Am I Celiac? Negative Blood Test

[Oats]

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!

[beebs]

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.

[beebs]

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

[AJ Leigh]

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!

[AJ Leigh]

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.

[mushroom]

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.

[AzizaRivers]

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.

[beebs]

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.

[Oats]

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

[Oats]

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.

[mushroom]

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.

[Oats]

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!)

[UKGail]

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.

[dani nero]

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.

[MitziG]

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!

[heidi g.]

I had a negative blood test but positive endoscopy. But the white patches on tongue sound like something I had called Candida. It feeds on sugar and yeast so that could also be why it feels worse after bread and cake. Foggy mind is also a HUGE symptoms. Painful sex could be from a severe yeast infection which also is a major symptom of Candida. It could be celiac but with all the symptoms you just described also lean a huge way towards Candida. Did you take any antibiotics lately? Certain sicknesses can also cause it. Its an overgrowth of yeast bacteria through out your body

google Candida and read a little bit more on it. I've had it a couple years ago before I got celiacs and those are all the symptoms I have had. Especially the white patches on tongue.

[heidi g.]

Yea I think you really might consider Candida. It reacts strongly to yeast but just the same to sugar because sugar feeds yeast. Try going off sugar which is all breads, pasta (even gluten free bread and pasta) and many more. Stick to a raw diet. Don't eat alot of fruits. White patches on tongue are a major symptom of Candida. I had it worse though it was on my tongue and working its way to the back of my throat. Once you try the Candida diet it will start to kill the yeast and you will experience something called the Candida die off. You will feel worse for a couple days and will crave sugar and breads like crazy. Craving sugar is also another big symptom because that's what the yeast feed on. You might be gluten intolerant but more than half of your symptoms fall into Candida. There is medicine you can take to help get rid of it. I would suggest going on the Candida diet for a week and then start a 2 week course of digestive enzymes and a probiotic. When I had it I wasn't digesting food either and my stools came out looking like food. Digestive enzymes will help with that. But seriously google Candida. And alot of health food stores know alot about it. Aloe Vera juice helps soothe the lower stomach pains. Candida is pain to get rid of because it can keep coming back.

[kingle]

This is an amazing thread! I'm sl glad to hear that the gluten-free diet seems to be doing the job. I have some, but not nearly all of your symptoms and I'm just tired of feeling this way. I haven't started the gluten-free diet yet, but I am feeling very inspired by posts like this!

Kelly

[Oats]

Another update!

I've been on gluten again for a while, but just went off again today.

I was "fine" (not perfect - but only diffuse symptoms) for the first few weeks with gluten, but a week ago I was ill for three days. Really bad headache, diarrhea, intense stomach cramps.

Is it normal to suddenly get really ill for a couple of days like this, or is this most likely just a virus? the weeks before and the week after were all better, all though I ate gluten (approx. the same amount) the whole time. Also, I had exactly the same symptoms - only more severe - last summer. (for two weeks! Ugh)

A very curious symptom is the (sorry, disgusting) mucus. I have had it on and off for a very long time, but when I was gluten free it was only a couple of times (maybe after accidentally eating gluten?) The last few days it has been more severe.

Also - my amenorrhea returned. If this resolves within a week or so, I'm getting REALLY suspicious (that's what happened last time I went gluten free)

Another thing - my little brother, who has had some of the same problems, got gene tested - and does not have the "right" genes for Celiac's disease.

I know we don't have identical genes, but it makes me think even more that IF it is gluten I'm reacting to, it is likely to be a non-celiac gluten sensitivity.

I still have tonsil stones and my tongue is all white every morning...

Also, I went to the doctor again. Did a couple of tests - nothing seemed to be wrong.

If I find out it isn't gluten after all, perhaps I have some sort of yeast overgrowth in my body? Because eating less grains and yeast (only occasionally and mostly frozen) like I do when I'm gluten free would probably benefit for that as well.

[Oats]

Just realized that Heidi g. suggested candida. I have also considered this to be a possibility - especially because my mother used to have this when she was younger. Maybe I should try to cut out yeast but not gluten if my current gluten free trial doesn't prove anything.

[HGMama]

I am in need of desperate help! For several yrs now I have been having what I now consider "reactions" to gluten. I never thought I could have Celiacs.

After eating anything with gluten in it I experience:

Abdominal bloating (to the point that I look about 6-7 months pregnant)

Abdominal pain (severe enough that I went to the ER once after a bowl of special K cereal)

Awful gas that can clear a room in seconds

Pure liquid diarrhea ( resembles turning the faucet on. Thats how liquid it is)

Itchy hands to the point Id like to chop them off

Then for a few days after Ill be exhausted, have joint pain, and headaches. I have awful mood swings. No sex drive (my poor husband), oil like substance on the surface of the after a normal bm and one of the more frustrating symptoms is no matter how much I eat, Im always hungry!!!

I tracked my food in a journal and it all points to gluten. If I eat the gluten-free version of something Im Ok.

I recently went to the dr and had blood work done. I had Tissue transglutaminase IGA, and IGA Immunoglobulin A done both were neg!!! I have the biopsy tomorrow.

I thought for sure it would be positive i feel like people think im making things up bc I "appear healthy".

Any thoughts???

[UKGail]

HGMama - sorry you are having such a bad time of it. You can have a positive biopsy with negative antibodies, it is just not the norm. I hope it is positive for you, to give you a firm diagnosis of the reason for your symptoms. If however it is negative, and if your doctors do not find any alternative explanation for your symptoms (other than "IBS"), then please do give the gluten free diet a strict and lengthy trial anyway, you do seem to be a good candidate for gluten intolerance.

Oats - perhaps someone will correct me if I am wrong, but I don't think a candida problem is a cause of amenhorrea, but there are a number of people who post on this board who have, or have had, candida as well as gluten intolerance. You may find you need to treat both conditions.

BTW - all your symptoms other than the white tongue and tonsils are very like mine. I was largely ok eating gluten for 40 odd years, but every few months I would get a really bad migraine, vomit or be nauseous, have bad backache and stomach pain, and diarrhea. This would last for one or two days, during which I couldn't eat a single thing (and would have to stay in bed or in the bathroom). Then I would get recover, but it would take up to a week for me to recover "fully". Now that I am gluten free I notice that this is what happens to me if I accidentally come into contact with gluten, except that I recover much faster and more effectively as I now know not to go back to eating gluten again once the worst is over.

[Lori2]

When my tests were negative, the GI told me to "Eat what you want and take Imodium." After a few months, I made several decisions:

1) I hate feeling like garbage.

2) I don't need a doctor's permission to eliminate gluten from my diet.

[mushroom]

Yes, amenorrhea can be caused by celiac. See, for instance:

Open Original Shared Link

Celiac Sprue. Celiac sprue is an inability to tolerate gluten, a protein found in wheat, rye, oats, barley, and other grains. Exposure to gluten damages the lining of the intestinal tract. It is also associated with late puberty, early menopause, and amenorrhea. This disorder is now considered more common than previously believed and may even be linked to non-intestinal symptoms, such as depression, discolored teeth, and neurologic problems.

[1desperateladysaved]

I think you should try going gluten free for a while. I did a genetic test for gluten intolerance which was positive having 4/4 genes tested for. I did an antibody blood test which was negative. The diet is helping me.

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!