I have celiac disease. It is not an allergy, it is a very serious autoimmune disease which is triggered by consumption of gluten, which contains the glycoprotein gliadin. “Sensitive” doesn’t do due justice to the blistering rash that itches worse than any poison ivy, spreads across skin, mirroring patterns of red angry blisters, that pop and bleed. “Sensitive” is not how I would describe the cancer caused by the damage from celiac disease which killed a young mother in my support group. “Sensitive” is not how I would describe those that end up with lymphoma caused by celiac, or whose livers stop working properly, or who get neuro symptoms when the celiac attacks their nervous systems and brains. Sensitive doesn’t do justice to the horrendous vomiting, nausea and diarrhea caused by exposure to trace gluten.
The legal limit of gluten in a ‘gluten free’ labelled food is 20ppm. I react to anything over 10ppm. The GFCO, who certifies some products has a limit of 10ppm, and the celiac association, 5 parts per million. When I say react, my body goes into something like the symptoms of extreme food poisoning, I break out in the classic dermatitis herpeformis celiac rash, which leaves me unable to sleep or get shoes on, as I get it particularly badly on my feet and legs.
Celiac disease is extremely damaging, life threatening and painful. Avoiding gluten is very difficult. A lot of foods are mislabeled gluten free. hSometimes even reputable companies such as Canyon Bakehouse, which only sells GF bread products, has a recall due to gluten contamination. In short, sometimes it is impossible not to get sick.
In recent months I have been glutened by vegan meat substitute, and a coconut sugar which used to be certified, and though the label on the online store said ‘gluten free’ is no longer gluten free at all. I ended up very unwell, and unable to tolerate foods I can usually manage, such as cassava pasta and rice.
At my most unwell I have to go no grain at all. No processed foods. I end up eating soft purreed vegetables and fruit. People with celiac are so sensitive to the gluten, their bodies treat it like poison. I can’t even share pans which have been used for glutenous products.
Cut your sandwich on the cutting board, then use it to prepare my food? I would get so sick I would not be able to function or leave the house. The damage caused could lead to cancer down the line and kill me.
In the shelter there was no safe gluten free food. When I mentioned ‘cross contamination’ I was treated like a princessy demanding little brat and told that ‘cross contamination’ was only for ‘like meat and dairy’. I was told to pick the breading off and the croutons off dishes. This would make me so unwell – would make any celiac so unwell, dangerously unwell.
Watching 60 Days In last night, a volunteer with celiac disease was not fed adequately. She told them about her celiac disease and they still gave her noodles, bread, crackers, meatloaf with gluten ingredients. She starved and became very unwell. With no other way of getting food, she was starved. Denied food and ridiculed not only by prison staff, but also by fellow volunteers who told her to ‘stop bitching’. She was hungry. She was unwell. She needed help and sympathy and only got ridicule.
We all know why this is – the Gweneth Paltrows of this world who eat GF because they think they will be skinnier that way, and ‘cheat’ with glutenous stuff make it seem like those of us with an illness are just overreacting, being difficult. After all why can’t we just stop fussing and eat a little bit. The skin rash on my white pale skin looks angry and red. On black skin the rash looks different. Trust me, this poor woman was not fussing nearly enough. She must have been in agony.
There is no medication, no cure. The rash can be brought down by the same drug they use for leprosy, but it is a brutal drug, and I, like a lot of people, cannot tolerate it. It can lead to the blood not being able to carry oxygen. It is not a long term solution, it is firefighting for people who are absolutely tortured by the rash. Right now I am tortured by the rash to the point of distraction.
Once my immune system is irritated it takes a long time to calm it down. It is not an on off switch.
…But not nearly as long a time as my temper when I see fellow celiac starved in a jail cell and mocked for her serious illness. No one cared. No one.