Celiac and anxiety

[EmilyZ]

I am really struggling with a recent diagnosis of Celiac Disease.  I spent most of my life (37 years) being told my symptoms were just stress and IBS related.  Realizing how my issues effect my ability to be there for my kids made me upset and I finally insisted on a referral to a GI doctor and was diagnosed with Celiac Disease.  I have been gluten free for about a month and a half now and I feel more miserable than before.  I think the need to be so hyper vigilant to everything is sending my anxiety into a tailspin which amplifies my tummy symptoms and leaves me a basket case.  I just don't feel well ever and I feel so scared.  I think it would help to know if this was a normal thing for other people too.  I am planning on checking for other food intolerances soon to hopefully eliminate/reduce other things that could be aggravating my system.  Any thoughts?  Does this get better?  

[trents]

Welcome to the forum, @EmilyZ! Yes, it does get better. In time you will develop a sixth sense of what you should avoid and you won't have to think so much about it. 

Are you getting good support and understanding from family and friends or a lot of opposition?

Also, after many years of being misdiagnosed you are probably suffering from nutritional deficiencies. For celiacs, gluten consumption causes inflammation that damages the villous lining of the small bowel where all of our nutrition is absorbed. It takes time to rebuild that after going gluten free - typically two year or more. Until then, absorption of vitamins and minerals is compromised. This can be offset by taking some high potency vitamins and minerals, making sure they are all gluten free products. We commonly recommend this to newly diagnosed members of the forum. You should look at an adult multivitamin, a high potency B coplex, D3, magnesium glycinate and zinc. Vitamin and mineral deficiencies can certainly have a negative impact on mental health and contribute to anxiety.

Costco is a good place to shop for supplements. Their Kirkland Signature and Nature Made product lines are generally gluten free and if so, will state such in the label.

Edited April 26, 2024 by trents

[Scott Adams]

It does get better, and I'm sorry to hear that you're so stressed out. It's hard to see the bright side sometimes, but in your case you've finally figured out the source of many years of misery. I went through a similar ordeal and it took me years of going to doctors before I finally figured it out. 

You main focus now should be staying 100% gluten-free. 

This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):

 

 

[Awol cast iron stomach]

On 4/26/2024 at 3:39 PM, EmilyZ said:

I am really struggling with a recent diagnosis of Celiac Disease.  I spent most of my life (37 years) being told my symptoms were just stress and IBS related.  Realizing how my issues effect my ability to be there for my kids made me upset and I finally insisted on a referral to a GI doctor and was diagnosed with Celiac Disease.  I have been gluten free for about a month and a half now and I feel more miserable than before.  I think the need to be so hyper vigilant to everything is sending my anxiety into a tailspin which amplifies my tummy symptoms and leaves me a basket case.  I just don't feel well ever and I feel so scared.  I think it would help to know if this was a normal thing for other people too.  I am planning on checking for other food intolerances soon to hopefully eliminate/reduce other things that could be aggravating my system.  Any thoughts?  Does this get better?  

Oh Ms. Emily this quote is straight from my history too.

"...being told my symptoms were just stress and IBS related.."

It does get better both Scott and Trent have given excellent advice. I had 13 intolerances after diagnosis . I now have it down to gluten, and corn. I only recently got milk back. I still use nut milk, but do enjoy cheese or ice cream as milk. I still predominantly use nut and coconut milks. 

It will get better. There is the stress of learning while also embracing the lifestyle and  navigating  society  in your new "role".

Much of society/social can be based around food. Even if someone enjoyed cooking and baking , you must now work with new flours that have different properties, chemistry, and taste. All while parenting, and realizing you may have given this potential health burden to your children. It can be overwhelming indeed.

Be gentle with yourself. Give yourself grace with the errors or mistakes you may make. Also on a side note I found acupuncture a tool that helped me on my journey to recovery post diagnosis if you are open to alternative health paths.  

Best wishes. 

[Suzi374]

Hi Emily. I have had a history of weird stomach issues but not typical celiac symptoms I don’t think. Constipation, reflux, heartburn, feeling like I can’t get enough air when eating some foods, panic attacks, anaemia (veg though) and I’ve had so many tests that have shown nothing. So needdd neurologist for numbness and tingling in feet and he asked if celiac. He ordered a lot of blood tests that hopefully I’ll get back Tuesday. I kind of thought let’s just go off gluten, because I started to link all the weird symptoms up that I’ve been having for around nearly 4 years. Now 8 days off gluten and have had two nasty panic attacks, one making me call an ambulance (humiliating) as I felt like I was going to die. I felt like something was wrong, then can’t get my breath, then my heart takes off. I’m hoping this is withdrawal or something that will start to improve. I do get those attacks but now I’ve had two full on ones and many smaller ones this last week. On the positive, no longer constipated!!! Yay. Can bend down - knees didn’t seem to want to bend which started a couple of years ago, I’m not napping during the day which is strange as I get exhausted. I have more energy and when I’m not having a panic attack, I feel clear in my head. No more buzzing. I have heard there’s some detox effects. I’m hoping that’s true and not just weirdos saying that there’s detox effects lol. Is anything better for you at all?  I did read that for some people it can be quite nasty to detox, due to something the gliadin does. Again I’m wary but I think they mentioned gliamorphine. Just maybe Google that. Your not alone though ❤️. I’m hanging in there hoping that this is an answer to a fairly rough time. 

[Suzi374]

Emily I also have a friend who is celiac along with two sisters. One of those sisters was almost crazy until she was supplemented with B12. Now she’s so much better. I was also just reading a scientific report that stated that blind studies showed marked improvement in some pts with psychiatric illnesses. So not just someone saying something random, but actual peer reviewed studies. 

[CindyLF]

With a strict gluten free diet, you will eventually get better and the anxiety will definitely lessen. I was so sick, physically and mentally, that I could barely function. The worst part for me was the anxiety and depression.  I learned that gluten not only affects the digestive system, but causes inflammation throughout the body, including the brain. Continue the gluten free diet and as others have said, take supplements. Magnesium and potassium were helpful for me besides a multi vitamin. Stay the course and realize it will take time to heal.