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Is It My Celiac Disease Back Again


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14 replies to this topic

#1 cristalbleu13

 
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Posted 09 May 2012 - 06:34 AM

Hello,
I'm just wondering if somebody could help me because i'm worried a lot.
I learnt about my celiac disease when i was young i was 2 years old that time when the doctor discovered my celiac disease none of my family members got a celiac disease i'm the only one who used to have it.i had been on diet for 16 years and then the doctor did for me an endoscopy and then told me to start having food with gluten slowly , it was such a good day for me and i thought i got over it for ever , gained weight and start looking better 4 years after stopping the gluten free diet and just recently started having lots of symptoms i had about 5 months stomach ulcer with diarrhoea , stomach gurgling , abdominal pain and i had to go back to gluten free diet again because i thought it was it back again , went to see my GP and the doctor did for me a blood test , everything was fine the test was negative which it means it's not a celiac disease , then referred to hospital and said it was a sign of infection , did an ultrasound and everything looked normal , he said everything was fine got better when i started gluten free food , and got over the pain ,he told me to start eating normally i did so and started eating food with gluten and 1 month later started having some haemorrhoids , went to see him again , gave me some medication and referred to a clinic and the doctor there said he would look at my bowel , i forgot to mention to that specialist that i used to be celiac so he told me , so i'll see him next week , couple of week after having the haemorrhoids started having panic attacks , anxiety and depression the doctor put me on SSRI tried both of citalopram and mirtazapine but didn't work for me , after being 5 weeks on mirtazapine started having a yellow diarrhoea which is a sign of an infection and could be a sign of celiac disease and then started having abdominal pain , stomach kept gurgling and making too much noise even people could hear it , muscles pain , feel so tired , lost 5 Kg , legs tingling (i don't know if it's something to do with anxiety and panic attacks), back pain ,feel so sad keep crying for no reason for hours , sometimes feel sick and dizzy but i haven't vomited , i feel bloated and keep having an excessive wind that smells , i started the gluten free diet again 2 days ago please help what should i do.
I need an URGENT answers .
THANK YOU> <_<
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#2 adab8ca

 
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Posted 09 May 2012 - 06:49 AM

You do not get rid of it. Of course your endoscopy came back clear, you stopped eating the stuff that caused the damage. That is the point, When you eat gluten, it causes your body to attack itself and damages your intestines. When you stop, you technically should heal.
I don't blame you at all, but I think the Dr. is a problem.
The celiac never "went away". You just stopped exacerbating it. Stick with the gluten-free diet. That is likely the problem.

Good luck! Maybe look into finding a new doctor? Who knows the basics of celiac disease?
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TTG >200 (normal <10)
IgA gliadin 24 (normal <11)
IgG gliadin 38 (normal <11)
Endoscopy showed damage that looked like "classic celiac", biopsy showed total villous atrophy
Started gluten-free diet Aug 31, 2010
Only real symptoms are huge weight loss and neuropathy

#3 ravenwoodglass

 
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Posted 09 May 2012 - 06:51 AM

I am so sorry you are having such a hard time. The doctor that told you that you outgrow celiac was flat out wrong. Once we are diagnosed we are celiac for life. It sometimes takes a while for symptoms to reappear but for you they now have. Sorry but you need to get back on the diet no matter what your test results are. I hope you are feeling better soon.
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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)

#4 pricklypear1971

 
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Posted 09 May 2012 - 06:53 AM

What country do you live in?

Celiac disease is a lifelong condition. You don't "get over it". Your doctor was woefully uninformed and has done you a great disservice.

It used to be thought Celiac was a temporary childhood disease, but they've known for years that it isn't.

You need to be gluten free for the rest of your life. It is probable that gluten is responsible for all of your new health problems. People don't always have immediate reactions to gluten upon reintroduction - it can take days, weeks, years, but eventually it happens.

In young people there has been a "honeymoon" phase documented in some Celiac teens/young adults on gluten when symptoms disappear but then resurface in the 20's. That sounds very similar to what you describe.

By eating gluten you are increasing your chance of other autoimmune diseases and some cancers.

Get off the gluten and heal.
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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#5 cristalbleu13

 
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Posted 09 May 2012 - 07:01 AM

What country do you live in?

Celiac disease is a lifelong condition. You don't "get over it". Your doctor was woefully uninformed and has done you a great disservice.

It used to be thought Celiac was a temporary childhood disease, but they've known for years that it isn't.

You need to be gluten free for the rest of your life. It is probable that gluten is responsible for all of your new health problems. People don't always have immediate reactions to gluten upon reintroduction - it can take days, weeks, years, but eventually it happens.

In young people there has been a "honeymoon" phase documented in some Celiac teens/young adults on gluten when symptoms disappear but then resurface in the 20's. That sounds very similar to what you describe.

By eating gluten you are increasing your chance of other autoimmune diseases and some cancers.

Get off the gluten and heal.


I live in the UK.
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#6 cristalbleu13

 
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Posted 09 May 2012 - 09:00 AM

who has experienced anxiety because of his celiac disease and could the celiac disease cause anxiety and panic attacks?
Do you think that the blood test is the best way to find out about the celiac disease because i've done it before and it was negative , i believe that my celiac disease will never go away, but none of my family members has a celiac disease i'm the only one but i would say both of my mother and aunt have thyroid disease.
I had been on gluten free diet for 16 years (2-18 yrs old), the doctors found out about it after doing an endoscopy ,it's been 4 years now with gluten , i feel like i'm going mad , having severe panic attacks , anxiety my stomach keep churning all the day i have a bad feelings in my tommy + the symptoms i mentioned before(excessive wind , bloating , abdominal pain, change in bowel, stomach ulcer , feeling tired , tingling , palpitations, feeling so sad and down and keep crying for hours with no reason , back pain ,stomach gurgling)
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#7 Cara in Boston

 
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Posted 09 May 2012 - 10:30 AM

Yes, anxiety and panic attacks can be caused by gluten intolerance.

You have celiac disease. It does not go away. It does not matter that no one else in the family has it (or knows that they have it) You do and you have to stop eating gluten immediately. No need for further blood tests. It probably just took a long time to cause enough damage after you had been gluten free for so long. Go back to being gluten free and get a new (better informed) doctor.
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#8 cristalbleu13

 
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Posted 10 May 2012 - 10:07 AM

Hello,
I've just seen my GP today and all the blood tests i've done were normal (no anemia , no thyroid problem , no kidneys problem , no liver problem) , but i still have the symptoms of ibs or celiac disease (i was on gluten free diet for 16 yrs) as i said yesterday :

http://www.celiac.co...304#entry794304

the doctor told me that it's almost impossible to have a celiac disease at the age of 2 years old , so i challenged her by bringing my medical record , i told her my celiac disease was found by doing an endoscopy ,i'm sure few people know that panic attacks and anxiety are signs of celiac disease , i had no glutenn for 5 days and started feeling better please check the link to see the symptoms i'm having.
how accurate is the blood test for celiac disease , could it be negative even if you have the celiac .
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#9 kareng

 
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Posted 10 May 2012 - 10:56 AM

Hello,
I've just seen my GP today and all the blood tests i've done were normal (no anemia , no thyroid problem , no kidneys problem , no liver problem) , but i still have the symptoms of ibs or celiac disease (i was on gluten free diet for 16 yrs) as i said yesterday :

http://www.celiac.co...304#entry794304

the doctor told me that it's almost impossible to have a celiac disease at the age of 2 years old , so i challenged her by bringing my medical record , i told her my celiac disease was found by doing an endoscopy ,i'm sure few people know that panic attacks and anxiety are signs of celiac disease , i had no glutenn for 5 days and started feeling better please check the link to see the symptoms i'm having.
how accurate is the blood test for celiac disease , could it be negative even if you have the celiac .



I merged this post over here because it's just a continuation of this discussion. This will keep everything together and save the confusion of 2 separate threads.

Carry on! :)
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#10 kareng

 
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Posted 10 May 2012 - 11:34 AM

Read around on the forum. There is lots of info. Allso, Read and copy some of this info for your doctor. The docotor might take the info seriously if it comes from other doctors.

http://www.curecelia...essionals/guide


http://www.celiacdis...rs/C01-HOME.htm
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LTES

 
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#11 cristalbleu13

 
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Posted 10 May 2012 - 12:16 PM

Read around on the forum. There is lots of info. Allso, Read and copy some of this info for your doctor. The docotor might take the info seriously if it comes from other doctors.

http://www.curecelia...essionals/guide


http://www.celiacdis...rs/C01-HOME.htm



You know why i'm worried a lot because i lost 5 KG in 6 months , i have ibs symptoms and i'm suffering for anxiety and keep having severe and frequent panic attacks for her it's a mental health problem , i tried SSRI but didn't work for me , i know i had lots of problems in the past and it could be the reason but the question is why i didn't get any better since i started having the stomach ulcer and ibs symptoms in december 2011.
And if i take a copy of this she would be upset , she would ignore it , i don't know better than her , she is the doctor but i do believe that i know about celiac more than her , i'll give the medical record and she will have a look , i felt like she didn't believe me , she thinks i have never had a celiac disease and she said it's less likely for someone to develop a celiac disease at the age of 2
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#12 pricklypear1971

 
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Posted 10 May 2012 - 12:39 PM

If I read your first post correctly you went backbon the gluten-free diet and tested negative for Celiac through blood work? That makes sense because the antibodies they test for depend on you eating gluten. No gluten, no antibodies, no positive test. On top of that, some people with celiac disease test negative, regardless. Do you know what blood tests were run? There are several tests, most doctors don't run them all and that's another reason for a negative. And when they scoped you you'd been gluten-free for 16 years??? Of course there wasn't damage!!!'

You also stated you just went gluten-free two days ago. It takes months to years to heal Celiac damage. You must stay on the diet.

Screw your doctor. She's uninformed unless she can give you another reason for your problems - a VALID reason for your problems, she's worthless to you. Find another medical professional and tell them about your Celiac.
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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#13 mushroom

 
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Posted 10 May 2012 - 01:16 PM

From trying to put all your information together, it seems obvious to me you have celiac disease, you are well when you do not eat gluten, you are sick when you do, it gives you anxiety and panic attacks, you have gastric problems, you have tingling and palpitations, and yet you still listen to this doctor who tells you you do not have celiac. :blink:

Quit the gluten and feel better is all I have to offer.
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#14 IrishHeart

 
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Posted 10 May 2012 - 01:58 PM

Celiac Disease is not "curable" ---but it is TREATABLE with a gluten free diet.

It's not "back again"--you never "lost it". You put your symptoms into remission on a gluten free diet.

You put gluten back in, you start the autoimmune response again.

It's in ALL THE MEDICAL TEXTBOOKS and JOURNALS--- which she obviously has never read. :rolleyes:

Listen to what we are telling you. This "doctor" has her head up her arse.

WE know more about this disease than she does obviously. You don't have "IBS" ---you have CELIAC.

Get a new doctor and stop eating gluten right now. If you have Celiac, honey--it's for LIFE.

best wishes.
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#15 cristalbleu13

 
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Posted 10 May 2012 - 02:06 PM

THANK YOU VERY MUCH FOR your answers and i'll do i'll try to get an appointment but i would say here in the UK , it's hard i have to get through a GP(general pract) to get referred , i'll start looking after my self i know my body better than doctor :).
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