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

Should My Family Get Tested?


chili

Recommended Posts

chili Apprentice

I was diagnosed in January 2011, for Celiac..Should my family get tested as well? parents? siblings? I am beginning to think that my dad has it as well. he is experiencing the same type of symptoms and was just told by his doctor (which is the same as mine family doctor) that he is vitamin b12 deficient...now wouldn't he put 2 and 2 together and think maybe my dad has it too.. why are doctors so ignorant to this disease???

Also I have 3 small children. should I get them tested as well? the only one that concerns me is my 1 year old. I think he has milk protein allergy? what are your views?


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



Celiac.com Sponsor (A8-M):



Jungle Rookie

The only reason I was diagnosed was because my brother and niece were. I got tested just to rule out Celiacs. Go figure. I have 3 kids also and will have them tested soon.

mushroom Proficient

The general recommendation is that all first degree relatives be tested - parents, siblings, offspring. Somehow or other, doctors seems to think that we exist independent of what we put in our bodies and what happens when we put things in our bodies that we shouldn't. They somehow lack the neural synapses that connect these events with symptoms we experience. Yes, especially for that reason, your dad needs to be tested too. It might save him a lot of grief. And your 1-year-old could be lactose intolerant, not casein intolerant depending on what he's reacting to. He is a definite candidate for testing regardless of the familial relationship.

Strawberry-Jam Enthusiast

I'm really trying to get my grandmother tested, as she's had IBS and fibromyalgia my entire life, along with chronic constipation and a whole host of other issues that could be gluten- and other intolerance-related.

My doctor told me that only those who have digestive problems and celiac symptoms should get tested...

but if insurance covers it and there's a chance that someone's a silent celiac, why not test 'em?

MsCurious Enthusiast

I'm really trying to get my grandmother tested, as she's had IBS and fibromyalgia my entire life, along with chronic constipation and a whole host of other issues that could be gluten- and other intolerance-related.

My doctor told me that only those who have digestive problems and celiac symptoms should get tested...

but if insurance covers it and there's a chance that someone's a silent celiac, why not test 'em?

Her symptoms don't sound very silent to me... IBS is miserable. I think lots of people that get diagnosed with fibromayalgia and IBS are really celiac, and don't have those two issues once they go gluten free. It seems since doctors didn't know a THING about celiac ten years and more ago.... they "tried" to put other illness labels on people who are just now being diagnosed and their "other illnesses" go away. Pretty compelling reason for her to get tested, I'd say! It IS genetic after all. ;)

T.H. Community Regular

...why are doctors so ignorant to this disease???

Also I have 3 small children. should I get them tested as well? the only one that concerns me is my 1 year old. I think he has milk protein allergy? what are your views?

I'd say oh yeah, get tested. my father was diagnosed 9 years ago. His doctor said 'eat gluten free' and that was the end of that. No follow ups, no more info, nada.

8 years down the line, as I"m getting sicker and sicker, I get tested only because I was getting an endoscopy for something completely different and knowing about the celiac disease, asked if they could 'take a look while they were down there.'

Then we tested everyone, and my daughter and brother came back positive. My son was negative, but I did with him what I would urge every celiac parent to do: tried a gluten free diet for a while, just to make sure it wasn't a false negative or he wasn't a non-celiac gluten intolerant.

Turns out, I chose correctly, as he has symptoms that resolve on a gluten-free diet. We challenged him and he reacted, so on the diet he stays.

My son had trouble with dairy early, early on, too. When he went off gluten, we found out that most of his dairy issues resolved (not all, though). It bothers me so much, because it suggests that he's had this for years and we never knew, never even though to check for it. :(

ravenwoodglass Mentor

I'm really trying to get my grandmother tested, as she's had IBS and fibromyalgia my entire life, along with chronic constipation and a whole host of other issues that could be gluten- and other intolerance-related.

My doctor told me that only those who have digestive problems and celiac symptoms should get tested...

but if insurance covers it and there's a chance that someone's a silent celiac, why not test 'em?

Your doctor is flat out wrong. All first degree members need to be tested. Celiac is not just a gut disease although some doctors falsely think so. And your grandmother is far from asymptomatic.


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



Celiac.com Sponsor (A8-M):



Cara in Boston Enthusiast

It is my understanding that all first degree relatives should be screened no matter what. Screening should continue every two or three years as it can crop up at any time. Second degree relatives (aunts, uncles, cousins, etc.) should be told so they can get screened if they have any symptoms or unresolved medical issues.

I tested positive after my son tested positive. Even though it looks like it came from me, my husband will get screened too - his relatives all seem to have symptoms so I don't want him to think he is off the hook just because I came back positive.

Cara

keithceliac2010 Rookie

I am only 4 weeks gluten-free and have had a miraculous turn-around in my physical and mental symptoms. I am really on "Top of the World", after suffering for over 30 years with a myriad of symptoms of gluten intolerance. I have several family members(parents, aunts and uncles, cousins and siblings that have many of the same symptoms which I have dealt with for many years. My first instinct after discovering my diagnosis and feeling the symptoms vanish after going gluten-free, was of course to share it with my family members- most loving family members want whats best for the rest of the family and want them to feel better. You would think that I told them that aliens had abducted me and cured my illnesses. Lots of denial. Being a recovering alcoholic, I know what denial is, especially in my family. I have not had one family member that takes it seriously. All I can do is be a positive, living example, and let people see for themselves the positive changes that my body has gone through being gluten-free, and eating a healthier diet. My point is, that when it comes to your parents, siblings, and extended family members, yes talk openly about it but try not to get frustrated and/or disappointed if your warnings fall on deaf ears. Believe me, I had to take a step back from trying to heal my entire family, lest I increase my blood pressure and stress when they just don't see the whole picture. As far as your children, I cannot give any advice since I am so new to this and still in a learning phase myself. Best of luck, and take care of yourself and your children first and foremost.

chili Apprentice

I am only 4 weeks gluten-free and have had a miraculous turn-around in my physical and mental symptoms. I am really on "Top of the World", after suffering for over 30 years with a myriad of symptoms of gluten intolerance. I have several family members(parents, aunts and uncles, cousins and siblings that have many of the same symptoms which I have dealt with for many years. My first instinct after discovering my diagnosis and feeling the symptoms vanish after going gluten-free, was of course to share it with my family members- most loving family members want whats best for the rest of the family and want them to feel better. You would think that I told them that aliens had abducted me and cured my illnesses. Lots of denial. Being a recovering alcoholic, I know what denial is, especially in my family. I have not had one family member that takes it seriously. All I can do is be a positive, living example, and let people see for themselves the positive changes that my body has gone through being gluten-free, and eating a healthier diet. My point is, that when it comes to your parents, siblings, and extended family members, yes talk openly about it but try not to get frustrated and/or disappointed if your warnings fall on deaf ears. Believe me, I had to take a step back from trying to heal my entire family, lest I increase my blood pressure and stress when they just don't see the whole picture. As far as your children, I cannot give any advice since I am so new to this and still in a learning phase myself. Best of luck, and take care of yourself and your children first and foremost.

Thank you keith for your respond...I try not to get frustrated. I would love for some of my family members to get tested as they have some of the symptoms. Sometimes I get an ignorant response as " don't jinks me with what you have" it frustrates me, because I know this originated from someone, I find it impossible that I am the only one, yet diagnosed that has this disease. I think I will get my children tested eventually. All are triving and growing as should and there is no evidence of food intolerances. (except for my 1 year old, who may be allergic to milk.

ravenwoodglass Mentor

I am only 4 weeks gluten-free and have had a miraculous turn-around in my physical and mental symptoms. I am really on "Top of the World", after suffering for over 30 years with a myriad of symptoms of gluten intolerance. I have several family members(parents, aunts and uncles, cousins and siblings that have many of the same symptoms which I have dealt with for many years. My first instinct after discovering my diagnosis and feeling the symptoms vanish after going gluten-free, was of course to share it with my family members- most loving family members want whats best for the rest of the family and want them to feel better. You would think that I told them that aliens had abducted me and cured my illnesses. Lots of denial. Being a recovering alcoholic, I know what denial is, especially in my family. I have not had one family member that takes it seriously. All I can do is be a positive, living example, and let people see for themselves the positive changes that my body has gone through being gluten-free, and eating a healthier diet. My point is, that when it comes to your parents, siblings, and extended family members, yes talk openly about it but try not to get frustrated and/or disappointed if your warnings fall on deaf ears. Believe me, I had to take a step back from trying to heal my entire family, lest I increase my blood pressure and stress when they just don't see the whole picture. As far as your children, I cannot give any advice since I am so new to this and still in a learning phase myself. Best of luck, and take care of yourself and your children first and foremost.

Glad to hear the diet is working so well for you and that you are overcoming your other issues. It is hard and you are to be commended for dealing with not just one but two difficult life changes. Don't lose heart with your family. It took six months but eventually my family realized that the diet was a life changer and finally all agreed to be tested. All were positive.

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

    2. - Colleen H replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

    3. - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

    4. - AlwaysLearning replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

    5. - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,085
    • Most Online (within 30 mins)
      7,748

    M A Humphries
    Newest Member
    M A Humphries
    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

    • AlwaysLearning
      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
      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
      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
      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
      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.   
×
×
  • 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.