Newly Diagnosed

[Jake R.]

   About 3 or so weeks ago I was diagnosed after going through three weeks of rampant anxiety, sleepless nights, and a persistent feeling of dread that something was really wrong with me, but I just couldn't pin down why. I was, all things considered, healthy as a horse! I went (and still go) to the gym, got good sleep, and ate as healthy as I could. My weight was average for my size, though looking back I should have been suspicious as to why my it had stayed almost consistent for a few years leading up to this (~165lbs). 

    Then I suffered a panic attack at work, which was completely out of left field. Then I had another one that same night, and more came down the pipe in the days after, leaving me exhausted and afraid or unable to sleep. I was terrified that I was losing control of my body and for the first time in my 21 years I found an ailment that couldn't just be ridden out like a cold or a stomach bug. I was desperate to have an answer, trying everything from cutting out coffee cold-turkey and slogging through the withdrawal, to thinking it could be some form of social anxiety or self-perception issue. I tried to live as normal and hoped that would help, and yet the attacks kept happening, and I was getting desperate enough to consider seeing a therapist to look for a mental cause. My mom helped me get a blood test to be sure that we had all bases covered, and celiac happened to be a thing that was tested because a relative of mine happened to have the disease, so it was worth a shot. 

    A week after that test I got a voicemail from my allergist saying that there was no doubt I had celiac. At first it was surreal, as that was the thing furthest from my mind at the time, and I stopped eating flat out. No last snacks or looking back. 

    I had a reason behind the problems affecting me, and within 3 days my anxiety lessened. A week later and I only had a singular mild moment of anxiety that was manageable, as opposed to being paralyzing. Now I'm 27 days gluten free, and 53 days since that first anxiety attack. I am getting back to the gym, learning to cook for myself, and am planning to start learning how to bake gluten free as soon as I give myself enough time to recover more. I still have the occasional weird feeling here and there, but comparing to how I felt in the beginning, I am certain that I am on track to feeling like I used to. 

    This whole thing might sound dramatic, but I am just happy to know what was causing my symptoms. In a world full of nasty diseases, I count myself lucky!

[Scott Adams]

Welcome to the forum and it's great to hear that you're recovering and getting your life back to normal. I also went through a few years of going to doctors, and also had panic attacks, trips to the emergency room, etc., so I also felt relieved to just figure out what was going on. 

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.):

 

 

[trents]

Welcome to the forum, @Jake R.!

First of all, kudus to the doc who ordered the test checking for celiac disease based on the family history of it. Many in the celiac population suffer for many years before getting a proper diagnosis and that despite have classic GI symptoms.

I will embed an article that you might find helpful in polishing your efforts to eat gluten free as there can be quite a learning curve involved. Some of this may be overkill unless you are a super sensitive celiac. Gluten is hidden in many food products where you would never expect it to be found and then there is the whole challenge of CC (Cross Contamination), particularly when dining out. 

 

But let me caution you about the falling of the "other shoe", so to speak, of finding out you have celiac disease. There is this great sense of relief at the front end of the experience in finally discovering what what wrong with you that was causing so much distress and discomfort. But then it begins to dawn on you that having celiac disease has a social cost to it. You can't just accept spontaneous invitations to go over to friends or family's homes for dinner or to go out to their favorite restaurants to eat with them. Some of them simply will not understand or believe that this is a real medical problem and that you must avoid all gluten in order to guard your health and be safe. You may begin to feel like a fifth wheel at social gatherings and it may cost you some friendships. I'll embed an article link on one person's commentary about this phenomenon. Just a heads up.

 

 

 

 

[Jake R.]

I did some reading from the link you posted and will definitely use the information provided to my advantage!

I feel very lucky with my current situation, as my family has been very supportive as well as my closer friend-group. I appreciate the welcome and the information!

[Russ H]

Approximately 1 in 3 adults have neurological symptoms on diagnosis. The mechanism and pathogenesis is unknown. These normally go into remission on a strict gluten-free diet. Common symptoms are anxiety, slow thinking, 'brain fog', memory problems and headaches. Although I think I have had coeliac disease in a mild form since childhood, my symptoms suddenly became much worse in later life. Along with the gastrointestinal symptoms and fatigue, I developed a tremendous sense of doom, anxiety and paranoia.

The diet can be awkward at first but becomes easier with time.

Edited October 15, 2024 by Russ H

[Wheatwacked]

While you remove gluten processed foods from your diet, there are vitamins and minerals added to those foods because the standard western diet has been deemed deficient by government agencies and so are required to be fortified.  Gluten free processed food are no usually fortified.  For every food you delete, make sure to find another source in you new diet.

Ones in particular to be aware of are Thiamine, B2, B3, B5, Choline, Folate, Iodine, vitamin D.

Virtually all new Celiac Disease diagnosed have deficient vitamin D and some research indicates that is the trigger. Possible Role of Vitamin D in Celiac Disease Onset

Try choosing vegetables low in omega 6 to reduce inflammation.  The standard American diet runs from 14:1to 20:1 (omega 6 to omega 3).  The healthy rate is >3:1.  This chart may help: Omega-3 and Omega-6 Fatty Acids in Vegetables:

 

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Folic acid supplementation was associated with increased risk of prostate cancer. By contrast, baseline dietary folate was inversely associated with prostate cancer risk. Folic Acid and Risk of Prostate Cancer: Results From a Randomized Clinical Trial