Introduction & Story

[Bunnehlvr]

Hello! I’m not 100% sure if I’m in the right forum room or not. I’m here because after years of testing and symptoms, I’ve recently been told by my doctor to follow a gluten free diet as I’m tested for celiac. I was tested before quitting gluten so hopefully that will cut down the chances of a false negative. I go to a low income clinic so test results can take some time to come back. 

I have always been sensitive to many different foods growing up. But bread and pasta were foods everyone in my family were sensitive to. We often broke out in rashes after consuming it but figured it was eczema. As most of my family has been diagnosed with that. The rashes are always concentrated on the joints only.

Fast forward to when I was 20 and I began to experience very severe heartburn. Around that time I also developed severe migraines. I gained weight rapidly. I have been depressed since I was a pre-teen but around this time the depression deepened. I also developed IBS symptoms. Once I got a job, something I was considerably behind my peers at doing because I felt too fatigued and sick to pursue, my brain fog became much much much more apparent. It’s so bad many bosses and co-workers have assumed I’m very mentally slow. For that reason I have always experienced isolation at work. I work in retail, if anyone is curious. I’ve been in danger of losing my job several times for making silly mistakes because my brain feels marooned on a tiny boat in the middle of thick fog on all sides. I just can’t think! Yet on the rare occasions the fog breaks I’ve been told I’m incredibly sharp and intelligent. Then the fog rolls over again.

So for 6 years I struggled forward with no care of my health. I consumed sugar although there is plenty of family history of diabetes. I heavily drank alcohol though it triggered migraines, gave me such bad bowel pain I’m pretty sure I passed blood sometimes, and gave me excruciating heartburn. I ate whatever I wanted whenever I wanted.

I’ve never been one to throw up unless I had a stomach bug. One morning in 2017 I woke up for work and suddenly threw up my asparagus from the previous night’s supper. Which I found weird but thought it was an one off thing. Until several months later I threw up cheese fries. I started throwing up regularly from there. 

Once I throw up a particular food I can’t eat it again. If I do, I will just throw it up again. Like my body decided it would reject it every time after that. Which I find weird. I have a whole list of items I can’t consume anymore now. Taco seasoning, cheese fries, asparagus, tomatoes, garlic, chocolate, and so much more. I enjoy eating it but then hours later I will violently throw it back up. It’s always violent. It’s literally my body forcing it out as fast as it can. I live in fear of the next time I will throw something up because that means I’ll have to stop eating it and my list of foods I can eat is pretty darn small now. 

After my father passed in March 2018 before his 60th birthday because of bad health, I got my wake up call. I went to the doctor that June. Immediately I was diagnosed with diabetes, hypotension, and depression. They put me on anti acid medication which has helped me so much. I stopped drinking alcohol completely. The last couple of years has just been undergoing tests. I have an amazing doctor who listens to me but there is just so many symptoms to shift through. I’ve had an endoscopy to check for ulcers and to make sure my esophagus was ok after all the vomiting. I’ve had tests done for my migraines. I’ve had more blood tests done than I can remember. (Though I kept a list in a journal of all of them in case I needed to reference them again at some point.) In a couple of weeks I will be undergoing a gastric emptying procedure because my food comes back up undigested a lot. Another reason it has taken time to test me for different things is although the low cost clinic I go to is amazing and the staff is phenomenal, by the sheer fact it’s a low cost clinic some tests are either not available or there’s a long waiting list. The gears turn very slow.

 

During the holidays my work put out a lot of wheat filled food in the breakroom, which I consumed a lot of because there were days I hurt too much from the fatigue and throwing up to walk to buy myself food. Every time after I ate it my brain fog got a lot worse and my joints would ache and then break out in rashes. Particularly my elbows. I mentioned this to my doctor and this is what ultimately lead to me going gluten free.

That is my journey up to now. It’s been incredibly isolating. My family pretty much eats whatever they want. They are sensitive to my diet for the most part, but it’s hard not to feel alone when I have to eat veggies and baked chicken while they eat homemade spaghetti. Going gluten free just adds a whole ‘nother layer to that. Many foods I was eating now I can’t because they contain gluten. 

My financial situation is getting really dire. A combination of getting low hours because I’m too slow or just not able to think properly, being too fatigued to care to do anything about it, and depression from all of that. One of my coworkers whom I enjoy talking to told me the other day that if he had to follow the diet I do his life would be over, he couldn’t go on without the pleasures of chocolate and alcohol. And that kind of made me feel way more depressed. I try to keep a positive attitude and focus on the foods I can still eat. 

During searching for gluten free resources I came across this site. I didn’t join at first because I felt like I had no right. After all I don’t know for certain yet if I have celiac or am gluten sensitive. Yet after my coworker’s comment I decided to join because I feel so incredibly alone. 

I am only on day 2 of going gluten free completely. I had to take time to adjust my diet to it. I am hoping by two weeks into it I will start to feel much better. 🤞🏻

I am sorry that ran way longer than I intended it to. Despite how long it is I condensed a lot. 

[GFinDC]

Hi B,

The usual diagnostic process is blood antibodies testing and then an endoscopy.  The endoscopy is often set for weeks to months after a positive blood test.  You need to be eating gluten for 2 weeks before the endoscopy.  Most times it is easier to stay on gluten until the endoscopy is done.

[trents]

Welcome to the forum, Bunnehlvr! You've come to the right place. Many come here not having been officially diagnosed with celiac disease and with stories not unlike your own. Let us know how we can help and encourage you. Don't be afraid to ask specific questions. 

Until such time as you can get testing done and an official diagnosis you should assume you have celiac disease. All the symptoms you describe fit it to a tee. Unfortunately, if you are eating gluten free before you are tested, it will likely invalidate the results. Many in your shoes are so ill they cannot continue to eat gluten while waiting for testing. The first stage of testing is done with blood work to test for celiac antibodies. Please talk to your doctors about having this done as soon as possible. Ask them to do a "full celiac panel." As little as one or two slices of bread per day can keep the disease active enough to give valid test results but may be a small enough quantity of gluten to help you feel a little better.

Yes, the social isolation that many celiacs fell because of having to eat different than family and friends is perhaps the hardest thing to deal with. Education of family and friends as to what Celiac Disease is about can help and also coaching them in a gentle, loving way with regard to how they can make some adjustments in what they cook when you eat with them is another piece of the adjustment process. At first it feels very awkward but with time this fades into the background and you will rediscover that the food component is not the main component in the love and joy shared by family members.

[Scott Adams]

 @Bunnehlvr Welcome to the forum!

I would not worry about what others think about your dietary choices. At this time in your life finding good health is the most important thing of all. 

Your story definitely sounds like, at the very least, you have gluten sensitivity, and more likely celiac disease and/or dermatitis herpetiforms (the skin manifestation of celiac disease). 

Hopefully you will not have to wait too long to get your results, and I am not sure, given your financial situation, if a biopsy would be possible to confirm the diagnosis. A high percentage of people with celiac disease can get diagnosed with blood test results alone, and this is becoming more common, especially for those who may not want, or can't get a biopsy.