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How To Notify Family
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I just realized I do have genetic risk, so I emailed my parents and brother. I told them the full list of blood tests to request and told them the risk was low but since the potential for serious consequences from leaving it untreated is serious that I hoped they would get tested.

My dad wrote me back saying no way but thanks for the info. This was no surprise as he is a full time missionary in the slums of Jamaica and he does not have medical care or believe in it at all, and sees special diets as an act of privilege when people are starving, in addition to an act showing lack of faith. Ironically he used to be a pharmaceutical rep specializing in GI medications, so he is pretty informed about a lot of this stuff.

I haven't heard back yet from my mom or brother. My mom can't even imagine a meal without bread but I do think she'll get tested just to humor me. I kind of doubt my brother will do it because it's just one more thing to get around to.

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I took the time to write a letter to my large family. They ALL know I was very, very ill and incapacitated from something for over 3 years, so when I was Dxed, and had the genetic test done which showed genes from both parents, I felt it was the right thing to inform all of them. I have siblings and over 40 cousins and they all have kids, too.

I explained gluten sensitivity, intolerance and Celiac. I sent a list of over 300 symptoms and autoimmune conditions that are associated with it. I told them what they could do to feel better, what tests to have done, and WROTE UP a shopping list and created a month's worth of menu suggestions.

I did that because one said to me "It's too hard and expensive to do with a family". Baloney!

I provided links to various sites for information, articles on their specific conditions and how they relate to gluten intolerance and offered to help anyone who needs guidance. I even PHOTOCOPIED all this and mailed it to people who do not have email!

If someone had done all that for me years ago and TOLD ME I WOULD FEEL BETTER if I just did this one thing, I'd have jumped for joy. :huh:

Here is the reply I got from over 50+ people I informed:

:unsure:

One cousin told my Mom he cried when he read about what happened to me. One told her he knows this is probably what he has because he has all the symptoms. One with Crohn's said that my story sounded like hers.But NONE have done a thing about it.

My family--both sides --is LOADED with autoimmune diseases (diabetes, thyroid disease, various cancers, Crohn's, MS, asthma--- and almost every one of them has GERD or "irritable bowel" or is overweight (as I once was) and there is some anxiety/depression there as well.Practically NO ONE has a gall bladder anymore (me neither) and some have unexplained anemia.

My Mom, after reading all the info I sent (and helplessly watching my decline for 3 years) was the only who took it seriously.

Learning the ropes and how to" punt" in a gluten- filled world is a bit rough, but if my 84-year-old Mom can do it, anyone can. She goes to weight watchers for her weekly meeting ( she is on maintenance for life) and tells others about gluten sensitivity and celiac and how wheat could be affecting their health. Go Mom! Her lifelong anxiety, stomach and bowel issues, insomnia and GERD are gone. She sees how it affected her whole life now--as it has mine.

When asked if it is difficult to adopt a gluten-free diet, she says "No, what's the big damn deal? "... :lol: :lol:

Whomever uses the excuse "it's too late to change"--- hasn't met my Mom--and is doing just that: "making an excuse".

The saddest part of all is my sister, whom I love dearly, will not get tested. She has diabetes, hypothyroidism, high blood pressure and various other issues. I worry that she will develop even MORE symptoms, like kidney disease. We now realize this thing likely killed my Dad. :(

Her final word on this whole subject was "Thanks, but I trust my doctor and will go with the medications and protocols in place."

Now, guys, she TOLD this doctor (and he is also my MOM's doctor) that I was ill for 3 years and DXed with celiac and that I said she should have the test. Now, either he is too ignorant to do it or she simply has refused because she does not want to follow the diet on top of caring for her diabetes.

In any case, it is a damn shame that no one listens to us. I am tired of banging my head against the wall trying to get them to see what's right in front of them. One even told me "well, no one is as sick as you are, so we don't think it's a problem" :o .....and I thought to myself....OK, but someday, you will be and I will be here to help.

Tell them, then, let it go. I lost enough sleep over it.

Best wishes!

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I took the time to write a letter to my large family. They ALL know I was very, very ill and incapacitated from something for over 3 years, so when I was Dxed, and had the genetic test done which showed genes from both parents, I felt it was the right thing to inform all of them. I have siblings and over 40 cousins and they all have kids, too.

I explained gluten sensitivity, intolerance and Celiac. I sent a list of over 300 symptoms and autoimmune conditions that are associated with it. I told them what they could do to feel better, what tests to have done, and WROTE UP a shopping list and created a month's worth of menu suggestions.

I did that because one said to me "It's too hard and expensive to do with a family". Baloney!

I provided links to various sites for information, articles on their specific conditions and how they relate to gluten intolerance and offered to help anyone who needs guidance. I even PHOTOCOPIED all this and mailed it to people who do not have email!

If someone had done all that for me years ago and TOLD ME I WOULD FEEL BETTER if I just did this one thing, I'd have jumped for joy. :huh:

Here is the reply I got from over 50+ people I informed:

:unsure:

One cousin told my Mom he cried when he read about what happened to me. One told her he knows this is probably what he has because he has all the symptoms. One with Crohn's said that my story sounded like hers.But NONE have done a thing about it.

My family--both sides --is LOADED with autoimmune diseases (diabetes, thyroid disease, various cancers, Crohn's, MS, asthma--- and almost every one of them has GERD or "irritable bowel" or is overweight (as I once was) and there is some anxiety/depression there as well.Practically NO ONE has a gall bladder anymore (me neither) and some have unexplained anemia.

My Mom, after reading all the info I sent (and helplessly watching my decline for 3 years) was the only who took it seriously.

Learning the ropes and how to" punt" in a gluten- filled world is a bit rough, but if my 84-year-old Mom can do it, anyone can. She goes to weight watchers for her weekly meeting ( she is on maintenance for life) and tells others about gluten sensitivity and celiac and how wheat could be affecting their health. Go Mom! Her lifelong anxiety, stomach and bowel issues, insomnia and GERD are gone. She sees how it affected her whole life now--as it has mine.

When asked if it is difficult to adopt a gluten-free diet, she says "No, what's the big damn deal? "... :lol: :lol:

Whomever uses the excuse "it's too late to change"--- hasn't met my Mom--and is doing just that: "making an excuse".

The saddest part of all is my sister, whom I love dearly, will not get tested. She has diabetes, hypothyroidism, high blood pressure and various other issues. Her final word on this whole subject was "Thanks, but I trust my doctor and will go with the medications and protocols in place."

Now, guys, she TOLD this doctor (and he is also my MOM's doctor) that I was ill for 3 years and DXed with celiac and that I said she should have the test. Now, either he is too ignorant to do it or she simply has refused because she does not want to follow the diet.

In any case, it is a damn shame that no one listens to us. I am tired of banging my head against the wall trying to get them to see what's right in front of them. One even told me "well, no one is as sick as you are, so we don't think it's a problem" :o .....and I thought to myself....OK, but someday, you will be and I will be here to help.

Tell them, then, let it go. I lost enough sleep over it.

Best wishes!

When my brother was here, we talked about the disease. I reminded him that all off Mom's 8 brothers and sisters were ambulatory at a very late age, and the survivors are still totally ambulatory without walk aids. Yet Mom was wheelchair bound. He said "So you have to choose between gluten or walking? That seems like an easy choice."

It's really frustrating about your sister.

I have a co-worker who I'm pretty sure needs to go gluten-free, but she's adamant that she won't get tested and would rather die than give up bread. (One of the dead bread heads.) I've mentioned it twice in two years, won't bring it up again. The other day she saw me photocopying a recipe from a cookbook and asked if I had a good recipe. I told her she wouldn't be interested b/c it was gluten-free. Her response was "That's right!"

I've shared other gluten-free recipes with her that she's loved, but if you tell her it's gluten-free she's not interested. LOL.

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When my brother was here, we talked about the disease. I reminded him that all off Mom's 8 brothers and sisters were ambulatory at a very late age, and the survivors are still totally ambulatory without walk aids. Yet Mom was wheelchair bound. He said "So you have to choose between gluten or walking? That seems like an easy choice."

It's really frustrating about your sister.

I have a co-worker who I'm pretty sure needs to go gluten-free, but she's adamant that she won't get tested and would rather die than give up bread. (One of the dead bread heads.) I've mentioned it twice in two years, won't bring it up again. The other day she saw me photocopying a recipe from a cookbook and asked if I had a good recipe. I told her she wouldn't be interested b/c it was gluten-free. Her response was "That's right!"

I've shared other gluten-free recipes with her that she's loved, but if you tell her it's gluten-free she's not interested. LOL.

Dead Bread Heads. LOVE it!!

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Dead Bread Heads. LOVE it!!

I like that one! :lol:

I usually say "Gluten Head" to describe the brain stuff I have from gluten :blink:

and I use GEs or WEs---Gluten Eaters/Wheat Eaters for "them"... :lol:

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Learning the ropes and how to" punt" in a gluten- filled world is a bit rough, but if my 84-year-old Mom can do it, anyone can. She goes to weight watchers for her weekly meeting ( she is on maintenance for life) and tells others about gluten sensitivity and celiac and how wheat could be affecting their health. Go Mom! Her lifelong anxiety, stomach and bowel issues, insomnia and GERD are gone. She sees how it affected her whole life now--as it has mine.

IrishHeart, your mom totally rocks!

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IrishHeart, your mom totally rocks!

Hey Celtic Queen! (I feel like we are kindred souls)

Thanks yes, she is quite the character. :lol:

She is very upset that my family has ignored all the info I sent.

She does not understand why they would not do whatever they could to feel well.

Me neither. :rolleyes:

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Hey, I could use another kindred soul. Most days I need all the help I can get :D

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Hey, I could use another kindred soul. Most days I need all the help I can get :D

Well, you're in the right place!

Last year at this time, I was thinking death would be easier; I was unable to think straight, in searing pain, exhausted and sick as a dog every single day for 3 whole years, yet I knew in my heart I COULD get well if I just figured it out.

Now, one LONG year later....next week, I am cooking Thanksgiving dinner for my family again and grateful that my husband and I never gave up hope.

Hang in there, kiddo :)

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I'm just a wheat-allergy person who is gluten-intolerant, but hoestly? The thing that makes most people realize this might be something in the family health history rather than something in my own mind? "I haven't been this.... er... 'regular' in years." No one wants to bring it up to a discussion that they deal with chronic D, but as soon as there is something like a specific food that it can be pinned on, people start to listen.

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When I got my diagnosis I called all family members personally. I told them that a hereditary disease was found with me and that they should be tested as well because the disease doesn't always manifest itself through GI symptoms. That got their attention. Then I went to explain what celiac disease was and how they might be affected. However, most of them didn't understand the part about the symptoms. They just said: well, I don't have GI problems so I don't have celiac disease <_< An aunt didn't want to get tested because she literally said: "What if the test comes back positive? Then I'm in trouble!". Great strategy, darling... Two female family members had a lot of GI problems and vitamin deficiencies and got a blood test. When it came back negative they didn't want a biopsy. Grrr... I've seen a research paper from Spain lately which is about blood testing in adults, they found out that the test is only conclusive for 33% of adult coeliacs. I've stopped bothering about it then, they know what to test for if their symptoms get worse.

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I started to get "celiac is a serious wasting disease in children" lecture last week..

I'll let you guys comment on that one :angry:

((We use "guys" as a non-gender specific term in Australia so anyone is welcome to comment ;) ))

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I find this thread makes me so mad and sad. I try my best to keep my sense of humour but it doesn't work much.

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I started to get "celiac is a serious wasting disease in children" lecture last week..

I'll let you guys comment on that one :angry:

((We use "guys" as a non-gender specific term in Australia so anyone is welcome to comment ;) ))

Using "Guys" for everyone---is the same in the US ;)

Was that comment from a doctor? Because if it came from a non-medical professional, it's understandable. Celiac disease is woefully misunderstood--even in the medical community.

That archaic thinking "children's disease" (or worse, something a child can "outgrow") is what left millions of people world-wide undiagnosed for years. The ripple effect is mind- boggling. How many people died--or are in mental health wards or wheelchairs or battling cancer--because of gluten? Time for these idiots to pick up a medical journal from THIS century once and a while and read what WE ALREADY KNOW. Why did I have to diagnose myself and bring it back to my PC doctor--whose OWN children have celiac--- to hear him say "I did not realize how it manifested in adults"...what Bull---t.

oh, don't get me started on the medical profession. :rolleyes::lol:

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some doctors don't get it, the head of the GI clinic at our children's hospital silt the firm belief that if a child is not malnourished, and has no evidence of anything in the bloodwork than absolutely nothing is wrong, but our regular GI and our pediatrician don't care what blood says, they look at the physical evidence. We have been told we can't get an official diagnosis of glutenintolerance as there's of the GI clinic downs't believe it exists.

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We have been told we can't get an official diagnosis of glutenintolerance as there's of the GI clinic downs't believe it exists.

But do they believe that the moon is made of blue cheese? :lol:

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some doctors don't get it, the head of the GI clinic at our children's hospital silt the firm belief that if a child is not malnourished, and has no evidence of anything in the bloodwork than absolutely nothing is wrong, but our regular GI and our pediatrician don't care what blood says, they look at the physical evidence. We have been told we can't get an official diagnosis of glutenintolerance as there's of the GI clinic downs't believe it exists.

Here is an article you can print off and bring to the doctor. Would they believe one of the foremost authorities on gluten and Celiac Disease research?

http://somvweb.som.umaryland.edu/absolutenm/templates/?a=1474

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some doctors don't get it, the head of the GI clinic at our children's hospital silt the firm belief that if a child is not malnourished, and has no evidence of anything in the bloodwork than absolutely nothing is wrong, but our regular GI and our pediatrician don't care what blood says, they look at the physical evidence. We have been told we can't get an official diagnosis of glutenintolerance as there's of the GI clinic downs't believe it exists.

Hmmm in nursing school we were taught to nurse the patient, not the numbers,...

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Hmmm in nursing school we were taught to nurse the patient, not the numbers,...

This is why nurses are more empathetic and compassionate than most doctors and believe that the patient's level of pain is what he/she says it is. :)

( P.S. I have 4 close friends who are nurses and they are as frustrated with doctors as I am.... :rolleyes:<_< )

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Hmmm in nursing school we were taught to nurse the patient, not the numbers,...

And that is why I like nurses so much better than doctors. For them it's more about making their patients feel better than the size of their ego or how much money they make.

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And that is why I like nurses so much better than doctors. For them it's more about making their patients feel better than the size of their ego or how much money they make.

I've had the best luck with Nurse Practictioners. There was one at our peds office who I loved dearly. She was so down to earth and very open to suggestions. She left and I was tempted to follow her to her new office, but it wasn't feasable for me to do so. Luckily my peds office hired a new NP and she is great too. We also see a NP at our allergy office. He has been wonderful. He is pretty much the feeling that if it makes you sick or hurt you dont eat it and avoid it. He is the one that really encouraged me to put my oldest son gluten free. For being an older gentleman he is very up to date on his information and very open minded.

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Soooo....

I'm almost at the 1 year mark.

I haven't really notified family.... I kind of went through an angry phase??? I sort of hated everyone around Christmas...happened again at Easter (and Easter is my favorite holiday). Anyway... I'm working on it.

Soooooooo.....

I finally feel like I'm at a place where I can write my story, contact people, discuss this with a clear voice.

Sooooooooooooooo.....

I started writing my story. I plan on sending a letter with a web address where I put all the info I've gathered (I'm organizing my info anyway before I lose it).

That's where I'm at. I'm writing it and providing references and........and all I can say is that it's eerie. As I list event after event, dx after dx it starts to become so obvious. So frickin' obvious I have AI issues. And if you connect the dots... Celiac makes perfect sense.

Anyway............

I'm going to keep writing and gathering and organizing. This is my therapy.

And I'm still boycotting holidays. Sort of. That's another post.

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Good on you prickly pear. Be brave!!!!

BTW Excuse my ignorance but what is AI short for?

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Good on you prickly pear. Be brave!!!!

BTW Excuse my ignorance but what is AI short for?

Autoimmune.

I'm very AI. effin' crap.

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    • I have posted on here before. DQ2, brother with celiac, DGP iGA was the only mildly elevated test. Was gluten-free so did 6 week challenge last winter. Negative biopsy. I am gluten-free now but do go out to eat. Prior to the challenge my health was good. Since then I have: Chest pain, pain between shoulder blades, periods of shortness of breath, heart palpitations, one instance of a heart arrythmia episode, neck is tender to touch on one side (they kept saying sinuses or TMJ which my dentist vetoed) ear ache, bowels never sink. Numbness and tingling. Blood pressure variations. Could be doing chores and feel dizzy and it might be 84/52.  not super low, but not typical for me if I'm running around the house.While other days I am mildly hypertensive. Recently lost 5 lbs in 8 days without trying. Recently electrolytes were low, alkaline phosphatese was low. Ferritin started dropping so started liquid iron 2-3 times per day 4 months ago. Primary watching that, I am not anemic but we are nowhere near iron overload either.  GI doc was a dick. Did not even know DGP replaced older tests and he was very condescending When I begged him for help recently and told me to get a second opinion which is exactly what I plan on doing.  I now have pain in my upper GI area. It is tender to touch. I had my gallbladder out in 97 along with a stone and infection in my bile duct. It hurts in this area. Pancreatic enzymes look fine, liver enzymes fine. Pancreatic ultrasound fine. I will now be doing a EUS Soon to look at bile duct, pancreas and liver.   so a typical day for me is that I might feel fine for a while and then suddenly feel like I'm going to pass out. really dizzy, numbness in odd places, like my body has been hijacked. I will typically eat a bunch of food something high protein and in about an hour or so I start to feel better. However, then my upper stomach starts to hurt in place of the passing out feeling. blood sugars are also normal. After getting the " it must be panic attacks" and condescending looks a million times my primary finally ordered an ultrasound of my sore neck and there is an abnormality in my thyroid which she says looks like possibly Hashti's. Except for one time, all my serum TSH tests were normal. We have more blood work on Monday. As I have not put on any weight and there are other symptoms that are closer to Graves.  Has anyone else had any thyroid issues that followed doing a gluten challenge?  where is your stomach pain? Do you have it above or below your belly button? Mine feels like it's in the pancreas area, like 2-3 inches above the belly button and when I push on it it's tender, but not all the time. sometimes i feel it in my back. 
    • Thanks for sharing with me.  I really appreciate it.  Honestly, after a glutening last summer (still do not know what glutened me), I did not eat out for a year!  The risk was too great as my healing time took 3 months (for symptoms to subside) and six months to regain lost weight.  Our recent vacation to Europe was worth the risk  as we traveled with our entire extended family, but we were extra cautious and ate only at celiac-approved places.  Otherwise, we "dined" at markets or ate the food we brought from home.  Thankfully, we did not get glutened (at least we don't think so!)  
    • I do not struggle with this and I was brought up the same way as you. I don't struggle because for many years off & on we didn't have a bathtub, only showers as well as this being therapy or medicinal for the skin - heck even for the muscles as I age. I figure I've earned my right to luxuriate or medicate with baths any time I've a mind to. My husband saw just how bad my dh got & NEVER begrudges me a nice long soak in the big soaking tub we now have.
    • Hi, No, I do not have celiac  disease. I have an ankylosing spondylitis which is an auto-immune disease provoking an inflammation of the joints. Under the advice and supervision of my doctor and the professor at the hospital I follow a gluten free & casein free diet, which is extremely successful in preventing inflammatory events. And I've been doing so, strictly, for more than 6 years. So I'm not Celiac, but I can tell you that I react strongly every time I take gluten even in small amounts. Even soya sauce, which according to this website has an almost zero dose of gluten, is a lot too much for me. Nevertheless I allow myself to eat food which has been processed in a factory which processes gluten. To conclude, I would say that when you are travelling, especially in a country where celiac disease is scarcely known, you should be twice as careful as when you're going out at home. In the end you can never guarantee that the cook has cleaned his pan after using soya sauce and so on... You can only bet
    • Along those lines, many Americans are now pursuing gluten-free eating. Gluten ... Diagnosis of celiac disease typically requires a history and physical ... View the full article
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