Sensitivity Threshold

[Sandy1003]

Hi there,

I'm new to this, and only really have an unofficial diagnosis. As I'm a student and don't have insurance, I couldn't afford testing or the dreaded "pre-existing condition" on my record. However, my doctor felt confident that all of the problems I've been having for over 10 years were likely related to a gluten intollerance and recommended that I go on a gluten free diet. She told me that the diagnosis wouldn't really do anything for me since the treatment was the same, with or without the diagnosis.

I've been gluten free for about 6 weeks now. Before I went on the diet, I ate bread, pasta, and other gluten-containing items regularly. My symptoms included: constant intestinal cramps, going to the bathroom about 5-6 times a day, and itchy, watery blisters on my hands and ankles (which had been previously diagnosed as eczema dyshydrosis). Within 2 days of starting the diet, my body started acting normal. No pain, no running to the bathroom, and even my eczema went away (I haven't had clear hands in almost 10 years, so this was particularly amazing.)

However, I am now having a problem. Although I have ridded my entire house of anything with gluten in it, I have already had several instances where unknown cross-contamination was an issue. For example, the other day, I bought a bag of dried lentils and made some soup. I washed them before use, and there were no warnings on the bag. However, by the next day, the blisters were forming and my stomach was in knots. After calling the manufacturer and a 2 day investigation on their part, it turns out that the lentils were packaged on shared equipment with gluten containing products. It took 3 days for the intestinal problems and almost a week for the eczema to go away. It seems that the less gluten I eat, the more sensitive I become to any contamination.

So, is this normal when you go on a gluten free diet? Do you become more sensitive to lower thresholds of gluten? And if that is the case, is it really worth it? As I am still learning the rules, it seems like I have been running into this issue about once a week. Now, instead of having a consistent, mild to moderate reaction, I'm having more severe, longer lasting reactions. Has anyone else experienced this, and if so, does it get better?

Thanks!

[cassP]

YESSSSS it is totally the norm to become more sensitive to gluten after going gluten free. and yes- it IS worth it- u must remain gluten free. the thing is- maybe your noticeable symptoms are more sensitive since going gluten free.. but when it comes to villi damage- we cant monitor that everytime we eat gluten or by how bad our symptoms are. if you eat gluten, it will do damage on the inside- regardless of whether you feel more sensitive or desensitized.

i think the longer you're gluten free- the healthier your body is- and the more AWARE your immune system is of the gluten. when you and i used to eat gluten regularly- our body had been beaten down so much- that it was not always alerting us..

[dilettantesteph]

Yes, that happened to me too. At first all my problems were solved by removing bread and cheerios from my diet. Now it is much more complicated with almost no processed foods. Unfortunately that "processed in a facility that also processes..." statement is voluntary. You need to research everything. I add new foods one per week so that I can check for a reaction. On a positive note, now when I get glutened it only takes a day or two to recover when it used to take as long as 2 months. Also the effects aren't nearly as severe. Also I feel healthier than I have in 30 years. Be patient. It can take a long while to figure this all out.

[nora-n]

Yes, that is because of the "freshly activated T cells"

One needs to be gluten free for them to appear, and they even are doing research on them to devise a new celiac test, as only celiacs get them. The idea is that a suspected celiac has to eat gluten free for at least a week, then back on gluten, and afterwards they just need to take some blood and look for these freshly activated T cells.

[Skylark]

I've been at this for 6 years and my level of sensitivity changes. Sometimes I get into a period where I react to traces of gluten. Other times I can eat out without worrying too much about CC.

[Sandy1003]

Thanks, all! What you said makes sense. My boyfriend compared it to someone who drinks all the time, then doesn't drink for a while. The next time they drink, they will be more sensitive to the effects of alcohol.

It's just frustrating. I've made a very conscious effort to go gluten free, but the silly things that most people wouldn't ever think about (like crumbs in the toaster) seem to get me. Every time I've had a reaction since starting the diet, I get that nagging "what if I'm wrong?" feeling, even though I can find a traceable source after the fact. I had discovered that getting rid of gluten from my diet fixed the problems on my own before even seeing the doctor, and then brought up my concerns which she agreed with. Since I don't have an "official" diagnosis, I'm always concerned that people will think I'm some sort of hypochondriac, or that I'm going out of my way to eat gluten free if that is not the real issue. I'm glad to know that I'm not just crazy.

It seems the first year is a lot of trial and error, unfortunately.