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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,913
    • Most Online (within 30 mins)
      7,748

    patanddiane
    Newest Member
    patanddiane
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Rogol72
      @klmgarland, My dermatitis herpetiformis didn't clear up until I became meticulous about cross contamination. I cut out gluten-free oats and all gluten-free foods, dairy and gluten-free rice. Additionally, getting the right amount of protein for my body weight helped significantly in my body's healing process ... along with supplementing with enough of all the vitamins and minerals ... especially Zinc and Magnesium. I went from 70kg to 82kg in a year. Protein with each meal 3 times daily, especially eggs at breakfast made the difference. I'm not sure whether iodine was a problem for me, but I can tolerate iodine no problem now. I'm off Dapsone and feel great. Not a sign of an itch. So there is hope. I'm not advocating for the use of Dapsone, but it can bring a huge amount of relief despite it's effect on red blood cells. The itch is so distracting and debilitating. I tried many times to get off it, it wasn't until I implemented the changes above and was consistent that I got off it. Dermatitis Herpetiformis is horrible, I wouldn't wish it on anyone.  
    • klmgarland
      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
    • Scott Adams
      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many people, it can be very effective at reducing inflammation and providing rapid relief from symptoms like pain, diarrhea, and bleeding, often serving as a short-term "rescue" treatment to bring a severe flare under control. However, experiences can vary, and its effectiveness depends heavily on the specific cause of the inflammation. It's also important to be aware that while it can work well, it comes with potential side effects, especially with longer-term use, so it's typically used for the shortest duration possible under close medical supervision. It's always best to discuss the potential benefits and risks specific to your situation with your gastroenterologist.
×
×
  • 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.