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

Need Help!

Simona19

Recommended Posts

Simona19 Collaborator
Simona19
Posted

Hi!

I had my son tested for the celiac disease. The result: positive. I'm waiting for his genetic test too. He is 19. years old. He don't want to go to gastroenterologist for the upper endoscopy. He is very scared. It is necessary to have that done? Can I just assume that because of me He would have the celiac disease too?

I was positive for the celiac disease on the small intestine biopsy - Marsh1, tested positive for wheat and milk allergy (the skin test), but my blood work came back negative(I was two weeks on gluten-free diet when I had my blood work done), and my genetic result is just half a gene DQ2(DQA*05).

Do I need to push my son to have the upper endoscopy? I don't know, if he will listen to me and stay away from gluten.

Any suggestion?

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

Celiac is very strongly genetic and it is very common for children to inherit the genes for it. The endo is a very simple procedure but if he doesn't want to have it done he doesn't have to. He does need to get on and stay on the diet though whether he gets the endo or not. Perhaps you can have him visit here, we have a lot of younger members who maybe can make him feel better about the diagnosis and give him some support from peer aged folks.

cassP Contributor
cassP
Posted

you said his blood test was positive. that's really all you and he need. HOWEVER, if he needs a biopsy to get motivated, or if you need it for health charts & records... then do it. i understand being scared... but as you know- it's a super super easy procedure and quick and painless.

BUT at the same time- false negative biopsies occur too. i dont know exactly what blood tests they ran- but if it's clearly positive- that's really all the proof you need. maybe he should skip it.. ??

and getting him to join in on here is a good idea... the more educated he is- the more he'll adhere to the diet and not feel so alone or slighted.

Skylark Collaborator
Skylark
Posted

If he is willing to accept a little uncertainty and still go 100% gluten-free for life he does not need the endoscopy. Some people really need that firm diagnosis to accept the diet. I agree that if you're celiac and he has the positive blood tests, he is probably celiac.

Simona19 Collaborator
Simona19
Posted
  • Author

you said his blood test was positive. that's really all you and he need. HOWEVER, if he needs a biopsy to get motivated, or if you need it for health charts & records... then do it. i understand being scared... but as you know- it's a super super easy procedure and quick and painless.

BUT at the same time- false negative biopsies occur too. i dont know exactly what blood tests they ran- but if it's clearly positive- that's really all the proof you need. maybe he should skip it.. ??

and getting him to join in on here is a good idea... the more educated he is- the more he'll adhere to the diet and not feel so alone or slighted.

I hope that I be able to convince him to go on the gluten free diet. When I told him his blood results, he just left house without a word. I called him to ask what he wants for dinner. He told me that he isn't home. I didn't even knew when he went out. It will be hard for him to deal with this.

aeryn Rookie
aeryn
Posted

I wouldn't pressure him too much about the endo unless you need that second diagnosis, but if it helps, I just had it last night and it really was not bad. I was terrified going into it, not so much about the actual procedure, but about the IV and drugs. The nurses were really good and responsive to my concerns, and the IV wasn't bad. The endo itself was very quick and although I do remember gagging and a bit of the biopsy, it's really more like it was a dream. I don't remember anything else from the endo, but the drugs wore off fairly quickly too and I was fine in the recovery room. I think you can pysch yourself out more than what the actual procedure does to you.

cassP Contributor
cassP
Posted

I hope that I be able to convince him to go on the gluten free diet. When I told him his blood results, he just left house without a word. I called him to ask what he wants for dinner. He told me that he isn't home. I didn't even knew when he went out. It will be hard for him to deal with this.

im sorry. i hope everything works out... and i hope he understands that everything will be fine. YES- it is a royal PAIN in the A to not get to eat whatever you want.. but it's not bad at all... much better than having something debilitating like Lupus or Ms, etc.

its not surprising either- that he's not taking it well- i mean gluten gives me horrible anxiety... and i can say ive been depressed most of my life. i have hope of ridding my anxiety forever soon

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

I hope that I be able to convince him to go on the gluten free diet. When I told him his blood results, he just left house without a word. I called him to ask what he wants for dinner. He told me that he isn't home. I didn't even knew when he went out. It will be hard for him to deal with this.

(((((((((((((((((((hugs)))))))))))))))))))))

Yes it will be hard for him to deal with and for you also.

It is normal for him to be angry about the diagnosis but hopefully today or tommorrow you two will be able to sit down and talk about it.

SGWhiskers Collaborator
SGWhiskers
Posted

Another consideration for why HE might want to have the endo done now is that if there is any question in his mind, that he might want it done later, he is probably insured with you right now and may not be insured at all in a few years. Have him do a little online research about the scope. I was nervous, but as another poster said, it really was like a dream. The next day or two, I had a bit of a belly ache like indigestion, but TV in bed and comfort food did the trick. I could have gone to work easily if I had needed to.

While he is fortunate to have a diagnosis when he is young, I really think the teens and twenties are the hardest time for someone to make the adjustment. He is fortunate to have been able to watch you and your healthy habits so that he at least knows what is safe and just needs to spend time emotionally coping until he becomes ready to start the diet himself. I know I was a bit pleased to have to wait 2 months for my endo appointment so that I could say goodbye to my favorite foods and I was a rational adult ready to do anything to feel healthy.

I wish both of you the best. It will help to have easy to eat and pack things available when he is ready to start.

ravenwoodglass Mentor
ravenwoodglass
Posted

BUT at the same time- false negative biopsies occur too. i dont know exactly what blood tests they ran- but if it's clearly positive- that's really all the proof you need. maybe he should skip it.. ??

This would be a valid concern also.

Skylark Collaborator
Skylark
Posted

I hope that I be able to convince him to go on the gluten free diet. When I told him his blood results, he just left house without a word. I called him to ask what he wants for dinner. He told me that he isn't home. I didn't even knew when he went out. It will be hard for him to deal with this.

I was so sorry to read this. Did he come back to the house? Is he feeling a little less stressed?

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. Celiac.com Sponsored Post
      0

      An Inclusive Valentine's Day: Easy Tips for a Celebration Everyone Can Enjoy

    2. trents
      - trents replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      IBS-D vs Celiac

      No coincidence. Recent revisions to gluten challenge guidelines call for the daily consumption of at least 10g of gluten (about the amount in 4-6 slices of wheat bread) for a minimum of 3 weeks. If possible, I would extend that two weeks to ensure valid testing.
    3. SilkieFairy
      - SilkieFairy replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      IBS-D vs Celiac

      Thank you both for the replies. I decided to bring back gluten so I can do the blood test. Today is Day #2 of the Challenge. Yesterday I had about 3 slices of whole wheat bread and I woke up with urgent diarrhea this morning. It was orange, sandy and had the distinctive smell that I did not have when I was briefly gluten free. I don't know if it's a...
    4. 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...
    5. 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...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,338
    • Most Online (within 30 mins)
      7,748
    Erica Johnson
    Newest Member
    Erica Johnson
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • trents
      IBS-D vs Celiac

      By trents · Posted

      No coincidence. Recent revisions to gluten challenge guidelines call for the daily consumption of at least 10g of gluten (about the amount in 4-6 slices of wheat bread) for a minimum of 3 weeks. If possible, I would extend that two weeks to ensure valid testing.
    • SilkieFairy
      IBS-D vs Celiac

      By SilkieFairy · Posted

      Thank you both for the replies. I decided to bring back gluten so I can do the blood test. Today is Day #2 of the Challenge. Yesterday I had about 3 slices of whole wheat bread and I woke up with urgent diarrhea this morning. It was orange, sandy and had the distinctive smell that I did not have when I was briefly gluten free. I don't know if it's a coincidence, but the brain fog is back and I feel very tired.   
    • 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?
×
×
  • 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.