Digestive issues and no diagnosis. Problems related with gluten?

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Hi, everyone. I am 25 years old and I have been experiencing a lot of symptoms since a long time and I am absolutely unable to get rid from any of them. My main digestive issue is pale and very soft stools, like a mild diarrhea that is happening almost everyday. I have a lot of gases as well. The diarrhea gets worse when I eat a lot of nuts but, if I don't eat them, it doesn't improve too much. I have been always skinny and it is getting worse last months. Moreover, it seems that when I eat a lot, then I get worse than when I eat less. Moreover, I usually feel very tired, irritable, angry, sleepy and I forget things constantly. Specially when I eat a lot and then I get this diarrhea, I feel very week, my hands start to tremble and, overall, I feel really sick. However, these days I was eating less and surprisingly, I don't feel that way, but a bit a better (but I don't feel even close to my 80%, anyway).

I had recently a blood test and everything looked fine. Just bilirrubine was too high, but I have Gilbert's Syndrome, so I know that's completely normal. My GP told me to go lactose free, but it didn't work at all. The only thing that made me improve was avoid eating huge amount of nuts.

On the other hand, I need to say that I have also struggled with hair loss during a lot of time. I lose a huge amount of hair everyday and it didn't stop at all since I first realized this. However, as my GP mentioned, it's just androgenetic allopecia, so I don't have anything to do with that, just waiting to see myself going bald. Appart from that, the skin of my face is often itchy, full of pimples and very dry (and even other parts of my body). I think I should have showers less often, because it seems that I am completely damaging my skin. I also struggle with erectile dysfunction, premature eyaculation that seem to be caused by loss of libido. I am completely impotent, no erections, never! Almost no sexual desire as well.

Going back to my blood tests, I also got checked of celiac disease with IgA transglutaminase and it was negative by far (almost 5 times below the top limit). As the lactose free diet didn't work, my GP referred my to the gastroenterologist but... yeah, pretty cool... I booked a consultation on May next year, because it couldn't have been earlier! So, as you can imagine, I'm completely desperated with this right now. It looks like I'm crazy because it seems that everything I eat makes me feel bad so I am trying to avoid this and that, without results. The only thing I am achieving is loosing even more hair and lose even more weight so yeah... I am fine‘.

My GP also told me that pale stools could be a normal thing with Gilbert's Syndrome but that doesn't explain diarrhea, I guess (despite that can be a symptom, but I think Gilbert's Syndrome shouldn't give chronic diarrhea this way). I don't want to feel like this the rest of my life, specially with no sexual desire. So, I was thinking going gluten-free for a little time and see if that makes me improve, but maybe everyone will think I'm crazy and say "I am sure that you're not celiac". I've seen that some people improve with gluten-free diet even if they aren't diagnosed as celiac (non-celiac gluten sensitivity, for example). Probably that won't be my case, but I should give a try, maybe. I have also read that some people get a negative in their celiac tests, but they are actually celiac because the test returns a certain amount of false negatives.

For some years, my symptoms haven't changed at all, so I'm desperate about this. I tried avoiding alcohol (0% since 2020), walking more, changing some things of my lifestyle and even having showers less often to avoid washing my hair too much and damaging it even more. Nothing worked at all. Some of the things that should "make me feel better" made me feeling much, much worse. Any idea of what I should do?

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  • Posted

    hi anonim, go back to your doctors ans ask to see the practice manager. fight for an actual diagnosis, this illness you've spoken of is something i've never heard of. if you can keep some sort of food diary you can track if certain foods do more damage than others. whatever this is you need help with it regardless. insist on information, to help yourself. i've had to do it and i finally have the truth, sone help and what i need to help me.

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  • Posted

    Hi,Ive got coeliac condition nothing improved until I went on the Haye diet (keeping carbs separate from protein) Google haye diet.

    and drink water with protein meal

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