Officially diagnosed - recovery struggles after 2 and a half months

[Phosis]

So I finally saw my GI, and she told me everything I needed to hear: "You definitely have celiac disease."

"But what if-"

"No. It's definitely celiac."

And fair enough. After two and a half months of being gluten free, my bowels have finally reached a pretty normal state. I can load up on fat, and yes, even some dairy again, with no urgency or loose stools to follow. This was NOT the case, even a month ago.

I am on a PPI, and that controls my upper GI systems mostly. I have trouble staying asleep at night right now. I use cannabis to help with this.

In December, I started feeling lightheaded. I wouldn't say dizzy just...not myself. Easily agitated. This comes and goes. I can't tell if it's related to eating - sometimes it happens at random, other times I might feel it while I am working on a belch. My blood pressure is kind of high right now, and I have been riddled, absolutely riddled, with anxiety. So maybe this is related?

But definitely my whole GI tract is finally starting to relax. Before, I could not touch any "gluten-free" products - pastas, etc. High fiber really irritates me, and always has so I try to keep that reasonable. 

Again, it is only in this last two three weeks that these GI issues have started to improve. These head issues suck. Sometimes it makes me feel nauseated. I am snappier with people. Its on and off, usually worse early in the day, so going in tomorrow for MORE tests. Anyone else deal with this?

[NNowak]

I’m glad you got an official diagnosis and are on the road to recovery. From personal experience, I can give you some suggestions. I dealt with dizziness/mental fog that seemed to worsen over the years. As I was in the process of growing my family, I attributed it to pregnancy brain. However, it only worsened and added symptoms. To keep the story short, I was diagnosed with multiple deficiencies - the most severe being B12 and Folate. Once that was normalized I realized hypoglycemia is still a challenge. You may want to be checked for deficiencies (especially Bs and D) and inquire about your glucose. Dehydration can also cause dizziness. 
 

Good luck!

[cyclinglady]

Congratulations for joining the club you never thought you would join!  The good news is that you know what you are dealing with.  What a relief!  Expect to go through a grieving process.  This is normal.

Anxiety ridden? Yes, this is common.  So is depression.  It often resolves on a gluten free diet.  When exposed to gluten, I get snappy.  My kid notices this before I do.  Of course, I was going through menopause when I was diagnosed, so it is hard to know for sure if gluten or is it just active celiac disease or crazy hormones, but I think both!  

I was only  deficient in iron.  Nothing else.  In fact my b-12 and folate were crazy high due to drinking silk soy milk which was heavily fortified.  My numbers came down when I realized that I was supplementing incognito.  With healing, I got milk back!

Take this to your doctor!  

 https://www.beyondceliac.org/research-news/new-celiac-disease-guidelines-emphasize-follow-up-care/

https://www.mayoclinicproceedings.org/#/article/S0025-6196(19)30121-1/fulltext

[Fenrir]

A lot of folks with celiac disease have anxiety that's aggravated by reacting to gluten. It also is aggravated by going off of gluten because there are withdrawals for many people. 

Keep in mind some of the symptoms a celiac might have can also be cause by anxiety. GI issues, high blood pressure, irritability...ect. are all things you could be experiencing from either celiac or anxiety or maybe a combination of both. I think you just need time and both will improve. It might not be a bad idea to ask the Dr. about meds for anxiety until you're recovered but I understand people not wanting to take any meds they don't have to. 

[Posterboy]

On 2/4/2020 at 5:28 PM, Phosis said:

My blood pressure is kind of high right now, and I have been riddled, absolutely riddled, with anxiety. So maybe this is related?

Phosis,

B12 has been linked to anxiety in some studies...you also might have high homocysteine levels if you are having trouble with B12....taking PPIs (for over 6 months) can cause us to be low in many Vitamins and Minerals.....looking back on my many health issues at the time...I found taking Riboflavin (B-2) helped my chronic high blood pressure....I didn't know it at the time...I was taking it for Angular Cheilitis (leaky lips).... and I reduced my BP medicines from 3 to 1 over about 3 months of Riboflavin supplementation...your urine will be a bright yellow/orange neon color when it begin bypassing the kidneys....other B-Vitamins might change the color of your pee as well...but Riboflavin will cause it to glow when you have enough...

Here is the study about Riboflavin and high BP....it works (often) better than some medicines for high blood pressure especially if you have MTHFR gene variation....I no longer take Riboflavin...but my chronic high BP is now under control.

https://jeffreydachmd.com/2015/11/riboflavin-hypertension-mthfr/

I hope this is helpful but it is not medical advise.

Posterboy,

[Phosis]

Update to this: my doctor pointed out low B12 levels from a test done sometime last year. 189, no idea what that number entails. So he recommended injecting B12. I had my blood tested again for it yesterday as well. He also referred me to a neurologist just to rule out possible tumor etc, as a "just in case thing".

Normally that would have made my anxiety skyrocket...but honestly, I'm so tired of this all that I was just sort of apathetic to that.

My friend takes B12 through injections and is teaching me how tonight. What fun

[NNowak]

This sounds odd, but HOORAY!!!  I cannot tell you how much better I felt once my B12/Folate deficiencies were addressed. I inject myself every 2-3 weeks using a diabetic syringe and needle. It was a life changer once my levels were normal again!!!  I did a B12 loading regimen the first month, so my results were noticed very quickly. Most notably, my severe chronic migraines disappeared and echo in my left ear resolved. Six months later the numbness and balance issues are much better. Of course, I’m also not nearly as tired anymore. It’s a life changer for me. 
 

I hope your experience is positive once you’ve normalized your B12. Good Luck!

[Phosis]

So big, big stuff...

Started injecting B12. The effects were almost immediate. Went from functioning at about 40 percent to about 80. Been four days now, feel much MUCH better. I still have the odd little neurological "tick", it's not "perfect", but I was the walking dead for the past three months. Just a ball of misery. I couldn't do anything, even take my kids out, go to church, etc. This weekend I was out all day with my kids. I am back at work as well. Even my stomach has calmed down tremendously.

[NNowak]

I’m so happy for you!!  That’s how I felt, too, about 80% better. My stomach pain was also considerably less as well as the bathroom visits. There is a lot of research that states the very things we experienced,  but the GI may say they’ve never heard B12 affect stomach pain or bathroom issues. 
 

Getting your life back is such a blessing!!  Hope you continue on your path to wellness and energy.