Celiac Disease Support Group

Maybe he ate something with hidden gluten in it.

I ate some Toffutti ice cream once. It is dairy free and does not list any gluten ingredients at all. I was terribly ill for days. If you call the company they will not say it is gluten free.....

I hope you get it figured out. Oleander

Thanks Oleander... I did check with the company of the food in question (OreIda plain frenchfries that we baked just for something different) and it said the product was gluten free, but it could be that there is a possiblity of cross contamination. I will just have to make them myself I guess. Now, today his symptoms are lessened again.
On a different issue with Celiacs, do you have problems with pain in the lower body? Sometimes my husband (Steven) will c/o horrible pain from the waist on down to his toes. And to make things more complex, he has a back injury (L4L5) from 2006 that causes him all sorts of problems. But as we go along here in researching and learning, perhaps some of these areas of pain are more from the Celiacs than from the back injury, We will just keep moving forward.

I do not know much about the pain but I do have tingling in my feet and calves when I eat gluten so it is probably possible.

Also I have been told you can react to foods 3 days after eating them. So look back at what he has eaten as far as 3 to 4 days prior to his symptoms. Like I said I am new to this. I have learned alot on this board.

Oleander

So you know what food specifically triggered the reaction? In that case I usually suspect contamination.

I have had other issues after going off gluten too. When I first went off it all my symptoms vanished, but many months later I was having the same types of reactions to all kinds of foods.

Some say that we are prone to developing intolerance to foods that are eaten often, and if he is already gluten intolerant then he may be vulnerable to that kind of thing. People who cut out a food like gluten are also more likely to eat too much of other foods, like corn or potato.

If he is having reactions to more than one food, or you can't pin it down, you might want to try some rotation or elimination diets. Rotation diets help decrease the chances of becoming intolerant to a food because you don't rely too heavily on any one thing, and elimination diets involve removing many foods (that commonly trigger symptoms for other people), and then slowly reintroducing them to see which one causes problems.

It can be alot of work, but I think it's worth it when you are sick and want to feel better!

WOW, we are learning so much just in this group! Oleaner, thanks for your input on the fact that the increased symptoms are not necessarily triggered by foods eaten that day... that makes us look back a few days and research more. He almost needs to keep a food diary for a while til we establish a pattern. Maybe that would help.
And thanks to you Seeker Sue for your knowledge of his possible need for elimination diet to figure this out. This sounds very complex, but like you said, worth it to feel like a human being again.
Another question for you experienced ones; do /did you have days where you feel/felt so yucky that it seems/seemed hopeless, and find/found yourself feeling quite depressed? Steven has been struggling with that. And I, being the mental health nurse want to help him to cope with these changes that have affected his life , thus affecting our life together. I try to keep him engaged in daily living activities and staying involved, but he has not felt well physically, so that is difficult to do. Any input would be greatly appreciated!

I felt great the first month off gluten. I had a gluten reaction and became very depressed. I notice it knocks me in the dirt when I have a reaction.

I have had alot going on. Lost my Father this year after a long illness, I have skin cancer, kids left home ( Hurray), but much change. Found out I have 2 autoimmune disorders. No dairy and no gluten allowed. SOOOO it has been a rough year. I make sure to eat right. walk everyday, try to do things I like rather than just work work work...... I have a stressful job.
I play music and try to have some fun.

Oleander

Yes, I have definitely been depressed about it at times. It can be exhausting to make so many changes, especially when everything seems experimental and you don't know what will work. I tend to feel elated when I have a success with something (like when I went off gluten and discovered alot of my symptoms going away), and defeated when pain or symptoms return.

Frozen french fries are usually gf but they are usually coated with substance that has gluten. I stick to homemade or Oreidas. Also maybe your husband wasn't gluten--maybe it was some type of intestinal bug going around. Sometimes it is so hard for me to notice the difference. It also takes a while to heal and until you heal you are sensitive. Good luck and assure him he will get better if he remains gluten free.

Oh and about the depression. Yes we grieve the food we can no longer have. I have been gf for 5 1/2 years now. At first, I would get sad and angry at times. This is all the natural feeling we go through. It does get better. I usually humor myself with a Hershey bar when I am upset because I can't eat what others are eating--especially away from home. There is alot of good food we can still have.He is lucky to have your help and understanding.

Just a comment about the back injury and pain in the lower body; back injuries can cause nerve pain in the extremities. Sciatica is a classic example where the pain tends to radiating down one or both legs. But anything affecting the spine can cause radiating pain down the legs and out the arms. This can include hip pain and knee and ankle pain, or just a general throbing pain. Many people do get some relief from general back pain when they go gluten free.