Celiac Disease Support Group

Celiac disease is an auto-immune disorder of the digestive system that occurs in genetically-predisposed individuals. It is characterised by damage or flattening to all or part of the villi lining the small intestine, which interferes with the absorption of nutrients. This damage is caused by eating anything with gluten (gliadin), a protein found in wheat, rye, and barley...

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First time getting "glutened"

mollieblue
mollieblue

Hi, my son was diagnosed with Celiac Disease in January, and has been gluten free since then.  It took about 11 weeks for him to show improvement on the diet.  He has still had occasional stomach pain and headaches, and has slightly low stamina, but has been pretty much back to normal.  9 days ago we attened a family event and I feared that there had been some cross contamination of food he ate.  He was sick with stomach pain and nausea that night, and has continued to be quite ill.  He has missed 6 days of school so far.  His symptoms included body aches (that went away after a few days), stomach pain and nausea, headaches, fatigue and malaise.  Is it normal for someone to respond to such a tiny amount of gluten (if he did get gluten) with symptoms lasting so long?  Can anyone share there expereinces with getting glutened? Any ideas about how long I can expect this to last?  This would be the first time he got glutened and we don't know what to expect or what is normal.  After having him be so sick for so long prior to diagnosis this is really freaking me out and making me worry.

nanny1611
nanny1611
Yes, it is normal to respond to even one crumb of gluten. Some people have reported getting sick just walking down the baking supplies aisle at the grocery and inhaling gluten flour. There have been reports that gluten can set a person back 2-3 months in their intestinal healing at the beginning of their gluten-free journey, but that doesn't mean it will take him that long to start feeling better. Regarding get-togethers, many of us take our own food to eat, or eat before attending the get-together. Of course, if you take your own food, it is a good idea to store it in an air-tight container if you put in a refrigerator with other gluten-containing foods. Another option is to take your own cooler and ice packs for storing the GF food.

Cross-contamination can take many forms, such as using a toaster that had been used for gluten bread, or using a cooking pot or pan that made a gluten product, or cooking GF pasta in water that was used to cook gluten pasta, or "double-dipping" a cooking utensil from gluten food to GF food. Many people cannot even use plates that held gluten food unless the plates were run through a dishwasher. Hand-washing dishes doesn't always clean well enough.

Hope that your son is beginning to feel better by now. Best wishes to you both.
Cap6
Cap6
So sorry to hear your son is struggling. Yes, a glutening can set you back, weeks or months. It will help for him to eat as much whole natural foods as possible and save the processed "treats" for when he is feeling better.
Also, something that I have discovered, a glutening symptom can change as the body heals. At 8 years into this I find that an accidental glutening does not make me as deathly ill as it did in the beginning. Where I used to be violently ill now I would have minor tummy upset. Which is good and bad! Good in that an "oops" won't set you months back. Bad in that you can get a false sense of being able to tolerate gluten and/or not knowing that you did ingest some.
Hope you son heals quickly