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whattodo

Back On Gluten With Bad Symptoms, Should I Continue?

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Hi everyone,

Its been a few months and thought i would update you all on my progress, or lack of.

Well the last time i was on, i had just had my negative result for Celiac, but did have inflammation of the duodenal tube. They left it like that for a couple of weeks before i got a letter from the hospital requesting i go back on gluten for 2 months and have a re-test.

What they did find out is that i had helical bacter pylori, which i have had twice in the past year. I have now taken my eradication therapy. Which hopefully has cleared that up.

In 2 months when i have the second endoscopy they are checking to see if i have got rid of my bacteria aswell as taking biopsy of my duodenal tube to check for the celiac. I think the doctor is concerned that i might have got a false negative in my first biopsy.

After a couple of days of thinking about whether or not to go back on, i gave in. I decided id rather know if i had gluten intolerance or not. I have been gluten free for 2 months and was feeling alot better although my stomach was slightly better but not completely. (Probably due to the fact that i had helical bacter pylori).

Well i have now been on gluten for 2 weeks and feel really rubbish. I have started getting the following symptoms:

Numbish Left side of my face

Permanent Muscle Spasm in my left hand side upper hip. (cant sleep on that side of my body)

Piles have returned (with a vengeance)

Large rash on chest (doctor admits this could be candida, yeast overgrowth)

Permanently white coated tongue (could be the after effects of the eradication therapy and candida).

I have hurt my back twice in 2 weeks really badly. (trapped nerve)

My symptoms seem to have come back with a vengeance this time, before i just has a numbish face and a permanent stomach pain. Is it possible that i am overdoing the gluten. Is there a rule for the biopsy test on how much gluten to eat?

Now i know that most or nearly all of you are going to say "STOP GLUTEN". HAHA

I know, this is what i am saying to myself every minute of the day. I need to get a positive result this time. I have tried to live life without gluten but confident my way of lifestyle had suffered alot. Not only that but i was scared to drink in bars and scared to eat in restaurants. I am even scared of going for weekends away and holidays. I dont want to have to live like that if i dont have to. Im sure some of you might understand. I need this result. My relationship is suffering because of me being worried about getting glutened all the time.

I believe i can quite happily live without gluten if i needed to. But i dont want to live like that if i dont need to.

The way i look at it is that i only have 6 weeks to go. My doctor has seen my concerns about going back on the gluten and has agreed to take blood half way through my 2 months to check my vitamin and mineral levels. he will also check my blood for celiac disease at this time.

I would like to know if anyone has experience the back problems and the muscle spasm problems. I did once have a muscle spasm on the other hip for 2 days when i did my last gluten test but this went after going gluten free. I have had this spasm for 1 week now.

My question to you all is will this extra 6 weeks cause any permanent damage. My doctor has ruled this out and said it will all go away once i go off the gluten. I suppose i am more worried about the serious disease associated with celiac disease. At what point should i say enough is enough, i accept i may have celiac disease?

I know i have gone on a bit of a rant but would like everyone's input on my situation. The thing that i am most worried about is the fact that i am turning into a hypochondriac and there might not be anything wrong with me, the fact that i focus my attention on my symptoms may be making it worse. This is why i need a true result.

Sorry for the long post

Best regards

Jason

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I am going to tell you the same thing my allergist told me when I called him sick as dog during my gluten challenge. Stop. You have just done the most valid, for sure diagnostic tool that we have at our disposal. The results were positive, even if you continue to poison yourself your blood could NEVER show up positive and a biopsy is very hit and miss. Doctors want us to be almost dead many times before they will diagnose and if you continue you do run the risk of permanent damage to body systems.

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Is there any way you could move up the date of your biopsy?

I already have, they wanted to make it for 3 months. i got them down to 2 months

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Have you talked to your doctor about the increase in symptoms and your concern about being on gluten for two more months while your problems continually get worse?

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Have you talked to your doctor about the increase in symptoms and your concern about being on gluten for two more months while your problems continually get worse?

Yes i have, i saw him yesturday with all those symptoms. I said i should try and go through the next 6 weeks. He assured me my symptoms would go when i stop gluten. i am monitoring them and believe me if they get any worse i am going to stop

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I believe i can quite happily live without gluten if i needed to. But i dont want to live like that if i dont need to.

Nope, you don't have to live without gluten. You can live like this instead:

Numbish Left side of my face

Permanent Muscle Spasm in my left hand side upper hip. (cant sleep on that side of my body)

Piles have returned (with a vengeance)

Large rash on chest (doctor admits this could be candida, yeast overgrowth)

Permanently white coated tongue (could be the after effects of the eradication therapy and candida).

I have hurt my back twice in 2 weeks really badly. (trapped nerve)

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Yes i have, i saw him yesturday with all those symptoms. I said i should try and go through the next 6 weeks. He assured me my symptoms would go when i stop gluten. i am monitoring them and believe me if they get any worse i am going to stop

Well, it's a shame he can't accomodate you by moving the test up further, but if you're determined to get a hard and fast diagnosis by the gold standard of biopsy, I guess you'll just have to hang in there. Many of us have suffered for years before receiving a diagnosis - (still working on getting mine) - I guess it's your choice.

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You will maybe get a diagnosis & maybe not & you will maybe get permanent damage from eating this gluten & maybe not. That is about all I know... Except, that I think this is the only disease known, where you are asked to nearly kill yourself to prove you have it. I mean, like, how dumb is that?

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I think I would stick it out another 2 weeks until the repeat blood work and see what the vitamin levels and celiac antibody show. If your B12 is less than 400 that is low enough to cause some symptoms, and could be from malabsorption even if you are not anemic, same with the iron, TIBC test. You could still be iron deficient with a normal low/normal iron level but have a low % saturation. The docs usually treat those 2 as symptoms and tell you to take more supplements, but often don't try to find out WHY there is a deficiency. Ferritin is another good indicator of iron storage.

I agree with the others, often doctors will wait til you're in the hospital half dead until they will actively look for celiac.

I don't remember all the details of your last posts, but remember you had many symptoms like my daughter's. When she goes back on gluten she gets sick, epsecially that pain on the left side which you have mentioned in the past, but after a week or 2, most of the severe syptoms subside and she feels better, though not great. Maybe some of your symptoms will subside as your body readjusts to gluten and you will be able to stick it out.

When you return for the blood work, I would ask about a lyme titer? I don't know how common it is in the UK, but Bell's Palsey is a numbness on 1 side of the face which is often a precurser to lyme.

Depending on how you feel after the blood work, and after discussing the results with your doc, then I would make the decision whether to wait for the biopsy or not. Kind of a 1 day at a time approach.

Hang in there for now, but listen to your body! You may never have positive antibodies to celiac anyway! Good luck

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Guest j_mommy

If you are sure you want an offical DX(I did) then I would hang in tther until your blood tests, if those are positive, along with your obvious dietary response...I would go gluten-free.

Good Luck and I hope you feel better soon and get some answers!!!!!

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