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Simona19

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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?

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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

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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?

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