Jump to content
  • You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

Is He Faking This?


mdzplus2

Recommended Posts

mdzplus2 Rookie

Homeschooling may end up being an option. I think on Monday I'll talk to the counselling office at school about the 504 Plan.

thanks!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



mdzplus2 Rookie
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.

I've been discussing this with him the last few days. Well, not the soy but definitely the casein. We'll try something new after we see the GI on Monday afternoon.

mdzplus2 Rookie
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!!!!! :blink: 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!!

This was really helpful to me. Actually since reading all the replies to this posting I have finally made up my mind to completely believe him about his health from here on out. No more doubts. I actually did a chart to sort through the eventual outcomes of the four possible scenarios: he is being honest and we believe him, he is being honest and we don't believe him, he is being dishonest and we believe him, he is being dishonest and we don't believe him. The only one that has any chance of having him grow into a healthy happy adult, as far as I can see, is clearly 'he is being honest and we believe him'. So I am now committed to believing him. But that said, how then do I deal with my guilt and sympathy? Do you ever feel that you baby or over empathize with your son because of his health problems? Thanks so much for sharing your story.

kbtoyssni Contributor

I agree that the Taco Bell probably has to go. From what I've heard, I wouldn't ever eat anything there.

Other food intolerances are a possiblity. My peanut intolerance feels just like a glutening.

What about possible risks at school? Lunchroom tables are likely to have crumbs all over them. If kids are allowed to eat in the classroom and then touch the class computer, the keyboard could be contaiminated. I read about someone who had to send soap for the entire kindergarten class (I think this was for a soy allergy, wheat in bulk soap is pretty uncommmon). Or if he has a home-ec type class, there may be flour particles from cooking. You might want to meet with his teachers to discuss if it's possible there's something glutening him at school. It might also be good to ask if there is something else going on (bullying, the class is too hard, doesn't like the teacher, etc).

ARK Apprentice
So I am now committed to believing him. But that said, how then do I deal with my guilt and sympathy? Do you ever feel that you baby or over empathize with your son because of his health problems? Thanks so much for sharing your story.

I think it was really smart of you to just commit yourself to believing him, because it is probably the best thing for yalls relationship.

Hopefully your complete faith in him will encourage him to always be totally honest. I make sure that my son hears me telling other people (like relatives) how honest he is, and trustworthy. And he really is! But, I believe that he really wants to live up to our trust, if that makes sense...

OTOH, I am sure he has exaggerated how bad he feels more than once. He's human!

As far as guilt and sympathy.... what do you feel guilty about? It's not your fault he is sick! Even if you are gluten intolerant too, and he "got it from you", it's STILL NOT YOUR FAULT!

I am so incredibly sorry that my son seems to have gotten this from my side of the family, although the gene test showed that he has one gene from each parent. It's MY side of the family that has the most problems.

I have one sister who we knew had celiac, and that is why my son got a diagnosis within months instead of years. In the last couple months, another sister has done a trial gluten-free diet, and found out she feels WAAAY better when she is gluten free. She is undergoing some testing right now.

I have a brother who just received his Enterolab results 2 days ago. He is in BAD shape and needs to stay FAR from gluten! I have TWO nieces who are waiting on test results. And lastly, I myself feel better off gluten as well. I have 6 brothers and sisters as well as our parents who ought to be tested!

It's really strange that we are all finding out at once that there is a huge problem with gluten in this family, but it is actually due to the first 2 people being diagnosed, or no one else would have realized the problem.

Sympathy: I read on another board about a kid who had cancer and they spoiled her ROTTEN out of sympathy, and when she recovered from it she was a horrible brat and the mother was terribly distressed. SO GLAD that the daughter was in remission, but the kid was now terribly self centered and bratty. That really made me think.

First of all, I am REALLY thankful that celiac is not a life threatening disease as long as we dont eat gluten. But, some days my son is SO sick, that he literally cant do anything. He has a lot of physical pain as well as brain fog, so I am learning to live with a chronically ill child. He is really depressed over all this as well. I have been called a "meanie" (jokingly) by my mom because I still make him earn his computer time, and if he has a bad attitude he loses computer time as well as any TV priveleges. My mom really was just teasing me, and she supports us totally in the decision to continue working on character issues during this illness. What better time? Even as adults we cant just treat everyone like crap because we feel bad, so he needs to learn these lessons NOW.

I am trying to walk a fine line between sympathy for his pain, and "feeling sorry for him" which leads to self pity. If he says "My stomach is killing me" I will say, "I'm sorry... did you eat some yogurt? Why dont you go rest awhile and see if it gets better." or something like that. He HATES to go lie down and rest but sometimes he has not got the strength to do anything else. We really do have to get schoolwork done so there is NO TV allowed during the day. Rarely, he can watch an educational video if he feels REALLY rotten. But, usually he will lay on the recliner and listed to his history CDs.

So, I do let him know I am sorry he feels so bad, but I try not to pity him. There is a big difference. He hates to feel pity from some certain people we know who just absolutely PITY him and fawn all over him with a million questions about how he feels and how AWFUL it must be! OH, poor boy! This is just TERRIBLE! You must be so SICK OF IT! etc, etc.... ugh. He BEGS me to change the subject if someone brings up his health. When those people come over, he greets them pleasantly, then disappears, with my permission.

I try hard not to baby him, but I probably do do it some.... my husband doesnt baby him at all, and I can see how good that is for him. When DH gets off work, is our son is feeling good enough to help with outside work, then he is expected to help for as long as he can. It helps with the depression a lot to get outside.

We have LOTS of animals, and DS's job is to keep all the water containers filled. He was feeding the pigs and occasionally the goats until just recently I realized he could be getting glutened from their feed....

WEll, sorry to write a whole BOOK on this subject! I hope you are able to figure out why Zachary is still feeling bad and come to a solution regarding school. I know homeschooling is not the ideal answer for every family, but for us it has been an absolute blessing!

ARK

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to glucel's topic in Super Sensitive People
      17

      iron digestibility

    2. - glucel replied to glucel's topic in Super Sensitive People
      17

      iron digestibility

    3. - Scott Adams commented on Scott Adams's article in Latest Research
      3

      New Research Reveals How Antibody Genes May Shape the Immune Response in Celiac Disease

    4. - knitty kitty replied to Bogger's topic in Related Issues & Disorders
      6

      Osteoporosis: Does the body start rebuilding bones after starting a gluten-free diet?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      134,003
    • Most Online (within 30 mins)
      10,442

    michelinagiggles
    Newest Member
    michelinagiggles
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • knitty kitty
      @glucel,  There's a strong correlation between thiamine deficiency, hypoxia, and insomnia.  Thiamine is needed to help red blood cells carry oxygen.  In thiamine deficiency, hypoxia (lack of oxygen in tissues) occurs, and this can result in insomnia. Hypoxia causes systemic inflammation, increases inflammatory markers, and is associated with cardiovascular events.  Curiously, thiamine deficiency is correlated with excessive daytime sleepiness and oversleeping.   I found a combination of Tryptophan, Pyridoxine B 6, magnesium, and L-theanine works very well for inducing sleep.  Sometimes, I add Passion Flower Extract and/or Sweet Melissa.  There's no side effects the next morning with Passion Flower, it just induces sleepiness.  Sweet Melissa is groovy, and has anti-inflammatory effects on the digestive system.   I prefer to take 250 mg Benfotiamine and 100 mg Thiamine TTFD in the mornings and another dose of Benfotiamine at lunch.  I try not to take any thiamine after four p.m. because it keeps my brain so energized and wanting to think... Oh, I do take a combination of another form of thiamine (sulbutiamine), Pyridoxine and Cobalamine for a pain reliever sometimes, but I can sleep after taking that.  But thiamine does help regulate circadian rhythm.   Make sure you're getting Omega Three fats! They'll help you satisfy that late night carb craving with fewer carbs.  Flaxseed oil, olive oil, sunflower seed oil.  Nuts and nut butters, like walnuts and cashews, are good, too, if you can tolerate them.    Try taking the 100mg thiamine HCl before your aerobics and see if there's a difference.  Sweet dreams! References: Network Pharmacology Analysis of the Potential Pharmacological Mechanism of a Sleep Cocktail. ......(Skip to Section Four) https://pmc.ncbi.nlm.nih.gov/articles/PMC11201840/ Effects of Melissa officinalis Phytosome on Sleep Quality: Results of a Prospective, Double-Blind, Placebo-Controlled, and Cross-Over Study https://pubmed.ncbi.nlm.nih.gov/39683592/
    • glucel
      Thanks to everybody for your help. I reread the dr's notes from the biopsy procedure and it seems I had worse than atrofied villi. It was termed flattened mucosa. So while iron ferratin levels are normal my bet is, as kitty alluded to, iron not getting into cells. I have dr appointment next mo but don't hold out a lot of hope, There is strong correlation of low red blood cells and insomnia so at least I finally solved that one after few yrs of being mislead. I intend to take stop taking 100 mg b1 at noon time and start 150 mg benfotiamin. I may or may not add the the 100 mg b1evening meal. BTW, last night had 1/3 lb beef. potato then 2 bowls cereal and an apple later in the eve. I generally do my areobics before supper so maybe that contributes to the hunger.  
    • knitty kitty
      I have osteoporosis and have crushed three vertebrae.  I supplement with Lysine, Tryptophan, threonine, calcium, Boron, Vitamins D, A, and K, and the B vitamins (folate, B12, and Thiamine B1 especially for bone health).   I tried Fosomax, but it tore up my insides.  I prefer the supplements.  I feel better and my bones feel stronger.   References: A composite protein enriched with threonine, lysine, and tryptophan improves osteoporosis by modulating the composition and metabolism of the gut microbiota https://pubmed.ncbi.nlm.nih.gov/41915427/
    • knitty kitty
      @Aileen Cregan, I was put on high blood pressure medication, too. But I was able to correct my high blood pressure by supplementing with Thiamine Vitamin B 1.  I am no longer on high blood pressure medication.  I feel much better without the medication. I continue to supplement Thiamine in the form Benfotiamine.   The particular high blood pressure medication I took was Norvasc (amlodipine), which causes thiamine deficiency by blocking thiamine transporters so that thiamine cannot enter cells.  Benfotiamine can get into cells by merging with the cell membrane, thus bypassing nonfunctional thiamine transporters.   Indapamide also blocks thiamine transporters! The use of this type of medications that block thiamine precipitated Wernickes Encephalopathy.  My doctors did not recognize the connection to Thiamine deficiency.  I nearly died.   Talk to your doctor and dietician about supplementing with Benfotiamine, a fat soluble form of thiamine that bypasses thiamine transporters.  Ask for an Erythrocyte Transketolace Activity Assay to check your thiamine levels asap.  Routine blood tests for thiamine are not an accurate measure of  thiamine in the body.   Absorption of essential vitamins like Thiamine is altered in Celiac Disease due to damaged villi, inflammation and dysbiosis.  The Gluten Free diet can be lacking in vitamins and minerals.  Discuss supplementing with all the eight B vitamins,  the four fat soluble vitamins and necessary minerals. Please keep us posted on your progress! References: Drug-nutrient interactions: discovering prescription drug inhibitors of the thiamine transporter ThTR-2 (SLC19A3) https://pubmed.ncbi.nlm.nih.gov/31764942/ The Pivotal Role of Thiamine Supplementation in Counteracting Cardiometabolic Dysfunctions Associated with Thiamine Deficiency https://pmc.ncbi.nlm.nih.gov/articles/PMC11988323/
    • knitty kitty
      Hi, @Sue7171, I thought you might be interested in this article about Lyme disease and the discussion after the article.   I found this article enlightening.  The finding that not only can alpha gal be problematic, but advantageous infection with Staph aureus can be problematic.   The Acari Hypothesis, VII: accounting for the comorbidity of allergy with other contemporary medical conditions, especially metabolic syndrome https://pmc.ncbi.nlm.nih.gov/articles/PMC11983536/  
×
×
  • Create New...