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Road To Recovery?

Greyhound

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Greyhound Rookie
Greyhound
Posted

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! :)

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Bubba's Mom Enthusiast
Bubba's Mom
Posted

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! :D

pricklypear1971 Community Regular
pricklypear1971
Posted

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 Rookie
Greyhound
Posted
  • Author

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 :rolleyes:

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      Headaches / Migraines and Hypoglycaemia

      By trents · Posted

      This article does not address migraines at all.  Yes, red wine and sulfites are often mentioned in connection with migraine triggers. With me, any kind of alcoholic beverage in very modest amounts will reliably produce a migraine. Nitrous oxide generators, which are vaso dialators, also will give me migraines reliably. So, I think most of my migraines are tied to fluctuations vascular tension and blood flow to the brain. That's why the sumatriptan works so well. It is a vaso constrictor. 
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      Excessive dietary tyrosine can cause problems.  Everything in moderation.   Sulfites can also trigger migraines. Sulfites are found in fermented, pickled and aged foods, like cheese.  Sulfites cause a high histamine release.  High histamine levels are found in migraine.  Following a low histamine diet like the low histamine Autoimmune Protocol diet, a Paleo diet, helps immensely.    Sulfites and other migraine trigger foods can cause changes in the gut microbiome.  These bad bacteria can increase the incidence of migraines, increasing histamine and inflammation leading to increased gut permeability (leaky gut), SIBO, and higher systemic inflammation.   A Ketogenic diet can reduce the incidence of migraine.  A Paleo diet like the AIP diet, that restricts carbohydrates (like from starchy vegetables) becomes a ketogenic diet.  This diet also changes the microbiome, eliminating the bad bacteria and SIBO that cause an increase in histamine, inflammation and migraine.  Fewer bad bacteria reduces inflammation, lowers migraine frequency, and improves leaky gut. Since I started following the low histamine ketogenic AIP paleo diet, I rarely get migraine.  Yes, I do eat carbs occasionally now, rice or potato, but still no migraines.  Feed your body right, feed your intestinal bacteria right, you'll feel better.  Good intestinal bacteria actually make your mental health better, too.  I had to decide to change my diet drastically in order to feel better all the time, not just to satisfy my taste buds.  I chose to eat so I would feel better all the time.  I do like dark chocolate (a migraine trigger), but now I can indulge occasionally without a migraine after.   Microbiota alterations are related to migraine food triggers and inflammatory markers in chronic migraine patients with medication overuse headache https://pmc.ncbi.nlm.nih.gov/articles/PMC11546420/  
    • trents
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      Then we would need to cut out all meat and fish as they are richer sources of tyrosine than nuts and cheese. Something else about certain tyrosine rich foods must be the actual culprit. 
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      Body dysmorphia experience

      By Scott Adams · Posted

      Thank you so much for having the courage to share this incredibly vivid and personal experience; it's a powerful reminder of how physical ailments can disrupt our fundamental sense of self. What you're describing sounds less like a purely psychological body dysmorphia and more like a distinct neurological event, likely triggered by the immense physical stress and inflammation that uncontrolled celiac disease can inflict on the entire body, including the nervous system. It makes complete sense that the specific sensory input—the pressure points of your elbows on your knees—created a temporary, distorted body map in your brain, and the fact that it ceased once you adopted a gluten-free diet is a crucial detail. Your intuition to document this is absolutely right; it's not "crazy" but rather a significant anecdotal data point that underscores the mysterious and far-reaching ways gluten can affect individuals. Your theory about sensory triggers from the feet for others is also a thoughtful insight, and sharing this story could indeed be validating for others who have had similar, unexplainable sensory disturbances, helping them feel less alone in their journey.
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