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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Is My Self Diagnosis Correct?
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12 posts in this topic

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
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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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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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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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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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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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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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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.cureceliacdisease.org/archives/faq/what-is-gluten-sensitivity

 

http://www.celiaccentral.org/non-celiac-gluten-sensitivity/

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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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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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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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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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