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Melstar23

Gi Specialist Says It's Not Celiac

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I saw a GI specialist today and the hospital. I have been waiting many months to see him and after this I don't have anymore answers.

I have been suspicious of celiac as I was getting severe pain on my left side, floating yellow stools, bloating, wind, tiredness. All of which has resolved since I have cut out gluten and return worse even when I have a little bit, and now I also get diarrhoea.

I have had a stack of blood test and scans for all sorts of things, everything thing has come back negative. I was found to have the Celiac gene, but my Celiac panel and gastroscope biopsies are completely negative. (I was 4 months gluten free when I had these tests and all the doctors/specialists are aware of this.)

The GI specialist said that I am definitely not celiac based on the blood tests and gastroscope biopsies and the fact that my pain was on the left side, and he doesn't think I should be avoiding gluten. He said I shouldn't worry about cross contamination, and if he was me he would probably avoid wheat if he felt it improved quality of life, but would try eating again other sources of gluten. He said I shouldn't get caught up in the gluten free lifestyle, worry about eating out or getting tricked into wasting my money on gluten-free products because I am not celiac.

I'm not sure what to do, I was so sick 5 months ago and I really thought I had found my answer. I guess I can try and add it back into my diet and see how it goes. My partner thinks I should stay gluten free because he knows how sick I was before and what a big difference it has been since I changed my diet. This whole experience has been depressing, I am just left feeling that doctors have no idea what is happening most of the time and the don't care. I really have lost faith in the medical profession.

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You are not celiac, and you shouldn't get caught up in the gluten free lifestyle, but you can't eat gluten :unsure:

Of course everything was negative if you were not eating gluten - and it may well have been negative even if you had been, because you may be gluten intolerant rather than diagnosable celiac.

With apologies to Scott because this is the Celiac.com forum, but I am becoming more and more of the opinion that celiac is just a tip of the gluten intolerance iceberg which encompasses something more, something bigger, the elephant in the room that no one can see.

It is, of course, your choice whether or not you wish to consume gluten; you do not need to have the doctor's permission. The blood and biopsy tests have known false negative rates of about 20%. If I were you I would stay gluten free and healthy. Just my two and a half cents worth.


Neroli

"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973

Lactose free 1990

(Mis)diagnosed IBS, fibromyalgia '80's and '90's

Diagnosed psoriatic arthritis 2004

Self-diagnosed gluten intolerant, gluten-free Nov. 2007

Soy free March 2008

Nightshade free Feb 2009

Citric acid free June 2009

Potato starch free July 2009

(Totally) corn free Nov. 2009

Legume free March 2010

Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

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The blood tests don't mean anything and shouldn't even be considered in your diagnosis with you having been gluten free before them for four months. The biopsy results don't mean much either.

Stay gluten free. You feel better that way, so why would you go back to gluten? You don't need an official diagnosis for anything, and if you find you do, you can always do a gluten challenge in the future and retake the bloodtest.

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Trust your body, not tests that were done after you were gluten-free for four months and feeling better. If you feel that much better gluten free, who cares whether a dude in a white coat with an overpriced diploma pronounces you celiac?

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Listen to your body. If you feel better when you avoid wheat, then avoid wheat. Stephen Wangen's book "Healthier Without Wheat" discusses Non-Celiac Gluten Intolerance which could be your situation. You can be gluten-intolerant and not meet the classical signs of being celiac. Just saying. Not doctors have the latest and greatest information.


Enlarged thyroid with nodules and Hashimoto's diagnosed 2007. Self-diagnosed as gluten-intolerant.

Husband is gluten-intolerant, also self-diagnosed, suffered from severe eczema which has largely disappeared since avoiding wheat, corn, tomatoes, tree nuts.

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Yopu have a celiac gene, and got better after going gluten free.

Of course the blood tests went negative after going gluten free.

some people in circumstances like this get tested by Enterolab, privately. Teier tests are very sensitive, but they cannot diagnose celiac, just gluten sensitivity.


gluten-free since may 06 after neg. biopsy symptoms went away and DH symptoms which I had since 03 got gradually better.

daughter officially diagnosed celiac and casein intolerant.

non-DQ2 or DQ8. Maybe DQ1? Updated: Yes, double DQ5

Hypothyroid since 2000, thyroxine first started to work well 06 on a low-carb and gluten-free diet

Lost 20 kg after going gluten-free and weighing 53 kg now. neg. biopsy for DH. Found out afterwards from this forum that it should have been taken during an outbreak but it was taken two weeks after. vitaminD was 57 nmol/l in may08)

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Of course your tests were negative, you have been gluten free for months and healed. Listen to your body not that doctor. The same thing happened to someone in my family. Instead of telling you that you should go back to a gluten diet the doctor should have congratulated you for how well you are doing on it.


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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Thanks for everyone's replies. I am just frustrated by the lack of support that I have from doctors. This specialist only saw me once yesterday. I've been well for about 5 months now with only short relapses when I have not been as careful with my diet. My main GP told me that I had Gluten Intolerance, but I could eat gluten sometimes. Then he gave me some printouts about Gluten Intolerance which said that it was probably psychological issues with food. Then I found another GP, who said that my symptoms matched Celiac, but since my Celiac tests came back negative it could IBS caused by stress and she started going on about how she thought my job in a call centre would be really stressful (occassionally it is, but most of the time it is an easy job) and asking me about problems with my partner (there are none). Then there was this specialist... he also made a point of commenting that I must work in a really stressful environment. Why can't they believe that the diet has worked? I feel like I know better what is happening with my body than they do and in the end I have wasted so much time and money looking for reassurance to get nothing.

Since I have given up gluten, I have found out that two of my Auntie's have had abdominal pains and other GI symptoms since they have been in their 30's (they are in their 60's now) and have been told by doctors that there is nothing wrong with them, pain, bloating and regular bouts of diarrhoea/constipation is just someting that you have to live with. Doctors ask me about my family history, but then they dismiss it because no one has an official diagnosis.

Sorry about the rant, I just needed to get my frustration out.

Does anyone know if there is no damage in the intestines from gluten, does that mean the other health problems associated with celiac are not at risk if small amount do get consumed? I would like to believe what the specialist has said about not worrying about my reactions after cross-contamination. I feel like have gone crazy, my body is telling me I should trust my gut, but my brain still wants to believe these dr's have said. :angry:

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Trust your gut! You know your body better than someone in a white coat does - you live in it every day. And if the white coats don't know that the tests are meaningless in someone who is gluten free for four months, well, they shouldn't be wearing those white coats. Do what makes you well.


Neroli

"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973

Lactose free 1990

(Mis)diagnosed IBS, fibromyalgia '80's and '90's

Diagnosed psoriatic arthritis 2004

Self-diagnosed gluten intolerant, gluten-free Nov. 2007

Soy free March 2008

Nightshade free Feb 2009

Citric acid free June 2009

Potato starch free July 2009

(Totally) corn free Nov. 2009

Legume free March 2010

Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

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Trust your gut! You know your body better than someone in a white coat does - you live in it every day. And if the white coats don't know that the tests are meaningless in someone who is gluten free for four months, well, they shouldn't be wearing those white coats. Do what makes you well.

Yea I agree. Some doctors are less than worthless when it comes to celiac. These doctors make me so darn angry!!!!!


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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I wonder if by any chance this one is related to the Neurologist From H*ll.

Oh My God, caught up in the gluten free lifestyle !

I'm heading into year 8 on that with no official diagnosis, but I was so far gone there were holes in my head, literally, brain lesions, and they were still calling me a head case.

Just stick to the gluten free diet as strictly as possible. You are hereby granted permission to enjoy the rest of your life.

Of course if any of these peeps are listed on one of those dr. ratings websites you could rate them.... ;)

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