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Please, I Need Your Advice

Puddy

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Puddy Explorer
Puddy
Posted

HELP! I don't know what the right thing is to do. I was diagnosed in February with a positive blood test and biopsy - no major digestive issues, just anemia, osteoporosis and lactose intolerance. My 2 subsequent blood tests show my numbers are way down and my anemia is gone. But since then I have been agonizing over what to do about my children. I have 2 college age daughters who are now home from school for the summer. I know they need to be tested, but am so worried about affecting their chances of getting health insurance when they graduate from school. Neither of them have any symptoms, but I know that doesn't mean they don't have celiac disease. Originally, my doctor suggested in a round about way that I don't test them for that very reason, but I can't live with not knowing. My husband and I have been back and forth about whether to just have them gene tested since the new law came out that insurance companies can't deny them coverage for carrying a disease gene. Then if they are carrying the gene (I have DQ2), put them on the diet and see how they feel. Unfortunately, since they don't have any symptoms, we won't know if it's making any difference. Or should we just go ahead and have the full celiac panel to see if they have an active case? Then that will go on their medical record and could conceivably prevent them from ever getting insurance. They are both majoring in fields where they will probably be working for themselves and have to get private policies. I've seen posts on here from people saying if they knew then what they know now, they never would have gone for an official diagnosis. I can handle the diet, I can handle the restrictions, I can even handle if one or both of them are ill, but I will never forgive myself if my decision prevents them from ever being able to purchase health insurance. What would you do? Thanks for your advice.

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Ursa Major Collaborator
Ursa Major
Posted

So, why not have them both tested by Open Original Shared Link? It can't officially diagnose celiac disease, but can diagnose gluten intolerance, and they do the gene test as well.

It won't be cheap, but you will never have to worry about any diagnosis in official records. And you will know if they should be on the gluten-free diet or not.

ptkds Community Regular
ptkds
Posted

The above post is good advice, but it can be really expensive.

If that is not an option, I would go ahead and get them tested. From what I have read in another recent post, if a person is turned down for insurance because of Celiac, they can appeal and usually win. They can get a doctor's not stating that Celiac is not a problem as long as the diet is complied with. If your dd's stay on the diet, they shouldn't have a problem.

As for your dd's not having any symptoms, you can't assume they aren't sick. When I tested my dd's, I was sure my oldest had Celiac, and dd#2 didn't. I was shocked to find out the dd#2 had Celiac, and my oldest didn't! DD#2 didn't have symptoms, but now that she has been gluten-free for over a year, she has the worst reaction out of the whole family when she gets just a tiny bit of gluten.

Also, you have to remember that teens and young adults are often in a "honeymoon phase" of celiac at that age. They have no symptoms, but there is damage going on.

Keep us updated!

cruelshoes Enthusiast
cruelshoes
Posted

To me, the argument of whether to test or not really boils down to what do you need in order to be compliant? For me, I wanted the iron clad diagnosis. I have it in black and white, with no equivocation. I know 100% that I cannot cheat, because of the diagnosis. I also wanted that for my son, because he is also a lot like me, and I knew I was going to have to deal with the schools as he got older (he was a lot younger than your kids). As an aside, my son had no symptoms when he was diagnosed, but his bloodwork was almost as bad as mine was. He was well on his way to being a very sick little boy, despite having no symptoms.

If I put myself in your daughter's shoes, I would not be willing to do a gluten-free diet with a lack of symptoms and a lack of any diagnosis. It would be hard for me to know if I needed it, or if it were doing me any good. All first degree relatives of celiacs should be tested regardless of symptoms. There are many was of doing the testing that are not connected with your insurance in any way, so there is no medical notation in your file. Here is one that I know of: Open Original Shared Link. I have no connection with the company, but I saw it in the paper. It's not cheap, but it may give you some answers. There are lots of other labs out there that do testing.

Good luck with whatever you decide to do.

purple Community Regular
purple
Posted

Health is always more important than money, ease your mind and have them tested, then all will know and maybe prevent some diseases they could get later on.

Puddy Explorer
Puddy
Posted
  • Author

Thank you all for your advice. It was a big help. I have one more question, though, and I think I actually already know the answer. I just need to hear someone else confirm it. Would it make sense to wait another year until they graduate and have their own insurance before testing them since they have no symptoms and never have had any? Thanks again.

Ursa Major Collaborator
Ursa Major
Posted
Thank you all for your advice. It was a big help. I have one more question, though, and I think I actually already know the answer. I just need to hear someone else confirm it. Would it make sense to wait another year until they graduate and have their own insurance before testing them since they have no symptoms and never have had any? Thanks again.

Do you think they will actually bother to do it once they are on their own? Personally, knowing young people in their twenties (four of my five kids fall within that category), mine wouldn't do it.

My oldest (who is 28 and getting 'older and wiser') just put herself and her five kids on the gluten-free diet without testing, with great results. But the other three (who ALL have symptoms) prefer to stay in denial, and won't get tested.

The only reason my youngest got tested was, because I forced her (she is 16, and I still have that power with her). I don't have that power over the other 'kids' (22, 25 and 27 for the ones who won't get tested) any more. They are married and have kids (or are expecting) and think they know everything.

There may not be any harm in waiting another year. But now you can get them to do it, once they are on their own you can't any more. It is your choice.

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home-based-mom Contributor
home-based-mom
Posted

If you have 2 copies of the DQ2 gene, you passed one copy on to each child, and therefore the potential is there.

I agree that if it is affordable, do a private lab testing. That way your daughters can make an informed decision.

purple Community Regular
purple
Posted
If you have 2 copies of the DQ2 gene, you passed one copy on to each child, and therefore the potential is there.

I agree that if it is affordable, do a private lab testing. That way your daughters can make an informed decision.

I agree.

  • 2 weeks later...
Puddy Explorer
Puddy
Posted
  • Author

Hi....just wanted to up-date everyone who was so helpful when I was asking about my daughters' testing. I ended up using my regular gastroenterologist. She ran the complete Celiac panel and gene testing and the results came back today.....they both tested negative and do not carry the genes. I huge load off of my mind! Thank you again for all your advice you were a great help to me. Have a wonderful day, I know I will!

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