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I'm one of those 90% neurological and 10% GI people.
Like you, I have tingling, numbness, etc in the extremities, headaches, dizziness, clumsiness, random pains in my body including ankles, but these symptoms are present even now that I've been gluten-free for over a year. Of course, they were worse when I was eating gluten (especially dizziness, clumsiness, headaches). One of the most obvious signs of an accidental glutening for me is a headache. First the headache comes, and then the characteristic sleepiness, brain fog, weakness, lack of energy, inability to think or concentrate or function at all, and the need to nap. In fact, I have had accidents because of my clumsiness and dizziness, including a disfiguring hematoma. Cannot read at all when glutened; not capable. Your symptoms sound very similar to Celiac, but based on your blood test and negative endoscopies, I would have to conclude that you do not have Celiac (it is something else).
Here is my belief based on everything I've read and heard up to this point about Celiac and autoimmune disease: Celiac is just one test that has been discovered to detect one form of an autoimmune disease related to the exposure to gluten; there may be other gluten-related forms of autoimmune diseases that are not yet discovered. You may be having problems that there is currently no blood test for. Trust your body; if you become ill every time you expose yourself to gluten, then that means that your body is having either an allergic or autoimmune reaction to the gluten. There are blood tests you can take that will show general autoimmunity; I would look into that.
I also believe, based on your low B12, D, and folic acid, and family history of hypo, that you may have other autoimmune issues going on, very likely thyroid if not others. You should immediately get a full thyroid panel:
Free T4 & Total T4
Free T3 & Total T3
Thyroid Peroxidase TPO
Funny how all these things seem to be connected. So many patterns. Seems like Celiac and hypo go together almost. I have high Thyroglobulin Antibody but T3 and T4 and TSH all normal...and GERD runs in my family too...
Also, you mentioned you took antibiotics. This is very important; antibiotics can destroy your immune system and cause autoimmune diseases in more susceptible people (we are in fact those people) if you do not restore your microbiome. You need to start a course of probiotics immediately and continue them indefinitely. The more I learn about how important the microbiome is, the more I realize the importance of supplementing with probiotics. 70% of our immune system lives in the gut; our friendly bacteria are part of every function of our bodies, not just the immune system, and killing them is the same as killing ourselves. I am currently using probiotics and I can testify that they help me in every way (neurologically and GI). I take one that has 34 strains and claims 100 billion CFUs.
True that the water on the inside is not CC. However, as I said, I like certain things to remain un-CC because my water jug is one of those things that I use to prepare my food. I use it in cooking and in refilling my water jug. If it was a "glutened" object, I would have to segregate it off from my other gluten-free items and treat it like one of my husband's food items, washing my hands after every contact. It gets tiresome. Is it really too much to ask for certain things to remain clean so that I can wash my hands 1 less time per day?
Actually, bleach will disintegrate the molecular structure of the protein molecule, thus disabling it from causing an immune reaction. A Celiac medical student who is a friend of mine told me this. Also, did you know that if you wash all of your dishes by hand with the same sponge, you are CCing all your dishes. Let's say you just washed a plate that was used to serve spaghetti, with normal wheat noodles. Then, you used that same sponge to wash the plate you are about to eat off of. You then eat your meal. You have just CCed yourself.
Of course not, but what if I touch the handle to pour my water, and THEN I touch my gluten-free waffles? I will then CC myself. Why is this so hard for everyone to grasp?
I don't believe I overreacted. I believe he CC'ed my jug and I will bleach the handle when I get home. I like certain things to remain free of CC because I wash my hands enough as it is, you know, over 100 times per day, and especially when preparing my own food and when about to eat my own food. Had I been in a great mood this morning I may have laughed and thought it was funny, but my hormones are imbalanced and my mood has been quite poor lately and I'm seeking medical help for this.
If we as Celiac people didn't have to worry about CC, we would just be buying oatmeal and other non-wheat grains that are processed on the same equipment that's used to process wheat flour and not care in the least bit.
Actually there shouldn't be any doubt whatsoever that CC has occured between the wheat bread to his hands to his phone to my jug. And I don't eat in public much, in fact rarely. There are fewer than 5 restaurants that we go to, and every time we go, I realize there is a small chance of CC and I have to accept that when we eat out. But first time I get sick at a restaurant I never go back.
I have my own water jug filled with filtered water and I refill my water bottles with it. Our fridge has been so packed full lately that I haven't had any room in the fridge to put my water jug, so I left it out on the counter. It is labeled "gluten-free," which hubby knows means gluten-free. Well I told him this morning that there was no room for it in the fridge. We will be getting a bigger fridge "soon..."
Well, hubby decides to help me out by trying to fit it into the fridge...I said: "You just glutened my water jug."
He said: "No I didn't.
I said, "Did you touch your phone and then touch my water jug without washing your hands?"
He said: "You need to get your head out of your ass."
I said: "Don't talk to me right now."
He said: "We don't have to live in a clean-room environment!"
I didn't respond, and I'm very angry with him right now...
Now, here's why this is, in my opinion, a glutening...he eats wheat bread and then handles his phone immediately after touching the bread with his hands. Therefore, his phone is totally glutened.
Thanks for all the advice everyone. I've been getting better at avoiding accidental glutenings. I pretty much eat within certain strict brand names of foods and I don't go outside those brand names. I'm careful when I try a new brand. They key is being strict! But a few days ago I took a chance and ate some black eyed peas that were just the normal store brand and I got glutened. Where do we get gluten-free blackeyed peas?
I'm one of those Celiacs who never gets gastro symptoms; for me, they are all neurological. During an accidental glutening, I get intense fatigue, brain fog, sleepiness, inability to concentrate, a strong need to nap, tension headaches, etc. All of these symptoms make me useless and its basically a waiting game until I can crawl into bed. Thankfully, I work from home and make a part time income, and my husband is the breadwinner.
But if some financial emergency occured in our family and I had to get a job and make more money than I do now, he and I don't think I could do it. But I know there are many Celiacs out there that do. So what do you do when you get the same symptoms that I get? We all know that accidental glutenings happen. And what if it happens at work?
I am determined to find an answer. I shall keep looking. I've contacted several organizations and will be getting in touch with Dr. Alessio Fasano's office on monday to see if they know of anything. I know about his medication for blocking the effects of zonulin but I'm not about to go on medication for the rest of my life. I need something that can be taken on an as-needed basis when accidental gluten exposure occures.
How do I stop the effects of being glutened after I've already been glutened? I want to stop the fatigue, achy muscles, tiredness, foggy brain right in their tracks after I've been accidentally glutened. How do I do that? Any vitamin? Supplement? Medication? Herb? Tea? Anyone know of anything that does this? Desperate for the answer.