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(New Here) Undiagnosed But Massively Suspicious.


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#1 ChristinaK

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Posted 26 February 2013 - 10:11 AM

Hi, new here, 20 year old female. Curiosity and need to advice an opinions brought me here.

 

Ive had some really terrible digestive problems for as long as I can remember. Ya know, excess gas, bloating that hurts so bad I think I'm having a heart attack, the big D, never being "regular". As well as maybe related, maybe unrelated issues such as sinus problems, crazy sensitive skin that is always dry and itchy, slow healing, easy bruising, and I fell and skinned my knee once when I was 6 months pregnant... my daughter is now 2 months and the skin is still all red and not healed! Hah! And it seems any bruises I get take months to go away. My nails are brittle and break and I have a lot of tiredness and lack of motivation for a 20 year old who's in fairly good shape. 

Well... I strongly suspect celiac.. And so does the nutritionist that I saw just a few months ago BUT... a few years ago I had the blood test for it, twice (I think the two tests were 6 months apart) and they both tested negative. I know getting a negative result is possible but how likely? How many of you got negative blood but ended up having it anyway after getting an endoscopy to really diagnose? 

 

I went gluten free for a month under the guidelines of a nutritionist but didn't see speedy results and got kind of discouraged, are you supposed to feel better fast or does it take time? I was angry my digestive problems stuck around and only seemed to get SLIGHTLY better but I attributed that to the fact that I was eating very bland anyway. Also, on the third week of the gluten free diet I started taking probiotics, which helped a good bit so I said Hey! This helps! Maybe this was all I needed! So I started eating gluten again annnnnnnd within the next few days I started to feel bad again. But also some weird symptoms came back. Ive always had anxiety problems but pretty much had it under control, a month off gluten and then as soon as I started eating it again I started having minor panic attacks, dizziness and all the digestive upsets but with MORE gas! Now I'm almost totally convinced gluten is my problem but if it was why didnt I see that much of an improvement over the course of a month? Annnnd also I'm the type of person that needs that diagnosis from a Doctor so I know I'm not wasting my  time. I want to go for the endoscopy to really get a diagnosis but my question is do I need a colonoscopy as well or just an endoscopy to be diagnosed? Also.... since I was off gluten for a month how long should I eat it again so that the test can be accurate? I know some "gluten challenges" say 8 weeks but since I was only off for a month does this still apply?

 

Help me out here! Thanks! 


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#2 kareng

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Posted 26 February 2013 - 10:26 AM

Just because you tested negative a few years ago, doesn't mean you don't have it ( or test positive) today. For example, if you had a sore throat and they tested you for strep 3 years ago and it was negative, they would test your sore throat today for strep. Doesn't mean you can never get strep in the future.
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#3 mushroom

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Posted 26 February 2013 - 12:36 PM

Your symptoms do sound strongly suspicious for celiac or gluten intolerance.  These are two separate conditions, and just so you know, there is no test yet for gluten intolerance - you will always test negative on the celiac tests, and unfortunately NCGI is much more prevalent than celiac.

 

On your first gluten free trial you were way too impatient; you need to give it a good three months before you even start thinking it's not working.  And the fact that the probiotics helped means that you needed to repopulate your gut with good flora because the bad guys had taken over.  You may need to do this for months or years until everything is restored and healed.

 

A negative diagnosis can switch to positive at any time if you carry the genetic inheritance for celiac.  It usually requires a trigger for activation, which can sometimes be child birth.   Unfortunately, a month gluten free is too long to discount in the healing process, especially as you say you were starting to feel better.  How long ago since your last blood test?  And for how long have you been back on gluten?  I would think the normal challenge period of 6-8 weeks would apply in your case.  Doctors will sometimes do an upper endoscopy without first doing the blood tests; you do not need a colonoscopy because celiac cannot be diagnosed by that procedure - celiac occurs in the small intestine.  But in any case, the same length of challenge applies because healing starts to take place (as you noticed yourself) :)


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"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"

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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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