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Just a quick question did anyone before they got diagnosed have symptoms that came and went, or increased and then decreased?

 

I always don't feel "right", I know that a good week or month for me is not the same as before I got ill three years ago, but I definitely have weeks when I get far worse, the headaches get worse the joint pain gets worse, the nausea really kicks in and the heartburn starts again.

 

This normally results in time off work, I tell my boss I have a stomach virus because I don't know what else to call it, after a week I begin to feel a bit better, during the week I will lose weight because I just dont feel like eating.

 

I have been referred to a gastroenterologist, and I'm going to ask them for a endoscopy,  my bloods were negative but I didn't have the full panel and I have been told the bloods do not paint a full picture of what's happening.

 

Any input appreciated

 

Tally   

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YES! Symptoms came and went. Sometimes I felt fluish and even had mild fevers. My arthritis really varied month to month, and my migraine came and went every few days.. Yep. Good and bad weeks were the norm.

 

Are you still consuming gluten if you are going to be tested further? Good luck with the GI.

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Thank you for the information, I am, but I'm in the middle of what I can only describe as a flare, headaches, nausea, fatigue, so I'm eating gluten light.

I still don't know if gluten is a problem for me, but I have been feeling that ill I really don't fancy making it worse, if there's any chance eating less gluten will help I will take it.

I have never gone 100% gluten free, because I know I need further tests, getting diagnosed would be a blessing tbh. I feel my life is on hold, I can never guarantee how my health is going to be from one day to the next, I just enjoy the good days, the bad days seem to be happening more and more recently.

I'm thankful for this forum though, I'm not certain my problem is celiac but it's a distinct possibility. I just need some answers If it's celiac the diet doesn't worry me. I have noticed a difference on gluten light, but then I had this flare up which confuses things!

Thanks again

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Gluten light...how light?  Please continue to eat at least a slice or two of glutenous bread EACH DAY until you have a completed all celiac antibody tests along with endoscopic biopsies...should you choose to have an endoscopy.

 

Once those are complete or you decide you do not wish to have more tests....remove ALL gluten for at least three months (six is better) to monitor symptom improvement/resolution.  Continuing a gluten light path may make your tests falsely negative and certainly will not help determine if gluten is an issue--either Celiac Disease or Non-Celiac Gluten Sensitivity.

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Your right, it's getting so bad I'm having time off work, so it's really hard to keep eating it, it's my anniversary this weekend so I'm going to gluten light until Monday. I'm going for a consulatation at the end of is month, then hopefully an endoscopy, but that will probably be a month later. Do you think one slice of bread is enough to show damage on an endoscopy? Basically no gluten filled meals but no worries about small amounts of gluten and cc.

I will go back to gluten on Monday/Tuesday but I need a few days rest, my poor partner must be so tired of having a sick girlfriend,

Thanks guys x

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a lot of my symptoms came and went, which completely added to my confusion.  How could something be wrong one week and not the next?  One of my most frustrating is that I am a musician, and freshman year of college I started reacting to my nickel/silver mouthpiece.  I went to my GP and he prescribed an anti-fungal cream, attractive I know :lol:, but it made it disappear.  It came back senior year, which sucked because I was taking auditions, so I switched to a gold plated mouthpiece and all was fine.  Back in October 2012, I had to play on a flute to demonstrate something for a student.  I played on it no more than 10 minutes, and bam the lip tightness reappeared.  I tried the usual anti-fungal cream, but it didn't work.  The contact dermatitis would develop into angular cheilitis, and on the last round when the anti-fungal didn't work I did some searching and came across celiac and vitamin deficiencies.  I tried gluten-free for three weeks, and then read I had to go back on it for testing, but those three weeks gave me a glimpse of the future and the angular cheilitis cleared up.  With all my other symptoms, that's when I finally decided to see a GI doctor.  If I would have paid attention through the years, anytime that I had earrings touching my neck with a little bit of sweat, I would have raised bumps on my skin.  Moisture seems to aggrevate the contact dermatitis for me.  Since I teach elementary music, if I'm trying to repair a student's instrument sometimes I have to play it.  However now I've realized that if I play the instrument quickly and start to feel that tightness, I do not apply chapstick for the rest of the day and it will go away.  My lips will visibly look very tight.  The metal triggers the reactions, but the mositure catapults it into angular cheilitis and those cracks in the corner of your mouth hurt!! 

 

I had a talk with my GP last summer and remember making the comment saying, but I didn't always react to the metal in my instrument.  He said we aren't born with allergies, but instead they develop.  In my case they developed, but there is definitely an ebb/flow to my reactions.  It definitely adds to the confusion, but I've read others posts on the board and just know that flare ups are completely normal :)

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