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

Stupid Relatives

Lockheed

By Lockheed
in Coping with Celiac Disease

Recommended Posts

Lockheed Apprentice
Lockheed
Posted

Okay.. so I mentioned recently to a family member that we were considering moving to Boston. Not anytime soon, but in the future. I fell in love with Boston because it was the first place where I could ask for a gluten free menu or gluten free menu items and the waiters knew exactly what I was talking about and didn't just stare at me blankly like I'm an alien speaking a foreign language or something (which I realize if you've never dealt with the topic before that's the proper response). But Boston seems to be fairly celiac aware and savy. But recently I've been having other issues and I tend to not talk to people when I have issues because.. well I'm having issues! Like duh hello let me go deal with myself and when I'm normal again I'll come talk. So this is the e-mail I got:

"When you have spoken about your health issues and Boston being a place with the highest concentration of people with Celiac's- I have to assume that also means there are Dr.'s there who have a greater insight into the healthcare needs and have a greater instance of finding solutions that work for Celiac's. With that being said- this makes me jump to the next conclusion that you are having problems that you are SPECIFICALLY going to Boston to seek treatment for."

This makes me cringe so much. We all know there is no cure or solutions that work for celiac's except a gluten free life. I don't even want to call it a lifestyle because that makes it sound like on Saturday we can just throw our lifestyle out the window and adop a different one for the day as long as we're good with our lifestyle again on Monday. It's not a choice, it's a way of life and really I don't mind it. And why do I have to be seriously sick in order to want to move away from my crazy nutzo family (no - really... they are nutz)? And if I were going for medical treatment would I seriously be staying there for a week? I just don't even know what to say anymore.

And just for the record I didn't say that Boston had the highest celiac population.. honestly I have no idea who does, but I did say they are aware of it because there is certainly a bigger diagnosed population there than out here in the middle of no-where Texas.

Sorry.. I just needed to vent about it somewhere with people that understood. It's a diet restriction not a death sentence.

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

Celiac.com Sponsor (A8-M):


sickchick Community Regular
sickchick
Posted

I am so glad you posted that! B)

I am the same way- when I feel like crap I keep it to myself and I don't whine to anyone... ESPECIALLY family.

Sorry you have to deal with that... :rolleyes:

Be well! :)

gfpaperdoll Rookie
gfpaperdoll
Posted

as a Texan let me just say, that if you are in nowhere Texas & they do not think you are an alien from outer space because you are not eating peach cobbler, chicken fried steak & biscuits & gravy, you are doing good. :P

Most people in Texas are all about food & plenty of it. If your uncle's cousin's best friend dies they will bring food! People from other states might think this is an exaggeration but it is not. ;)

I have only been gluten-free for 4 years, but one thing that I have recently learned is that the less it is mentioned to family, friends, & acquaintances the better off I am. Now if I could just get where I do not stop people on the street to tell them about it!! B)

Just never mention it to your family again. Instead just talk about how you are going skiing, surfing, mountain climbing, taking up a new hobby etc etc, but never mention the food...

frec Contributor
frec
Posted

You catch on a lot faster than I do! I've had this for 6 years and I just now came to the conclusion I should never mention it to my brother and sister. I've always tried not to mention it much (my brother tends to suddenly have to hang up if I mention health on the phone), but I think I need to lead an entire secret life they don't know about it. My brother recently told me not to bother him with my health issues. I really thought I'd been pretty good about avoiding the subject. My sister is more tolerant but still says things like, "Do you HAVE to tell the waiter you have allergies?" Then she says things like, "I didn't know pasta had wheat in it!" But then she saw me wearing lidocaine patches (fibromyalgia related) during out last vacation together and later said, "Why didn't you tell me you were hurting that much?"

So I don't get it. I think you are right--don't talk about it. They can ask if they want to know. It is tough, though, because food is a very pervasive topic. At least my friends are great.

Boston is a beautiful area--I've been there a lot.

Salem Rookie
Salem
Posted

Before I finally went gluten-free, I was gluten-light except when I went out to eat. It seemed that every time I went to a family member's house I would get sick (and grumpy). I felt like I was "Debbie-downer" so I would try to hide how sick I was. A friend of mine was so kind as to suggest that perhaps it was all in my mind. From then on, I started to think that maybe my family thought the same thing. I started a blog about my gluten-free journey, I think it has helped them understand that although being wheat-free might have been a choice before, it is no longer a choice. They are kind of understanding but are still clueless.

I try to remember that they are uninformed about the disease and aren't trying to drive me insane. When I get a phone call about a great new Gluten filled meal, I just listen and say "hmmm... sounds good." When what I really want to say is "why are you telling me this?" I think it's like telling a drug addict about a great new drug that they gotta try. Families want to share with us, and want us to get better and be "normal" again. They don't understand that being Gluten-free makes us feel normal and life is so much better.

cindy lou Newbie
cindy lou
Posted
Okay.. so I mentioned recently to a family member that we were considering moving to Boston. Not anytime soon, but in the future. I fell in love with Boston because it was the first place where I could ask for a gluten free menu or gluten free menu items and the waiters knew exactly what I was talking about and didn't just stare at me blankly like I'm an alien speaking a foreign language or something (which I realize if you've never dealt with the topic before that's the proper response). But Boston seems to be fairly celiac aware and savy. But recently I've been having other issues and I tend to not talk to people when I have issues because.. well I'm having issues! Like duh hello let me go deal with myself and when I'm normal again I'll come talk. So this is the e-mail I got:

"When you have spoken about your health issues and Boston being a place with the highest concentration of people with Celiac's- I have to assume that also means there are Dr.'s there who have a greater insight into the healthcare needs and have a greater instance of finding solutions that work for Celiac's. With that being said- this makes me jump to the next conclusion that you are having problems that you are SPECIFICALLY going to Boston to seek treatment for."

This makes me cringe so much. We all know there is no cure or solutions that work for celiac's except a gluten free life. I don't even want to call it a lifestyle because that makes it sound like on Saturday we can just throw our lifestyle out the window and adop a different one for the day as long as we're good with our lifestyle again on Monday. It's not a choice, it's a way of life and really I don't mind it. And why do I have to be seriously sick in order to want to move away from my crazy nutzo family (no - really... they are nutz)? And if I were going for medical treatment would I seriously be staying there for a week? I just don't even know what to say anymore.

And just for the record I didn't say that Boston had the highest celiac population.. honestly I have no idea who does, but I did say they are aware of it because there is certainly a bigger diagnosed population there than out here in the middle of no-where Texas.

Sorry.. I just needed to vent about it somewhere with people that understood. It's a diet restriction not a death sentence.

You just made my day, I feel your pain. My family doesn't *believe* in Celiac and certainly not that I'm sick. They think if the "real" doctor can't "fix" it with a pill or surgery, then it's not real. (They are very sick people- multiple heart attacks, hysterectomy, diabetes, etc ......)

Your last sentence really made me chuckle, thanks! Oh, I live in eastern NC and all the Outbacks, Macaroni Grills (scary thought), and a few other places have gluten-free menus. I did a review of Outback on my blog- their gluten-free meal was great, all the way down to the brownie. The brownie, sadly, was not dairy free however, so I did get "dairy-ied" if such a term exists :)

susanm Apprentice
susanm
Posted

Hi, I'm from the Boston area, so I had to respond. While there might be more awareness in this area, you got lucky with your restaurant. A lot of people are still very ignorant about it here.

Part of the reason I think there's more awareness here (now hear me out first) is not that there are more doctors here. Nooo, doctors aren't all that aware. It's because there is more of an alternative lifestyle here. There are a lot of chiropractors and alternative medicine practitioners. The reason I said "here me out" was not to say that celiac is an alternative lifestyle. It's just that these alternative medical practitioners are just more aware of dietary subtleties than regular medical doctors.

I go to a regular doctor that also is an alternative medical doctor too. In other words, she works both ends. First thing she had me do was an elimination diet to see what I was sensitive to. Unfortunately, there was no follow-up when I said that reintroducing the wheat bothered me, so now I have to follow-up myself.

Just giving you a little background information on Boston before you move out here because you think we're a haven of great medical information. <_<

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

Celiac.com Sponsor (A8-M):


Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,900
    • Most Online (within 30 mins)
      7,748
    tessycork47
    Newest Member
    tessycork47
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • trents
      New (possible) celiac diagnosis

      By trents · Posted

      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      New (possible) celiac diagnosis

      By Judy M · Posted

      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      Patiently Waiting to See Results

      By Scott Adams · Posted

      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      Gluten free beer ?

      By Scott Adams · Posted

      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
    • trents
      Patiently Waiting to See Results

      By trents · Posted

      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
×
×
  • 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.