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. Scott Adams
      0

      Gluten-Free Peanut Butter Cup Swirl Brownies

    2. Mari
      - Mari replied to Jmartes71's topic in Coping with Celiac Disease
      2

      Related issues

      Hi Jmartes, It sure is difficult to get useful advice from medical providers. Almost 20 years ago a Dr suggested that I might have Celiacs and I took a Celiac Panel blood test. No gluten challenge diet. On that test the tTG was in normal range but an alpha antibody was very high. I went online and read about celiac disease and saw how I could investigate...
    3. MogwaiStripe
      - MogwaiStripe replied to annamarie6655's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Airborne Gluten?

      I can't prove it, but I truly believe I have been glutened by airborne particles. I used to take care of shelter cats once per week at a pet store, and no matter how careful I was, I would get glutened each time even if I wore a mask and gloves and washed up well after I was done. I believe the problem was that because I'm short, I couldn't do the the tasks...
    4. knitty kitty
      - knitty kitty replied to Midwestern's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      16

      Gluten Issues and Vitamin D

      Hello, @MogwaiStripe, Vitamin D is turned into its activated forms by Thiamine. Thiamine deficiency can affect Vitamin D activation. https://pubmed.ncbi.nlm.nih.gov/14913223/ Thiamine deficiency affects HLA genes. HLA genes code for autoimmune diseases like Celiac, Thyroiditis, Diabetes, etc. Thiamine deficiency inside a cell triggers a...
    5. knitty kitty
      - knitty kitty replied to annamarie6655's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Airborne Gluten?

      Hello, @annamarie6655, Yes, there's many of us who react to airborne gluten! Yes, animal feed, whether for chickens or cats or dogs, can release airborne gluten. I can get glutened from the bakery section at the grocery store. The nose and mouth drain into the digestive system and can trigger systemic reactions. I find the histamine release...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,248
    • Most Online (within 30 mins)
      7,748
    Tc clark
    Newest Member
    Tc clark
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Mari
      Related issues

      By Mari · Posted

      Hi Jmartes, It sure is difficult to get useful advice from medical providers. Almost 20 years  ago a Dr suggested that I might have Celiacs and I took a Celiac Panel blood test. No gluten challenge diet. On that test the tTG was in normal range but an alpha antibody was very high. I went online and read about celiac disease and saw how I could investigate this low tTG and still have celiac disease. Normal tTG can happen when a person had been reacting for many years. Another way is that the person has not been eating enough gluten to raise the antibody level. Another reason is that the tTG does not show up on a blood but may show up on a fecal test. Almost all Celiacs inherit at least one of the 2 main Celiac genes. I had genetic tests for the Celiac genes at Enterolab.com. I inherited one main Celiac gene from one parent and the report said that the DQ gene I inherited from my other parent, DQ6, could cause a person to have more problems or symptoms with that combination. One of my grandmother's had fairly typical symptoms of Celiacs but the other grandmother had severe food intolerances. I seem to show some problems inherited from both grandmothers. Human physiology is very complex and researchers are just beginning to understand how different body systems interact.  If you have taken an autosomal DNA test you can download your raw data file and upload it to Prometheuw.com for a small fee and search for Celiac Disease. If you don't find any Cekiac genes or information about Celiac disease  you may not have autoimmune gluten intolerance because more than 99% of Celiacs have one or both of these genes.  PLEASE ASK QUESTIONS IF YOU WANT TO KNOW EHAT i HAVE DONE TO HELP WITH SYMPTOMS.  
    • MogwaiStripe
      Airborne Gluten?

      By MogwaiStripe · Posted

      I can't prove it, but I truly believe I have been glutened by airborne particles. I used to take care of shelter cats once per week at a pet store, and no matter how careful I was, I would get glutened each time even if I wore a mask and gloves and washed up well after I was done. I believe the problem was that because I'm short, I couldn't do the the tasks without getting my head and shoulders inside their cages, and so the particles from their food would be all over my hair and top of my shirt. Then I had to drive home, so even if I didn't get glutened right then, the particles would be in my car just waiting for me to get in the car so they could get blown into my face again. I gave up that volunteer gig and stopped getting glutened so often and at such regular intervals.
    • knitty kitty
      Gluten Issues and Vitamin D

      By knitty kitty · Posted

      Hello, @MogwaiStripe, Vitamin D is turned into its activated forms by Thiamine.  Thiamine deficiency can affect Vitamin D activation. https://pubmed.ncbi.nlm.nih.gov/14913223/ Thiamine deficiency affects HLA genes.  HLA genes code for autoimmune diseases like Celiac, Thyroiditis, Diabetes, etc.  Thiamine deficiency inside a cell triggers a toggle switch on the gene which in turn activates autoimmune diseases carried on the gene.  The reference to the study is in my blog somewhere.  Click on my name to go to my page, scroll down to the drop down menu "Activities" and click on blogs.  
    • knitty kitty
      Airborne Gluten?

      By knitty kitty · Posted

      Hello, @annamarie6655, Yes, there's many of us who react to airborne gluten!   Yes, animal feed, whether for chickens or cats or dogs, can release airborne gluten.  I can get glutened from the bakery section at the grocery store.   The nose and mouth drain into the digestive system and can trigger systemic reactions.   I find the histamine release in response to airborne gluten will stuff up my sinuses and bother my eyes.  High histamine levels do cause anxiety and migraines.  The muscle spasms can be caused by high histamine, too.  The digestive system may not manifest symptoms without a higher level of gluten exposure.   Our bodies make an enzyme, DAO (diamine oxidase), to break down histamine.   Pyridoxine B 6, Cobalamine B12, Vitamin C, copper, zinc, and iron are needed to make DAO.  DAO supplements are available over the counter.  Taking a B Complex supplement and additional Thiamine in the form Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) helps reduce the amount of histamine being released.  Mast cells without sufficient Thiamine have an itchy trigger finger and release histamine at the slightest provocation.  Thiamine helps mast cells refrain from releasing their histamine.    I find taking additional TTFD thiamine helps immensely with neurological symptoms as TTFD can easily cross the blood brain barrier without a carrier.  High histamine in the brain can cause the muscle spasms, anxiety and migraines.  Vitamin C really helps with clearing histamine, too.   The Digiorno pizza mystery reaction could have been caused by a reaction to the cheese.  Some people develop lactose intolerance.  Others react to Casein, the protein in dairy, the same as if to gluten because Casein resembles the molecular structure of gluten.  An enzyme used in some dairy products, microbial transglutaminase, causes a gluten reaction because it is the same as the tissue transglutaminase our bodies make except microbes make it.  Those tTg IgA blood tests to diagnose celiac disease measure tissue transglutaminase our bodies release as part of the autoimmune response to gluten.   You're doing great!  A Sherlock Holmes award to you for figuring out the connection between airborne gluten and animal feed!!!  
    • Scott Adams
      Guinness, can you drink it?

      By Scott Adams · Posted

      This article may be helpful:  
×
×
  • 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.