressing for me to write this post... but considering your dilemna I'll push on... Im a big boy now...

Anyway ... the solution was two fold... firstly I had a nasty experience working part time which made me worry. Up to this point I had deliberatly screwed my grades in the hope I would get sent to a different school (I had lots of friends where I lived which wa quite a distance from my school and the only one of this group whom went to this school)

The second thing was my father (who had been absent more or less from 11-14) made me a deal.

The deal was I got my grades anyway I could.... I had to attend school the minimum but so long as I was in the top 5% of the school on average I was allowed to skip school ...

I never worked so freakin hard in my life! and my entire motivation was keeping out of school.

I went from the very bottom set out of 9 to top in my year in several subjects in a single semester in all exams.

I am academically quite good but that what wasn't made me top of the year..... I literally worked my ass off I did more study and revision in the first semester than I had in the entire time up to that semester.

When I got to 16 we take the exams to continue education or work ... I got straight A's in everything but history when I got a B+ (largely down to me changing to European economic history of the 18C to British social history of the 16-17C at the last minute (because I had been in lower sets the exams were different and the timetabling didn't fit)....

At 16 most people who continue education in the UK stay in school in what is termed 6 form to take "A" levels but again I managed a bargain and studied mine in a college for adult education ... most of the people were much older and returning to study after working and this fitted me fine... although it was a bit of a shock being dumped back in my age group at Uni...

I have no idea what options are open to you on this.... or if it is the problem not just CC ... only you can find that out but I think at 14 you are going to have to come up with a genuine deal....

[Generic]

[kbabe1968]

On the school side of it....is Homeschooling a possibility? K12 is everywhere, is "public school" it's just done at home, they provide computers, assignments, grading, etc. www.k12.org. That way, he can be at home and still be getting schoolwork done?

Not sure on the health side, it sounds like you're doing so much already.

Hope it gets better.

[Nantzie]

First of all, I'd cut out the Taco Bell for now. I know the allergen list says that it's gluten-free, but almost everything else has gluten in it, so he might be getting CC'd. In any fast-food (or any other ) restaurant there is always a chance of CC. Cut it out for now, then try it again in a few weeks.

Steve's right. It definitely could be something wrong at school. I was always trying to stay home, mostly because I was so exhausted, sometimes because I wasn't doing well in a class and sometimes because I was having an issue with a classmate. The exhaustion and concentration/memory problems I know now were gluten-related.

The hard thing is that there are always going to be times in one's life where the only person who knows the truth is you. Right before I found out about gluten, my husband told me I was a hypochondriac and I just wanted to be sick so people would feel sorry for me. He was really frustrated. All he could see was me sitting around not doing anything. He couldn't feel the pain I was in, and I certainly wasn't telling him about all the awful GI symptoms.

He feels bad about it now, but the truth is that this type of condition is invisible to people on the outside looking in.

There are two things that kept me at home most of the time, both of which are gross -

- Really awful gas, or the worry of having it. It was really bad and happened ALL the time.

- Diarrhea that happens so suddenly that I would have to RUN and push my kids out of the way to get to the bathroom in my own home, which is all of 10 feet away. There were times when I almost didn't make it. One second I was fine, the next second I was up and running. Some days this would happen 4-5 times, other days not at all. And I could never predict. I just had a queasy feeling in my stomach that always threatened it.

The worry of not knowing when it would happen (especially the diarrhea) kept me trapped in my house for almost three years. I couldn't even just take my kids (who were 1 and 2) to the store by myself because I was always worried that I was going to have an attack in the middle of the store.

Remembering my teenage years, having D or gas in the middle of class would have been social suicide. There's no coming back from something like that. Maybe he's worried about something like that happening.

There really is no way for you to know for sure if he's faking it to get out of school, which is always a possibility, or if he's really sick. It really hurt me when my husband and most of the rest of my family thought I was making it up. But at the same time, I spent a few days in my youth watching TV and hanging out at home because I conned my mom into thinking I was sick when I wasn't. My mom was pretty hard to fool though, so there weren't many of those.

I would really look into homeschool. School districts have a homeschool option, so it doesn't have to be this vague "outside the system" thing. They're designed for kids who are sick and can't attend school, or kids who are disabled to the point they can't attend school. Let them know that it takes a long time to recover from the effects of undiagnosed celiac, and that there are ups and downs that can't be predicted. Once he feels better, he just goes right back into school.

It also might be easier for you guys to help him heal because he won't be dealing with the possibility of CC all the time.

Nancy

[happygirl]

Welcome to the board!

I second the advice of stopping ANY eating out. I ONLY get glutened when eating out....so it was something that I just had to stop. Not fun, but was the only way for it to stop.

I would also recommend having his bloodwork (Celiac panel) run to see what his numbers are. This way, you have some idea of what is going on in his body (i.e., if his numbers are positive, there is a problem, because they should be negative by now, on a gluten-free diet).

I also would recommend looking into other food intolerances. Has he had a physical done lately?

Best of luck,

Laura

[ARK]

Wow, this really struck a chord with me...

...this will be brief since I've got to get up really early in the mornings so I have to go to bed ASAP.

I just want to encourage you.... I have a 14 yr old son who has only been diagnosed for a few months, and if he was in public school he would have missed SO MANY days by now!

I KNOW he is not faking it because if he doesnt do his schoolwork, he isnt allowed to play his one hour per day of computer games.

Some days, he has such bad brain fog, depression, joint/muscle pain and stomach pain that he cant do his school work or his chores and cant play computer.

He REALLY wants to play computer, and will try really hard to do his list. When he has good days, we double up on the schoolwork to try to catch up on everything he has missed over the past 6 months. When he has bad days he just lays in the living room listening to his history CDs.

I too, was one of those who hated school and exaggerated illnesses to get out of it. Mostly a sore throat, altho I never scrubbed it with a toothbrush!!!!! LOL It did work, my mum let me stay home a lot when I knew I wasnt really sick.

No one can know your kid like you do, and maybe you can find a way to see if he is being honest by using a reward system.

Our reward system (computer time) DOES backfire occasionally.... our son might be REALLY feeling bad, but pushing himself REALLY hard to get those chores done. He'll be fixing to fall over because he is in such pain but insisting he can work. I can always tell how bad it is though by whether or not he can spell. When he is in a brain fog, he forgets how to spell!!

Going to bed!

[Guest lorlyn]

  laurie@xtreme said:

I was diagnosed at 13 years old. (I'm 32 now). I still got very sick for years and years after. If it wasn't an accidental glutening it was the flu or a cold or food poisoning or ..... I litteraly got every illness that was contagious also. I can say from experience that this disease really runs your immune system throught the ringer.

The only thing that improved my health, was going to accupuncture. I have had about a year of pretty good health, since going. I had suffered since I was 2 before I was diagnosed.

You may consider looking into a 504 plan, throught the school. They can't throw him out, due to his illness, legally if you have the plan. They will have to work with you about the absences.

I know it is frusterating, I have been on both sides of this fence. I am in the process of getting my daughter diagnosed. I completely understand.

-Laurie

[Guest lorlyn]

what is the 504 plan

[Generic]

This is a link to one of the many sites. (copy and paste, since I don't know how to hyper link LOL). You can also do a google search, it will pop up allot of links.

Open Original Shared Link

From the site.

Section 504 is a civil rights law that prohibits discrimination against individuals with disabilities. Section 504 ensures that the child with a disability has equal access to an education. The child may receive accommodations and modifications.

Unlike the Individuals with Disabilities Education Act (IDEA), Section 504 does not require the school to provide an individualized educational program (IEP) that is designed to meet the child's unique needs and provides the child with educational benefit. Under Section 504, fewer procedural safeguards are available to children with disabilities and their parents than under IDEA.

[elisabet]

Hi,

My 14 years old son had the same problems,we had to eliminate diary products and soy.He is doing fine now.

Just try a gluten-free cf sf diet for 6 weeks and see how it works.

elisabet

[gfp]

  ARK said:

Wow, this really struck a chord with me...

...this will be brief since I've got to get up really early in the mornings so I have to go to bed ASAP.

I just want to encourage you.... I have a 14 yr old son who has only been diagnosed for a few months, and if he was in public school he would have missed SO MANY days by now!

I KNOW he is not faking it because if he doesnt do his schoolwork, he isnt allowed to play his one hour per day of computer games.

Some days, he has such bad brain fog, depression, joint/muscle pain and stomach pain that he cant do his school work or his chores and cant play computer.

He REALLY wants to play computer, and will try really hard to do his list. When he has good days, we double up on the schoolwork to try to catch up on everything he has missed over the past 6 months. When he has bad days he just lays in the living room listening to his history CDs.

I too, was one of those who hated school and exaggerated illnesses to get out of it. Mostly a sore throat, altho I never scrubbed it with a toothbrush!!!!! LOL It did work, my mum let me stay home a lot when I knew I wasnt really sick.

No one can know your kid like you do, and maybe you can find a way to see if he is being honest by using a reward system.

Our reward system (computer time) DOES backfire occasionally.... our son might be REALLY feeling bad, but pushing himself REALLY hard to get those chores done. He'll be fixing to fall over because he is in such pain but insisting he can work. I can always tell how bad it is though by whether or not he can spell. When he is in a brain fog, he forgets how to spell!!

Going to bed!

Wow, I feel a bit less stupid sharing that now, I did wonder but then I thought it best to share) Everyone seems to assume that kids who hate school are being bullied or some other big issue that should be obvious and although these are very important and shouldn't be scoffed at (I have friends who were bullied at school) there can be other deeper reasons. I really don't know exactly why I hated school so much, or why the college was perfectly acceptable (I actually enjoyed it)

Incidentally the comment about the spelling is probably spot on, most of the people I'm close to can spot the changes in my behavior when I'm glutened.

But this is only half the story ... its just as possible he is getting glutened and he has no issue with school other than the "social suicide" of D in class and not feeling well enough to concentrate. So don't get bogged down on this issue its just an alternative ...

[ARK]

  gfp said:

Wow, I feel a bit less stupid sharing that now, I did wonder but then I thought it best to share)

GFP, I'm glad you did share that!

It's ALWAYS in the back of my mind, and sometimes we do have suspicions about whether or not our son is "faking it", just like the original poster said.

I think we have it easier because we homeschool. We dont have to worry about CC at school, and we can double up on school work to catch up. He can do some of his studies from the recliner as long as there is no brain fog.

We NEVER eat out. I just cant keep the CC away when we do and it's not worth it. We do go to a lot of 4-H meetings, shows, etc, but I go to great effort to prepare all our food before hand and lug along a big ice chest.

Our son actually worked in the concession stand making hamburgers and didnt get sick because he wore gloves.