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Will My Friends And Family Believe Me...


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14 replies to this topic

#1 Deanna Marie

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Posted 23 January 2011 - 11:06 AM

Hi Guys, I'm Deanna from the UK and have a question for you :)

I am 100% sure that I have a problem with wheat, but I am nervous that my Celiac blood test will come back negative, although I know from experience that I will need to avoid gluten, I am worried about how I explain to my family that I can't eat wheat etc when they ask me 'are you a Celiac?' and I have to say 'no, I'm not'.

Has anybody had a negative blood test and had difficulties with family thinking that 'it's all in your mind, there's nothing wrong with you...just eat food, you're attention seeking, making a mountain out of a molehill' etc?

I am pretty sure that I'm am just having the blood test so that I can hand my family a doctors note with the proof on it arghhhh!

Many thanks for contributing to this wonderful site btw, you've been a great help to me already and I can see you help many others too.

Deanna

P.S. Much to my dismay the blood test results for Anemia will take only 1 week, the results for Celiac...8 Weeks! Shocking!
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2010 - elimination diet...wheat caused swollen tongue, sore throat, mild cough, dry mouth, increased thirst, teeth/jaw knumbness, difficulty breathing, light-headed, face pain, sinusitus, light/sound sensitivity, joint pain, stiffness, pins and needles, stomach tightness & related tummy problems, low-stamina, muscle-weakness, cold extremities, balance issues, depression, un-clear thinking...and abnormal sensitivity to smells.


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#2 luvs2eat

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Posted 23 January 2011 - 12:09 PM

I don't know why it matters that the "test" proves you have celiac? If eating gluten free makes you feel better, then what's the problem? I guess it wouldn't matter if it was never an issue... meaning you can simply bring your own food to anywhere away from home and don't eat out a lot or do your own research if you do. I've never had a problem w/ people not believing me or saying anything about it at all cause I've never made any of it an issue. It's not that different from a peanut allergy or even a food dislike. If you get a negative blood test, you simply CHOOSE to eat gluten free cause it's good for YOU. It doesn't matter if people believe you or not... as long as you take care of yourself and do what you need to.
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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!!

#3 Deanna Marie

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Posted 23 January 2011 - 01:01 PM

That's very true, thankyou, I'm not sure what planet I've been on recently, I feel that I'm actually not sure why I need to prove anything, it may be, and don't laugh, but my mother is very, well, she know's everything and everybody else knows nothing, and I think maybe I am still feel a little scared of her wrath even though I'm nearly 40 :)

I choose to eat gluten free because it's good for me - I may write that on a little post-it note and stick it on my fridge!

Thankyou again.x




I don't know why it matters that the "test" proves you have celiac? If eating gluten free makes you feel better, then what's the problem? I guess it wouldn't matter if it was never an issue... meaning you can simply bring your own food to anywhere away from home and don't eat out a lot or do your own research if you do. I've never had a problem w/ people not believing me or saying anything about it at all cause I've never made any of it an issue. It's not that different from a peanut allergy or even a food dislike. If you get a negative blood test, you simply CHOOSE to eat gluten free cause it's good for YOU. It doesn't matter if people believe you or not... as long as you take care of yourself and do what you need to.


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2010 - elimination diet...wheat caused swollen tongue, sore throat, mild cough, dry mouth, increased thirst, teeth/jaw knumbness, difficulty breathing, light-headed, face pain, sinusitus, light/sound sensitivity, joint pain, stiffness, pins and needles, stomach tightness & related tummy problems, low-stamina, muscle-weakness, cold extremities, balance issues, depression, un-clear thinking...and abnormal sensitivity to smells.


#4 txplowgirl

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Posted 23 January 2011 - 01:53 PM

Hi Deanna
I totally undertand where you're coming from. I have never tested because the way my luck is I probably would be negative. BUT, I have told my family members that I have had a positive test because I knew they wouldn't believe me about gluten being the reason for most of everyones health problems.
I have several members with different types of cancers, plus rheumatoid arthritis, thyroid disease and lupus, etc. The list just goes on and on. I have sucessfully talked so far 2 cousins and an aunt into trying the gluten free diet. One cousin has had lupus and seizures for over 25 years. She's been gluten free for over 8 months now and she has been so far seizure free for 2 months. This is a lady who has had seizures every 2 days since she was 10. She's 54 now. Even her lupus is starting to get better.
She has told everyone they can kiss her rear end because they just don't want to believe that it's the food we eat that is causing this.
Right now, i'm trying to talk my brother into going gluten free because he has a lot of health problems that can be resolved if he would just do it. It is hard to convince some people. Like the old saying, "You can lead a horse to water, but you can't make him drink."
I wish you luck.
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Lupus, Connective Tissue Disease with Fibro type symptoms, Anemia, Anxiety, Depression, RA, Rynauds Syndrome, Chronic Fatigue Syndrome, Erosive Gastritis, Osteoporosis, Degenerative Disc Disease, Scoliosis, Bulging discs in lower back and neck, Pinched Nerves.

 

Soy free, MSG free, mostly Dairy free. Endoscopy shows blunted Villi which dr states as gluten sensitivity, so goin back to being gluten free


#5 Deanna Marie

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Posted 23 January 2011 - 02:25 PM

Thankyou for your reply, I know that my mother, brothers and sister and their children all show signs of food intolerance, with three of them already milk intolerent, I suppose in my heart I hope for a postive test result, so that I can say quite plainly say to all of them, please, go and get tested for Celieac as it is a genetic problem.

But I now realise that, the test result isn't the most important thing in the world, it's my experience that really counts. it is wonderful to hear that you have been able to help other family members too, you must have been a little nervous about it to start with.

Now I think back, my Mom and Brother only learnt they were intolerent to milk after I drew their attention to it based on my own experiences...it's almost as if our family believes that all food is good for us and can't be the cause of any illness...I suspect your family had similar beliefs, you have done well to help them...I have to build my confidence first...it does make me giggle to imagine a 54 year old lady saying they can 'kiss my butt'!

I hope that when the results come through, I will not lose heart, either way... I've already put the post-it note on my fridge with a big smiley face :)




Hi Deanna
I totally undertand where you're coming from. I have never tested because the way my luck is I probably would be negative. BUT, I have told my family members that I have had a positive test because I knew they wouldn't believe me about gluten being the reason for most of everyones health problems.
I have several members with different types of cancers, plus rheumatoid arthritis, thyroid disease and lupus, etc. The list just goes on and on. I have sucessfully talked so far 2 cousins and an aunt into trying the gluten free diet. One cousin has had lupus and seizures for over 25 years. She's been gluten free for over 8 months now and she has been so far seizure free for 2 months. This is a lady who has had seizures every 2 days since she was 10. She's 54 now. Even her lupus is starting to get better.
She has told everyone they can kiss her rear end because they just don't want to believe that it's the food we eat that is causing this.
Right now, i'm trying to talk my brother into going gluten free because he has a lot of health problems that can be resolved if he would just do it. It is hard to convince some people. Like the old saying, "You can lead a horse to water, but you can't make him drink."
I wish you luck.


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2010 - elimination diet...wheat caused swollen tongue, sore throat, mild cough, dry mouth, increased thirst, teeth/jaw knumbness, difficulty breathing, light-headed, face pain, sinusitus, light/sound sensitivity, joint pain, stiffness, pins and needles, stomach tightness & related tummy problems, low-stamina, muscle-weakness, cold extremities, balance issues, depression, un-clear thinking...and abnormal sensitivity to smells.


#6 Jill0711

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Posted 24 January 2011 - 11:29 AM

Wow! Eight weeks?!? That is a really long time to wait on results. I thought 1 week to wait on biopsies a long time. I hope that the time passes quickly for you and you get the results you are seeking. In the whole scheme of things, just remember that you are in charge of your own body and your own health. Don't ever apologize for doing what you need to do to take care of yourself even without a positive test. For the record, my test was negative, but my biopsy was positive. It is possible to have a negative test and even a negative EDG and still have Celiac.
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#7 Keela

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Posted 25 January 2011 - 04:31 AM

I tested negative for wheat allergies and celiac... When my family asked why I don't eat it I explain what happens to me in graphic detail... Very graphic. They only ask once :)
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Wheat free March 2008
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#8 Cypressmyst

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Posted 25 January 2011 - 01:17 PM

You can just tell them you have Celiac or begin educating them on Gluten Sensitivity/Intolerance. It has to start somewhere and it isn't going to come from the pill pushers (Docs and T.V). This is a grassroots effort. ;)

My family has been skeptical and fascinated all at once. :rolleyes: It is very bizarre.

However I have had several friends go gluten free since I told them about it and the results speak for themselves. B)
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#9 Deanna Marie

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Posted 23 February 2011 - 11:00 AM

Thank you all, I'm glad to say that I'm feeling less anxious and able to think a little more clearly now that I've stopped eating wheat now. The only person who has dismissed my food intolerance is the CBT counselor I am seeing, who is quite certain that my symptoms are caused by depression and not food, needless to say, I haven't bothered continuing the discussion with her because it was quite clear after one session that she would not be swayed from her belief. Talk about inappropriate bias from a proffesional. I am quite sure that at large number of people with anxiety and depression could be helped by looking at what they eat!

My apologies for putting my post in the wrong section, I initially intended to ask friends and family how they initially reacted to discovering their loved-one had coeliac, but in my hazy, foggy, anxious state of mind didn't quite know what I was doing at the time :unsure:

kind regards

Deanna
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2010 - elimination diet...wheat caused swollen tongue, sore throat, mild cough, dry mouth, increased thirst, teeth/jaw knumbness, difficulty breathing, light-headed, face pain, sinusitus, light/sound sensitivity, joint pain, stiffness, pins and needles, stomach tightness & related tummy problems, low-stamina, muscle-weakness, cold extremities, balance issues, depression, un-clear thinking...and abnormal sensitivity to smells.


#10 nmthommy

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Posted 25 February 2011 - 10:27 AM

I tested negative for celiac and gluten sensitivity with the blood test. I then had a stool panel done and it shows that I'm highly gluten sensitive. Less than 10 units is normal. My result is 151 units.
I also say I have celiac because it's treated the same way. I highly recommend the stool panel test with EnteroLab. www.enterolab.com
I also did their other tests one being a DNA test that shows I inherited it from my parents and my children have at least one gene. I'm getting them tested soon.
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#11 Juliebove

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Posted 26 February 2011 - 01:51 AM

My daughter is not celiac but she has IgG allergies to wheat and some other foods. The typical skin prick at the allergist did not show an IgE allergy. But wheat is still a problem for her.

My mom is not a celiac nor does she show any kind of allergy to wheat. But she still can not eat it. She has Rhuematoid Arthritis and for that reason must avoid wheat and nightshades. If she does not, her joints swell and she has a lot of pain.

I have IgG food allergies, OAS (oral allergy syndrome), GERD and gastroparesis (slowed digestion). For these reasons there are certain foods I simply can not eat. I also can't tolerate garlic except in very small proportions. Gives me horrid stomach pains. Oh yes, and then there is the diabetes. Have to watch the carbs.

I can think of one person I know (who shall remain nameless) who does not believe that any of us have a problem with these foods. And we do not think very highly of him for that and other reasons.

If you have a problem with wheat and tell your friends this, but find that they do not believe you, then they are not really your friends.
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#12 mcc0523

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Posted 28 February 2011 - 06:27 AM

Thank you all, I'm glad to say that I'm feeling less anxious and able to think a little more clearly now that I've stopped eating wheat now. The only person who has dismissed my food intolerance is the CBT counselor I am seeing, who is quite certain that my symptoms are caused by depression and not food, needless to say, I haven't bothered continuing the discussion with her because it was quite clear after one session that she would not be swayed from her belief. Talk about inappropriate bias from a proffesional. I am quite sure that at large number of people with anxiety and depression could be helped by looking at what they eat!

My apologies for putting my post in the wrong section, I initially intended to ask friends and family how they initially reacted to discovering their loved-one had coeliac, but in my hazy, foggy, anxious state of mind didn't quite know what I was doing at the time :unsure:

kind regards

Deanna


I would think about getting a new therapist. Yes, they "only" deal with emotional problems, but the good ones will recognize that physical illnesses can have things like depression and anxiety as symptoms, sometimes the only symptoms. In fact, it was a psychologist friend who first told me to consider vitamin deficiencies, perhaps caused by celiac or something else that causes malabsorption, and that he didn't believe that I ONLY had problems with depression/anxiety.

Something like that (that she doesn't believe that food intolerances can lead to symptoms, even after you told her that it does do that to YOU) is a major no-no for me in a therapist and a sign that they should be fired, if at all possible.
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DX: Ehlers-danlos syndrome, cervical syrinx, Postural Orthostatic Tachycardia Syndrome, Barrett's Esophagus, GERD, osteoporosis, thyroid disease, anemia, hypokalemia, niacin deficiency, vitamin D deficiency and various other malnutritions.

Although not diagnosed officially yet, I have suspected celiac since October of 2010. At least 2 separate physicians who are experts with collagen deficiencies (such as Ehlers-danlos syndrome) have mentioned the possibility to me, and one has tested (although I haven't gotten the results back yet).

#13 brittanymaine

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Posted 16 March 2011 - 10:04 AM

Your family should only want the best for you, I don't see why they wouldn't believe you. If they don't believe you have an allergy to gluten, you should explain to them what could happen to you if you continue to eat gluten
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#14 WW340

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Posted 18 March 2011 - 06:07 AM

I am not sure why people that have celiac disease or gluten intolerance feel the need to produce proof to friends and family.

I was "classically" diagnosed, however, I have never shown any family member or friend my results. It never occured to me that maybe someone would not believe that I had it.

How many people with various food allergies are expected to present proof of such allergy?

Lactose intolerance is most frequently diagnosed by elimination, yet, I don't see people really concerned about whether or not someone will believe they are lactose intolerant.

You were sick. You have been tested by elimination. You feel better on the diet, and your symptoms are improved or resolved on the diet. Case closed!

If you treat this very matter-of-factly, they will get it. There may be some initial confusion about what the disease is and what it entails, but you can help them understand that by providing information about the disease.

I really think some folks misinterpret lack of knowledge about the disease with not believing you have it. I know lots of people find it pretty unbelievable that there are people in this world that cannot eat wheat. I simply educate those people.
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Positive Bloodwork January 2007
Positive Biopsy Feb. 2007
Gluten Free since January 2007

HLA-DQB1 Molecular analysis, Allele 1 0201
HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 2,3 (Subtype 2,9)

#15 Takala

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Posted 18 March 2011 - 01:21 PM

Some people's relative's are more..... difficult than others. :P
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