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Five months ago I developed symptoms. I felt a tired, low energy, and in the head not feeling all there. A slight sore throat coming on, the feeling you get when you're *about* to get sick. Problem was, I never really got sick (no cough, no runny nose, no fever) and this "almost sickly / tired / foggy feeling continued." For days. Weeks. Months.

I went to the doctor. Tests came back normal for things like thyroid checks, vitamin B12, mono, Epstein-Barr, etc. The only thing was my Vitamin D that was insufficient at 23 (30 is normal). I took Vitamin D pills and now my level is 36. The symptoms continue. Some are less and others are more, but the overall feeling is definitely still there. Over the weeks of taking the pills, I'd feel better for a few days, then worse for a few days. Rinse, repeat.

The primary symptom during this whole time is what I call brain fog. I see the term thrown around and I don't know if it's the same as what other people say it is but generally I use brain fog because it feels like my experience is clouded in my head. Like having a layer of cloud in your brain fogging things up. Physically it feels almost like a headache, but not quite. It feels almost like being dizzy, but not quite. It feels like tiredness and extreme exhaustion, but that has lessened in recent months and it feels more like a headache. Sleep doesn't change it. There are no noticeable patterns. Even when it's not severe, I feel like it's "always there," my head never feels fully clear. Seems to come in waves. I might go 3-5 days without a severe episode, then it is severe for 3-5 days. Or it might show up in the middle of a day and continue for the rest of that day.

Some symptoms came and went: most notably temperature extremes: night sweats, or feeling very cold and shivering. These were quick episodes and stopped after the first month. They happened maybe less than 5 or 8 times. Maybe it's unrelated. The sore throat died down in recent weeks. But I do consistently get cold extremities, which I never used to get. And dry lips, which I also rarely got and only in the winter.

And new symptoms appeared in the first month: weakness / feeling of internal 'wobbliness' in my muscles, particularly in my thighs. Not 24/7 but sometimes, kind of like the cycles from before. It wasn't involuntary movement. But I definitely could feel weakness / wobbliness. This has died down in recent weeks. One night I felt tingling on my hands, but that symptom never returned. 

MRI results are normal. With the exception of something my neurologist described as something about the white matter that is part of normal aging (I'm in my mid-30s), but can appear in people with migraine headaches. I think I will talk with him again to discuss this further because I do not really understand it, but he assured me the MRI was normal. I felt the 'brain fog' prior to and while getting the MRI (symptoms at medium severity).

So here I am today, feeling about the same with brain fog / headaches and pretty much always feeling like something's a bit off, like feeling cloudy.

I can still do things, exercise, run, go out with friends. But the brain fog / headaches sometimes really kick in sometimes, it seems like in phases.

Then I read about gluten sensitivity. I see symptoms like 'brain fog' and headaches and wonder if it might be related. I do think at times after eating heavy meals the fogginess / extreme tiredness came on. But there are days where I eat gluten in cereal and I don't notice an increase in symptoms. Like I said before it comes in waves. 3 days at a time or half a day or 2 days. It's not like after every meal 30 minutes later I feel it then it goes away. But perhaps it's related to *how much* gluten I eat.. My doctor said he does not think it is a gluten issue, but that I can try going gluten free for a few weeks to see if symptoms improve. I'm currently tracking my symptoms and food intake to see if there's a pattern.

So I'm just wondering if anyone else here experiences these symptoms and if you think it might be a gluten issue.

Thank you for reading.

 

Edited by Triad

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Yes. I had most of the symptoms you spoke of. 15 months of tests after test.  No one could figure it out. Then A naturalpath tested me for celiacs and then tested my iron/ferritin. Came back with celiacs. My initial blood panels all came back ok (regs blood testing, not celiac specific) so docs never looked at my iron or ferritin. My ferritin came back at a 6 which is really low.  Most of my symptoms were actually from severe iron deficiency. Five weeks into taking iron and I am finally starting to feel better. I am also now gluten, dairy, soy, egg and peanut free at the moment. 

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Hi Triad,

I have been suffering from brain fog for nearly a decade.  I was diagnosed with systemic lupus almost twenty years ago and that is a fairly common symptom of lupus, according to my rheumatologist.  It got so bad that I had to retire from teaching high-school English.  First, I had difficulty remembering names but seating charts helped a lot.  Then, I would have a word "on the tip of my tongue" but couldn't access it.  It was more than embarrassing - I felt completely incompetent and humiliated.  The brain fog plus the physical symptoms were just too much to deal with so I retired early.  I suspect that when gluten triggers my immune response, the fog becomes thicker.  For example, I ingested gluten at Thanksgiving (from cross-contamination) and for a week I was calling my only child by the dog's name.  Or my sister's name.  Or "Ummmm...kid!"  It helps when you and your family can have a sense of humor about it - but when it affects your career, it's hard to find the humor.  

You mentioned night sweats and that was one of the symptoms I had that led my GP doc to test for lupus antibodies. You also mentioned "cold extremities."  Reynaud's Syndrome is when your fingers and toes get cold/go numb/tingle essentially because of lack of circulation.  Look at your fingernails: do they have lines or ridges going lengthwise?  That's a sign.  My GI doc told me that his celiac patients often have Reynaud's (I do) and so do lupus patients.

 You know your own body and your family history (because autoimmune diseases tend to run in families) and, if you believe that there is something the doctor is missing, then keep pushing to get a proper diagnosis.  All autoimmune diseases are tricky; it usually take a few years to put a label on what you are dealing with (on the flip side of this, if you want to purchase life and/or disability insurance, do it before your medical records show that you have a chronic condition). 

Try keeping a log of the foods you eat, your activity and stress levels, your symptoms.  Sometimes seeing it in writing can help you and your doctor clarify exactly what is going on and when and how severe.  Good luck and God bless.  Hang in there.

Edited by bread or alive
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