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pbsml Newbie
pbsml
Posted

Hey all,

Very new to this forum, and also to the thought of possibly being gluten-sensitive, or having Celiac.

I am hoping I can pass over what I am experiencing to you all and perhaps get some thoughts back on whether or not I am dealing with the right thing.

Since quitting smoking, nearly 7 weeks ago (go me), I've had the weirdest, most debilitating, frustrating, and depressing sickness. At first, I thought it was just withdrawal from nicotine, but then as it went on past a couple of weeks, I knew it had to be something more. I've visited numerous doctors, including a few trips to a cardiologist to rule out any heart problems, which they have confirmed... I have a healthy heart.

Ok, here I go...

Most of the day, I am foggy-headed (almost light-headed in a way).... I feel like I have pressure at the top of my head, as if i were wearing a hat.

My stomach has been unbelievably upset (primarily in the morning right when I wake up).

I get random pains in my chest and ribs... nothing in particular brings these on. The pains are very sharp, sometimes right on the breast bone, sternum, or under my armpit on either side of my ribs and only last for 30 seconds at the most and then go away. Often, when I get these pains, it briefly takes my breath away and i almost feel nauseous.

I have been getting a lot of tingling in my fingers, and sometimes in my toes... while my feet quite typically feel cold, yet sweaty.

I have been previously diagnosed with PVC's, and lately, since quitting smoking, they have been exponentially worse. My heart rate often is in the mid 50's when sitting, where it used to be in the mid 60's.

My blood pressure has oddly gone up a bit (140/90!)

My eyes kind of feel like they are burning a bit (almost like they're really tired) and a little blurry... and my body is usually extremely fatigued. That is something that I simply cannot get used to. Last, but certainly not least... I have had an exceptionally difficult time sleeping lately. I wake up all of the time, almost in a panic state, wondering if i still feel just as bad as when i first went to bed. I never feel rested.

I know i've typed a lot, but I am concerned and am hoping I have finally found the right place/problem. I'm tired of doctors telling me that i just have anxiety... I can't see how that is the problem. I understand that I might be anxious now over what I am feeling, but for it to be brought on by anxiety in the first place seems impossible to me.

So... does anyone know if these symptoms are common with gluten intolerance, or Celiac Disease?

If so, I of course would be more than willing to try a gluten-free diet. If that is the case, then how long should I expect to start to feel better in?

Sorry for asking so many questions... just worried I guess.

For the record, I'm 5 days away from my 30th birthday, male, 5'9 and 160lbs. Aside from all of this, I am in excellent physical condition. Geeze, I feel like I just wrote a personal ad. That's not what I meant... just giving some info about me in case it helps.

One last thing... Can stopping smoking bring this on, or at least let me somehow suddenly feel the symptoms????

Any (and I mean any!) help would be greatly greatly appreciate.

thanks so much!

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ravenwoodglass Mentor
ravenwoodglass
Posted

Welcome. You sure do sound like you could be one of us. One of the first things you should do, if you haven't already, is ask for doctor for a complete celiac panel. If that is positive many times a GI doctor will want to do an endoscopic exam. If your blood work is positive though some doctors are skipping the endo and just putting folks on the diet. The choice whether to do the endo or not is yours.

The bad news is that you can have a false negative on both tests. So after your testing is done you would need to give the diet a good strict try for a few months to see if it does help. Some will skip the testing and go straight to the diet but you need to be aware that if your not eating gluten you tests will be negative whether you are celiac or not.

Celiac usually has a triggering event such as an illness or stress, quiting smoking can be the trigger for some folks and it sounds like it may have been for you also. Congrats on that by the way as it isn't easy.

Read as much as you can here and ask any questions you need to.

pbsml Newbie
pbsml
Posted
  • Author

Thank you very much for the quick reply. I found myself spending a Saturday in front of a computer trying to figure this out... how fun. I really appreciate the advice, and I will be sure to get my doctor to test me... regardless of how unappealing an endo sounds. As of this morning, I stopped eating gluten, but maybe I shouldn't do that just quite yet.

I completely understand what you mean when saying that perhaps stoping smoking is what tipped this off. I never really thought of it that way, but you're right, it definitely was not easy and caused a decent amount of stress on me. I don't know why I ever started with that habit, but I'm glad to be away from it now.

Thank you again, very much.

All the Best, and I'll post back here when i get some results or start feeling better.

:)

AlysounRI Contributor
AlysounRI
Posted

I have read that smoking can mask the symptoms of gluten intolerance so it's quite possible that you have been experiencing that.

A few years ago, I gave up smoking and my gluten intolerance became worse. Now I have given up both and I feel a lot better.

It's worth a try!

pbsml Newbie
pbsml
Posted
  • Author

I have read that smoking can mask the symptoms of gluten intolerance so it's quite possible that you have been experiencing that.

thank you! are you serious??? it can mask it? that is unreal that doing something bad for your health can prevent you from seeing what other sort of damage you are doing in the meantime.

thank you very kindly for the reply... i'm definitely not going back to smoking, that's for sure.

skigirlchar Newbie
skigirlchar
Posted

the most unplesant parts of of the upper endo were

  1. the out of pocket part i had to pay for because i have crappy individual insurance
  2. i have crappy veins & was dehydrated because you can't eat for 12 hours before so they had trouble getting the iv in.

other than that, it was easy and the only after side effect was that i was exhausted for a few days because my body sucks up anesthesia and doesn't let it go (an atypical response.)

pbsml Newbie
pbsml
Posted
  • Author

i had to pay for because i have crappy individual insurance

I have insurance that has a SERIOUSLY high deductible, which I have now just accepted that I am going to reach before the end of all of this. I'm originally from Canada and not used to the high cost of medical attention in the US. I've never really been sick enough to need medical attention in this country before. It threw me off a little bit, but I just have to accept it and figure out what's wrong I guess.

I think I'll be able to survive through that test then... thanks for the confidence booster :) I feel better about it already.

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AlysounRI Contributor
AlysounRI
Posted

thank you! are you serious??? it can mask it? that is unreal that doing something bad for your health can prevent you from seeing what other sort of damage you are doing in the meantime.

thank you very kindly for the reply... i'm definitely not going back to smoking, that's for sure.

I smoked one clove cigarette per day from about the age of 16 (I was about 40 when I quit). There were years when I did not smoke but I tended to go back. Not now.

I am done. I was never addicted and so when I stopped I just stopped. But when I stopped the symptoms of what turned out to be not celiac but a gluten intolerance, became elevated. So, there is a connection!!

Here is where I read it, in fact:

Cigarette Exposure Protects Against Adult Celiac Disease

https://www.celiac.com/articles/815/1/Cigarette-Exposure-Protects-Against-Adult-Celiac-Disease/Page1.html

Also, cigarette smoking will cause great problems in your esophagus, too.

Redness, rawness, perhaps even ulcers. The longer you are not smoking, the better your esophagus will be.

Congrats on giving up smoking, it's not an easy thing to do!!

~Allison

pbsml Newbie
pbsml
Posted
  • Author

Cigarette Exposure Protects Against Adult Celiac Disease

https://www.celiac.com/articles/815/1/Cigarette-Exposure-Protects-Against-Adult-Celiac-Disease/Page1.html

Also, cigarette smoking will cause great problems in your esophagus, too.

Redness, rawness, perhaps even ulcers. The longer you are not smoking, the better your esophagus will be.

Allison,

That is unreal, yet makes so much more sense that I would only start to notice symptoms once quitting. I smoked considerably more than you of course, but it just shows how much their theory is being proven.

Not to dwell on old habits, but do you think the development of this intolerance was inevitable, or do you think that possibly starting smoking 7 years ago caused it, and then stopping made me notice?

Thanks Allison,

Sean

ravenwoodglass Mentor
ravenwoodglass
Posted

Sean, You were born with the genetic predispostion to develop celiac. No one can really tell you if your previous smoking was masking symptoms. It is easier to tell you that the stress of quiting may have been your trigger.

You need to keep in mind that if you go gluten free without testing, and I am not telling you not to, that if you decide in a couple of months that you want the testing done you will have to do a challenge. Once your body has cleared itself of the antibodies and started on the road to recovery a challenge will likely make you even sicker than you feel now. For some of us challenges have led to a backsliding in recovery that can take quite a long time to repair. If your body does not want gluten it is going to tell you in no uncertain terms that you are doing the wrong thing by adding it back. The antibody reaction will likely be strong. Do keep that in mind if you are planning on 'trying' the diet with the intention of getting testing done later to confirm that you need to be on it.

ravenwoodglass Mentor
ravenwoodglass
Posted

I have insurance that has a SERIOUSLY high deductible, which I have now just accepted that I am going to reach before the end of all of this. I'm originally from Canada and not used to the high cost of medical attention in the US. I've never really been sick enough to need medical attention in this country before. It threw me off a little bit, but I just have to accept it and figure out what's wrong I guess.

I think I'll be able to survive through that test then... thanks for the confidence booster :) I feel better about it already.

You do have the option of simply doing the diet. You would need a challenge, as I said in my previous post, if you decide to test later. However if money is a concern the option to simply do the diet, follow it strictly, and see if it helps is there. The gluten free diet will not prevent testing for other conditions if you still have problems that haven't resolved but it will prevent testing for celiac.

pbsml Newbie
pbsml
Posted
  • Author

You do have the option of simply doing the diet. You would need a challenge, as I said in my previous post, if you decide to test later. However if money is a concern the option to simply do the diet, follow it strictly, and see if it helps is there. The gluten free diet will not prevent testing for other conditions if you still have problems that haven't resolved but it will prevent testing for celiac.

Thanks again for writing. I think I should take your advice and just get tested right away then. At least then I won't need to worry about any backlash when having to put gluten back into my diet later down the road. I appreciate the advice, always, and I'll let you know how things turn out once I get some results back.

Hopefully, thanks to this forum and those of you who have written, I'll shortly be on the road to recovery.

sean

AlysounRI Contributor
AlysounRI
Posted

Sean:

If you do have celiac, then you need to stay on the gluten, sadly, otherwise it will skew the tests, as Raven has commented.

Gluten intolerance is not auto-immune like celiac. But more people suffer from gluten intolerance than have celiac.

Some people believe that gluten intolerance is a kind of "pre-celiac".

There are not many studies on gluten intolerance, however.

But regarding the smoking, I don't think there is cause and effect with celiac.

But the research in that study seems to find some evidence that quitting smoking can be a trigger for full blown celiac or that smoking seems to delay the onset of adult celiac disease.

Jestgar Rising Star
Jestgar
Posted

Gluten intolerance is not auto-immune like celiac.

Do you have any links to back up this statement?

mushroom Proficient
mushroom
Posted

Sean, some of us spend a lifetime trying to "figure it out" because our docs don't do it for us. I am one of those that developed strong symptomatology as soon as I quit smoking. However, it took almost 40 years to figure it out. I knew it wasn't IBS or fibromyalgia despite what the docs said, but I didn't know what it WAS :o

I would strongly urge you, like Ravenwoodglass, to keep eating gluten until you can get tested, even if the test is negative, because mosst of us find it is too hard to go back to gluten for 2-3 months in order to get tested later.

As for triggers, for some it is illness, for some it is stress, for others accidents, for some women childbearing. Mine got much, much worse after an auto accident.

Good luck on your journey to good health. :)

AlysounRI Contributor
AlysounRI
Posted

Do you have any links to back up this statement?

I thought that was the going theory, Jestgar :)

Celiac is genetic and auto-immune but gluten intolerance just is?

No?

There is lots of research into celiac but not much at all into "simple" gluten intolerance.

~Allison

pbsml Newbie
pbsml
Posted
  • Author

So so interesting that it is dramatically different in each individual.

Thank you all so much for writing and helping me with this. This, believe it or not, has been my most productive day in weeks, and it's a Saturday! I'll keep on it for now, as much as I'd love to just know if it helps being off of it and I'll be sure to come back on here and mention the outcome, and perhaps, like all of you, be able to help someone else along their path to feeling better.

As much as I may not be feeling physically better yet, mentally I am on a completely new level.

Thank you all SO much!

Sean

Jestgar Rising Star
Jestgar
Posted

AFAIK Celiac is the only one they know how to test for. Absence of information does not necessarily mean absence of existence.

pbsml Newbie
pbsml
Posted
  • Author

Truth be told, while even questioning whether or not either of these conditions do in fact exist in me, I was a little upset thinking of foods I wouldn't be able to eat... although after looking around online, it seems like there aren't necessarily limitations, just cations.

that makes me feel a bit better too.

AlysounRI Contributor
AlysounRI
Posted

AFAIK Celiac is the only one they know how to test for. Absence of information does not necessarily mean absence of existence.

That's true.

The only test that I can think of to diagnose gluten intolerance is the Enterolab tests and the genetic markers.

I hope that at some point there will be tests for gluten intolerance.

It would give even more answers to those who don't have auto-immune celiac and may prevent more misery to people earlier on.

~Allison

AlysounRI Contributor
AlysounRI
Posted

Truth be told, while even questioning whether or not either of these conditions do in fact exist in me, I was a little upset thinking of foods I wouldn't be able to eat... although after looking around online, it seems like there aren't necessarily limitations, just cations.

that makes me feel a bit better too.

Sean:

If you get tested and come up with a negative for celiac, and going off the gluten makes you feel better, then you have your answer. There are a lot of us here who have had that experience. But real congrats to you on giving up smoking!! Keep going with that!! It will contribute a lot to your continued healing.

~Allison

Skylark Collaborator
Skylark
Posted

That's true.

The only test that I can think of to diagnose gluten intolerance is the Enterolab tests and the genetic markers.

Enterolab tests are not diagnostic, nor are the genetic markers. They are merely suggestive. The Enterolab fecal tests actually provide somewhat less information than actually trying the diet for a while because there is no information provided on sensitivity and specificity.

ravenwoodglass Mentor
ravenwoodglass
Posted

Sean:

If you do have celiac, then you need to stay on the gluten, sadly, otherwise it will skew the tests, as Raven has commented.

Gluten intolerance is not auto-immune like celiac.

I actually would disagree with this. The simple reason why is I would be labeled gluten intolerant by some doctors because I don't show up positive on blood work. I had scores of autoimmune issues since childhood.

Personally I consider them both to be the same thing but with perhaps different systems effected.

ravenwoodglass Mentor
ravenwoodglass
Posted

The only test that I can think of to diagnose gluten intolerance is the Enterolab tests and the genetic markers.

I hope that at some point there will be tests for gluten intolerance.

It would give even more answers to those who don't have auto-immune celiac and may prevent more misery to people earlier on.

~Allison

Enterolab does not diagnose anything. They simply tell you if your body is forming antibodies. Antibodies cause the autoimmune reaction. Both celiac and 'gluten intolerance' are antibody driven. IMHO they are different 'legs' of the same animal.

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    • trents
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    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
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