Road To Recovery?

[Greyhound]

Hello everyone! I'm 23 and I'm on the twelfth day of being gluten free and I seem to be slowly recovering from the problems I've been having for the last few years.

The worst symptoms have been exhaustion and aching, both of which seem to be already improving slowly. I'd get home from work, lie down and sleep and sleep and then I'd wake up and need to sleep even more. It was getting to the point where I couldn't do much but work and sleep. I'm still very tired now but at least my sleep is refreshing, which it hasn't been for the last few years.

I also get horrible deep aches all over my body and especially in my legs (worst in my calves and knees). It got to the point where even lifting a arm would make it feel like I'd been weightlifting for half an hour. Just walking up a small flight of stair would make my legs feel like they'd been running non-stop for an hour. They felt like they were full of lactic acid and I got out of breath really quickly. This is slowly getting better, although two days ago it was really bad. Today has been the best day for the aches and it's been amazing just walking on flat ground without them aching. Almost euphoric!

This all crept up on me quite slowly so I just sort of got used to it as me and how I am. I tried different supplements, which sometimes helped marginally but the problems didn't go away. I didn't know what to do.

I don't have many digestive symptoms but I do alternate between constipation and diarrhoea. Again, this sort of crept up on me and I sort of forgot that this wasn't really normal. Lately, though, I'd been getting quite a lot of wind and holding it in in public was getting difficult. It's decreased quite a bit since going gluten free. Very occasionally I feel nauseous when I need to go to do a 'number two'.

I've also lost weight. I've always been slim but my cheeks have hollowed and my face looks bony. The nurse who weighed me last said that I could do with eating more (I can eat lots of anything I want and still lose weight).

I also have frequent headaches and migaraines but today has been the first headaches I've had since going gluten free. There have been hints of headaches or migraines coming on but they haven't appeared.

Another horrible thing is that my brain seems to have deteriorated over the last few years. My short-term memory is quite bad now and I can have a thought only for it to disappear immediately. I believe I started becoming slightly less co-ordinated as well and I noticed changes with my balance (my balance used to be very good, but now I'll occasionally veer to the side a bit a look a bit drunk for a few seconds. Not badly or often but noticeably (to me) more than before.

Every time I went to the doctor, they ordered another anaemia blood test and the results would come back with my iron levels at the low end of normal and they'd tell me to keep taking the iron (what, forever?).

About three, maybe three and a half, years ago I had an operation to remove a large abscess from one of my ovaries. The problems seemed to start then and get worse, but before that I would never really feel properly well - like I'd always be slightly under the weather. So I think I had these problems before but the operation made them worse.

There are some other things that I don't know whether they're connected and I've written loads so I'll leave it at that for now.

I just hope I've finally found what's wrong and that I can start to recover at last. I'm so glad this forum's here. I need some people to talk to about this!

[Bubba's Mom]

It looks like you're one of us that gets the neurological symptoms from gluten? Be very mindful of trace amounts. They seem to bother us a bit more than those with just digestive issues..IMO?

It takes time for the neuro issues to heal, so don't get discouraged!

[pricklypear1971]

I know they tested you out the wazoo for iron but did they test your b's, D's, k, cal/mag? We are notoriously deficient in those too and getting up to the right levels could help your symptoms.

A probiotic and digestive enzyme could help the gas, etc.

[Greyhound]

I know they tested you out the wazoo for iron but did they test your b's, D's, k, cal/mag? We are notoriously deficient in those too and getting up to the right levels could help your symptoms.

Nope. They aren't helpful at all :-( Oh, they once checked my thyroid levels (normal), and a fasting blood test (I think for blood sugar?) which was also normal.

No tests for vitamins, though. They seem so complacent. They see my iron levels as being a bit low and they tell me to just take more iron (which obviously isn't working). I know it's in the normal range but they said that the haemoglobin can still be low. That's it. Nothing else considered - not even the cause of the (very mild?) anaemia