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Hoping For Advice

jm815

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jm815 Newbie
jm815
Posted

Hi, my name is John. I'm experiencing symptoms which could indicate celiac disease, lupus, or several other conditions. This has gone on for 6 months, with no diagnosis as of yet. I'm eagerly awaiting an appointment with a good rheumatologist, but that's still 3 weeks away.

In the meantime, I've been trying some dietary adjustments to see if I can figure out the problem. I gave up caffeine, alcohol, and dairy for a few weeks, with no effect. I've greatly reduced my intake of sugar as well. I eliminated gluten a week and a half ago.

I recently read some information which made me question my choice to go gluten-free. I was reading about diagnosing celiac disease, and apparently the first biopsy test should be done while still eating gluten. Is this accurate? Are there other tests which are done, or is the biopsy the most common/trusted?

Basically, I'm feeling lost and desperate for some answers. I realize that my dietary experimentation is hardly scientific...I guess it's mostly a way of making myself feel that I'm doing something, instead of waiting around for the next round of appointments and tests.

My question boils down to this: Do you think there's any point to continuing this gluten-free diet right now? Is it potentially counter-productive?

Any advice would be greatly appreciated.

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mouse Enthusiast
mouse
Posted

If you wish a frim diagnosis of Celiac or gluten intolerance, then you must be eating gluten. You can get a false negative by not having enough time of eating gluten. They do a panel of 5 blood tests to rule in Celiac and also the biopsy. With the biopsy they must take samples from 8 to 10 areas. And even then they can miss the damaged area. Good luck with whatever choice you make.

jm815 Newbie
jm815
Posted
  • Author

Thank you very much, armetta.

aikiducky Apprentice
aikiducky
Posted

Armettta is right. You need to keep eating gluten to be tested. But I also wanted to add that an elimination diet is also a diagnostic tool if you go about it in a methodical way. So don't discount your diet experiments. Did you notice anything different while being gluten free, versus being dairy free, etc.? You could think of keeping a food journal where you write down everything that you eat together with any symptoms you have every day.

Pauliina

jm815 Newbie
jm815
Posted
  • Author

I started a nutrition journal, but a week into it, the file got corrupted and was lost. That was discouraging, and I haven't continued it since then.

I wasn't very methodical about eliminating things from my diet. I eliminated caffeine, alcohol, and dairy all at once. I did notice that some twitching in the areas around my knees went away. I figured this was due to the absence of caffeine and/or reduced sugar intake. Other symptoms (primarily pain in joints and fatigue) remained the same.

During the time that I've eliminated gluten, I've eaten dairy, and I've had some wine. I'm continuing with the no caffeine/reduced sugar changes I made. My attempts at self-diagnosis have been all over the place, and I think that's indicative of my mental state at this time.

I think I'm going to introduce gluten back into my diet so that I can be tested if the rheumatologist thinks it's appropriate.

Thanks for your response, Paulina.

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