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Did A 'test'


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20 replies to this topic

#1 Bonnie

 
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Posted 26 September 2005 - 12:08 AM

There is something wrong with me. Apart from Gluten that is! :rolleyes:

I took my son out for dinner on Friday night to celebrate him doing so well at school. I couldn't find anything on the menu that was 'safe'. I asked for plain meat and french fries. I didn't enjoy it - too worried I was going to get sick.

So for some stupid reason I decided to test myself. On Saturday I had 2 slices of toast - from ordinary white bread.

I am so sick I just want to curl up and cry my eyes out but I'm at work. I got Diarrhea all weekend, hugely bloated etc. etc. Today my head aches, nausea and the brain fog is unreal. I don't know if I can control my emotions - I am ready to burst into tears. How embarrassing. My arms are so sore I can hardly lift them to type this. People are going to have to wear gas masks to go near the loo today.

Especially since its self-inflicted. Why do I do it? I don't have an official diagnosis from a proper Medical Doctor is why. I have it from the BEST System but I can't get it through my thick head that this is real. This is the third 'test' I've done in the last 6 months - with terrible repercussions each time.

Does this prove I have gluten intolerance?

Sorry guys, just feel so sorry for myself. Seeing a specialist next week but I don't think I can do a gluten challenge - won't cope. How will I get my official diagnosis I so badly need?

Yvonne
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#2 Guest_nini_*

 
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Posted 26 September 2005 - 03:01 AM

Oh dear... sorry you are feeling so badly, but I honestly do think you have your answer. Yes you are gluten intolerant. Your body tells you so everytime you test yourself... Honestly you don't need a medical dr. to tell you this. Listen to your body, you know more about your own body than any medical dr. is going to know.
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#3 VydorScope

 
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Posted 26 September 2005 - 03:19 AM

Oh dear... sorry you are feeling so badly, but I honestly do think you have your answer. Yes you are  gluten intolerant. Your body tells you so everytime you test yourself... Honestly you don't need a medical dr. to tell you this.  Listen to your body, you know more about your own body than any medical dr. is going to know.

<{POST_SNAPBACK}>



I agree.
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#4 nettiebeads

 
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Posted 26 September 2005 - 04:58 AM

Oh dear... sorry you are feeling so badly, but I honestly do think you have your answer. Yes you are  gluten intolerant. Your body tells you so everytime you test yourself... Honestly you don't need a medical dr. to tell you this.  Listen to your body, you know more about your own body than any medical dr. is going to know.

<{POST_SNAPBACK}>

I agree also. By the way, why is everyone so hung up with a test for dx? Remember, these tests are relatively new to medicine, Celiac has been around for much much longer than the medical tests. The diet challenge is a proven diagnostic tool and you have what is termed a positive diet challenge. That was how I was diagnosed 9 years ago. I know I could do the bloodwork and DNA and all that happy stuff still, but so long as I'm gluten-free, I'm healthy and that's all that matters. And as far "testing" yourself, don't sweat it. It's part of being a newbie to celiac disease and denial. After awhile, you will come to associate ALL of the negative side effects whenever you see some food from your former life that you will gladly forego it. Trust me, I've (we've) been there. Don't beat yourself up about it; you are human.
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#5 jenvan

 
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Posted 26 September 2005 - 06:50 AM

I would say you have your answer too. If you are going to be miserable and suffer great damage, the test may not be worth it! There are quite a few individuals on this site who diagnosed with only a diet challenge and not a biopsy. You would have to eat gluten for a matter of weeks--that could be serious!
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#6 ravenwoodglass

 
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Posted 26 September 2005 - 07:45 AM

.

Especially since its self-inflicted.  Why do I do it?  I don't have an official diagnosis from a proper Medical Doctor is why.  I have it from the BEST System but I can't get it through my thick head that this is real.  This is the third 'test' I've done in the last 6 months - with terrible repercussions each time.

Does this prove I have gluten intolerance?

Sorry guys, just feel so sorry for myself.  Seeing a specialist next week but I don't think I can do a gluten challenge - won't cope.  How will I get my official diagnosis I so badly need?

Yvonne

<{POST_SNAPBACK}>



You have done a gluten challenge 3 times and had the same result each time. Your reaction was a celiac reaction, there is no doubt. Why do you need a doctor to confirm what your body is telling you. If I listened to my doctors I would still be on at least 5 scripts a day and would have had intestinal surgery or committed suidide by now, if I could have found the energy. Stay away from gluten, accept that you have the celiac DIFFERENCE, now that you know what is the problem you won't be diseased anymore.
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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)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
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 with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity 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)

#7 tarnalberry

 
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Posted 26 September 2005 - 09:11 AM

If it helps, many doctors find that repeat empiric testing, like you have done, IS diagnostic for celiac disease. So many would DX you based on the tests you've run on yourself.
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G.F. - September 2003; C.F. - July 2004
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Bellevue, WA

#8 Guest_BERNESES_*

 
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Posted 26 September 2005 - 10:43 AM

Oh Bonnie- like you, I don't have an "official diagnosis" but about three weeks ago, I saw my doctor after getting sick and I told her that that was what was driving me crazy. She told me that she could care less what the tests say. If I react to gluten, there is my answer. Hearing iot from a doctor made a difference, but hearing it from your own body is the biggest answer of all.
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#9 happygirl

 
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Posted 26 September 2005 - 11:38 AM

I hope you feel better soon....I think we have all "tested" or at least thought about testing, so its not just you. Takes everyone different amounts of time to find what works for them. I never thought I could live with this diet, but when I went gluten free, I felt like I was handed my life back, literally. Now its my goal to stay as gluten free as possible for as long as possible. Good luck and feel better soon....
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#10 drewsant

 
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Posted 26 September 2005 - 02:31 PM

I had blood tests done that came back negative, but the Dr. said that if the diet worked, then that is all the proof we need for diagnosis since blood tests often come back negative. I was told to go gluten-free for a month and see what happened. I finally was feeling better, so I decided to test myself to just see, ( I was told by my doctor to do this also) and got sick the next day with diarrhea. I don't have the brain fog, pain, etc, just diarrhea. So I thought maybe it was a fluke. Went gluten-free again for about another 6 weeks and was fine, and did it again, got sick again, but now I'm having diarrhea every day with no explanation. No gluten. I'm eating salads and plain chicken breast every day, and dark chocolate for a snack that I know doesnt have gluten. I'm basically eating only once a day because of this. So I'm being tested for allergies in a few days. It is hard because I thought I had my answer, but like someone pointed out to me, what if I got better just because I was cutting out fat? It would be nice to have a definitive answer, but I don't want to go thru the biopsy to find out for sure. I know for me, since I'm still having diarrhea, it is a nagging question in the back of my mind, that maybe it isn't celiac.

I guess that probably doesn't help you, but I know about the nagging feeling that maybe you need an official diagnosis.
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#11 Felidae

 
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Posted 26 September 2005 - 05:24 PM

I don't have a diagnosis either. I've been gluten-free since June 9th and my doctor said to go out and have a glutenous meal after three months of being gluten-free and then I would know for sure. But I have been too chicken to try gluten because I feel so great not having it.
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First cousin dx'd with Celiac Disease
Grandmother died of malnutrition b/c everything made her sick... sounds like celiac to me.
Gluten-free since June 2005
Dx with IBS February 2005
Blood tests both negative (or inconclusive?) for celiac (in 2002 and 2004)

#12 KaitiUSA

 
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Posted 26 September 2005 - 05:32 PM

The only thing to do is learn from your mistakes and know how bad you feel when this happens. At first I would figure it can't hurt me that much and since I was sick no matter what I ate and didn't react much to gluten like I do now and I would test myself sometimes and I tell you that was the worst thing I could have done for myself. I delayed the healing process.
Whenever you get the urge to test yourself try to think about the risks involved and how bad you feel when you do actually eat some....then treat yourself to a yummy treat that you can have.
Feel better
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Kaiti
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#13 Claire

 
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Posted 26 September 2005 - 07:09 PM

Agreed - the body's response is the best test of all.

However the are good reasons to pursue a definitive, in print diagnosis. Celiac is genetic. Family members are usually reticient if not outright antagonistic. They need to be tested as well - whether or not they have symptoms. Your self diagnosis won't convince anyone and family do need to be convinced.

The tests, if positive, will give you specifics - health of the intestinal wall, nutrient absorption, etc. Good luck. Claire
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#14 Bonnie

 
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Posted 26 September 2005 - 10:34 PM

YOU GUYS ARE WONDERFUL! Thank you so much for all your responses.

I honestly don't think I would have got through the last 6 months without the support and info on this site.

I am feeling a bit better today. Last night I had shooting pains very low down in my lower abdomen that were so bad I thought I was going to pass out or end up in hospital. The pains have eased but the sore arms and jaw, tiredness etc. are still there. But its ok because I know it has to run its course and I'll feel better soon.

Does anyone else get that excruciating shooting pain - it started on the left and went into my groin -weird?

You know what my problem is - 6 months ago I had never heard of gluten or Celiac. So to have this type of reaction to wheat seems absolutely bizarre. I can see the people around me think its impossible.

Claire I hear what you are saying. My mother has lupus, diabetes, loss of hearing, chronic D, weights 81 Pounds, organs are failing. She is 55. I told her about the gluten but she refuses to change her diet. However, I want to get my children tested.

Yes I have my proof now - I will NEVER willingly eat gluten again.

Thanks again everyone.
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#15 jenvan

 
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Posted 27 September 2005 - 05:04 AM

Yea Yvonne! You're on your way! No more gluten!
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Jen
Indianapolis, IN

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