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Is My Self Diagnosis Correct?


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11 replies to this topic

#1 SadPastaLover

 
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Posted 27 February 2013 - 01:21 PM

Hello everyone, I've joined this forum for some answers, and I'm hoping you guys can help me....

 

I've had trouble with my skin since my late teens and about four years ago,
after spending three months in the gym and becoming slightly more vain, I
decided to speak to my doctor about clearing up my spots once and for
all. So, I was put on a course of Accutane, which I took for four
months.

 

When I came off the Accutane I found my
self getting extremely tired and needed to go to bed at around 8pm every
night. A day at work would leave me feeling shattered.

 

So I went back to my doctor who sent me for a blood test. The result was that my vitamin D was low.

 

When I questioned my doctor about a possible link with Accutane he told me
there was no chance that it could've caused my problem.

 

Since then I have had all kinds of problems, and have been made to feel like a hypercondriac by my doctors.

 

Here's a list of everything that I've dealt with between then and now....

 

Spots,
Dry hands,
Tiredness,
Twitching left eye,
Anxiety,
Depression,
Sensitivity to caffeine,
Indigestion,
Constipation,
Wind,
Rectal abscess,
Tingling in left hand,
Tingling on right hand side of head,
Cloudy head,
Sneazing,
Chest pains,
Waking to urinate at night,
Low vitamin D,
Low thyroid.
Regular chest infections,
Low immune system.

 

 

Around Christmas time my thyroid was found to be low, then a month later
normal again. My doctor put it down to an infection that had cleared up,
but there was no evidence to prove this theory.

 

I left the surgery feeling like I had been fobbed off AGAIN!! So I did
some research of my own, by typing into Google 'foods that attack the
thyroid', and what came back was a revelation!!

 

I found links from every symptom I'd had to gluten. So I went gluten free
from six days ago, and within a few days I felt so much better than I
had for ages.

 

On Monday I returned to my doctor, told him about my findings, he agreed that I could be right, so I had a blood test yesterday, and I'm now awaiting the results.

 

Do you guys think I have Celiac? And if I do, has anyone else become celaic after taking Accutane?

 

P.S. I went to my Dad's place last night, ate pork that had been cooked in gravy,
and woke this morning feeling like I had flu!! Been feeling rough all
day, nose running, sneezing, a bit of pain on the right had side of my
abdomen, and also really tired. Could that be from having just a small
amount of gravy????


Edited by SadPastaLover, 27 February 2013 - 01:45 PM.

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#2 mushroom

 
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Posted 27 February 2013 - 01:54 PM

The answers are maybe, maybe, and yes :)

 

It sounds like you do have a problem with gluten and it may be celiac or it may be non-celiac gluten intolerance.  Hopefully the testing will give you a clear answer.  Accutane, like other antibiotics, kills off the good flora in the gut along with killing off the bad guys in your skin, and has been shown to cause flareups of Crohn's disease of the bowel and ulcerative colitis, so it is entirely possible that it flared up a gluten reaction that was already under way in your small intestine that you just were not yet aware of.  And yes, all it takes is a very small amount of gluten in those who are sensitive to set off a quite violent reaction.  A small amount of gravy can actually be quite a bit of gluten.


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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

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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

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#3 SadPastaLover

 
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Posted 27 February 2013 - 01:58 PM

The answers are maybe, maybe, and yes :)

 

It sounds like you do have a problem with gluten and it may be celiac or it may be non-celiac gluten intolerance.  Hopefully the testing will give you a clear answer.  Accutane, like other antibiotics, kills off the good flora in the gut along with killing off the bad guys in your skin, and has been shown to cause flareups of Crohn's disease of the bowel and ulcerative colitis, so it is entirely possible that it flared up a gluten reaction that was already under way in your small intestine that you just were not yet aware of.  And yes, all it takes is a very small amount of gluten in those who are sensitive to set off a quite violent reaction.  A small amount of gravy can actually be quite a bit of gluten.

But would it feel like I have a cold/flu? And why such a violent reaction? Up until last Thursday I was eating gluten at every meal, muesli for breakfast, baguettes for lunch, and pasta for dinner!


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#4 mushroom

 
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Posted 27 February 2013 - 02:21 PM

It has been scientifically proven that after a period of not eating gluten, the gluten-intolerant body mounts a stronger response to gluten when it is reintroduced.  This is why it is recommended that people get tested before they stop eating gluten, because you need to be still eating gluten to be tested, and it is usually too painful for people to go back on gluten once they stop.


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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

#5 1desperateladysaved

 
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Posted 27 February 2013 - 03:09 PM

Maybe the gluten problem was causing the acne.  My household has gone gluten free with me.  Now, several of them break out with acne after they eat outside food.


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#6 Ollie's Mom

 
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Posted 27 February 2013 - 07:42 PM

Maybe the gluten problem was causing the acne. My household has gone gluten free with me. Now, several of them break out with acne after they eat outside food.


I second this. One of my symptoms of being glutened is acne on my face and back. The really deep, painful kind. they last for weeks and weeks. Awful reminders of an even minor slip up on my part.
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#7 SadPastaLover

 
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Posted 28 February 2013 - 02:33 AM

Just called my doctor's surgery and my blood test came back normal!!

 

Would gluten antibodies really clear from my blood after just four days gluten free??

 

Where do I go from here? I know for sure that gluten is my problem, after just three days without it I felt so much better, and without something in black and white everyone will think I'm just being a massive hypercondriac : (


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#8 kareng

 
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Posted 28 February 2013 - 05:28 AM

Just called my doctor's surgery and my blood test came back normal!!

 

Would gluten antibodies really clear from my blood after just four days gluten free??

 

Where do I go from here? I know for sure that gluten is my problem, after just three days without it I felt so much better, and without something in black and white everyone will think I'm just being a massive hypercondriac : (

 

 

I wouldn't think a few days would make a huge difference.  You might want to get a copy of the tests and chek that they really did celiac tests.

 

if you know gluten bothers you, you could have a Non-Celiac gltuen sensitivity:

 

http://www.curecelia...ten-sensitivity

 

http://www.celiaccen...en-sensitivity/


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#9 SadPastaLover

 
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Posted 28 February 2013 - 07:52 AM

I spoke to my doctor on the phone who said that just because it's come back normal doesn't mean I don't have a sensitivity to gluten. He also said that this is an area where they are still learning.

 

So I called a nutritionist, who also does allergy testing, and I've booked in for a consultation next week.

 

Even though I know for sure that gluten, or foods that contain gluten, has been the problem due to the way I felt after only a few days without it, I still want black and white proof that I am sensitive to it, because the world is full of sceptics!!

 

I'm going to face a battle with all of my family and friends over this. They've listened to me talk about my problems for years and when I told them I'd finally found out what the cause was it was met with 'well, you've said that about other stuff before'.


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#10 kareng

 
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Posted 28 February 2013 - 08:02 AM

I spoke to my doctor on the phone who said that just because it's come back normal doesn't mean I don't have a sensitivity to gluten. He also said that this is an area where they are still learning.
 
So I called a nutritionist, who also does allergy testing, and I've booked in for a consultation next week.
 
Even though I know for sure that gluten, or foods that contain gluten, has been the problem due to the way I felt after only a few days without it, I still want black and white proof that I am sensitive to it, because the world is full of sceptics!!
 
I'm going to face a battle with all of my family and friends over this. They've listened to me talk about my problems for years and when I told them I'd finally found out what the cause was it was met with 'well, you've said that about other stuff before'.


Did you read the links I provided? I hate for you to waste your money on dubious " medical tests".
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santa-dance.gif

 

Once again, we come to the Holiday Season, a deeply religious time that each of us observes, in his own way, by going to the mall of his choice. - Dave Barry
 
“The main reason Santa is so jolly is because he knows where all the bad girls live.”  - George Carlin
 
“One can never have enough socks," said Dumbledore. "Another Christmas has come and gone and I didn't get a single pair. People will insist on giving me books.”  - J.K. Rowling, Harry Potter and The Sorcerer's Stone
 
 
 
 
 

 


#11 mushroom

 
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Posted 28 February 2013 - 11:46 AM

There is currently no test that they can give you which will prove or disprove that you are non-celiac gluten sensitive.  If you are sensitive to gluten and negative to celiac testing, that is your diagnosis - I'm afraid for now you will probably just have to live with it.  They haven't developed any testing for NCGS yet and I am extremely doubtful that it would be an actual allergy, which to wheat is really quite rare.


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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

#12 julissa

 
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Posted 28 February 2013 - 12:58 PM

I totally agree here. I was going to go through testing which would have been quite expensive. I am either celiac or ncgs. I gave up gluten too soon, I hadn't found this forum in time. anyway, my doctor believes I am celiac, but I was still getting stomach issues. I went to an allergist and was diagnosed traditionally with dairy and soy allergy.

 

I understand wanting it in black and white. but it is basically no ones business. I ultimately didn't go for the tests as I figured I already knew gluten was doing terrible things to me, so why bother and spend lots of money. now I am in my little gluten-free DF SF world, and if someone asks why I can't eat something, you know, a little won't hurt, I tell them to eat a little rat poison, a little won't hurt.


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