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Should I Do The Gluten Challenge Or Not?


dan95

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dan95 Rookie

Ok so basically i went gluten free for 2/3 weeks due to suspecting i have celiacs, which turned out to be a bit of a mistake as im now in a bit of a dilemma.

 

basically i have been back on gluten for the past week as i couldn't cope with the withdraw symptoms i was experiencing but now im not sure if i should wait 6 weeks and then go and get tested or just dive back into it and do 6 weeks+ gluten free and see how i feel. the reason its such a dilemma is that my symptoms have caused me to leave my job and obviously i just want to get back into work and carry on with my life, and the quicker the better as sitting around at home is getting to me and i don't really fancy sitting about for another 6 weeks waiting for the gluten to get back into my system.

 

i have been tested for most things by my doctor such as diabetes, thyroid problems plus all the other routine things but all have come back as normal. The only common thing i haven't been tested for is allergies

btw im a 18 year old male and have had all these symptoms since i was about 15/16, also i haven't really changed much in terms of puberty (no facial hair, still quite skinny etc) since ive had all this, but im not sure if that's normal for me or not.

 

i will list my symptoms incase anyone has any ideas

my symptoms are;

 

slow healing wounds

fatigue

low libido

excessive thirst

excessive phlegm/ sinus problem

excessive urination 

white spots on nails

red nose

random yawning and sneezing every now and then

cold and tingling hands and feet

forgetfulness 

poor concentration

mood swings

irritability

muscle aches

bad lower back

no morning erections 

slight gyno

diarrhea / strange stools plus i seem to go about 3 times a day.

also my testosterone levels was on the low side of normal

seem to gain fat on face and stomach easily.

 

i did seem to notice a slight difference whilst not eating gluten for a few weeks, but i wasn't really on it long enough to judge if i do have celiacs or not.

 

also when i started eating gluten again i was quite itchy and sweaty for the next hour or two,

 

any advice would be greatly appreciated, thanks. 

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LauraTX Rising Star

I think that while getting diagnosed can be very helpful, you have to think of the pros and cons of an official diagnosis.  If you are in school and need a dx for accommodation, need to know your genetic risk for your offspring, need a dx for follow up testing, etc then it can be a good idea to do a diagnosis.  However, in your case, since the symptoms are interrupting your ability to perform your job, and hurting your employment status could derail a lot of things, it may be a good idea to put it on the back burner for now.  You could set a goal of saving up time off from your job/money and in a year or two, take some time off and do your gluten challenge if it is still something you want to do.

 

If you are totally set and secure to have a job when you are done with the 6 weeks, it is a good idea to do it now because scheduling in something like that may stay on the back burner forever once you have a lot of stuff going on.  If you are like me and would stew with anxiety from now knowing that could be another incentive.  But unless you are not going to screw up your life by taking time off, I would go ahead and just go gluten-free now and address testing later.

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dan95 Rookie

thanks for the reply. only problem with jumping into gluten free again is that im not 100% sure if my problems lie with gluten yet and the withdrawal symptoms are putting me off. is there anyway to avoid the withdrawal?

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Jmg Mentor

I have similar symptoms. The only way you'll get that certainty you seek is to go through the testing procedure which requires you to consume gluten. That's what I'm doing right now. If you get diagnosed you'll have both every incentive and lots of support to get through the adoption of the gluten-free diet, although I have to say that any withdrawal I had was as nothing compared to the relief of symptoms. Put it this way, at the end of this gluten challenge I'm going gluten-free for life regardless of the biopsy report as my own body is telling me quite clearly that it wants no more of this. 

 

Your still young and you have so much to potentially gain from identifying this early. It's ultimately a personal decision however and good luck with whatever you choose to do. 

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ravenwoodglass Mentor

IMHO if you can do the challenge and get a diagnosis you should. You may want to go to college someday, possibly be hospitalized etc and you would need to have safe food. You are young and if you have children down the line and suspect that one of them may be celiac it will be easier for you to get the doctors to check if you are already diagnosed. There can be false negatives with testing but they are fewer than in the recent past so it is worth doing.

Some of your symptoms sound like they could be low B12. You may want to try supplementing with the sublingual form to see if it helps. The tablets dissolve under your tongue bypass the damaged digestive system. Do tell your doctor you are taking them as if the doctor checks your levels the vitamin will impact that. It won't have any impact on celiac testing. 

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dan95 Rookie

thanks for the replys guys. just been to see my gp and they told me to go on gluten for the next 3 weeks which will take me to a month on gluten and then get tested. funny thing is she said she thought i had been tested for celiacs a year ago but it must of been missed. takes the mick really.

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Jmg Mentor
 

thanks for the replys guys. just been to see my gp and they told me to go gluten free for the next 3 weeks which will take me to a month on gluten and then get tested. funny thing is she said she thought i had been tested for celiacs a year ago but it must of been missed. takes the mick really.

 

Dan, your post above seems a little confusing. If your GP is planning a test for you the last thing she should be advocating is for you to go gluten free! You need to be consuming gluten for weeks prior to the test. 

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kareng Grand Master

thanks for the replys guys. just been to see my gp and they told me to go gluten free for the next 3 weeks which will take me to a month on gluten and then get tested. funny thing is she said she thought i had been tested for celiacs a year ago but it must of been missed. takes the mick really.

Dan, your post above seems a little confusing. If your GP is planning a test for you the last thing she should be advocating is for you to go gluten free! You need to be consuming gluten for weeks prior to the test.

Was just about to post this, too. Seems like you don't really want to be gluten free unless you need to? If you want a positive result on the blood test (If you have Celiac) you must be eating gluten. Also, your first post said you have been gluten free for 2/3 weeks?

Open Original Shared Link

"Antibodies take time to build into the blood stream before they can be detected through blood analysis. For a gluten challenge we recommend eating 1/2 slice of bread or a cracker each day for the duration of the challenge.

  • Prior to blood testing we recommend 12 weeks of eating gluten.
  • Prior to an endoscopic biopsy we recommend 2 weeks of eating gluten."
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dan95 Rookie

sorry i meant go on gluten for 3 more weeks, not gluten free. and ik only a month back on gluten isnt really ideal but my gp said thats all ill need, but surely ill be atleast borderline by then if i do have celiacs, plus im not keen on waiting any longer than that anyway. im more annoyed at the fact she forgot to test me a year ago when everything else was getting tested.

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Jmg Mentor

sorry i meant go on gluten for 3 weeks, not gluten free.

 

That explains it :D

 

It's good that your dr wants to get to the bottom of this. Best of luck with the test. Hope you get some answers. 

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Georgia-guy Enthusiast

Dan, I know you don't want to hear this....but after your tests are run, do NOT stop eating gluten until you have the results. If they are negative, or borderline, your doctor may want to re-run the tests with a longer amount of time on gluten. The best and easiest way to do this would be if you just stay on the gluten until you have a definite answer. The tests should only take a few days to come back, so you're only looking at a few extra days eating gluten (and feasting on things you will miss if you're like me) if they come back positive. But if they come back inconclusive, then you just go a few more weeks and retest instead of having to start over. I would rather take the option of staying on gluten for a few extra days just in case than starting over.

Even if your doctor says they are negative, I would not stop eating gluten and would request your doctor schedule to redo the blood work (hopefully they are doing the full panel) after the standard 8-12 weeks to ensure the results are accurate.

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  • 3 weeks later...
dan95 Rookie

ok so im going to get tested some time next week which will be just before the 5th week of my gluten challenge, i know it isnt the ideal " 6 weeks+" but i cant actually wait any longer as im fed up of sitting about feeling this way, im not too sure what im going to do if it comes back negative as i have no idea what else it could be, so in a way im more worried about it coming back as negative, which sounds stupid. Anyway are there any specific tests i need to ask for or can i trust my gp to do all the right ones if i just ask for a celiacs test?

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Georgia-guy Enthusiast

Dan, these are the blood tests available for celiac disease:

-DGP-IgA

-DGP-IgG

-tTG (anti-tissue transglutaminase)-IgA

-tTG-IgG

-EMA (anti-endomysial antibodies)-IgA

-EMA-IgG

-Total serum IgA

The EMA tests are older and less reliable, but can still be helpful in some cases. The 5 you want to really push your doctor to run are the DGP and tTG (both the IgA and IgG versions), along with the Total Serum IgA (many people with celiac are "IgA deficient, making the IgA based tests show a false negative. A defiecient reading on Total IgA will show your doctor that the IgA tests are not accurate if you are IgA deficient).

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dan95 Rookie

thanks for the info.

 

one more question guys, im kind of stessing about if its something else and was wondering if my symptoms actually seem like celiac symptoms or more like somthing else? i was reading about lyme disease and that has scared me a bit as my symptoms are quite similar to many associated with lymes, although lymes is quite rare in the uk.

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LauraTX Rising Star

thanks for the info.

 

one more question guys, im kind of stessing about if its something else and was wondering if my symptoms actually seem like celiac symptoms or more like somthing else? i was reading about lyme disease and that has scared me a bit as my symptoms are quite similar to many associated with lymes, although lymes is quite rare in the uk.

 

If you feel like you may be at risk for lyme disease, it is always a good idea to get the blood test to rule it out.  You can just ask them to throw it in there with the other tests.

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