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Can anyone give me some advice on what to say to friends and family who think you are a little bit crazy because you avoid eating gluten? My Chinese Herbalist suggested I have DH and I'm positive she's right. I don't want to have the official tests done - they seem like a waste of time and money for an inconclusive result. So, I'm trying to follow a gluten free diet (although the hidden gluten and CC is causing me trouble). My motherinlaw gave me a doubting look and asked me if I was sure that I wasn't just going through menopause? My brotherinlaw asked what proof did I have? and why has this suddenly happened? If I mention celiac and can just feel them sniggering. And these are people who are supposed to be my "loved ones". I just feel like I want to crawl into a box somewhere and hide.

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The positive diagnosis might help but ultimately it boils down to a clash of wills. I agree that further testing is probably a waste of time and money. If you react to the diet in a positve way then that should be proof enough for "you". I have the same problems as you with a positive diagnosis. If people understand Celiac and it's health risks then they will accept what you are doing. To me anyone else and that includes family members as well as friends and or co-workers who refuse to take it seriously are just a waste of your time. The people who I really feel sorry for are those too young to live anywhere but with unbelieving family members. For the time being they are stuck in a very difficult situation. I just try to act as normal as possible and politely decline any efforts to make me change what I will eat or drink. If that is too much for them I have no problem saying goodbye.

Tom

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This situation is non unusual. There are a lot of "Doubting Thomases" <_< .

Just this morning I was telling my husband that there's someone in his family who still doesn't believe that smoking causes lung cancer, etc. (because she smokes -- we're talking about a 54 year old woman not a kid -- & has to justify her smoking and she's one of the doubting Thomasses) as regards celiac also; anyway, I likened it to "everyone knows that too much sun can cause cancer because everyone knows how the sun can burn your skin and everyone knows at least one person who has had biopsies on skin lesions and it was the curable type of skin cancer....that being said I equated skin damage of the sun with lung damage from smoking." But with sun damage is noticable and easily detectable; but lung cancer can ferment and is not visible like the skin is. Smoking is like sun damage but internally.

Anyway, just like it's with smoking-Doubting Thomasses it's the same way with celiac Doubting Thomasses. People aren't satisified unless they can touch, smell, taste or see and hear it or experienced it themselves.

We've learned to avoid the unbelievers as I've noticed (in my opinion) they often are toxic personalities to begin with (uncompassionate, not empathetic, selfish, self-centered, narcissistic, self-righteous, ignoramuses -- gee did I leave anything out? :D ) .

Sorry I sound this way but the person is my husband's sister and she treats him like do-do and belittles his diet, etc. Unfortunately for her, I think she too has celiac but won't get tested or go gluten-free. She also really believes that smoking doesn't cause cancer......and that it's all a lie.....


Husband has Celiac Disease and

Husband misdiagnosed for 27 yrs -

The misdiagnosis was: IBS or colitis

Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,

most prestigious medical groups in northern NJ which constantly advertises themselves as

being the "best." This GI told him it was "all in his head."

Serious Depressive state ensued

Finally Diagnosed with celiac disease in 2003

Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.

Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle

Developed neuropathy in 2005

Now has lymphadema 2006It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

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Guest micah

Crawling into a box may not be a bad idea! LOL! Tom and Deb put it perfectly. I'm learning that this "clash of wills" with these "toxic personalities ...(uncompassionate, not empathetic, selfish, self-centered, narcissistic, self-righteous, ignoramuses --" Nope, I think you got 'em all! :) ), requires us to get very strong willed and dig in our heels and refuse to let them impact our lives. I think avoidance is best, but unfortunately there will still be some that break through so you have to be ready to set your will in stone and act as if you are around a bully, because you are.

I'm learning to give quick, short answers and then get away as fast as possible. I refuse to be drawn into a debate with these people and I refuse to explain myself. For instance, "Are you sure you're not going through menopause dearrrrry?...perhaps you could say, "I'm not comfortable talking about this right now, I'm sorry." When Professor Plum asks, "what proof do you have?" Perhaps, "I really believe in what I'm doing, please respect my choice." I use statements such as "I'm doing my best," "I really believe in what I'm doing," "this is how I want to run my life," ..."Thankyou for asking, but I really don't want to talk about it" And remember, with bullies, you may have to repeat the exact same answer over and over. Refuse to budge. You don't have to become mean, but firm to stand your ground. Anything that stops the engagement with these toxic bully personalities works. Remember that STOP DROP and ROLL thing to get out of being on fire? Use the same STOP DROP and ROLL to end them trying to fire AT you! Stop the conversation as quick as you can, however you can, drop the subject and roll right on out of there! hee hee

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This is the main reason why I am seeking an "official" diagnosis. Most people still place a lot of faith in doctors, and will take an official diagnosis much more seriously than if I suddenly announced I am avoiding gluten. My mom is an R.N., and while she is well awar of doctor's foibles, I know she will be more supportive if I have an official diagnosis. I know many people here have had trouble with family even with a diagnosis, but honestly, I think everyone in my family, except maybe my sister, who always was annoyed with my fatigue when we were growing up, will be very supportive once they have a name to put to my problems over the years.

I also hope a postive test will encourage my mom to get tested, as I think she has it also.


Celiac blood testing negative July 2007

Confirmed diagnosis of wheat allergy by skin test Dec 2007

Gluten-lite since July 2007 (didn't know all the hidden sources of gluten)

Gluten-free since December 2007

Life Long Symptoms

Extreme fatigue--needing 10-12 hours of sleep and still woke up exhusted

Allergic to everything--allergies remained out of control despite shots and strict enviornmental controls in my home.

Severe "sinus" headaches

More Recent Symptoms

IBS symptoms

Severe stabbing stomach pains that started 6 months before diagnosis of wheat allergy.

In my heart I feel it is more than an allergy and that I am gluten intolerant. This is based on my how eerily my childhood maladies match most celiac's histories, and my more recent increase in the severity of my usual symptoms and new digestive symptoms that have already started to subside on the gluten-free diet.

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This is the main reason why I am seeking an "official" diagnosis. Most people still place a lot of faith in doctors, and will take an official diagnosis much more seriously than if I suddenly announced I am avoiding gluten. My mom is an R.N., and while she is well awar of doctor's foibles, I know she will be more supportive if I have an official diagnosis. I know many people here have had trouble with family even with a diagnosis, but honestly, I think everyone in my family, except maybe my sister, who always was annoyed with my fatigue when we were growing up, will be very supportive once they have a name to put to my problems over the years.

I also hope a postive test will encourage my mom to get tested, as I think she has it also.

Gosh, that's way too stressful. Good luck. My husband has diagnosis and he is still disrespected.


Husband has Celiac Disease and

Husband misdiagnosed for 27 yrs -

The misdiagnosis was: IBS or colitis

Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,

most prestigious medical groups in northern NJ which constantly advertises themselves as

being the "best." This GI told him it was "all in his head."

Serious Depressive state ensued

Finally Diagnosed with celiac disease in 2003

Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.

Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle

Developed neuropathy in 2005

Now has lymphadema 2006It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

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I recently got cc and broke out in DH. I was traveling for work and even though I tried, it got cc. I have never broken out so bad, I had outbreaks on my hand, arms, legs, back and stomahe. My co-worker noticed and asked me what it was. She is aware I cant eat gluten and why. When I told her I had accidently consumed gluten on my trip, she made the remark "funny this didnt happen before you stopped eating wheat"! I kept my temper and politely mentioned I had, this was just a worse case.of it. Later at lunch she brought up once again it was strange that I am breaking out worse now. I just changed the subject. (Actually I was curious why it was so much worse this time too...)

What do people think that we somehow make ourselves sick by avoiding gluten? This is the reasons I avoid eating lunch with people and mainly just eat at my desk.


"The only thing constant in life is change"

Celiac not confirmed, but positive results with diet change

Gluten free since 10/06

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This is the main reason why I am seeking an "official" diagnosis. Most people still place a lot of faith in doctors, and will take an official diagnosis much more seriously than if I suddenly announced I am avoiding gluten. My mom is an R.N., and while she is well awar of doctor's foibles, I know she will be more supportive if I have an official diagnosis. I know many people here have had trouble with family even with a diagnosis, but honestly, I think everyone in my family, except maybe my sister, who always was annoyed with my fatigue when we were growing up, will be very supportive once they have a name to put to my problems over the years.

I also hope a postive test will encourage my mom to get tested, as I think she has it also.

The best reason, IMO, to seek official tests and diagnosis is that there are so many other problems that present the same symptoms as Celiac and DH can easily be confused with other systemic rashes. A doc spoke to our local group last year on the subject "What took my doctor so long to figure out I had Celiac" and it was amazing how many other things have similar symptoms (especially for someone like me that was asymptomatic and overweight). We had a pediatrician speaking this year who is Celiac and it even took him awhile to pin it down.


Karen B.

diagnosed with Celiac Nov. 2003

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When I told my motherinlaw what was wrong with me she looked at me and said sounds like IBS, she has that so that makes her an expert on IBS well ok. I said no Celiacs is sometime misdiagnosed as IBS tried to tell her more and almost started to give the copy of Celiac Disease a Hidden Epidimic that I got from the Library, because I think that my sister in law and her could stand to look at it. I havent talked to my sisterinlaw about celiac disease but she has gastric issues too. And at work when I had this nurse that I work with, I told her about what I could possibly have, she asked me are you diagnosed I said no, she said well then you don't have it until you get diagnosed. She is someone who likes to follow rules and such.

donna


Fecal Antigliadin IgA 21 (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA 13 Units (Normal Range <10 Units)

Quantitative Microscopic Fecal Fat Score <300 Units (Normal Range <300 Units)

Fecal anti-casein (cow's milk) IgA antibody 12 Units (Normal Range <10 Units)

HLA-DQB1 Molecular analysis, Allele 1 0501

HLA-DQB1 Molecular analysis, Allele 2 0501

Serologic equivalent: HLA-DQ 1,1 (Subtype 5,5)

You can teach an old dog new tricks!!!

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When I told my motherinlaw what was wrong with me she looked at me and said sounds like IBS, she has that so that makes her an expert on IBS well ok. I said no Celiacs is sometime misdiagnosed as IBS tried to tell her more and almost started to give the copy of Celiac Disease a Hidden Epidimic that I got from the Library, because I think that my sister in law and her could stand to look at it. I havent talked to my sisterinlaw about celiac disease but she has gastric issues too. And at work when I had this nurse that I work with, I told her about what I could possibly have, she asked me are you diagnosed I said no, she said well then you don't have it until you get diagnosed. She is someone who likes to follow rules and such.

donna

I'm going to go out on limb on this one and say that the nurse probably wants to stress that all reasons for the symptoms should be explored before you claim it's celiac. She probably does not want you to overlook another condition (or you might have celiac plus something else).

Inasmuch as my husband has a blood test diagnosis (he got endoscopy a year after being gluten-free he was so scared) of celiac - this was after many years of testing for other ailments. We know - he has celiac, but if he has something else plus celiac medical science hasn't found it as yet ;)


Husband has Celiac Disease and

Husband misdiagnosed for 27 yrs -

The misdiagnosis was: IBS or colitis

Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,

most prestigious medical groups in northern NJ which constantly advertises themselves as

being the "best." This GI told him it was "all in his head."

Serious Depressive state ensued

Finally Diagnosed with celiac disease in 2003

Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.

Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle

Developed neuropathy in 2005

Now has lymphadema 2006It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

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I'm going to go out on limb on this one and say that the nurse probably wants to stress that all reasons for the symptoms should be explored before you claim it's celiac. She probably does not want you to overlook another condition (or you might have celiac plus something else).

Inasmuch as my husband has a blood test diagnosis (he got endoscopy a year after being gluten-free he was so scared) of celiac - this was after many years of testing for other ailments. We know - he has celiac, but if he has something else plus celiac medical science hasn't found it as yet ;)

You know you are right about this she is someoen who follows the rules you kinda have to when your in the medical field for legal purposes. and she is also right about overlooking another medical condition, but everything that I am expericaning are too many for IBS and the others like Crohns I don't have enough syptoms all mine fit Celiacs

I have the following

tooth enamel discoloration young children ask if I brush my teeth and my answer to them is yes but whe I was a kid I didnt the look they give me is cute.

D, alternating with C thin, frothy stools

heartburn

stomachburn

nausea almost to the point of vomiting but never do

headache sometime migranes just recently figured that some were migraines

almost all the neuro stuff like foggyness, forgettfullness, moodiness, and others

always short stautr as a kid always the shortest still am at 36

repeated broken foot 3 times this last time very slow to heal, today I am still in my boot cast, I had started vits to help

so yes I guess there is always room for some other kind of disease to come into play

donna


Fecal Antigliadin IgA 21 (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA 13 Units (Normal Range <10 Units)

Quantitative Microscopic Fecal Fat Score <300 Units (Normal Range <300 Units)

Fecal anti-casein (cow's milk) IgA antibody 12 Units (Normal Range <10 Units)

HLA-DQB1 Molecular analysis, Allele 1 0501

HLA-DQB1 Molecular analysis, Allele 2 0501

Serologic equivalent: HLA-DQ 1,1 (Subtype 5,5)

You can teach an old dog new tricks!!!

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You know you are right about this she is someoen who follows the rules you kinda have to when your in the medical field for legal purposes. and she is also right about overlooking another medical condition, but everything that I am expericaning are too many for IBS and the others like Crohns I don't have enough syptoms all mine fit Celiacs

I have the following

tooth enamel discoloration young children ask if I brush my teeth and my answer to them is yes but whe I was a kid I didnt the look they give me is cute.

D, alternating with C thin, frothy stools

heartburn

stomachburn

nausea almost to the point of vomiting but never do

headache sometime migranes just recently figured that some were migraines

almost all the neuro stuff like foggyness, forgettfullness, moodiness, and others

always short stautr as a kid always the shortest still am at 36

repeated broken foot 3 times this last time very slow to heal, today I am still in my boot cast, I had started vits to help

so yes I guess there is always room for some other kind of disease to come into play

donna

I guess you can tell my thought process is a bit hazzy as well especailly at this time in the morning after working all night.

donna


Fecal Antigliadin IgA 21 (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA 13 Units (Normal Range <10 Units)

Quantitative Microscopic Fecal Fat Score <300 Units (Normal Range <300 Units)

Fecal anti-casein (cow's milk) IgA antibody 12 Units (Normal Range <10 Units)

HLA-DQB1 Molecular analysis, Allele 1 0501

HLA-DQB1 Molecular analysis, Allele 2 0501

Serologic equivalent: HLA-DQ 1,1 (Subtype 5,5)

You can teach an old dog new tricks!!!

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Thankyou everyone for your comments and advice. I was feeling pretty down but now after reading your responses I feel much stronger now and ready to push on and follow my own plan for good health ignoring unhelpful, hurtful comments from those around me. Goodluck to everyone in your gluten-free journey. :)

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Gosh, that's way too stressful. Good luck. My husband has diagnosis and he is still disrespected.

Yeah, I'm not niave enough to think everyone will be supportive. My inlaws don't even take my allergies seriously. But it will be a little easier than not having the diagnosis.


Celiac blood testing negative July 2007

Confirmed diagnosis of wheat allergy by skin test Dec 2007

Gluten-lite since July 2007 (didn't know all the hidden sources of gluten)

Gluten-free since December 2007

Life Long Symptoms

Extreme fatigue--needing 10-12 hours of sleep and still woke up exhusted

Allergic to everything--allergies remained out of control despite shots and strict enviornmental controls in my home.

Severe "sinus" headaches

More Recent Symptoms

IBS symptoms

Severe stabbing stomach pains that started 6 months before diagnosis of wheat allergy.

In my heart I feel it is more than an allergy and that I am gluten intolerant. This is based on my how eerily my childhood maladies match most celiac's histories, and my more recent increase in the severity of my usual symptoms and new digestive symptoms that have already started to subside on the gluten-free diet.

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I don't have DH, but I'd just tell people to come w/ me into the bathroom a few times. They'd believe I was the Queen of Sheba to get out of there!


luvs2eat

Living in the beautiful Ozark mountains in Arkansas

positive blood tests and later, positive biopsy

diagnosed 8/5/02, gluten-free (after lots of mistakes!) since that day

Dairy free since July 2010 and NOT happy about it!!

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