Not doing well

[kam00096]

I haven't posted on here for a while but I'm having a really difficult patch and guess I'm wondering if others have similar experiences. Basically I had two positive blood tests for celiac but no actual diagnosis (it's a long story!). I'm pretty strictly gluten free and some symptoms had improved a bit but I've still been having ongoing issues with night sweats, swollen lymph nodes etc. 

About 10 days ago I stupidly ate something with a small amount of barley in it. I expected  some sort of reaction but for the first few days after I felt fine. Then around 4 days after I started with stomach problems which are just getting worse. The last few days I've had absolutely horrendous nausea, reflux, dizziness and other GI issues. I've also lost a bit of weight which makes no sense given my diet recently. It basically feels like my stomach shuts down and stops working. I'm back to having all the symptoms I had before I went gluten free but I don't see how this could still be from a glutening 10 days ago! Also it's weird that it's getting worse not better. 

My diet hasn't been great over the last few weeks and I have eaten out a couple of times but I don't think I've been glutened anywhere else.

I guess I'm just worried that this is all still ongoing or getting worse despite being gluten free which makes me think there's something else causing it. The docs have pretty much washed their hands of me so I don't know what to do next. This was always the cycle I had before going gluten free - I'd be ok(ish) for a couple of months then feel hellish for a couple of months So I'm terrified that it's starting again and I'll be ill for ages now. The nausea's so bad it makes it hard to function normally and when the dizziness kicks in I can't drive. And I am really worried that the docs have missed something serious. 

[Ennis-TX]

The delayed reaction could be many things, I would say it was your antibodies slowly ramping up then peaking out. Odd though with the delay did you get constipated? How regular are you? And I am also willing to bet those eating out times had some factor in it.    I started eating small, very small doses of gluten in some contaminated hemp protein...took several days for it to accumulate to the point of the fog, loose stools, etc. and is going back down since I got off it, but is now hitting with the numbness, loss of feeling, and constipation of the aftermath.

Play it safe for a few weeks go back to a simple soup with just boiled meets,  veggies, and perhaps potatoes if you eat carbs. I went to a bone broth, and veggie soup myself and been snacking on nuts and seeds.

[kam00096]

Thanks for the reply. I was really constipated for a few days last week before all the nausea started. Happily it all seems to have settled and I haven't had any more horrendous nausea for the last two days, which is a massive relief as it used to go on for weeks and weeks and I was worried it was starting up again. Still having a few 'boaty' spells but again I can handle it if it's not constant! 

[Victoria1234]

1 hour ago, kam00096 said:

Thanks for the reply. I was really constipated for a few days last week before all the nausea started. Happily it all seems to have settled and I haven't had any more horrendous nausea for the last two days, which is a massive relief as it used to go on for weeks and weeks and I was worried it was starting up again. Still having a few 'boaty' spells but again I can handle it if it's not constant! 

You might decide for awhile not to eat out at all..... check the Find Me gluten-free app and if you must, go only to places well reviewed by celiacs. You've got to take care of yourself! 

[cyclinglady]

You might have had one exposure with the barley and then got zapped by eating out.  This behavior could encourage  your antibodies to start building.  When do they  stop?  Everyone is different, but mine (as measured by my GI) last for months!  

For now, stop eating out.  Read all labels and stick with easy-to-digest foods (processed as little as possible) until your symptoms dissipate.  

Hope you fell better soon.  

[LookingforAnswers15]

Hi,  I would recommend to also stop eating out. We can never be sure how the food is prepared unfortunately and also, all of us with celiac disease do not get a pass if we eat something accidentally that has gluten in it. We end up dealing with various symptoms, which are scary and make us worry of other horrible things that could be wrong with us, which also does not help our recovery. I have always been so careful about eating gluten-free, did not eat out, but my test results came back horrific. I am suspecting that some of the gluten-free products were not really gluten-free products although they were declared as such. 

My recommendations: eat bone broth soup, stay away from nightshades, drink lots of fluid, and do an allergy test of other ingredients and dairy (it can help speed up your recovery process). Dairy, eggs, corn, etc., can be a problem for recovering Celiacs but they can hopefully be reintroduced later.

If at all possible, prepare your own meals and stay away even from gluten-free products. 

[plumbago]

I would want to know a little bit about you first. Are you male or female? Age? A little more background in general.

 

Hope you feel better soon.

Plumbago

[kam00096]

You guys are absolutely right. I rarely eat out these days but a couple of big family events meant I kind of had to. I'm back to being super careful and taking it easy again now. Still dealing with feeling boaty and shaky (plus the after effects of too much pepto bismal) but at least it's nowhere near as bad as it used to be before I went gluten free. 

[at1992]

On 6/27/2017 at 7:16 PM, kam00096 said:

I haven't posted on here for a while but I'm having a really difficult patch and guess I'm wondering if others have similar experiences. Basically I had two positive blood tests for celiac but no actual diagnosis (it's a long story!). I'm pretty strictly gluten free and some symptoms had improved a bit but I've still been having ongoing issues with night sweats, swollen lymph nodes etc. 

About 10 days ago I stupidly ate something with a small amount of barley in it. I expected  some sort of reaction but for the first few days after I felt fine. Then around 4 days after I started with stomach problems which are just getting worse. The last few days I've had absolutely horrendous nausea, reflux, dizziness and other GI issues. I've also lost a bit of weight which makes no sense given my diet recently. It basically feels like my stomach shuts down and stops working. I'm back to having all the symptoms I had before I went gluten free but I don't see how this could still be from a glutening 10 days ago! Also it's weird that it's getting worse not better. 

My diet hasn't been great over the last few weeks and I have eaten out a couple of times but I don't think I've been glutened anywhere else.

I guess I'm just worried that this is all still ongoing or getting worse despite being gluten free which makes me think there's something else causing it. The docs have pretty much washed their hands of me so I don't know what to do next. This was always the cycle I had before going gluten free - I'd be ok(ish) for a couple of months then feel hellish for a couple of months So I'm terrified that it's starting again and I'll be ill for ages now. The nausea's so bad it makes it hard to function normally and when the dizziness kicks in I can't drive. And I am really worried that the docs have missed something serious. 

 

First off, you're right. Something is not right in your body, whether or not the doctors have figured it out. During my past two gluten challenges, it has taken about 7-15 days to get symptoms from gluten. Since celiac is a type 4 hypersensitivity reaction, symptoms can be delayed for days to weeks to maybe even months! 

Regarding your other constitutional symptoms, those don't sound too great... I'm currently in medical school (and though definitely NOT a doctor), they tell us to look out for "red flag" symptoms like night sweats, lymphadenopathy, weight loss, and fatigue, etc... These symptoms typically mean there's something deeper and more systemic happening in the body, and warrant further investigation. Though many of these can be attributed to gluten sensitivity, you might want to insist that a doctor does more labwork just to cover the bases. 

[kam00096]

On 09/08/2017 at 6:51 PM, at1992 said:

First off, you're right. Something is not right in your body, whether or not the doctors have figured it out. During my past two gluten challenges, it has taken about 7-15 days to get symptoms from gluten. Since celiac is a type 4 hypersensitivity reaction, symptoms can be delayed for days to weeks to maybe even months! 

Regarding your other constitutional symptoms, those don't sound too great... I'm currently in medical school (and though definitely NOT a doctor), they tell us to look out for "red flag" symptoms like night sweats, lymphadenopathy, weight loss, and fatigue, etc... These symptoms typically mean there's something deeper and more systemic happening in the body, and warrant further investigation. Though many of these can be attributed to gluten sensitivity, you might want to insist that a doctor does more labwork just to cover the bases. 

Thanks for this reply. I've been completely freaked out about it being something more serious but I've had loads of bloods done, plus ultrasounds of the lymph nodes and everything has come back completely fine. Is there anything else you think I should be pushing for? 

[at1992]

On 8/12/2017 at 8:26 PM, kam00096 said:

Thanks for this reply. I've been completely freaked out about it being something more serious but I've had loads of bloods done, plus ultrasounds of the lymph nodes and everything has come back completely fine. Is there anything else you think I should be pushing for? 

 

Ok good! I'm glad that you have gotten those things done. I know that's incredibly frustrating to have "normal" results come back. Hmm... honestly nothing comes to mind at the moment. I know that when I'm getting weird mystery illness stuff like this, I give myself a time-limit of when I will pursue more answers. For example... "In 5 weeks, if I'm still feeling this bad or I have gotten worse, I will make an appointment for the doctor." And then I'll put it in my calendar to make myself go. It helps to give me a little peace of mind and just let my body do its thing instead of analyzing myself so much every day