Jump to content

  • Welcome to Celiac.com!

    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):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Is He Faking This?

mdzplus2

Recommended Posts

mdzplus2 Rookie
mdzplus2
Posted
  • Author

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
mdzplus2
Posted
  • Author
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
mdzplus2
Posted
  • Author
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
kbtoyssni
Posted

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
ARK
Posted
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.

Go to topic listing

  • 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
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      @Jane02, I hear you about the kale and collard greens. I don't do dairy and must eat green leafies, too, to get sufficient calcium. I must be very careful because some calcium supplements are made from ground up crustacean shells. When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly. This is safe...
    2. Jane02
      - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency. I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently...
    3. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Hello, @Jane02, I take Naturewise D 3. It contains olive oil. Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets. Fractionated coconut oil is not the same as coconut oil used for cooking. Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the...
    4. Scott Adams
      0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

      until
      Hello! Join me and treat yourself to a four-day, three-night restorative gluten-free retreat in a peaceful, private coastal retreat setting near Penobscot Bay in Maine. Dates: April 10-13, 2026 Enjoy engaging classes...
    5. Scott Adams
      - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,329
    • Most Online (within 30 mins)
      7,748
    klkarius
    Newest Member
    klkarius
    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)

  • Upcoming Events

  • Posts

    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Scott Adams · Posted

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By trents · Posted

      Contact them.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.