# Negative for celiac? Doubting the test!



## Getting Me Down! (Oct 29, 2012)

Literally started breaking down a lot recently from my bowel issues. 
Im currently taking amitriptyline (20mg every night) and thought it was doing me some good until this morning when my stools were loose and nasty, followed by my every day problem, mucus.
I've been blood tested for celiac, TWICE, both times negative. I've honestly never heard of anybody getting positive results from the blood tests...
.. but then DO get a positive result after having a Biopsy taken, or doing a gluten-free trial...
Well i've had problems for over 3 years. I used to have Shreddies with Milk every morning or night, and always loose/muchy stools in the morning, so i stopped eating cereal (blaming it on the milk) ... But over the past 2 years my problems have gotten progressively worse (no dietry changes). Apart from bloating, stomach aches, losse/mushy stool, continuous mucus and all the digestive issues, ive started feeling tired all the time, light headed, dizzy every time i move, lack of energy even though i barely go anywhere, keep getting bruises in a particular place on my right arm and my legs even though i dont recall bashing it ever!... i suffer awful anxiety, and get pins and needles in my feet a lot... all this is making me feel depressed and lonely as i never go out, even though im currently on anti-depressants, pfft! ... Im sure my family hate seenig me like this because theres nothing they can do or suggest anymore.

Anyway, my point is.... Even with 2 negative blood tests, could i still have celiac? 
Is there anyone else who has been told 'You have IBS, take these tablets' ...over and over which have done no good whatsoever?
and is there anyone whose adopted a gluten free diet after negative tests, and seen positive results, like a reduction in diarrhea and loose stools and feeling generally healthier and brighter?

I can't go on like this, i've cried too much and i feel so weak. No tablets are working and i have either got the worst and most irritated bowel on earth, or im constantly eating the wrong foods.
:-(


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## Kathleen M. (Nov 16, 1999)

Some people seem sensitive to wheat without having celiac. Some people feel better wheat free even when they don't have celiac.

If you want try the low fodmap diet. It is wheat free anyway (as resistant starch in wheat causes gas and this diet limits gas production) as well as reducing most other gas causing foods.

I know lots of people who have tested positive, but it isn't true that there is no IBS and everyone is just undiagnosed something else. Unfortunately a lot of the medications used for IBS were not ever developed for IBS so sometimes they work and sometimes they don't. While the biopsy is the gold standard I think it is more likely to get a positive blood test and have the biopsy be clean than the other way around.

FWIW, if you go gluten free on your own just to try it you will have to go back on gluten for awhile before getting tested again if you ever decide to go that route.

I don't think they test much for SIBO in the UK, but sometimes that is an issue.

Are you able to do things to help in general with mood and energy level? Like get outside in the sunshine for 20-30 minutes a day preferably while taking a walk?


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## faze action (Aug 6, 2009)

Getting Me Down! said:


> Literally started breaking down a lot recently from my bowel issues.
> Im currently taking amitriptyline (20mg every night) and thought it was doing me some good until this morning when my stools were loose and nasty, followed by my every day problem, mucus.
> I've been blood tested for celiac, TWICE, both times negative. I've honestly never heard of anybody getting positive results from the blood tests...
> .. but then DO get a positive result after having a Biopsy taken, or doing a gluten-free trial...
> ...


It is definitely possible to have Celiac with a negative blood test. That particular test has about a 25-30% false-negative rate for a number of reasons (most notably, people who are naturally low in IGA antibodies will test negative even if they have the disease. Even the biopsy can result in a false-negative if the doctor taking the biopsy does not take enough, or biopsies sections of the intestine where there happens to be no villous atrophy... I myself was negative on the blood test (never had a biopsy done) and I responded dramatically to a trial gluten-free diet, so I know I have a sensitivity to gluten. It is also possible to have "non-celiac gluten intolerance", which is being recognized by the medical community more and more these days. Someone on another board actually said they are in the process of develeping lab tests for NCGI.

I would say it is definitely worth trying a trial GF diet to see if it helps you... I went on a trial last year and 80% of my symptoms were gone by the end of the first month, and about 90% by the end of the second month. If you want details on how to trial the diet "properly" then let me know...


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## Getting Me Down! (Oct 29, 2012)

Seriously thinking it could be a SIBO issue now, or even a pelvic floor issue... the past 2 days my stool has been really mushy, not watery but not formed what so ever.... Waiting for Results regarding a lactose intollerance stool test i did, although my doctor did say that she might send me for another test for lactose intollerance which is a bit more accurate (hydrogen breath test i think) ... could that test also detect SIBO? 
I see my gastro in just over a month and i shall mention everything to him, last time i saw him he said he didn't want to put me through the discomfort of a scope because their not very nice and he was almost certain it was just IBS, but im seriously considering asking for it as my problems are getting so much worse by the day, loads of other people have done it so i might aswel give it a shot, i've got nothing to lose, have I?

I really do want to give the Low fodmap/Gluten free diet a go, im running out of options and im sick of taking meds that have no effect :-( ... Immodium just makes me constipated but still with constant urges and pressure in the bowel which is no good :-( 
Just want to be able to get up in the morning, have ONE complete and fully formed bowel movement, and be good for the day, like i used to be about 3-4 years ago :-/


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## faze action (Aug 6, 2009)

Yes, the hydrogen breath test can diagnose SIBO (usually lactulose is the sugar used for this test). I've had this done 3-4 times now and I was positive for SIBO every time. Rifaximin really helped out with that, although it can recur (this is what happened to me and a prokinetic herbal supplement like Iberogast might help to keep it at bay; dietary changes are also a must as the bacteria feed on sugar and other carbs, so generally a low carb diet is recommended for SIBO. You could also try FODMAP or gluten-free; they would probably help as well).


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## BQ (May 22, 2000)

Also, if you want to know what you may be sensitive to, by all means, see an Allergist if you can.


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## Getting Me Down! (Oct 29, 2012)

Thanks guys you've been great help 
How do i arrange to see an allergist? Would i have to be referred from my doctor??..

& also, faze action - What was the hydrogen breath test like? Because i can imagine if you have lactose intollerance, shortly after the taking the drink you would start having some unpleasantness?


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## BQ (May 22, 2000)

I do not know how your Healthcare system works but I would just call your Dr and ask them how you would go about seeing an allergist.


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## faze action (Aug 6, 2009)

Getting Me Down! said:


> Thanks guys you've been great help
> How do i arrange to see an allergist? Would i have to be referred from my doctor??..
> 
> & also, faze action - What was the hydrogen breath test like? Because i can imagine if you have lactose intollerance, shortly after the taking the drink you would start having some unpleasantness?


The HBT is mainly just long (mine took 3-4 hours I think). After you give them a baseline breath of air you will need to drink whatever sugar suspension they give you and the technician should ask you if you have symptoms from that. I experienced some bloating/distension, but it wasn't really all that terrible, and the SIBO was pretty bad when I was first diagnosed. Not sure what lactose would do if you are intolerant (that's a different sugar than the one used for SIBO). Might depend on the degree of sensitivity...


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## tinh (Nov 13, 2012)

Hi, in the UK you need to go through your GP to get a referral. It is definately worth a go as they might be able to isolate triggers for you. Have you seen a gastric specialist?


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## Getting Me Down! (Oct 29, 2012)

I have yeah and im back to see him on Jan 15th.


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## tinh (Nov 13, 2012)

Getting Me Down! said:


> I have yeah and im back to see him on Jan 15th.


 Hope you get some answers.

The one I saw actually had some empathy of how controlling IBS can be and came up with some good suggestions regarding diet and breaking the "mental cycle".

The scope isn't nice, there was an option to be knocked out which in hindsight I wish I had taken. I found it very painful as they discovered I have a very "sharp" bowel which contributes to my IBS. Others I've talked with said that they only found it abit uncomfortable. I must admit it was odd seeing the inside of my bowel! But they found nothing so it was re-assuring and worth the pain of having it done.


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## Getting Me Down! (Oct 29, 2012)

Okay thankyou 
Also recently ive been noticing I have quite pale yellow stools... isn't this another symptom of celiac...?


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## faze action (Aug 6, 2009)

Unless it is really pale (like almost white or grey) paler stool usually means that the stool is just moving through your system faster (bile is what normally turns stool "brown" and faster transit means the contact time is less, so the stool will be yellow or sometimes orange).


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## Rockymtn12 (Jul 26, 2015)

I went through many tests which turned out to be negative. The other day I started to go to a PT and they did a pelvic ultrasound and found that my pelvic floor muscles are very weak. I think this is at least part or maybe all the reason I have constant mucus leakage.


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