Been On The Diet, But Still Feeling Sick.

[OxymormonWife]

I've been diagnosed with several different illnesses following Celiac's, but even through treating all of those as best as possible, and even doing the diet, there has been very little change in my symptoms. Now, even, I am wondering if maybe there is still an illness that is.. hiding, I suppose? I've done the horrible deed of looking up what it could be over the internet, and all I can come up with is that it may be Lupus. Because I have Celiac's, a few symptoms of Lupus, and a mother with Lupus, I can't help but wonder. Are my chances of having Lupus higher because of my family history of it mixed with the Celiac's? Or is it just presumptuous of me to assume it may be that?

[cyberprof]

I've been diagnosed with several different illnesses following Celiac's, but even through treating all of those as best as possible, and even doing the diet, there has been very little change in my symptoms. Now, even, I am wondering if maybe there is still an illness that is.. hiding, I suppose? I've done the horrible deed of looking up what it could be over the internet, and all I can come up with is that it may be Lupus. Because I have Celiac's, a few symptoms of Lupus, and a mother with Lupus, I can't help but wonder. Are my chances of having Lupus higher because of my family history of it mixed with the Celiac's? Or is it just presumptuous of me to assume it may be that?

Hi Oxy, welcome to the forum.

If you've just been gluten-free for a short time, you may just need to be truly gluten-free for a bit longer, as it takes a while to get used to it and make sure that the gluten is gone. Or you may need to be stricter.

But that being said, autoimmune diseases like celiac and lupus do tend to run together. We say here that if you get one like celiac, you have a higher chance of getting another like thyroid or diabetes or rhuematoid arthritis. And you even have a higher risk because of family history. So it would be up to you to decide if you want to talk to your doctor about it now or give it some time to see if you feel better.

Good luck and hope to "see" you around: This is a good place for info.

[OxymormonWife]

Hi Oxy, welcome to the forum.

If you've just been gluten-free for a short time, you may just need to be truly gluten-free for a bit longer, as it takes a while to get used to it and make sure that the gluten is gone. Or you may need to be stricter.

But that being said, autoimmune diseases like celiac and lupus do tend to run together. We say here that if you get one like celiac, you have a higher chance of getting another like thyroid or diabetes or rhuematoid arthritis. And you even have a higher risk because of family history. So it would be up to you to decide if you want to talk to your doctor about it now or give it some time to see if you feel better.

Good luck and hope to "see" you around: This is a good place for info.

Thank you for welcoming me to the forum! I really appreciate it.

I've been on the diet for a bit over two years now, and have been as strict as I can with it. Living with my husband who is pretty attached to gluten makes it a bit difficult, but I manage.

I think I will talk to a doctor about the issues that I've been going through. Thanks so much for your help! I do plan on sticking around, as this is the first and most helpful Celiac forum that I've really gotten into.

[GFinDC]

Hi OxyM,

I would suspect other food intolerances beyond gluten before considering lupus. There are many of us who have additional food intolerances and get various symptoms from them. Having a leaky gut can lead to that I think, especially when it is injured by celiac.

There is a higher incidence of some autoimmune diseases with celiac. You can find lists by doing a search on "celiac associated condition" or "celiac related condition". For common food intolerances we get check out people's signatures or search for 'top 8 food allergens".

Celiac Disease Research: Associated Diseases and Disorders

Open Original Shared Link

[Aly1]

I agree wholeheartedly with GFinDC. I've been gluten-free for five months but am only just getting hints of feeling better, after discovering other food issues. Corn is a big one for me, and although I'd removed it from my diet, I didn't follow through with ensuring that my supplements were corn-free. Just this week I stopped all my supplements as a test and noticed quite an improvement. I recommend looking for other things that might be making you feel lousy...I hear it's common for people with gluten issues to have other issues as well...

[Adalaide]

After two months gluten free I still spend most days feeling like I've been hit by a bus. Everything hurts, I'm exhausted and I'm grumpy. There have been positives, I spend less time in the bathroom and I have mostly stopped the biological gas warfare. I've been taking a wait and see approach to find out what clears up and what doesn't, although I have little doubt that I will eventually get a lupus diagnosis. (So far the doctor has said nothing more than that he can't rule it out yet.) I am trying to be patient, I've read here and many other places that it can take a long time gluten free for symptoms to clear up so I wouldn't start panicking yet. That said, trust your instincts. Some lists of related diseases include lupus as more common among people with celiac. I definitely agree with seeing what other food issues you may be having.

(Out of curiosity, where do you live? Being a Utahn myself, your name just screams Utah to me.)

[eatmeat4good]

I would suspect the gluten contamination from living with a gluten eater.

I have been gluten free for a year and a half. I was terribly ill for several years before diagnosis.

I did amazingly well recovering but it did take a while.

Recently I started having inflammation and fatigue and then swollen eyes and muscle weakness and feeling lousy overall. It lasted 2 weeks. I kept getting worse. Here is just an example of how severe contamination can be for some people like me.

I am strictly gluten free and eat only at home in a gluten free home.

However, I finally figured out that what was making me sick was that I was warming water for tea in a microwave that other people use without covering it. I also would warm my coffee that way. I realized my mistake immediately. People warm their gluten food there. The microwave appeared to be clean. The only way to tell was to stop using it or cover my water/coffee before warming. That did the trick in less than a week- No more muscle weakness, fatigue and sleepiness and no more swollen eyes. It took a week to bounce back but I feel great now. How I overlooked that source of contamination I do not know. But it goes to show you how severe trace gluten can be.

If you are dealing with gluten on a daily basis...it could be making you sick...even though you are eating gluten free.

That is how bad CC can get us.

[Lisa]

However, I finally figured out that what was making me sick was that I was warming water for tea in a microwave that other people use without covering it. I also would warm my coffee that way. I realized my mistake immediately. People warm their gluten food there. The microwave appeared to be clean. The only way to tell was to stop using it or cover my water/coffee before warming. That did the trick in less than a week- No more muscle weakness, fatigue and sleepiness and no more swollen eyes. It took a week to bounce back but I feel great now. How I overlooked that source of contamination I do not know. But it goes to show you how severe trace gluten can be.

That is how bad CC can get us.

With due respect, I have not seen any credible source that microwave circulated air could cross contaminate anything, unless gluten drippings from the top of the micro would drop into your food or drink.

Has anyone found any primary sources that indicate that shared microwaves are not safe for those of us with Celiac? I think there is no substantiation, just anecdotal theory. I share a kitchen, without issues.

OXY, have you checked your meds to see if they are gluten free, revisited your diet or created a food diary? I agree, look into further intolerances, as soy, dairy, corn. There are people here who can guide you through that process.

Although Lupus can be your issue, with your family history, it's not a given, by any means. You owe it to yourself to explore.

[Aly1]

With due respect, I have not seen any credible source that microwave circulated air could cross contaminate anything, unless gluten drippings from the top of the micro would drop into your food or drink.

L

Has anyone found any primary sources that indicate that shared microwaves are not safe for those of us with Celiac? I think there is no substantiation, just anecdotal theory. I share a kitchen, without issues.

Ugh here we go again requiring research backup for something, something that was clearly *supposed* to be anecdotal. The poster didn't say "gluten in microwaves can make you sick - she said "I discovered I got sick from a microwave". Very good info to pass on and something that others can decide if they want to try or not try. A LOT of what is said on celiac.com forums can't be found in current research, but that doesn't mean it isn't valuable info!

[Lisa]

Ugh here we go again requiring research backup for something, something that was clearly *supposed* to be anecdotal. The poster didn't say "gluten in microwaves can make you sick - she said "I discovered I got sick from a microwave". Very good info to pass on and something that others can decide if they want to try or not try. A LOT of what is said on celiac.com forums can't be found in current research, but that doesn't mean it isn't valuable info!

Yes again and again! I would like to know how it's, even remotely possible, for invisible gluten particles, propelled through the air in a microwave can be deposited into a cup of coffee and make someone sick. SHOW ME THE PROOF! Ya can't, there is none.

[dilettantesteph]

Yes again and again! I would like to know how it's, even remotely possible, for invisible gluten particles, propelled through the air in a microwave can be deposited into a cup of coffee and make someone sick. SHOW ME THE PROOF! Ya can't, there is none.

How about this situation: Someone heats a sandwich. When they take it out of the microwave, they accidentally bump it up against the inside top of the microwave depositing some crumbs. Then when you heat your coffee the water forms steam which condenses onto in inside top of the microwave, picking up some bread crumbs and then falls back into your cup.

It is possible. It is also very hard to know exactly how you got glutened. This is especially true when the symptoms are delayed and there are a whole bunch of experiences and a lot of different foods to consider.

[dilettantesteph]

To the OP. I'm sorry that you are feeling sick. The best way that I have found to track which foods are bothering is to keep a food/symptom journal. I keep track of brands/sources of foods as well as the foods themselves. It works best if you can stick to a pretty simple diet at first to lower the number of variables. Add things one per week because it can take awhile to notice symptoms. Sometimes instead of adding or subtracting things, I'll eat more of something to see if that changes symptoms. It can take a lot of determination to stick to this plan. It can take a long time to get answers. Eventually it pays off big time.

[Aly1]

Yes again and again! I would like to know how it's, even remotely possible, for invisible gluten particles, propelled through the air in a microwave can be deposited into a cup of coffee and make someone sick. SHOW ME THE PROOF! Ya can't, there is none.

Just because there is no current research / "proof" that something happens, that doesn't mean it doesn't. The poster was just saying, "hey, I stopped doing this and I felt better, something to consider." To me, that doesn't require proof as she was relaying a personal experience and not trying to pass it off as known science.

Remember, as recently as 2008 there was no PROOF that people without celiac were getting sick from gluten - but that didn't mean it wasn't the case!

[Aly1]

Yes again and again! I would like to know how it's, even remotely possible, for invisible gluten particles, propelled through the air in a microwave can be deposited into a cup of coffee and make someone sick. SHOW ME THE PROOF! Ya can't, there is none.

I actually find the microwave theory interesting. IF it were true, and someone would have to test to find that out - theoretically, you know how with some things that you heat make the insides of the microwave a bit wet with condensation; if moisture can rise up out of the food, then perhaps small particles of food might also; then when the next person uses it to the point of condensation, cc might happen as was suggested above? I just put that out there as a theory as to how it might occur. I have no research at all to back that up and it's not even an opinion. . Maybe someone with test strips can press one up on the microwave walls after doing a big slice of pizza or something .

[cyberprof]

I respect everyone who has weighed in on this thread (and sorry to the OP if we've hijacked your thread) I absolutely do cover each and every thing that I put in any microwave after being glutened 2-3 times. I'm not sure if there is science behind it but I do it religiously cause I don't want to risk getting sick even once.

Some microwaves are cleaner than others but the one at my office sometimes looks like a gluten-bomb exploded.

For short term things (like reheating tea -30 seconds in a dry microwave) I wrap a paper towel around the mug. Otherwise, it's a glass lid, microwave-specific vented lid or one of those doomed microwave covered dish plastic thingys.

I have no proof. And really, what self-respecting PhD celiac researcher is going to waste time on a controlled study of residual gluten in a microwave. I'm just stating my experience.

[Aly1]

And really, what self-respecting PhD celiac researcher is going to waste time on a controlled study of residual gluten in a microwave.

Lol!