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Am I Celiac? Negative Blood Test


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#1 Oats

 
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Posted 04 January 2012 - 02:45 PM

I am 18 years old, female, normal range BMI, no great weight gain/loss lately (or ever...?) and no diagnosed celiacs in my family as far as I know.
However, on my mother's side, there are many cases of digestive trouble (My grandmother had stomach cancer (stomach problems all her life + weak bones), uncle a terrible stomach, mother a lot of stomach trouble too)


For a while, I have had a bunch of symptoms (I'll list these later on!)
My mom suggested I might be celiac, because I tend to get my worst stomach aches after eating a lot of bread or cake. I bought a home test (it said it tested for anti-transglutaminase antibodies) It turned out negative.
Two months later or so, my symptoms got worse. I went to the doctor, and he immediately suggested celiac. I got tested, but once again - negative. They didn't tell me exactly what they tested for (which antibodies and so on), or exactly what the results were - only that I did not have celiac disease.
And the doctor just gave me an information sheet on - off course - IBS... Is it just me, or does IBS just mean that the doctors cannot find a cause?

However, I've read several places that the blood tests are not very accurate - especially in early stages of the disease. I have had my symptoms for about two years, so I think that would be considered an early stage, right?



Here are my symptoms:


Loss of period (two years - minus half a year of taking hormonal prevention. Once I stopped, so did my period)
Painful sex
joint aches - very sensitive wrist joints, knee problems, shoulder pain, random ankle pain
a lot of headaches
dizziness
fatigue
foggy mind
Mental issues - like crying for no reason, mood swings, feeling anxious/sad every other day all though I am generally very happy with my life
Stomach ache - upper middle stomach (between ribcages), very lower stomach (bladder area maybe?), down the hips/groin area on the sides - feels like lymph nodes
very bad tearing stomach ache if I get too hungry
Discomfort connected to bladder
difficulty emptying the bladder

Mouth:
reappearing tonsil stones
white mucus on tongue - a lot of it! Also, a couple of barely visible circles (like small coins) on the surface of the tongue
small pink lumps on the back of the throat, spreading to the inside of the cheek area by the tonsils, around the molar area
I have cancer sores more often than anyone I know

also, there's always traces of blood in the mucus whenever I blow my nose, and my eyes are often red. They also easily hurt in dry air etc.

Digestion: WARNING! Quite disgusting descriptions! :(

Periods of frothy stool, almost diarrhea-like.
lately: constipation, dark/lumpy, glossy (fatty perhaps?)
a lot of undigested food (for example after eating nuts! Ew!)

all the while:
Orange/yellow/light brown colored, slimy mucus. :/ Sometimes a lot!
Also... Sometimes passing clear liquid...?

In August I had a two week influenza-like disease which caused very light/yellowish colored jelly-like diarrhea, and I've had mucus ever since...



What do you think? What other diseases might I consider? Should I try staying off of gluten for a while, see if I get better, then eat gluten again and see if the symptoms come back?

Thank you!
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#2 beebs

 
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Posted 04 January 2012 - 03:07 PM

There are certainly false negatives in the tests for Celiac. Those symptoms could be celiac - but they could be other things as well. IBS is a label they put on things when they really just don't know what is going on.

You have a couple of choice, you could go gluten free and see if you feel better - if you do, then there is your answer -just be aware that if you felt you needed a diagnosis and wanted to get tested later then you'd have to do a gluten challenge where you eat large amounts of gluten a day for a few months. And alot of us here have found once going gluten free that our symptoms have gotten far more severe, so a challenge is out of the question for many of us.

The other thing is to keep eating gluten and push for an endoscopy to see if they can pick up celiac that way - they need to take at least 8-10 biopsies for an accurate test though.
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HLA DQ8, gluten-free since January 2011

#3 beebs

 
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Posted 04 January 2012 - 03:08 PM

Mouth ulcers all the time were one of my symptoms too -as well as very painful nose ulcers.
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#4 AJ Leigh

 
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Posted 04 January 2012 - 03:50 PM

You have a lot of the same symptoms I do. They're pretty text book celiac symptoms. I know 100% that I have the disease and my blood panel was negative. As someone mentioned, your best option would probably be to try a gluten free diet. Try it faithfully for a month or two and see what happens If you eat gluten. Thatll be more accurate than any lab work, believe me. Remember though that it can take a little while for the gluten inflammation to leave your system entirely, so don't give up after a week or so.

Good luck!
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<3 AJLeigh

#5 AJ Leigh

 
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Posted 04 January 2012 - 03:51 PM

Another thing to consider is keeping a food diary. If you have any other food intolerances and allergies, especially if you choose to go gluten free, that would be a good way to rule them out.
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<3 AJLeigh

#6 mushroom

 
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Posted 04 January 2012 - 04:01 PM

It is always such a bummer to test celiac negative and to be dumped into the IBS bin :( , especially because when you have the IBS label they quit looking any further.

You may well fall into the non-celiac gluten intolerant category for which there currently is no testing except to try the gluten free diet. I think in your shoes, knowing the harm that gluten can do, that is the course I would choose. And give it a strict trial by eliminating all gluten, not just a cut down on the bread, pasta and cookies kind of thing. Because to be successful you have to get rid of it all, even from your personal care products and from your contaminated cooking utensils (buy new wood and plastic, a new toaster and strainer/siever, throw out scratched nonstick pans, and check all your OTC and Rx meds. You should probably also eliminate lactose from your diet too in case there is damage in the small intestine too - until the damage heals and you can make the enzyme to digest it once more.

If you decide to do this, stay in touch and let us know how you are doing and any ways in which we can help you. :)
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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

#7 AzizaRivers

 
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Posted 04 January 2012 - 06:31 PM

It's totally possible that you have celiac anyway (my blood test was negative, too). You could push for a biopsy to double check, or you could just go gluten-free and see if it helps. Many of your symptoms do sound like classic celiac.

You do have a few symptoms, though, that aren't what I would typically associate with celiac. Celiac can certainly cause problems with intercourse and with your bladder, but those combined with your amenorrhea make me want to tell you to keep pushing your doctor to rule out any other causes of those specific symptoms. You do sound like a celiac, and if you go gluten-free and those symptoms disappear then that's great, but those sound like a few things I would want to keep an eye on.

In my opinion, IBS is a cop-out diagnosis. "We can't figure out what's wrong with you, so we're just going to tell you that your bowels are irritable." I'm surprised with your mouth ulcers and mucous membranes, etc. your doctor hasn't wanted to do a biopsy or hasn't thought about any other causes of those. Ulcers, tonsil stones, joint pain and headaches are not IBS symptoms.
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Celiac diagnosed October-November 2010 (blood test negative, biopsy inconclusive after gluten-free for 6 weeks, miraculous diet results).

October 2010: Gluten free.
November 2010: No HFCS or artificial sweeteners.
March 2011: Gradually fading out soy.

#8 beebs

 
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Posted 04 January 2012 - 07:28 PM

Thats what I think to Aziza, there are some things your list of symptoms that warrant further investigation - the fact that your Dr is not willing to try and figure out what is going on suggests that you may need a new Dr! Some of your symptoms sound very much *autoimmune* in nature (the ulcers etc) and some are so clearly nothing to do with your gut so therefore what the heck is with the IBS tag. Whatever you do - I think you should get a new Dr who knows about autoimmune stuff - have a look in the Doctor section here.
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#9 Oats

 
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Posted 04 January 2012 - 10:32 PM

Thank you for the replies everyone!
I've wanted to get a different doctor for awhile, because my doctor has more or less misdiagnosed my entire family... The first time I went when the first diffuse symptoms started to show up, she blamed it on "too much stress and too little exercise." How easy isn't it to blame it on that in a teenager.... But where I live, it is almost impossible to get a different doctor right now...
I forgot to ad that I have had two gynecological investigations with everything seeming alright - so at least there aren't any cysts or tumors or anything like the bladder, lower stomach or ovary etc. area.
I think I will try to go gluten free for a month and then test my reaction to gluten, like was suggested. I have tried staying off of bread for about a week before, because I thought I might be reacting to yeast. This made my stomach slightly better, but since cakes and cookies seem to make it worse too, I doubt it's really the yeast...
So I'll just try it out and see what happens :)
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#10 Oats

 
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Posted 12 January 2012 - 02:03 PM

I've been free of gluten for a week, and I have indeed noticed my symptoms (especially stomach aches and digestive problems) getting better... I still don't know this is just a coincidence, so I'll have to wait and see. In a couple of weeks I'll try eating a generous amount of gluten for two days and see what happens. I think I will eliminate any yeast during these two days - because yeast also is a possible culprit for me.

I promise I'll get back to you with the results - too many people abandon their forum threads, leaving all the concerned googlers out there clueless.
:)
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#11 mushroom

 
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Posted 12 January 2012 - 03:16 PM

I promise I'll get back to you with the results - too many people abandon their forum threads, leaving all the concerned googlers out there clueless.
:)


Tlhank you for pointing this out. It is really helpful to all posters on the forum to learn if advice was followed and if it was helpful or not. It is also a courtesy to all those who have taken the time to respond to let them know what happened. :)
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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 Oats

 
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Posted 07 February 2012 - 08:47 AM

OK, an update. I went gluten free for a month, and quite early on my amenorrhea resolved.
Now I'm back on gluten, and I certainly feel worse. I do not want to draw any conclusions yet... But here is what I've noticed:
- headaches. Pretty much every day. I used to have this a lot before I went off gluten, but did only have occasional headaches while off.
BUT: Not conclusive - because it has been -15 or so outside, which triggers headaches for most people.
- Digestion. Not as bad as it was before I went gluten free, but I do believe I'm getting some of the symptoms back... (Constipation-ish, diarrhea-ish - alternating)
- Feeling tired and weak. I noticed this from day one back on gluten...
- Stomach aches - upper middle stomach. This is the kind of stomach ache I had before I went gluten free, and this morning I felt it again. Not as severe, but certainly there. Also, I get a stomach discomfort after eating sometimes, and I get easily nauseated.

Keep in mind, all these symptoms are (at least at this point) very diffuse and mild, so I will not draw any conclusion until I feel confident that these are not just placebo-symptoms.


Oh, and just a little note for those worrying about the losses of not eating gluten... I during the gluten free month, I felt like I missed bread, cakes, anything with gluten really... But when I ate it again, I realized I can do perfectly fine if I have to live without it. You just want what you can't have, heh. Really - I kind of miss my gluten free bread (most tastes blah but this one kind: "Fria FIBER" is So. Darn. Good. Especially toasted - which can by the way be done from a frozen state!)
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#13 UKGail

 
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Posted 07 February 2012 - 09:52 AM

Hi, it sounds like you have answered your own question - you do seem to have gluten sensitivity. Although you may not think your reactions to taking up gluten again may be strong enough to worry about, you are just 18, just a couple of years younger than I was when I first had similar problems to you. I am now 47, and not having the ability to search and share information with other suffers like you do when I was your age, I din't pay much attention to it and went back to eating gluten. I wish I hadn't as it would have saved me a lot of pain and poor health, and trouble for my family. I have just posted my story for a similar question in the next thread down from this one, if you wish to look. My early menopause reversed once I went gluten free, and I also tested negative to the celiac antibodies.

As you have insurance, it might have been better to seek a biopsy before you tried going gluten free. Unless you go back on gluten for a good few months, if you have a biopsy now, and it is negative, you won't know if your gluten free experiment interfered with the result or not.

I would suggest you consider either gluten challenge and biopsy, or go straight for a strict gluten free lifestyle. It is not worth risking your health for bread and cake. Your doctor might not agree with this advice, as many seem to think that a gluten free diet is unhealthy, or too difficult. Well it might be if all you eat is gluten substitutes, rather than just eating home-cooked naturally gluten free meals.

If things don't fully resolve within a few months of being on the diet, or if you feel worse, then bear in mind there may be other problems too which may need medical investigation.

I hope you work out what is best for you.
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#14 dani nero

 
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Posted 07 February 2012 - 11:48 AM

Hi, it sounds like you have answered your own question - you do seem to have gluten sensitivity. Although you may not think your reactions to taking up gluten again may be strong enough to worry about, you are just 18, just a couple of years younger than I was when I first had similar problems to you. I am now 47, and not having the ability to search and share information with other suffers like you do when I was your age, I din't pay much attention to it and went back to eating gluten. I wish I hadn't as it would have saved me a lot of pain and poor health, and trouble for my family. I have just posted my story for a similar question in the next thread down from this one, if you wish to look. My early menopause reversed once I went gluten free, and I also tested negative to the celiac antibodies.

As you have insurance, it might have been better to seek a biopsy before you tried going gluten free. Unless you go back on gluten for a good few months, if you have a biopsy now, and it is negative, you won't know if your gluten free experiment interfered with the result or not.

I would suggest you consider either gluten challenge and biopsy, or go straight for a strict gluten free lifestyle. It is not worth risking your health for bread and cake. Your doctor might not agree with this advice, as many seem to think that a gluten free diet is unhealthy, or too difficult. Well it might be if all you eat is gluten substitutes, rather than just eating home-cooked naturally gluten free meals.

If things don't fully resolve within a few months of being on the diet, or if you feel worse, then bear in mind there may be other problems too which may need medical investigation.

I hope you work out what is best for you.


UKGail and Oats I'm so happy to hear your periods came back. I'm 33 and I just went gluten-free myself after 20 years of amenorrhea.
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Self diagnosed January 2012, and on elimination, low-salicylate & low-iodine diet.
Also G6PD

#15 MitziG

 
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Posted 07 February 2012 - 01:34 PM

You mentioned in your first posts that you didn't know what tests your Dr did. Request a copy of them. Many on this board can provide you more info than your Dr did. Regardless, it seems pretty clear that gluten is not your friend, whether you choose to pursue an " official" dx or not!
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