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Am I Celiac? Negative Blood Test


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#16 heidi g.

 
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Posted 07 February 2012 - 08:44 PM

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.
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#17 heidi g.

 
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Posted 07 February 2012 - 08:58 PM

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.
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#18 kingle

 
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Posted 08 February 2012 - 09:32 AM

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
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#19 Oats

 
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Posted 13 March 2012 - 07:09 AM

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.
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#20 Oats

 
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Posted 13 March 2012 - 07:18 AM

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.
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#21 HGMama

 
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Posted 13 March 2012 - 09:04 AM

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???
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#22 UKGail

 
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Posted 14 March 2012 - 04:11 AM

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.
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#23 Lori2

 
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Posted 14 March 2012 - 04:57 AM

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.
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#24 mushroom

 
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Posted 14 March 2012 - 11:22 AM

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

http://adam.about.ne...ts/000101_2.htm

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.
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#25 1desperateladysaved

 
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Posted 08 May 2012 - 11:07 AM

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!


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#26 KendraAnn

 
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Posted 10 May 2012 - 09:10 AM

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???


Hi HGMama, I too had negative blood work, but I had a postive biopsy. I have been gluten free for 13 days now and overall am feeling better. "Normal" bowel movements (haven't had that in over 10 years!), basically no acid reflux, but I have been having gluten withdrawals resulting in headaches for all 13 of these days so far. I've read that it might take 2-3 weeks for the withdrawals to subside. What were the results of your biopsy? Good luck!
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2002- Shingles resulted in chronic headaches, depression, IBS, GERD, allergies, etc. for years
2012- Positive biopsy followed by negative blood test
4/28/12- Gluten Free

#27 Oats

 
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Posted 24 April 2013 - 09:07 PM

Hello! It's been a long time! I am now as good as symptom free.

After going gluten free for a while (and getting better), I went back to eating wheat & co. I didn't react. I think that maybe any stomach irritation would make gluten hard to digest! 

 

Right now, I only occasionally get acid reflux, mostly after eating fatty food (which also gives me stomach aches at times!)

My period went normal after starting the pill at my doctors request. She also found an ovarian cyst, which may have wrecked havoc with my hormones (which were a little out of balance - to little of this, too much of that)

 

 

Also, the doctor found out I had mononucleosis antibodies, which suggests that my stomach problems could have been long lasting after effects of that.

 

I have some friends who also got better from not eating gluten, but then did not get worse again from eating it again. I think that ruling out gluten completely might often not be necessary even if it makes your symptoms ease after a week or two, because it would most likely do that with any stomach problem! 

 

Thanks for your support, and good luck!


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#28 foam

 
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Posted 24 April 2013 - 11:15 PM

I've got the feeling you will get sick again eventually on gluten. I'd just do the gene test and if you have DQ2 then don't eat gluten ever again. That's the only way to be sure.


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