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ami27

How Do You Deal With Other People's Reaction

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It has always bugged me for people to concern themselves with what I'm eating. Now that I have to be so careful it bugs me even more. Saturday night we went out to dinner with another couple. We went to a movie and to Outback. This friend is a really close friend so I told her about the testing that I had done and that it came back negative. I also told her I didn't care what the test said, because I knew how much better I felt not eating gluten. I also explained to her the challenge I did and the mistakes I've made and ended up being sick from it. So at the restuarant I ask for a gluten-free menu. They go to get it and she made a snide remark about 'the tests being negative'. This is probably the 3rd time she's made a similar remark. I once again explained that testing is less than perfect and many people do test negative. UGH. I shouldn't let it bug me, but it does. I just wish I had never told her....or that I told her the test was positive.

Ami


Ami

Hypothyroid - diagnosed early 1999

Negative blood work for Celiac 12/05

Gluten free since 12/05

Tested positive for heavy metal toxicity, low functioning thyroid (even while taking Armour), hormone imbalance & adrenal fatigue 9/07

Started chelation for heavy metals began new medication/supplements to balance thyroid, hormones and adrenals 9/07

Enterolab Results:

Myself - positive IgA: 11

HLA-DQ 2,3 (Subtype 2,7)

11 yr old son - positive IgA: 11

HLA-DQ 2,1 (Subtype 2,6)

8 yr old son - negative

HLA-DQ 3,1 (Subtype 7,6)

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Tell her that the test is for celiac, not non-celiac gluten intolerance. Tell her that non-celiac gluten intolerance is tested by dietary response, so you tested positive for it. There is also Enterolab, but you don't have to tell her that. You can also tell her that traditional allergy testing is done by dietary response. In the words of one of my docs (my ob/gyn), why are you looking for clinical proof? Dietary response IS clinical proof!

From now on, claim gluten intolerance, don't mention tests. People won't ask how you know unless you bring it up.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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Guest cassidy

My husband would react the same way in the beginning - my tests were negative. He saw how much better I felt and he doesn't do that any more.

I quit telling people about my negative test results for that reason. It opened the door for discussion when there is no discussion to be had. So, I just tell people in a matter-of-fact way that I have celiac and I'm on a gluten-free diet. If you say it with confidence, they don't question you, not even doctors. Depending how much they ask I may say that you can be diagnosed by diet, endoscopy or blood test, but most people don't ask that much.

It is frustrating when those close to you doubt you, and I don't know your story, but probably many doctors have doubted you as well. I wonder in 50 years how much we will know about celiac and how common it will be. I bet things will be much different.

I wouldn't share the story of how you got to the diagnosis and skip to the part about how great you feel. Hope you had a good meal!

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It has always bugged me for people to concern themselves with what I'm eating. Now that I have to be so careful it bugs me even more. Saturday night we went out to dinner with another couple. We went to a movie and to Outback. This friend is a really close friend so I told her about the testing that I had done and that it came back negative. I also told her I didn't care what the test said, because I knew how much better I felt not eating gluten. I also explained to her the challenge I did and the mistakes I've made and ended up being sick from it. So at the restuarant I ask for a gluten-free menu. They go to get it and she made a snide remark about 'the tests being negative'. This is probably the 3rd time she's made a similar remark. I once again explained that testing is less than perfect and many people do test negative. UGH. I shouldn't let it bug me, but it does. I just wish I had never told her....or that I told her the test was positive.

Amy

IMHO this is not much of a friend. I would hesitate to share any personal info with her again and find someone else to go to dinner with. Real friends don't make snide remarks like that.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

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

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That's awful. I went through something similar with a few people, some worse than others. If she can't be supportive and is even possibly endangering you I think that's over the line. I mean, what if the waiter heard her comment and decided to blow off your gluten-free requirement on your order? You could have gotten really sick.

Here's a statistic for you (not a very scientific one, but don't tell her that ;) ) A couple of months ago I posted a poll asking people if they had a celiac diagnosis from a doctor or not. I think only 100 people answered, but I watched the numbers as they came in. Consistently, 60% of the people here do NOT have a definitive diagnosis from a doctor (most likely because they either had negative tests, or not positive enough tests for that particular doctor).

60% !!!

So lets spin this into a soundbite for you to use --

"I belong to one of the biggest support groups for celiac disease in the country. Right now there are almost 14 THOUSAND members from a half dozen countries. A recent poll showed that more than half were diagnosed by dietary challenge after negative or inconclusive test results."

Hope that helps.

:)

Nancy


The person who says it cannot be done should not interrupt the person who is doing it.

~Chinese Proverb

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IMHO this is not much of a friend. I would hesitate to share any personal info with her again and find someone else to go to dinner with. Real friends don't make snide remarks like that.

Very true, sounds more like a sibling than a friend ... it's exactly how my sister is!!


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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Thanks everyone. And thanks Nancy for the soundbite. I'm definitely going to use it :) I do chalk this up to her not understanding. I don't think she means to be insensitive...it's just ignorance of the subject. Luckily the waitress was awesome. She came back and told me that she told every person in the kitchen thtat it was very important to take care of my order because of my 'allergy'. I didn't get glutened either!! It was a great experience, minus my friend not understanding my situation. I do regret telling her though. And I have only told one other person outside of my household which I have regretted that as well. So....lesson learned. I will not be discussing it with anyone else.

Ami


Ami

Hypothyroid - diagnosed early 1999

Negative blood work for Celiac 12/05

Gluten free since 12/05

Tested positive for heavy metal toxicity, low functioning thyroid (even while taking Armour), hormone imbalance & adrenal fatigue 9/07

Started chelation for heavy metals began new medication/supplements to balance thyroid, hormones and adrenals 9/07

Enterolab Results:

Myself - positive IgA: 11

HLA-DQ 2,3 (Subtype 2,7)

11 yr old son - positive IgA: 11

HLA-DQ 2,1 (Subtype 2,6)

8 yr old son - negative

HLA-DQ 3,1 (Subtype 7,6)

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It might sound unforgiving but we "dump" people who either say things like that, or make faces and roll eyes or say or do anything like what your friend did. We do not have the time nor patience for those who WANT to stay ignorant or for those who dismiss celiac disease as "all in the head" or just want to make us know that they feel we are overeacting or the like. That behavior is toxic and leads only to us being frustrated and hurt. Life's to short to have to keep explaining yourself over and over.


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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It is so sad that there seems to be a odd rating system in our country. If you have a "note" from the doctor your diet is ok. If you want to go on an extream fad diet (healthy or not) it's ok, but don't even think of doing something that you find healthy for yourself, because that is outside of the box.

I am so sorry your friend treated you like that. I don't get it. You said she is a good friend, try calling her on it. Tell her that as a friend you would expect support even if she doesn't "get it". Encourage her to surf this site. I've done it for friends that had problems I didn't understand.

Good luck


Stomach problems began November of 2005

Gall bladder removed April 2006

Positive Blood test October 2006

Refused endoscope

Gluten-free since January 21, 2007

Positive reaction to diet

The Lord gave, and the Lord has taken away; Blessed be the name of the Lord. Job 1:21b

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I like the "Well, if you know that hitting yourself in the head with a hammer hurts, do you really need your doctor to tell you to stop, or are you going to listen to your own brain?" approach. Snarky, but then again, apparently so is she.


Tiffany aka "Have I Mentioned Chocolate Lately?"

Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy

G.F. - September 2003; C.F. - July 2004

Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me

Bellevue, WA

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Very true, sounds more like a sibling than a friend ... it's exactly how my sister is!!

Or a Sister in law like mine. :angry:

I would stay away from her as much as you can.

It is hard for me to handle other peoples remarks. My husbands family do not understand me much. I have gotten much more understanding from strangers than them. I try to ignore it. Just do my thing. I know I feel better this way and do not need more proof.


One Celiac gene and one gluten intolerance gene (HLA-DQ 2,1).

Grain free, casein free, soy/legume free + a bunch of allergies I have had since I was a child (stone fruits, nuts..carrots)

Following the Specific Carbohydrate Diet, but no nuts, legumes or casein.

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Thanks everyone. And thanks Nancy for the soundbite. I'm definitely going to use it :) I do chalk this up to her not understanding. I don't think she means to be insensitive...it's just ignorance of the subject. Luckily the waitress was awesome. She came back and told me that she told every person in the kitchen thtat it was very important to take care of my order because of my 'allergy'. I didn't get glutened either!! It was a great experience, minus my friend not understanding my situation. I do regret telling her though. And I have only told one other person outside of my household which I have regretted that as well. So....lesson learned. I will not be discussing it with anyone else.

Ami

I have been to Outback twice since finding out they had a gluten free menu. The servers are obviously given some education in gluten intolerance, because they were very careful, and one server asked if I wanted him to find out if they could make my boyfriend's cheese skins gluten free! They couldn't :( (sigh) - but I felt very well taken care of - it's nice to feel that way, isn't it?

I have always just said "I found out recently that I am gluten intolerant." When people ask me how I found out, I say that because of my symptoms, it was suggested that I try cutting it out of my diet, since that is the most reliable way to find out. I don't mention my negative blood tests - which I didn't have done until I was gluten free for awhile, so that may be why they were negative. And I go on to say how I can't believe the difference it has made in the way I feel. Usually my friends have more questions about it, but more because they want to understand how serious it is and how I handle it.

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I can't completely relate because all my tests where positive and I had total villous atrophy, so no one really questioned my diagnosis; but I would simply tell this "friend" that maybe she should try drinking Drano, and see how she feels. Then when she doesn't feel so well drinking the Drano tell her that you think it's absurb that she not continue drinking it.

Ok obviously that could potentially kill her so I know she would never do that, but it's just the analogy of why would you continue eating something that is making you sick. Regardless of what the tests say you know you're body and are doing what you need to have the best quality of life. There are plenty of people on this board who didn't test positive for celiac but feel just as sick if they have gluten as those of us who do have positive blood and endoscopy tests.


Jillian

Positive Blood test and Biopsy

Inflamed stomach lining

Gluten free since July 6, 2005

Tarrytown, NY

"Sometimes being a b$tch is all a woman has to hold onto." - Dolores Claiborne

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my tests came back positive. but my husband was a skeptic, and for the first few months kept telling me that he thought i needed to get a second opinion, b/c he didn't believe it was celiac disease. lol he knows better now :rolleyes:


Sweetfudge

Born and raised in Portland, OR; Currently living in Provo, UT

Gluten-free since June 2006

Also living with Hypoglycemia since 1991

Dairy-free for good since summer 2008

Started IBS diet and probiotics at GI's recommendation - Fall 2008

Also avoiding: potatoes, beans, crucifers, popcorn, most red meat, coconut milk :(

Started eating a Paleo diet Spring 2011. Love it!

The grass is always greener where you water it.

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my tests came back positive. but my husband was a skeptic, and for the first few months kept telling me that he thought i needed to get a second opinion, b/c he didn't believe it was celiac disease. lol he knows better now :rolleyes:

Oh my word, Jillian, the "Drano" line is my favorite, funniest thing I've read here for awhile- you made me laugh out loud, albeit in a dark, nearly demented way! That's so good- I'm afraid I'm going to steal it. I'll give you credit though ;I hope you don't mind. I'm going to chuckle about that all day...wish I had that in hand on a coupla previous occassions... funny...sad, but true

Thanks.

lisa

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I am allergic to the antibiotic sulpha. There is no test for it, just that I get really sick and my Dr. made a note of it and never gives me sulpha.

I'm allerfic to gluten, and I get really sick if I eat it, therefore I will never eat it again. That's how I explain it. People can relate to that.

Hope that helps!


Rheumatic fever at age 5 and again at age 6. Antibiotics for 6 years to prevent strep throat.

Anemia, Mono, Hepititis, Pernicious Anemia, Enlarged Heart, Osteopenia, Vitamin D deficiency, Ataxia, Digestive issues, reactive hypoglycemia, and on and on and on!

Following the SCD diet after gluten free didn't solve symptoms. Much better and getting back my life!

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I am responding to the original post.

First, I find her snide comment to be irritating and, if it were me, knowing who I am... I would definitely have called her on that comment and been like "I may be wrong but you sound irritated by my dietary choice. What do you mean by that?".. and put the enitre comment back on her. There is no need to explain your choices. If not eating gluten makes you feel better.

If it happens again and she makes another snide comment, you could simply say "While I appreciate your confusion about negative tests, it is my choice to eat gluten or not. You seem irritated by my decision. Is there something else that is going on for you?" And put that snide comment right back in her lap. There is no need for you to justify your dietary behaviors to her. It is almost as if she is trying to make you feel guilty about the diet. You certainly don't need that. Perhaps she is one of these people who can dish it out but not take it.

My two cents.


Diagnosed 11-11-05 after 3 months of major symptoms, including 2 hospitalizations and 7 ER visits for dehydration and syncope. Otherwise, I had all "normal" blood tests and major scans. During those 3 months, lost 20 pounds, all my muscle tone, and ultimately could not walk for 2 days. Spent 6 days during the second hospitalization hooked up to IV and STILL passing out IN BED due to malnutrition with doctors staring at me AS IF it was all IN MY HEAD

Other related symptoms:

Osteopenia

Hypothyroidism

Gluten Ataxia - three "nodes" recently found in my brain (thought I had MS)

Muscle weakness

Fatigue

Chronic Constipation

45 pound weight gain since going gluten-free!

gluten-free since 11-11-05. Cannot eat bananas, potatoes, or spinach. Recently reintroduced yogurt into my diet and able to tolerate plain yogurt with sugar.

HATE the diet but psychologically tolerating it for my health.

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... And I have only told one other person outside of my household which I have regretted that as well. So....lesson learned. I will not be discussing it with anyone else.

Ami

Sorry that your first few experiences with other people were so negative. Mine have not all been bad. Certainly there are some people who think you are just making it up (for the fun and expense of shopping for gluten-free food??). But there are other people who have their own friends and relatives with the same issues, and who will understand and support your efforts to remain gluten free.

At work, when people bring around treats or baking (sigh) I just politely decline and say that I have "food allergies". Enough said in that situation. At restaurants, I often go with the "food allergies" explanation as well - restaurant staff are more likely to understand that an "allergy" means I can't eat it or I will get sick. They don't need to know about blood tests and biopsies :unsure: (ick).

When I travel with people from work, I usually give a little more detail. I helps me ensure we choose restaurants that will have acceptable choices. They don't want to deal with me being sick and missing meetings ;)

Hang in there. As you have more experience and are more confident that you have made the right choice, it will get easier to explain as much or as little as you want, and still ask for the food you want.

Debbie


Gluten free since July 97

corn free since Jan 98

Never diagnosed by a Doctor

Symptoms cleared on gluten-free diet

Mom and one sister are also gluten-free

One sister with type I diabetes (diagnosed at age 10)

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Well, many of the tests come back with false negatives because they were not done right or you were not on enough gluten at the time, etc. Tests are not infallible.

First, she is not much of a friend. If it makes you feel better perhaps indulge yourself in a white lie for your health and sanity. Tell her you have to redo the tests because they discovered something was done wrong. Then wait a few weeks and tell her you had the test and this time it did come back positive. Then don't tell anyone again that it was negative just tell them you have the disease. Gluten intolerance is not a lot of difference than Celiac Disease and who cares whether you do or don't have it as long as YOU feel better without the gluten.


Rusla

Asthma-1969

wheat/ dairy allergies, lactose/casein intolerance-1980

Multiple food, environmental allergies

allergic to all antibiotics except sulpha

Rheumitoid arthritis,Migraine headaches,TMJ- 1975

fibromyalgia-1995

egg allergy-1997

msg allergy,gall bladder surgery-1972

Skin Biopsy positive DH-Dec.1 2005, confirmed celiac disease

gluten-free totally since Nov. 28, 2005

Hashimoto's Hypothyroidism- 2005

Pernicious Anemia 1999 (still anemic on and off.)

Osteoporosis Aug. 2006

Creative people need maids.

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