21 and I feel 90

[GabriellaMarie]

 About a 2 years ago, I was having trouble with shortness of breath. It went from shortness of breath to not being able to focus. I felt that there was saran wrap around my brain. Using google, I found that this was called dissociation-where the world can feel 2-dimensional, and you can even feel outside of yourself like an out of body experience. It feels like I am losing my mind! I was terrified of course and went to countless doctors. They continued to prescribe me anti-depressants. even though I insisted that I wasn't depressed, and there must be something else wrong.  A cardiologist eventually found that I had POTS which is a blood flow problem essentially. There is no medication for POTS.                                                     Eventually, that feeling subsided slightly, until recently. Along with the "brain fog" (as my doctor calls it) and extreme shortness of breath, I was having diarrhea, dizziness, and all of the fun flu symptoms. I went to the ER and they thought it could be a reaction to my new birth control and ran tests for a blood clot. I had to do my own research and read that my symptoms aligned with Celiac disease. I was tested and sure enough, I am celiac. Now here is my problem. I have been following the gluten-free diet, as well as my vegan diet I have already been following with lots of fruits and vegetables. I am also not B12 or Vitamin D deficient as many with cognitive issues on celiac forums report to be. (In fact, my doctor said I have way too much B12 haha.) I am concerned that this feeling will never go away. It feels like 2 years since I have been myself, and I was really hoping celiac was the answer. I am still very sad about the diagnosis: my diet being very limited. (A Cuban without Cuban bread is blasphemy.) I just want gluten-free to feel worth it. I want to feel a change. Has anyone else dealt with ongoing problems within weeks of going gluten-free? My doctor made it seem that I would have immediate results, and that is just not the case with me. I can't take this disconnected feeling. I am graduating college in a week, and feel that I won't be able to be successful in this state. :/

 

[Ennis-TX]

21 hours ago, GabriellaMarie said:

Has anyone else dealt with ongoing problems within weeks of going gluten-free?

WAY early in the diet. will be months before you really start feeling better, takes years to heal completely. If you have nerve damage even longer but only those with a gluten ataxia aspect need worry about this. There is also the HUGE learning curve, as you have to go through, clean out your contaminated condiment jars, throw out scratched pans, cutting boards, colanders that might retain gluten residue, learn to read ingredients, and what brands to trust. Please go over the newbie 101 sections.

Few other things to consider it is not just B-12 all B vitamins work together, there are also many other nutrients and vitamins that work together, and you some have to work with others to be absorbed and used by the body. I take a liquid supplement regime to help with my brain fog, I take Liquid Health Stress & Energy and Liquid Health Neurological Support 1 tbsp each 3 times a day. OH I do recall reading something over a year ago do not quote me on this but it was something about having high b12 in the blood and still not absorbing or utilizing it well as it needed to be used in conjunction with other nutrients. I will see if I can dig up that article or maybe another forum member can help (I know there is one better versed then me on nutrients and the bodily functions)

You mention vegan, I take it you consuming plenty of plant based fats like nut butters, seeds, avocado? Again many nutrients are fat soul able and your brain loves fats energy and thrives off of ketones (Mine does, so I use a ketogenic/vegan diet) your body produces from breaking them down. You probably already consume it as a vegan but look up KAL nutritional yeast, power house of vegan nutrients you might be low in without meat. I use it in my vegan cheese sauces and various other recipes (check out my recipe blog here and the recipe sections on the site, I do many vegan ones)

 

[GabriellaMarie]

4 minutes ago, Ennis_TX said:

WAY early in the diet. will be months before you really start feeling better, takes years to heal completely. If you have nerve damage even longer but only those with a gluten ataxia aspect need worry about this. There is also the HUGE learning curve, as you have to go through, clean out your contaminated condiment jars, throw out scratched pans, cutting boards, colanders that might retain gluten residue, learn to read ingredients, and what brands to trust. Please go over the newbie 101 sections.

Few other things to consider it is not just B-12 all B vitamins work together, there are also many other nutrients and vitamins that work together, and you some have to work with others to be absorbed and used by the body. I take a liquid supplement regime to help with my brain fog, I take Liquid Health Stress & Energy and Liquid Health Neurological Support 1 tbsp each 3 times a day. OH I do recall reading something over a year ago do not quote me on this but it was something about having high b12 in the blood and still not absorbing or utilizing it well as it needed to be used in conjunction with other nutrients. I will see if I can dig up that article or maybe another forum member can help (I know there is one better versed then me on nutrients and the bodily functions)

You mention vegan, I take it you consuming plenty of plant based fats like nut butters, seeds, avocado? Again many nutrients are fat soul able and your brain loves fats energy and thrives off of ketones (Mine does, so I use a ketogenic/vegan diet) your body produces from breaking them down. You probably already consume it as a vegan but look up KAL nutritional yeast, power house of vegan nutrients you might be low in without meat. I use it in my vegan cheese sauces and various other recipes (check out my recipe blog here and the recipe sections on the site, I do many vegan ones)

 

Thank you so much for the response. I had not really even considered all the contamination that is in my own home. I have really not begun to think of how serious being celiac is going to be. Definitely, need to be more vigilant. I was just getting impatient because it seemed that people were feeling an immediate difference, and that's what my doctor expected.

I am going to check out those supplements! Before going vegan I would take a fish oil omega 3 and that really helped with brain fog, so I will try to see if those could help. As far as B 12 I will do my research. My blood work looked really good, but who knows if my body is actually absorbing it. 

Thank you again.

[Jmg]

Hello and welcome

You described those symptoms so well, I like the saran wrap around the brain metaphor, although we call it cling film in the UK. I used to feel like I had a divers mask on or as if I was talking to the world through a bank tellers window glass.

As Ennis says its still early days. There's some good advice on cracking down on hidden sources of gluten here: 

 

One final thought. I experienced some initial relief first time going gluten free but it took a lot longer for some of the other symptoms to go, especially the neuro ones. So be patient and just focus on eating lots of fresh non processed gluten-free food and look after yourself whilst you heal.

Good luck

 

 

[cyclinglady]

You have received some excellent advice.  Your elevated B12 may be due to your body being unable to process unmethylated cobalamin (b12) found in supplements and processed foods.  Google it!  My b12 was extremely elevated and no, I did not have cancer.  I could not process the non methylated version added to a daily vitamin or soy milk.  Once I avoided the cheap b12 version in my foods, my b12 went into the normal range.  

Since you are Vegan, look for a good gluten free methylcobalamin supplement (preferably sublingual (dissolved under your tongue).  For me, no worries. I get plenty of good b12 from my diet naturally, but I consume a lot of eggs, meat, fish and dairy.   

You might consider consulting with a celiac-savvy dietitian who can help you with both a vegan and gluten free diet.  It can be tricky from a nutritional stance.  

[celiacsojourness]

When I was in the early stages of recovery after my celiac diagnosis (and by early, I mean 18-24 mos), a friend told me about a friend of hers who was really sick and was still not able to eat much without feeling terrible, until 5 years after going gluten free when she could eat almost anything. I clung to that for years, and around 4.5-5 years I felt great and was able to add a lot of foods to my diet. Hang in there. In the meantime, maybe keep a food log to see if other foods may be bugging you temporarily. Your symptoms sound similar to mine, and I know they can be awful <3