I will not name names, but sometimes food companies use the ‘certified gluten free’ label, when they have no right to do so. They just slap it on there and nothing much happens to them. The GF certification company will ask to remove it. It really doesn’t matter for most people – the food is perfectly good, just not for a person with celiac disease.
I am glutened so badly that I am very unwell indeed. So unwell that I have been living in either the bathroom or else sleeping.
Celiacs suffer because hipster dieters think gluten is the devil and packs weight on them. Calorie surplus puts weight on people, not gluten. What it does do to a celiac is:
- Weight loss
- Nausea …..then we get to the really fun stuff
- Anemia, usually from iron deficiency
- Loss of bone density (osteoporosis) or softening of bone (osteomalacia)
- Itchy, blistery skin rash (dermatitis herpetiformis)
- Mouth ulcers
- Headaches and fatigue
- Nervous system injury, including numbness and tingling in the feet and hands, possible problems with balance, and cognitive impairment
- Joint pain
- Reduced functioning of the spleen (hyposplenism)
This is why my diet is so limited – I eat generally only whole foods because I can’t trust companies to tell the truth – the canary in the cage which is my celiac immune system, tells me exactly whether or not there is gluten in there. Of course if I have more than one new food in a day, it is hard to tell which one did the damage, impossible in fact. So I lose both of them. For instance, say I ate both raisins and some pre-packaged spice mix, and got sick, I can’t risk either of those things again.
Combine that with my current impaired ability to taste, and lack of appetite, and we have a problem.
I force myself to eat more, my weight is stable, but not being able to even get dressed today or do anything I needed and wanted to do, is not ok.
Gluten is a big deal to celiacs. It is meaningless to people who don’t have the autoimmune disease. There is no cure. The management is simply ‘don’t eat gluten’. That is it. Dapsone for the rash, a drug commonly used for leprosy, is a brutal drug, and some people – me included, cannot tolerate it. There is nothing I can do, except try keep water down, cool off the rash and sit here crying in pain.
Food companies need to be held accountable. Worse still, drug companies do not need to declare gluten in medications. I literally have no idea if I am going to be made unwell if I take a drug. Lists are kept of probably safe medications, but still, it is not assured nor totally safe. The gluten tends to be in the binding of the medication. Senator Richard Blumenthal in 2019 tried to get the Gluten in Medicine Disclosure Act passed. Nothing happened. I can’t even risk, say a tylenol for a headache. Lists say certain brands are safe. I took a risk with one of them, and am so unwell. So who knows! Tylenol, the dried fruit, the spice mix…..I do know this….gluten was in something it should not have been in, and I am very very unwell.