I was diagnosed with GCA in August of 2023 after suspecting that I was experiencing some level of gluten intolerance, rashes, digestive irregularities, anemia, etc. I cut out the gluten and the obvious signs faded but there was an underlying problem that manifested in high temps, malaise, and further anemia and inflammation all determined via bloodwork. I ended up in the hospital for three days with a hemoglobin level of 740. The diagnosis was derived from my personal Doc, a vascular surgeon and a rheumatologist. I do wonder about the interplay of gluten intolerance/celiac disease or whatever it is and GCA.
I am closing in on 75 but still hike with my Australian Shepherd, that’s Bart, every other day for 3.5 miles through the woods up and down. Over roots, etc. I also tend to five acres, do all the mowing, tree trimming, etc. myself. I have 60 blueberry bushes, 25 fruit trees, a big garden, etc. Essentially I have created my own blue zone. I say this not to brag but more to demonstrate how surprised I am to be in this situation and wonder what lies ahead as I read some of these challenging stories that have opened my eyes to many more possible outcomes. I’m not ordinarily this long winded but that’s more an indication of the value I perceive this forum holds. Thank you for listening. BartsDad.
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At least in the U.S. most of the gluten free products I’ve come across are not satisfying. I do miss my crusty bread. I cheated a tiny bit over the holidays and my body let me know. Although I’ve never been tested I’m pretty convinced it’s an issue for me.
Thank you for the information in your bio. Were any other tests/investigations carried out besides blood work that led to your GCA diagnosis? Did you have any cranial issues such as headache, visual disturbance….? Was Polymyalgia Rheumatica (PMR) ever mentioned? The two diseases are closely linked.
Addendum: I am compelled to mention your high levels of activity which most would not be able to tolerate without a return of symptoms. Our valued experts will be along with their own comments so please come back and read what they have to say.
Thank you for that link. That’s a rabbit hole I was glad to have entered. There are so many facets of this that make me curious. I had a very minor case of Covid three years ago at the beginning of that mess. Several months later, in the process of my annual physical, my bloodwork showed some abnormal results for the first time in my life. It got progressively more pronounced over several years so I have to wonder if there is a connection.
As for tests, I had an ultra sound that showed the inflammation distinctly coming up to the base of my neck and resulted in the first clinical suggestion that GCA was a suspect. That was in the emergency room after having pretty consistent 102/103 temps. Fahrenheit of course. I had lots of other tests to eliminate other thing primarily.
As for the activity level I did not maintain that while I was in the throes of this with high inflammatory markers and very low hemoglobin counts, etc. Much of that is close to, or approaching normal and I’m back at it with determination. I’m moving forward and my body has to follow. I do give recuperation its due however. That’s equally important.
Though it has seemed at times that this came on suddenly I do realize that I’ve been feeling it for some time but just put it on “ignore”. That doesnt work forever. Thanks again for your time and information.
You’re welcome. I note that, like many others here, you have acquired the ‘bug’ that compels you to find out as much as you can about your own condition. Knowledge is empowering and one of the ways in which patients are able to gain some control and confidence to ask questions of those who are managing their illness, ie. doctors. Some professionals appreciate patients’ involvement and others feel somewhat threatened, it seems. I sense that you aren’t easily intimidated.
While there is no definitive cause of either PMR and GCA the following have been mentioned: accident, injury, trauma, emotional stress, illness and certainly a virus which would link with your Covid experience. Autoimmune disease may appear sooner or later and in some cases after months or years.
PMR and GCA have to be treated with respect and listening to one’s body is a really important aspect and explained in DorsetLady’s link.
Best of luck as you go forward on your journey to remission. 🤞
PS. Do read this posted by WeAreAllMutants and to be found in FAQs:
Although you seem to have most things under control, maybe have a read of this and take heed of the links on pacing yourself as you refer to fatigue in your bio -
Thank you for all of that. I will get back to you after I dig into the links. One of my guiding notions in life is “know what you know and know what you don’t know”. I’m way down the curve in this area.
My experience of GCA is that once I was off the high doses of pred I was able to exercise pretty much as normal . (My normal). As well as this took lots of rests - but I always did that anyway. However, many people have a very different experience and find activity levels severely curtailed. There is also a possibility of PMR developing and that does restrict activity.
Things were more difficult when I was on lower levels of pred because of adrenal tiredness so I was able to do less.
In summary, everyone is individual but to get the best experience, monitor your activity levels and symptoms, make sure you get a lot of rest, don't try and taper too quickly. X
When my PMR symptoms started I also had a problem with an itchy rash that came and went and always in the same places. Eventually it dawned on me that it was better in the UK where I was eating low carb in an attempt to lose weight and returned when I was in Italy where we had a flat for skiing purposes in winter and also used it on the way to Lake Garda in summer. Well - you can't be here and not eat pizza and pasta can you!!!
I assumed that it was gluten and started to eat gluten-free and joined a local group for coeliac patients. In the UK some gluten-free products were made with a flour preparation from a company called Juvela and my g/f friends used it a lot - you really struggled to realise it wasn't "proper" bread. And I realised that THAT caused the rash too!
Some further experimentation suggested that I had an allergy to something in commercial wheat starch - the Juvela product was chemically treated wheat starch that removed the gluten. I found I could eat their products not made with this stuff - totally wheat-free like all g/f products in the EU. But I could also eat foods made with spelt and kamut which are ancient wheat varieties and pure rye, all gluten-containing - things that are common in bakeries here in northern Italy.
The local gut specialist said he thought there was no point in suffering eating wheat to get a fixed diagnosis of whether it was coeliac or not - I knew how to manage it and the only positive would be prescribed and paid for g/f products. At the time they were awful and the free-from aisle in the supermarkets was far better. His theory was that the body's reaction to the offending substance was to create "leaky gut" syndrome which led to something ending up the other side of the gut wall and triggering an autoimmune response. Which could be anything depending on what tissues were attacked but included the PMR/GCA spectrum.
More recently, on high doses of pred I could eat small amounts of a decent crust of bread and even more recently being on Actemra has allowed me to eat larger amounts. However, I need to remain reasonably low carb to avoid pred-related weight gain ...
I was diagnosed with PMR (not GCA) in 2019. At the time I was eating a very low carb diet. In 2020, with covid baking, I started eating bread and cookies. In 2021 I started having extreme GI symptoms and ended up with celiac and colitis. They say once you have one autoimmune condition it’s very common to develop more of them.
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