Dealing With Relapse

[jumpingjuniper]

Hi,

This is my first post on this board!

I was diagnosed with Celiac Disease almost ten years, and have been strictly gluten-free ever since. This year I moved overseas, and have been struggling with fatigue, depression, etc., and also just didn't look or feel healthy. More recently some of my other long-lost symptoms have re-appeared.

Anyway, it took a while, because my symptoms are so diffuse & I attributed a lot of the mood stuff to culture shock/adjustment, but I finally put two and two together and realized that I must have been ingesting gluten since I moved. I am super careful, but I think that the entirely new culture of food here has tripped me up.

I know that there's one family home that I eat at that has a high risk for cross-contamination - I just keep finding more and more sources of hidden gluten there, so I know that was definitely a big part of the problem. They are close family members, so it's a bit tricky socially, but I'll deal with that however I have to. I thought I had, but problems kept appearing in places I never even thought to look.

Aside from that, I'm not sure if I'm getting glutened anywhere else. I have been eliminating all processed foods, even those that are gluten-free according to my supermarket's very thorough labels.

I mostly just want some sympathy, honestly, and maybe some ideas. I'm feeling so lousy and it's hard to accomplish anything. I feel bummy all the time and have no energy.

The last time that I'm pretty sure that I ate gluten was two weeks ago on a holiday. Is it possible that I'm still feeling this lousy from that? How long do you usually feel bad? And do you think that maybe I'm feeling particularly bad now because I've probably been eating gluten intermittently for eight months and so this is a reflection of the cumulative effect of that? Or maybe my symptoms feel worse than usual simply because I'm more aware of them!

I have okay days and bad days, never good days, and they seem unpredictable. I wish I could analyze this more precisely, but the delayed and prolonged symptoms makes it so hard.

Anyway, this is a bit rambling, but I really wanted to share this in a community that can understand some of what I'm experiencing and maybe give me some hope or encouragement!

Cheers.

[Bubba's Mom]

I can see how such a big change in your life could get your system upset enough to think it wasn't gluten. Everybody is different, so it's hard to say if two weeks later you're feeling the effects of a glutening, or if you're still being cc by something? Two weeks wouldn't be unusual.

It's possible that your kitchen could have hidden gluten from whomever lived there before? Are you in a place that came furnished? If so, look for cc there too. Have you given everything a good scrub?

Also, if you are going places where people aren't careful about gluten you may be getting dosed repeatedly?

I feel so bad for you. Do a little detective work, and hopefully you can get back to feeling good.

[Strawberry-Jam]

Where'd you move to?

I found my symptoms relapsing after I moved from Colorado to Ireland.

[jumpingjuniper]

Hi,

Thanks for the replies.

Strawberry - I moved to Switzerland. What was your experience like in Ireland?

Bubba's Mom - our place was unfurnished, and we rarely have anything containing gluten in the house and my husband is careful when we do. I'll think about other sources of contamination, though, and maybe we're not being careful enough.

One thing I notice here is that there are crumbs everywhere. Tablecloths at coffee shops, etc. And when people eat those crunchy baguettes, the crumbs are pretty much projectiles! So that's something I've been really watching out for too.

[pain*in*my*gut]

Hi,

This is my first post on this board!

I was diagnosed with Celiac Disease almost ten years, and have been strictly gluten-free ever since. This year I moved overseas, and have been struggling with fatigue, depression, etc., and also just didn't look or feel healthy. More recently some of my other long-lost symptoms have re-appeared.

Anyway, it took a while, because my symptoms are so diffuse & I attributed a lot of the mood stuff to culture shock/adjustment, but I finally put two and two together and realized that I must have been ingesting gluten since I moved. I am super careful, but I think that the entirely new culture of food here has tripped me up.

I know that there's one family home that I eat at that has a high risk for cross-contamination - I just keep finding more and more sources of hidden gluten there, so I know that was definitely a big part of the problem. They are close family members, so it's a bit tricky socially, but I'll deal with that however I have to. I thought I had, but problems kept appearing in places I never even thought to look.

Aside from that, I'm not sure if I'm getting glutened anywhere else. I have been eliminating all processed foods, even those that are gluten-free according to my supermarket's very thorough labels.

I mostly just want some sympathy, honestly, and maybe some ideas. I'm feeling so lousy and it's hard to accomplish anything. I feel bummy all the time and have no energy.

The last time that I'm pretty sure that I ate gluten was two weeks ago on a holiday. Is it possible that I'm still feeling this lousy from that? How long do you usually feel bad? And do you think that maybe I'm feeling particularly bad now because I've probably been eating gluten intermittently for eight months and so this is a reflection of the cumulative effect of that? Or maybe my symptoms feel worse than usual simply because I'm more aware of them!

I have okay days and bad days, never good days, and they seem unpredictable. I wish I could analyze this more precisely, but the delayed and prolonged symptoms makes it so hard.

Anyway, this is a bit rambling, but I really wanted to share this in a community that can understand some of what I'm experiencing and maybe give me some hope or encouragement!

Cheers.

Have you had your thyroid checked? Sounds like low thyroid could be a possible cause of a lot of your symptoms. Hashimoto's thyroiditis is very common in those with Celiac.

[sandsurfgirl]

I think you need to get some hormone panels and make sure it's not something else causing your problems. Your situation is certainly ripe for glutening, but it's been going on awhile now and you don't want to miss something.

I was having lingering issues after nearly two years gluten free and it turns out I have an endocrine problem going on.

[Strawberry-Jam]

Hi,

Thanks for the replies.

Strawberry - I moved to Switzerland. What was your experience like in Ireland?

Bubba's Mom - our place was unfurnished, and we rarely have anything containing gluten in the house and my husband is careful when we do. I'll think about other sources of contamination, though, and maybe we're not being careful enough.

One thing I notice here is that there are crumbs everywhere. Tablecloths at coffee shops, etc. And when people eat those crunchy baguettes, the crumbs are pretty much projectiles! So that's something I've been really watching out for too.

Well, I came over to Ireland and went stricter on my diet, since I live alone in my flat that never sees any gluten, eat only whole foods or the occasional gluten-free packaged item... and then eventually I went on a few week-long elimination diets to try and root out lingering symptoms. But my symptoms kept getting worse.

I too notice crumbs everywhere--all over the tables at the hostel I stayed at (where I only ate boiled eggs and canned fruit), all over the checkout lines at grocery stores (so I now wash my groceries when I get home). It makes me so sad.

[jumpingjuniper]

Strawberry, I'm sorry you're dealing with this too. Are you feeling any better lately or still trying to find the culprit? Good call on washing everything, that is a good idea. Now that I think about how ubiquitous crumbs are here, I think I'm going to refrain from even ordering a coffee out for a while. I know coke is gluten-free here, so I could always order that if I'm out with friends.

To those who suggested hormone/thyroid panels - I was going to see my doc anyway, so I will ask about those. Based on my history, I strongly doubt that what is going on right now is due to anything but gluten, but better to check and know for sure!

A small update from me - I'm feeling a bit better these last few days, less exhausted and some colour is back in my face. We're dealing with a big mold problem and just got a HEPA filter, so I think that must be helping my overall well-being.

[Strawberry-Jam]

I'm still ugh. Lots of bloating & gas which started up only in the last 2 weeks, just as bad as when I first went gluten free. I am on glutamine & probiotics and am trying squash seeds which someone told me can kill nasties. My reflux goes up and down in the weirdest ways. sometimes I'm so sure I will have it and don't, and sometimes am so sure I won't and do. It's pretty much 24/7 now. I'm looking into eliminating all corn very strictly and all grains/nuts that could possibly be cc'd, as well as no processed food at all except rice cakes in emergencies (on the go & can't take much food).

also thinking about salicylate levels and other intolerances but don't have much hope... I haven't found a diet that allows me to feel better long enough to start testing anything.

interestingly, my fatigue and headaches are very much better & manageable (I started going on elimination diets in order to help my fatigue). My stomach is the unhappy one now.

[sandsurfgirl]

I can't imagine dealing with all those crumbs. Why are there crumbs all over the place? Is everyone just going nuts with crackers all day long? I mean I never see crumbs here at restaurants unless it's on a dirty table after someone ate their food.

My son and I are celiac but my husband and daughter had to go gluten free at home because of crumbs. My girl is 4 and she just gets her crumbs all over the place.

I hope you both figure out what's going on and feel better soon!