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I'm new to this gluten free potential celiac life could use some tips


Nickkk

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Nickkk Newbie

I've been battling terrible stomach pains and other symptoms for over 12 years , my doctor always just assumed it was ibs cause it runs in my family I've had scopes done and what not but never once found anything to help me then he finally said I should test you for celiac then said I can't believe I haven't lol good doctor eh , so a cppl days before I was to go into get my test done I had to go away for work so when i went i decided I'm gonna go gluten free see if it helps while I'm away and it did a great amount to the point i was at 4 months 0 gluten then I tried to eat it more less to see what would happen I only ate one meal and literally felt like death after and for days after my doctor wants me to get that test still but I don't wanna eat gluten again willingly is there any way Around that for the test and also does anyone else have swollen lymph nodes in there neck and random lower back pain  they feel is from their celiac? Thanks 


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Nickkk Newbie

I've been battling terrible stomach pains and other symptoms for over 12 years , my doctor always just assumed it was ibs cause it runs in my family I've had scopes done and what not but never once found anything to help me then he finally said I should test you for celiac then said I can't believe I haven't lol good doctor eh , so a cppl days before I was to go into get my test done I had to go away for work so when i went i decided I'm gonna go gluten free see if it helps while I'm away and it did a great amount to the point i was at 4 months 0 gluten then I tried to eat it more less to see what would happen I only ate one meal and literally felt like death after and for days after my doctor wants me to get that test still but I don't wanna eat gluten again willingly is there any way Around that for the test and also does anyone else have swollen lymph nodes in there neck and random lower back pain  they feel is from their celiac? Thanks 

knitty kitty Grand Master

Welcome to the forum, @Nickkk!

Yes, yes, and yes.

Genetic testing can determine whether you carry any of the genes that code for Celiac Disease.  Your genes don't change, so no gluten challenge is needed.  The most common genes for Celiac are DQ 2 and DQ 8, although there are other less common ones out there.  

Swollen lymph nodes in the neck can be a symptom of inflammation and /or infection.  I had swollen lymph nodes when I had SIBO (Small Intestinal Bacterial Overgrowth).  A change to the Autoimmune Protocol Diet (AIP diet) has remedied that.  

Lower back pain has happened to me with the SIBO if I've eaten too many carbohydrates and the intestinal microorganisms are partying like there's no parents home and my intestines bloat (squeaky balloon animal sounds included).  Sometimes happens with broccoli.  Cruciferous vegetables produce a lot of gas and bloating.

Be sure to get tested for vitamin and mineral deficiencies that commonly occur in Celiac Disease.  And get your doctor to refer you to a nutritionist or dietician.  

trents Grand Master

There is no way around going back on gluten in order for the tests to be valid. Do you need an official diagnosis for some reason? If avoiding gluten relieves your symptoms then that is the important thing.

Scott Adams Grand Master

I agree with @trents, it seems that you already know that you're gluten sensitive, and possibly have celiac disease. Unless you want to eat ~2 slices worth of wheat bread per day for 6-8 weeks in order to get a blood test for celiac disease, then you probably should just stay gluten-free.

Scott Adams Grand Master

Given how you describe that you "felt like death" after you ate gluten, I think you have your answer, and probably should just stay gluten-free, unless you need a diagnosis to keep yo on a gluten-free diet for life. Some people do.

This article may be helpful:

 

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      More great tips, and a good excuse to shop at M&S and also buy more iced buns!   I wish we had an ASDA near us, as the few times we've been to one their gluten-free pasta range seemed very reasonably priced compared to other shops.  Thanks so much, @Russ H.
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    • Flash1970
      You might try Heallix.  It's a silver solution with fulvic acid. I just put the solution on with a cotton ball.  It seemed to stop the nerve pain. Again,  not in your eyes or ears.   Go to heallix.com to read more about it and decide for yourself Also,  I do think nerve and celiac combined have a lot to do with your susceptibility to shingles breaking out. 
    • trents
      Celiac disease requires both genetic potential and a triggering stress event to activate the genes. Otherwise it remains dormant and only a potential problem. So having the genetic potential is not deterministic for celiac disease. Many more people have the genes than actually develop the disease. But if you don't have the genes, the symptoms are likely being caused by something else.
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