Not new to Gluten-free Casein-free but starting it again

[cubbyholed]

I went off gluten in 2015 because my blood sugars were 72 mid afternoon after eating normal. My pancreas was in overdrive.  I went off all sugary drinks too. 25 days later, I went to my Dr and had lost 9 lbs. I wasn't constantly hungry anymore. 

I did get tested and had the endoscopy with negative results.

18 months later, I went off dairy. It seems milk protein (casein) was causing a similar reaction of bloating and constipation.  

Along came the shutdown and I'm having to start all of this over. 2 rounds of being sick and I'm dealing with an extra 35 pounds, my hair is way thinner, I have bursitis in both hips and the joints in my feet are either on fire or sending sharp spasms out of nowhere. 

I've had my PCP test for everything and only had a false positive for lupus. 

I even went to a private nutritionists and had other tests run. Those tests showed my liver wasnt functioning properly and a recent surgery showed at some time my kidney functions were off enought to have a stage 3 kidney disease and my levels are normal now.

I feel like the biggest hypochondriac for continually asking my Dr for another test when everything's a big negative.

If anyone has any ideas, or similar stories, with results, I would love some advice.

Thanks for listening 

[trents]

  On 2/19/2023 at 2:32 AM, cubbyholed said:

I went off gluten in 2015 because my blood sugars were 72 mid afternoon after eating normal. My pancreas was in overdrive.  I went off all sugary drinks too. 25 days later, I went to my Dr and had lost 9 lbs. I wasn't constantly hungry anymore. 

I did get tested and had the endoscopy with negative results.

 

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Was the endoscopy done before or after you went gluten free?

[cubbyholed]

  On 2/19/2023 at 5:15 AM, trents said:

Was the endoscopy done before or after you went gluten free?

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It was after, but I went back to gluten for the 7 days prior to the procedure.

[trents]

7 days is probably not enough to give a valid test, especially if you had been gluten free for a while.

[Scott Adams]

Welcome to the forum!

If having a test that shows you that you should be gluten-free isn't necessary, then you could also just go gluten and dairy-free again for several months to see if your symptoms go away again, as you seemed to have good effects from this diet in the past.

If gluten is causing some of your issues, then it is likely that you will see improvement with some or all of your symptoms/issues.

[cubbyholed]

  On 2/19/2023 at 8:19 AM, Scott Adams said:

Welcome to the forum!

If having a test that shows you that you should be gluten-free isn't necessary, then you could also just go gluten and dairy-free again for several months to see if your symptoms go away again, as you seemed to have good effects from this diet in the past.

If gluten is causing some of your issues, then it is likely that you will see improvement with some or all of your symptoms/issues.

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I can't say a positive test is necessary,  but it might explain a lot of what is going on. 

[cubbyholed]

  On 2/19/2023 at 6:12 AM, trents said:

7 days is probably not enough to give a valid test, especially if you had been gluten free for a while.

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If I remember correctly,  I had been off of gluten for 30-60 days when I had the endoscopy. 

[Scott Adams]

It is definitely possible that you had false negative results. To be re-tested you'd need to eat gluten daily for 6-8 weeks before a blood panel for celiac disease.

[cubbyholed]

  On 2/19/2023 at 7:53 PM, Scott Adams said:

It is definitely possible that you had false negative results. To be re-tested you'd need to eat gluten daily for 6-8 weeks before a blood panel for celiac disease.

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My most recent test back in October came back negative and I've been eating gluten regularly for over a year. It's sooo much harder doing this a second time. I feel silly asking to see a GI specialist, but I have inflammation everywhere including lungs now. I've seen an allergist, herbalist, pulmonologist, ENT... the list goes on. I feel like if somebody looked at the bigger picture and connected the dots, I could get a straight answer. 

 

 

[Scott Adams]

There is a condition called non-celiac gluten sensitivity and there is not yet a test for it, but even if you test negative for celiac disease you may still have NCGS and need to go gluten-free.