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

I Suspect My Son Has Celiac

russtay1

By russtay1
in Coping with Celiac Disease

Recommended Posts

russtay1 Rookie
russtay1
Posted

I think I am looking for moral support. I don't think I can get my 16 year old to listen at this point. So let me worry a little bit and I will be patient with him.

History - First, I have celiac and am gluten-free. I was always weak and starving... ate all the time and was obese. Gluten-free now, my brain works again and I have energy.

My son has had intestinal problems his entire life. He had rectal ulcers and then a rectal prolapse that require surgery to correct (8th grade). He then had a bout of ITP. ITP is short for a very long name but means very low blood platelet count. His was extremely low and he required transfusions for many days at a time. I think it is an autoimmune disorder. It came and went away over a period of a few months...terrifying. He still has intestinal upset but nothing too troublesome.

So, this is a teen who has seen enough of the medical community. He will not discuss getting tested for gluten intolerance. He says he is fine. But his family history, his autoimmune history and his "intestinal" history scare me. I have seen first hand the incredible impact going gluten-free has had on me... and I didn't realize this until I was in my 40's. I don't want him to always feel tired and mentally slow. I see this in him. He argues that he is fine.

I may bring this up at his annual physical (while he is still young enough for me to be in the room!). Maybe the blood test will be positive (mine wasn't). I worry his blood test will be negative and he will never try a gluten-free diet.

I know... worry, worry, worry.... this does me no good. But maybe I can convince him to try it eventually. He wants to be a powerhouse, lean body guy.. but I think he doesn't have the energy. If I can convince him to TRY gluten-free... he may feel stronger.

He eats gluten in every meal. Cereal, cereal, sandwiches, pizza, and so on and so on. Did I mention cereal? Several boxes a week! So gluten-free would be a big challenge for him.

Now that I have written all this, I hesitate to post. What good does all this worrying do? I'll post it anyway.

:rolleyes:

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

Celiac.com Sponsor (A8-M):


confused Community Regular
confused
Posted
I think I am looking for moral support. I don't think I can get my 16 year old to listen at this point. So let me worry a little bit and I will be patient with him.

History - First, I have celiac and am gluten-free. I was always weak and starving... ate all the time and was obese. Gluten-free now, my brain works again and I have energy.

My son has had intestinal problems his entire life. He had rectal ulcers and then a rectal prolapse that require surgery to correct (8th grade). He then had a bout of ITP. ITP is short for a very long name but means very low blood platelet count. His was extremely low and he required transfusions for many days at a time. I think it is an autoimmune disorder. It came and went away over a period of a few months...terrifying. He still has intestinal upset but nothing too troublesome.

So, this is a teen who has seen enough of the medical community. He will not discuss getting tested for gluten intolerance. He says he is fine. But his family history, his autoimmune history and his "intestinal" history scare me. I have seen first hand the incredible impact going gluten-free has had on me... and I didn't realize this until I was in my 40's. I don't want him to always feel tired and mentally slow. I see this in him. He argues that he is fine.

I may bring this up at his annual physical (while he is still young enough for me to be in the room!). Maybe the blood test will be positive (mine wasn't). I worry his blood test will be negative and he will never try a gluten-free diet.

I know... worry, worry, worry.... this does me no good. But maybe I can convince him to try it eventually. He wants to be a powerhouse, lean body guy.. but I think he doesn't have the energy. If I can convince him to TRY gluten-free... he may feel stronger.

He eats gluten in every meal. Cereal, cereal, sandwiches, pizza, and so on and so on. Did I mention cereal? Several boxes a week! So gluten-free would be a big challenge for him.

Now that I have written all this, I hesitate to post. What good does all this worrying do? I'll post it anyway.

:rolleyes:

Well i so know what u are going threw. My son(step) has had problems that i feel is celiac. He is always tired, bloated, brain fog, mouth sores and he had an high IgG level. I have been fighting with him for weeks to be gluten free, and he sneaks stuff all the time. When i was watching and making sure what he was eating was gluten free, he was doing so much better, even his teachers noticed he was doing better. But with in days he was eating gluten again, and the mouth sores and crankiness all returned. I can not get him to figure out that he needs to be gluten free. I am currently gluten free, so we have lots of stuff in the house that he can eat, but he will eat the stuff that is not good for him.

I so know about the cereal, he can eat cereal all the time. I try to keep stocked on fruity pebbles and cocoa pebbles, but he will eat the other stuff when im not looking and blame it on the other kids.

My step son is 13 and it is so hard.

Maybe we can chat sometime and try to figure this out together. there isnt a night that goes by that i dont cry and wish he would take me seriously. I know he needs to stay gluten free, but to get him to know that is so hard.

paula

NoGluGirl Contributor
NoGluGirl
Posted

Dear russtay and confused,

Perhaps some reverse Psychology would do the trick. It is amazing how it works. You need to keep in mind as a teenager, their primary reaction to everything is to rebel. They really are not intending to be difficult, it is just they need to feel in control. They feel like you are trying to run their lives.

You see, when I was a teenager, that is how I felt. My parents were convinced (and still are) that I just am difficult, inappreciative, etc. Of course you guys probably never forgot to pay the water bill when you actually had the money for once when in three hours 8th grade graduation party guests were coming. Nor did you forget to pick up your 8th grader from school and leave her there all day when she was supposed to be home sick. And let's not forget when I had broncchitis being forced to leave the room so that my mother could hear her freaking show because my coughing was too loud. :angry:

You need to allow your teens to feel they have a part in this. They need to have the right to make decisions. You need to understand they want you to realize they are nearly adults. It is good you care and want to protect them, but also they just want to be understood. That is all I ever have wanted from my family. Due to this, I have come to the conclusion, I would be better off as an orphan! :lol:

Sincerely,

NoGluGirl

happygirl Collaborator
happygirl
Posted

Ask your doctor to test him (full Celiac blood panel), as well as run the gene test, to determine if he has one of the Celiac genes.

Since he is not 18, it is your job to protect him. Better now to get him tested while you have a say in all this!

Phyllis28 Apprentice
Phyllis28
Posted

I agree with HappyGirl. Have him tested for Celiac while he is still under 18.

Generic Apprentice
Generic
Posted

I can recommend a couple of things. I was a teenage celiac. The things that kept me from eating gluten was schizophrenia, MS and it made me sick as heck. I didn't want to be in a wheelchair and hearing voices in my head. And now stomach cancer is also linked to celiac.

You could have the full blood panel done, if it comes back negative, pursue an endoscopy. Or you could lie about the results and say the Dr. said he has to go gluten free, due to the results being inconclusive.

You could also go the route of threatening to attend class and go everywhere with him to make sure he doesn't eat anything with gluten. Show the side of "really controlling his life".

super-sally888 Contributor
super-sally888
Posted

Have you tried giving him information. Ask him to read it and then discuss it with him, in relation to his symptoms. If he still thinks its not relevant to him, then he is not going to stick with the diet, whatever you say. Maybe he needs to feel he is the one making this decision. If he decides not to, then at least he has read all the info and can come back to it later...

However, I do agree that you should have him tested while you can. Hopefully everything is positive and then you have some proof... but still the decision to stick to the diet or not will be up to him.

Can you have your house completely gluten free? That won't protect him outside, but will at least partially cut down the gluten he is getting.

What a toughie.

Best wishes

Sally

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

Celiac.com Sponsor (A8-M):


NoGluGirl Contributor
NoGluGirl
Posted

Dear Generic,

Now that is a good idea! Drive him crazy! :P Then he will have to do it. I have dealt with gluten making me terribly ill all this time. Finally, my doc said I am Celiac. I had digestive problems and immunity issues from the time I was born!

However, I must say that the blood work and biopsies may do no good. If the docs do not know what they are looking for, they could tell you he is fine. That is what I think happened to me. My bloodwork and biopsies were supposedly negative. Yet, even a microscopic amount of gluten makes me violently ill. I start breaking out in a sweat, get terribly nauseated, my hands start shaking, sometimes they go numb, get diarrhea, and have to hurry up and swallow a promethazine before the dry heaves start. Which, by the way, happened to me this morning. I live in a house with two non gluten free people, so cross-contamination is a major problem.

Sincerely,

NoGluGirl

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. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Related Issues & Disorders
      20

      My only proof

      Thus has got to STOP , medical bit believing us! I literally went through 31 years thinking it was just a food allergy as its downplayed by medical if THEY weren't the ones who diagnosed us! Im positive for HLA-DQ2 which is first celiac patient per Iran and Turkey. Here in the States especially in Cali its why do you feel that way? Why do you think your celiac...
    2. knitty kitty
      - knitty kitty replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      44

      Supplements for those Diagnosed with Celiac Disease

      @Scatterbrain, Thiamine Vitamin B1 and amino acid Taurine work together. Our bodies can make Taurine from meats consumed. Our bodies cannot make Thiamine and must consume thiamine from food. Meat is the best source of B vitamins like Thiamine. Vegetarians may not make sufficient taurine since they don't eat meat sources of taurine...
    3. knitty kitty
      - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      20

      My only proof

      @Jmartes71, I went to Doterra's site and had a look around. The Doterra TerraZyme supplement really jumped out at me. Since we, as Celiacs, often have digestive problems, I looked at the ingredients. The majority of the enzymes in this supplement are made using black mold, Aspergillus! Other enzymes are made by yeast Saccharomyces! Considering...
    4. Scott Adams
      - Scott Adams commented on Scott Adams's article in Additional Concerns
      2

      Gluten Transfer from Biodegradable Tableware: What a New Study Found and Why It Matters (+Video)

      Thanks for mentioning this, and here is an older article on the topic:
    5. Scott Adams
      - Scott Adams commented on Scott Adams's article in Gluten-Free Grains and Flours
      18

      Cricket Flour Makes Really Good Gluten-Free Bread

      Your concern about certified gluten-free cricket powder is completely valid, as cross-contamination in both feedstock and processing is a real issue. Currently, the availability of certified gluten-free options is limited, but brands like Chapul and Entomo Farms, which I believe have offered products processed in dedicated facilities and labeled gluten-free...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,542
    • Most Online (within 30 mins)
      7,748
    CC324
    Newest Member
    CC324
    Joined
  • Celiac.com Sponsor (A20):

  • Celiac.com Sponsor (A22):



  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      Thus has got to STOP , medical bit believing us! I literally went through 31 years thinking it was just a food allergy as its downplayed by medical if THEY weren't the ones who diagnosed us! Im positive for HLA-DQ2 which is first celiac patient per Iran and Turkey. Here in the States especially in Cali its why do you feel that way? Why do you think your celiac? Your not eating gluten so its something else.Medical caused me depression. I thought I was safe with my former pcp for 25 years considering i thought everything I went through and going through will be available when I get fired again for health. Health not write-ups my health always come back when you're better.Im not and being tossed away at no fault to my own other than shitty genes.I was denied disability because person said he didn't know how to classify me! I said Im celiac, i have ibs, hernia, sciatica, high blood pressure, in constant pain have skin and eye issues and menopause intensified everything. With that my celiac nightmare began to reprove my disregarded disease to a bunch of clowns who think they are my careteam when they said I didn't have...I feel Im still breathing so I can fight this so no body else has to deal with this nightmare. Starting over with " new care team" and waisting more time on why I think I am when diagnosed in 1994 before food eliminated from my diet. P.s everything i went through I did write to medical board, so pretty sure I will continue to have a hard time.
    • knitty kitty
      Supplements for those Diagnosed with Celiac Disease

      By knitty kitty · Posted

      @Scatterbrain, Thiamine Vitamin B1 and amino acid Taurine work together.  Our bodies can make Taurine from meats consumed.  Our bodies cannot make Thiamine and must consume thiamine from food.  Meat is the best source of B vitamins like Thiamine.   Vegetarians may not make sufficient taurine since they don't eat meat sources of taurine.  Seaweed is the best vegetarian source of taurine. Vegetarians may not consume sufficient Thiamine since few veggies are good sources.  Whole grains, legumes, and nuts and seeds contain thiamine.  Many of these sources can be hard to digest and absorb for people with Celiac disease.   You may find taking the forms of thiamine called Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) and a B Complex will give the benefits you're looking for better than taurine alone.  
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      @Jmartes71, I went to Doterra's site and had a look around.  The Doterra TerraZyme supplement really jumped out at me.  Since we, as Celiacs, often have digestive problems, I looked at the ingredients.  The majority of the enzymes in this supplement are made using black mold, Aspergillus!  Other enzymes are made by yeast Saccharomyces!  Considering the fact that Celiac often have permeable intestines (leaky gut syndrome), I would be very hesitant to take a product like this.  Although there may not be live black mold or yeast in the product, the enzymes may still cause an immune system response which would definitely cause inflammation throughout the body.   Skin, eyes, and intestines are all made from the same basic type of cells.  Your skin on the outside and eyes can reflect how irritated the intestines are on the inside.  Our skin, eyes, and intestines all need the same vitamins and nutrients to be healthy:  Vitamin A, Niacin B3 and Tryptophan, Riboflavin B2, Biotin B7, Vitamin C, and Omega Threes.  Remember that the eight B vitamins work together.  Just taking high doses of just one, vitamin like B12, can cause a deficiency in the others.  Taking high doses of B12 can mask a Folate B9 deficiency.  If you take B12, please take a B Complex, too.  Thiamine B1 can be taken in high doses safely without toxicity.  Thiamine is needed by itself to produce energy so every cell in the body can function, but Thiamine also works with the other B vitamins to make life sustaining enzymes and digestive enzymes.  Deficiencies in either Niacin, Vitamin C, or Thiamine can cause digestive problems resulting in Pellagra, Scurvy, and Gastrointestinal Beriberi.   If you change your diet, you will change your intestinal microbiome.  Following the Autoimmune Protocol Diet, a Paleo diet, will starve out SIBO bacteria.  Thiamine keeps bacteria in check so they don't get out of control as in SIBO.  Thiamine also keeps MOLDS and Yeasts from overgrowth.   Menopause symptoms and menstrual irregularities are symptomatic of low Vitamin D.   Doctors are not as knowledgeable about malnutrition as we need them to be.  A nutritionist or dietician would be more helpful.   Take control of your diet and nutrition.  Quit looking for a pill that's going to make you feel better overnight.  The Celiac journey is a marathon, not a sprint.   "Let food be your medicine, and let medicine be your food."
    • RUKen
      Are Lindt chocolate balls gluten free?

      By RUKen · Posted

      The Lindt (Lindor) dairy-free oat milk truffles are definitely gluten-free, and (last time I checked) so are the white chocolate truffles and the mint chocolate truffles. 
    • lmemsm
      Supplements for those Diagnosed with Celiac Disease

      By lmemsm · Posted

      I've used magnesium taurinate and magnesium taurate vitamins.  Didn't notice much of a difference when I used 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.