Allergies/other possible autoimmune - related to celiac? Wondering if I should pursue testing.

[mancalacat]

Hi everyone! A little backstory on me (will try not to let it get too long):

I have been gluten-free since March of 2014, so nearly 4 years. I initially tried it as part of an elimination diet and noticed I felt better, but was not diagnosed with celiac or any other diseases. I was very strict about it for the first year but after going to the doctor and getting a negative blood test for celiac, I sort of wrote it off as "oh I only have a sensitivity, it's no big deal" even though I knew it wouldn't be an accurate test since I had been gluten-free. I didn't want to do a gluten challenge and get tested for real because a) I was worried about the cost of full testing (I was in college at the time, and not much better off financially now LOL), and b.) I couldn't risk taking so much time off school and work in case my symptoms got bad again.

Since then I have not been very strict with checking labels, asking when I go out to eat, etc, and sometimes I will eat small amounts of gluten thinking it won't affect me much. I have also had persistent issues with digestion. I've tried being really strictly gluten-free for a couple weeks at a time, but I never end up feeling better to the point where I KNOW that gluten is the main issue, so I'm not motivated to keep up being so rigorous about it. I don't know if I should expect to feel more rapid relief like when I first went gluten-free -- if it was a coincidence and/or another part of the elimination diet -- or if I am just not being persistent enough in my sticking to the strict diet (this might be a personality issue if I'm being honest). Therefore, I have written a lot of these issues off as gluten sensitivity and/or IBS and accept it as a part of my daily struggle.

These issues have mostly stayed in the back of my mind, until recently. I have had a lot of sinus infections and sinus issues in general starting from about age 17/18, when I started noticing problems with what I thought was gluten intolerance. I thought that was a coincidence and never would have made a link, until I went to an ENT doctor last week and he said there was nothing visibly wrong in my nasal passages (has not done a CT of my sinuses etc yet, mind you) but based on my symptoms wants me to go to an allergist and has started me on a course of prednisone. This makes me wonder if what I thought was a structural issue causing infections is actually something related to allergies or autoimmune issues. I pretty much always have a stuffy/runny nose, get a lot of headaches, coughing/sneezing, and have symptoms like extreme fatigue, body aches, and unexplained inflammation throughout my body that seems ridiculous considering that I'm a generally healthy, active woman in my 20s! These symptoms come and go in terms of severity, but I never really feel completely well. My friend was giving me an amateur massage the other day and she couldn't believe how many knots and trigger points I have throughout my back... it seems like there's something going on with inflammation and my body's general health. The prednisone seems to be helping with some of the symptoms but I also just got the prescription two days ago so it will be interesting to see.

I do think that those symptoms were better when I was more strictly gluten-free, but like I said, could have also had something to do with healthier lifestyle, lower stress and anxiety, etc. I've also struggled with anxiety and bipolar disorder and I wonder how much these issues feed into each other sometimes -- quite literally: when I'm in a bad place I'm not motivated to either eat healthy or stick to a strict gluten-free diet, which might be sabotaging me in the long run too.

That was a bit of a rant, so I apologize! What I mean to ask after all this -- I know you're not doctors by any means and I will continue to pursue medical treatment, testing, etc -- but has anyone found a link between sinus/allergies/etc symptoms that turn out to be related to celiac? I have heard of some of these symptoms being indicative of celiac but I wanted to ask you as a community about your experiences. If there is a possible link there, I would want to take the leap and pursue celiac testing for real this time. I have been out of work due to my symptoms for the better part of a month now anyway, so if I'm going to figure out what's wrong with me, this is the time!? However, I truly don't know if there is a relationship at all, if it might be something else altogether causing my symptoms, or what. Thanks for listening to my novel of health complaints!

[ravenwoodglass]

I can only talk from my own experience but my allergies were related. Before I was diagnosed I saw an allergist who did skin prick testing and then put me on an elimination diet. The skin testing was for 99 different allergens. The only thing I didn't react to was beech trees.  After I was diagnosed celiac he said that (and my symptoms) made him think celiac. After I reacted severely on the elimination diet when I added in Cream of Wheat he referred my back to my GI for my official diagnosis. Long story short within a year or so I only had a couple true allergies left all the other resolved. Haven't needed any Singulair or my inhalor since 6 months post celiac diagnosis. Don't know if you will also get relief.

While it would be good to get offically diagnosed I can understand why you are reluctant to do a challenge. Since you haven't been strict there is a chance that you might still show positive on a panel. You may want to consider asking to be retested.

[Ennis-TX]

13 hours ago, mancalacat said:

Hi everyone! A little backstory on me (will try not to let it get too long):

I have been gluten-free since March of 2014, so nearly 4 years. I initially tried it as part of an elimination diet and noticed I felt better, but was not diagnosed with celiac or any other diseases. I was very strict about it for the first year but after going to the doctor and getting a negative blood test for celiac, I sort of wrote it off as "oh I only have a sensitivity, it's no big deal" even though I knew it wouldn't be an accurate test since I had been gluten-free. I didn't want to do a gluten challenge and get tested for real because a) I was worried about the cost of full testing (I was in college at the time, and not much better off financially now LOL), and b.) I couldn't risk taking so much time off school and work in case my symptoms got bad again.

Since then I have not been very strict with checking labels, asking when I go out to eat, etc, and sometimes I will eat small amounts of gluten thinking it won't affect me much. I have also had persistent issues with digestion. I've tried being really strictly gluten-free for a couple weeks at a time, but I never end up feeling better to the point where I KNOW that gluten is the main issue, so I'm not motivated to keep up being so rigorous about it. I don't know if I should expect to feel more rapid relief like when I first went gluten-free -- if it was a coincidence and/or another part of the elimination diet -- or if I am just not being persistent enough in my sticking to the strict diet (this might be a personality issue if I'm being honest). Therefore, I have written a lot of these issues off as gluten sensitivity and/or IBS and accept it as a part of my daily struggle.

These issues have mostly stayed in the back of my mind, until recently. I have had a lot of sinus infections and sinus issues in general starting from about age 17/18, when I started noticing problems with what I thought was gluten intolerance. I thought that was a coincidence and never would have made a link, until I went to an ENT doctor last week and he said there was nothing visibly wrong in my nasal passages (has not done a CT of my sinuses etc yet, mind you) but based on my symptoms wants me to go to an allergist and has started me on a course of prednisone. This makes me wonder if what I thought was a structural issue causing infections is actually something related to allergies or autoimmune issues. I pretty much always have a stuffy/runny nose, get a lot of headaches, coughing/sneezing, and have symptoms like extreme fatigue, body aches, and unexplained inflammation throughout my body that seems ridiculous considering that I'm a generally healthy, active woman in my 20s! These symptoms come and go in terms of severity, but I never really feel completely well. My friend was giving me an amateur massage the other day and she couldn't believe how many knots and trigger points I have throughout my back... it seems like there's something going on with inflammation and my body's general health. The prednisone seems to be helping with some of the symptoms but I also just got the prescription two days ago so it will be interesting to see.

I do think that those symptoms were better when I was more strictly gluten-free, but like I said, could have also had something to do with healthier lifestyle, lower stress and anxiety, etc. I've also struggled with anxiety and bipolar disorder and I wonder how much these issues feed into each other sometimes -- quite literally: when I'm in a bad place I'm not motivated to either eat healthy or stick to a strict gluten-free diet, which might be sabotaging me in the long run too.

That was a bit of a rant, so I apologize! What I mean to ask after all this -- I know you're not doctors by any means and I will continue to pursue medical treatment, testing, etc -- but has anyone found a link between sinus/allergies/etc symptoms that turn out to be related to celiac? I have heard of some of these symptoms being indicative of celiac but I wanted to ask you as a community about your experiences. If there is a possible link there, I would want to take the leap and pursue celiac testing for real this time. I have been out of work due to my symptoms for the better part of a month now anyway, so if I'm going to figure out what's wrong with me, this is the time!? However, I truly don't know if there is a relationship at all, if it might be something else altogether causing my symptoms, or what. Thanks for listening to my novel of health complaints!

I would suggest the challenge and getting tested, if celiac a common issue is that when you body reacts to gluten, it sometimes gets confused by other things that come in at the same time.  It sort of starts associating other foods with the trouble maker gluten. This can lead to allergies developing to others foods......yeah I got corn in that one lol. I grew up in a Mexican family so this is really a kick in the behind. Anyway you mention anxiety and bipoplar....those actually might be affected by a damaged gut causing b-vitamin, vitamin D, magnesium, etc. deficiencies that lead to it. Also some of us have neurological side effects to gluten where our immune system might also attack our nervous system/brain in addition to our guts.

[Jmg]

Hello and welcome

I saw a lot in your story that matches my own experience:

45 minutes ago, Ennis_TX said:

I pretty much always have a stuffy/runny nose, get a lot of headaches, coughing/sneezing, and have symptoms like extreme fatigue, body aches, and unexplained inflammation

This was me. Not so much headaches but the sinuses, coughing and sneezing, fatigue etc. I had several chest x rays after being unable to shake off coughs which lasted weeks on end. 

45 minutes ago, Ennis_TX said:

 My friend was giving me an amateur massage the other day and she couldn't believe how many knots and trigger points I have throughout my back... i

Again I had the same experience, right down to the friend remarking on how locked up my back was.  I've had years of backache and had a ruptured disk so I put this down to that, I've since realised the backache was gluten related (what a mind**** that was) and that may have weakened the disk in the first place.

49 minutes ago, Ennis_TX said:

I've also struggled with anxiety and bipolar disorder and I wonder how much these issues feed into each other sometimes -- quite literally: when I'm in a bad place I'm not motivated to either eat healthy or stick to a strict gluten-free diet, which might be sabotaging me in the long run too.

Yes me too. Anxiety attacks and often a near constant feeling of unease.  Never diagnosed bipolar but have the symptoms, had manic 'up' periods and plenty of horrific downs. I am also my own worst self sabotager. 

14 hours ago, mancalacat said:

but has anyone found a link between sinus/allergies/etc symptoms that turn out to be related to celiac?

Yes! Well, let me go back a bit, I'm not a diagnosed celiac, my scope was negative but I definitely have a major gluten problem. I found this out at 40, after many years of problems, but my best guess is that it started at 11/12 with asthma, hay fever, abdominal pains (had a needless appendectomy) and then progressed through chest pains, depression, that same lack of motivation, then backpain and the beginnings of a load of neuro stuff.  

I went gluten free, had a big positive response then did a challenge but wound up with a negative diagnosis via endoscopy. However doing the challenge was more than enough evidence to keep me strictly gluten free. Once I felt how I feel without gluten all the temptation fell away. There's no gluten food I would eat without physical force or starvation being involved. The good thing is that once gluten free my will power and focus improves so that may be the case for you too. 

Now, asthma, hives etc are a different immune system response to celiac, but for me at least they're connected. Going gluten free improved them significantly, but I only recently found out that my difficulty with dairy was a full blown intolerance to the proteins within it and that they caused my asthma as well as other digestive things, skin issues and some brain fog. So I've now cut that out completely as well and feel much better for it.

58 minutes ago, Ennis_TX said:

 If there is a possible link there, I would want to take the leap and pursue celiac testing for real this time.

Great idea! Suggest you make some brief, bullet point notes, see a doctor and tell them you want to definitively exclude celiac and are willing to do all it takes from your side to do this. Get as definitive an answer as possible, this community will help you through it and at the end, like me, you may have your own answers even if the diagnosis is negative. Not everyone with a gluten issue tests positive, but the challenge process should determine whether you do respond to gluten or not.

Best of luck, hope you've found your answer

Matt