Complexities in second and third autoimmune disorders attached to ceoliac.

[Karen Cowling]

Hi all fellow coeliacs.

I was diagnosed with coeliac as a young child. I am now 62.

My mother had coeliac my sister has coeliac and my brother also.

My mother went through a lot of struggles due to coeliac being there was not much understanding for her as a child and adult there were no gluten-free foods except meat and veg and a hard rusk biscuit made from rice. 

As children, we faced the same dilemma and did not have any idea about cross-contamination foods and or hidden gluten in foods like lollies, sausages, ice cream and so much more.

Now thanks to our multicultural society we have a lot more choices with different flours and natural healthy products.

My mother due to ceoliac had to have a full hysterectomy at the age of 22 due to hemophiliac from birth. I was 3mths premature due to my mother's poor health.  I watched my mother go through so many health issues and then later in life develop thyroid issues, neuropathy in the feet and hands in pain, heart issues, and cirrhosis of the organs internally and on the skin externally causing so much pain she could not button her shirt, as well as diabetes 2.

There needs to be more research into the complexities of the other autoimmune disorders associated with coeliac and disability support needs to be considered to support people as their health mobility and energy is so greatly impacted.

I am unsure if one fully recovers once some damage has been done.

I am not sure how families can cover the cost of food when many need to eat gluten-free. 

I was not able to have much of a strict diet when I was younger however as an adult I do.

I have been out to gluten-free restaurants thinking I was safe to only find the sauce used had gluten in it.

Even going to a friend's home to eat is not safe as knowing what is gluten-free can be difficult in the hidden products, so it is difficult to be 100 percent gluten-free.

Most of the gluten-free processed products are not healthy choices and are full of sugar creating weight and diabetes 2.

At the age of 62, I now have developed hashimotoes from Ceoliac, the hashimotes impact my heart and breathing and I now have sleep apnea. 

Searching for gluten-free healthy organic products is not easy and is very expensive.

GP does not know much about the complexities of coeliac and if you go to a naturopath you get told you need to detox and clean your gut and can overcome coeliac so no one really gets it. 

The journey in finding healthy options and specialists re coeliacs in the medical system is so difficult to navigate good health being a coeliac.

Research needs to be completed on the longevity and complications of the aged from coeliac.

Medical treatments should be assessable and low cost across the board as well as healthy food options cheaper or vouches worldwide be accessible.

A travel guidebook would also be useful for coeliacs.

[Scott Adams]

Thank you for sharing your story—it really highlights the lifelong challenges of living with celiac disease, especially during a time when gluten-free options were nearly nonexistent. It’s heartbreaking to hear about your mother’s struggles and the severe health complications she faced, and I completely agree that more research is needed into the long-term effects of celiac and its associated autoimmune disorders like Hashimoto’s.

The cost and availability of healthy, truly gluten-free foods remain a huge issue, and navigating hidden gluten and cross-contamination can make social situations and even eating out incredibly stressful. I also share your frustration with the lack of understanding among some medical professionals and the difficulty in finding specialists who truly get it.

Your point about the need for affordable medical treatments, food vouchers, and better resources like travel guides for celiacs is spot on. Hopefully, as awareness grows, there will be more support for people facing these challenges. Thank you for raising such important issues!

You should find a new GP in the New Year, because you cannot cure celiac disease by detoxing/cleaning your gut, and there is a lot of junk science out there which makes claims like this one.