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Gene Questions?

momof2sn

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momof2sn Apprentice
momof2sn
Posted

My daughter was diagnosed in May with Celiac Disease, she has the HLA-DQ8 and we just found out today that so does my husband. He is having no symptoms and is always the healthiest in our house. I want to know what the next step is? Does he have his levels checked?? What have you done?? Any opinions??

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~alex~ Explorer
~alex~
Posted

It's probably a good idea for both your husband and yourself to get a celiac panel since you have a diagnosed first degree relative. I think celiac genes are quite common and having one doesn't assure having celiac but makes it a possibility. If your husband tests negative he can always keep in mind that celiac is a possibility and if he ever becomes ill he can be retested.

momandgirls Enthusiast
momandgirls
Posted

If he's healthy, I would do nothing. Upwards of 50% of this country's population carries the gene for celiac disease - many will never actually develop the disease. Just because you carry the gene for celiac does not mean that you have the disease. Gene testing can rule out a diagnosis of celiac but cannot rule one in.

kevieb Newbie
kevieb
Posted

since we have 3 girls with celiac disease, our doctor has recommended that we test everyone in the family every 3 years or so. only one of our kids has had gene testing done---and he carries one of the celiac genes but has no active disease. our doctor's recommendation with him is that we test him yearly----or sooner if he develops symptoms.

happygirl Collaborator
happygirl
Posted

All Celiac experts recommend that ALL first degree relatives are tested, REGARDLESS of symptoms. Lack of symptoms does not mean "no" Celiac. Dr. Peter Green says that most Celiacs are actually silent Celiacs.

momof2sn Apprentice
momof2sn
Posted
  • Author
All Celiac experts recommend that ALL first degree relatives are tested, REGARDLESS of symptoms. Lack of symptoms does not mean "no" Celiac. Dr. Peter Green says that most Celiacs are actually silent Celiacs.

Yeah, that is what I am worried about. I don't want us to not know about his levels, because I would hate for him to be 50 and finally have symptoms and then he has really damaged his body and put himself at risk for even more problems. Would he need to see a GI or can he just go to a regular doctor?? Our ped GI recommended the gene testing and is now kind of holding up her hands and letting us figure out what to do since she only deals with kids. I don't want her to treat my husband just give us the direction we need to take next.

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    • AlwaysLearning
      Gluten related ??

      By AlwaysLearning · Posted

      Get tested for vitamin deficiencies.  Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
    • Colleen H
      Gluten related ??

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      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      My only proof

      By AlwaysLearning · Posted

      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
      Gluten related ??

      By AlwaysLearning · Posted

      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
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