Are there levels of this disease.

[Joyce Lutz]

I was just diagnosed with celiac the end of November 2021. I was just wondering if there was different levels of tolerances. Like how bad do I have it? I have been eating all non gluten foods but my family still has gluten foods. How can you tell if you are bothered physically by this?

[trents]

Welcome to the forum, joyce!

I think your question is one that most new celiacs ask as they are trying to gauge the impact that celiac disease will have on their lives. It certainly is an inconvenient disease to have, isn't it!

First of all, celiacs do vary somewhat in their sensitivity to gluten. Some can ingest very small amounts of gluten seemingly without a problem. Others will have a severe reaction when ingesting just a trace amount of gluten. When I say "small amounts" I mean cross contamination such as you might find in a can of tree nuts that says on the label, "Produced on the same equipment used to process wheat, soy, core, etc." I'm not talking about a small wheat flour biscuit. There are other celiacs who cannot tolerate that and will react to even a cosmetic containing wheat that is applied to their skin or gluten residue in a cast iron skillet that has been thoroughly washed or baking with wheat flour even if you don't eat the finished product.

Having said that, most of us find that we become less tolerant of gluten the longer we are off it. When you are eating gluten regularly your body is forced to try to cope with it and such that the reactions are muted. But once you go off gluten your body starts to lose the ability to tolerate the poison your were eating and your reactions will usually be more severe.

The other thing to realize is that even though ingesting a minor amount of gluten may not seem to produce physical discomfort, that does not necessarily equate to no inflammation taking place in the lining of your small bowel.

If you are still cooking gluten containing foods for family members or using the same cookware, bowls, plates, etc. for making gluten foods and non gluten foods there is more chance of cross contamination or even eating gluten containing food by mistake - like I did a couple of years ago when my wife made some wheat biscuits for herself and some gluten free ones for me that looked almost identical. Wow did I get sick!

What kind of symptoms do you have when you get "glutened." You had asked what kind of physical symptoms you might have if you got some gluten inadvertently. What kind of symptoms did you have that lead up to your diagnosis?

How bad do you have it? Difficult question to answer and I'm not sure what you mean by the question. Are you asking how sensitive am I to gluten or are you asking how much damage has been done to your  body before getting diagnosed? You either have celiac disease or you don't. There are not degrees of the disease but there are degrees of sensitivity to gluten among celiacs. The two ideas aren't the same.

In your case I think it would be important to get a follow-up blood test done to check for antibodies in six months to a year. That will tell you if you are continuing to get gluten in your diet or if you've been successfully avoiding it.

Sorry for such a long post.

Edited January 11, 2022 by trents

[Scott Adams]

Welcome to the forum. Since you're recently diagnosed, this article may also be helpful: