My Unusual Symptoms

[Guest Kathy Ann]

I'm sure my celiac diagnosis is the answer to my 8 year long prayer for what's wrong with me.

8 years ago I had a terrifying experience with a grand mal panic attack. It was my first. I have never recovered from it. Since that time, my body has remained in nearly constant agitation and stress, sort of like a permanent panic. I sort of feel all of the time like I have been punched in the stomach.

Just in the last year I have started losing feeling in my toes at times and acquired a host of other more typical celiac symptoms, like dizziness. But the reason for this post is my main symptom.

I get a heavy pushing out pressure in my sternum, chest and throat area. My heart flops a few times and I get dizzy. I can breathe OK, but the pressure is very uncomfortable and I yawn and shiver alot. I have been checked thoroughly during these episodes for heart issues many times and always gotten a clean bill of health. I've had ultrasounds and EKG's. So everyone is pretty convinced that nothing is physiologically wrong with my lungs or heart. Doctors chalked it off as emotion and I accepted that for years.

But now I've noticed that it is usually accompanied by a bloating and pressure all the way down in my abdomen/stomach at the same time. Now that I am looking at it from the celiac point of view, it makes more sense.

It always seemed to me instinctively that something was physically very wrong. Since I was a little girl, my nervous system has always seemed on edge. I feel like somebody has their foot on the brake and accelerator at the same time.

I just wanted to see if anyone else happened to have goofy symptoms like mine when they are glutened.

[DingoGirl]

I can relate to some of the things you're going through......holy cow. My constant panic lasted four months....it's written about elsewhere - but that level of acuteness did finally end. But - I also feel the adrenals have been "ON" for my whole life.

Am wondering if you're taking any meds for depression/anxiety. As much as I don't like the thought of it, sometimes they do help.

Will uphold you in prayer, Kathy Ann. Hang in there.

blessings -

[Guest Kathy Ann]

I appreciate the need for them, but I really detest taking drugs. I took the typical ones for anxiety for about a year. They made me dull and so not myself. But it also didn't solve or answer anything. I much prefer to get at the root cause of things. That's why I am so thankful to have found out about my celiac issues. It's a huge breakthrough for me. Thanks so much for your prayers. God is the only reason I've made it this far.

[Generic]

Aside form the panic attacks (I have had them as well) it sounds like the numbing/ tingleing, lack of being able to relax, sounds like nerve damage to me. I'm not a dr. by any means, but I have also experienced those same symptoms. My dr. told me the insulation (mylan sheathes SP?) on my nerves is damaged due to the celiac.

As for the panic attacks, maybe you should try a different med? I don't like taking pills either, but after trying 3 different types I was able to get the panic attacks under control and weaned myself off the meds. I got to the point where I couldn't leave my own house without freaking out.

I hope you feel better soon.

Laurie

[loraleena]

I had this several years ago and took Paxil. It helped, but numbed me , so I went off. 5-htp is supposed to be good for it. It is natural. Also having your adrenals on can cause them to crash and actually be underactive. Also candida overgrowth can cause these symptoms and is common in celiac.

[burdee]

Obviously I'm not a doctor, but I have had wonderful results with magnesium supplementation. Magnesium helps smooth muscle contractions (heart and intestines) as well as calming anxiety. Also magnesium (not calcium) strengthens bones along with Vitamin D. I took Mg to resolve longterm constipation. Most celiacs are very magnesium deficient because damaged villi don't absorb magnesium. Look for a variety that contains mostly aspartate, taurate or citrate. Magnesium oxide is the least absorbable and causes the worst side effects (bloating, gas and diarrhea). Here are links to articles about magnesium:

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Also here are 2 books about Mg available through amazon .com:

The Magnesium Factor by Mildred Seelig (which I found at my local library); and

The Miracle of Magnesium by Carolyn Dean (which I have not yet read).

BURDEE

[spunky]

I don't know if you said how long you've been gluten free. I didn't see a whole lot of difference in my symptoms for a good three months, and even then, kept going back to bad days, alternating with some good days here and there. If you haven't been gluten free for very long, it's hard to tell.

I finally got so sick of wondering if I'd ever get better than I made myself a little graph to try to plot out good days and bad days...about 90 days into gluten free. From that, I could visibly see that the good days were happening here and there with a little more frequency and I began to have some hope. Now about to start into my 9th month gluten free, I'm seeing many more good days than bad, and my "bad" days haven't been as "bad" as bad used to be for a couple of months now.

It's hard to know what's causing everything, but if you haven't been gluten free for very long, it's also hard to know what's helping. It takes a while to really know you're seeing results. For me, that was the most trying time, just waiting to SEE if I was ever gonna get better.

Hang on! I don't know if I saw how long you've been gluten free, but from my own experience and from what I've seen on this board, it can take a while before you really start seeing steady improvement.

Ooops, now I see you've been gluten free six months! Sorry, I'm pretty new at this message board and I find it a little clumsy for me to deal with.

[RiceGuy]

Well, I may be temporarily in a "vitamin B12 mode", but that's what hit me as a really potential influence in the way you are feeling. I've read that Celiacs are often deficient in B12 too. The numbness, dizziness, and general nervous-system-type symptoms all go along with what I've been reading about B12 deficiency. Apparently it can make a huge difference in just days, and there aren't any known issues with taking a lot of it. You don't need a doctor to prescribe it, and it's cheap too.

Then comes the fun part - trying to sort out which type to take! There's methylcobalamin, and cyanocobalamin, and they come in tablets, lozenges, liquid, etc. I keep reading, and flop back and forth on which is the better form of the vitamin, but the sublingual types - especially the liquid, appears the most effective method to get it into the body. As of this moment, I'd suggest a methylcobalamin liquid, but finding one which is gluten-free can be tough. Most companies stop short of claiming gluten-free even when they say wheat-free. Most B12 is the cyanocobalamin type, which has a bit of cyanide believe it or not! They say it's not a problem, but some don't recommend it for those with a particularly high sensitivity, or certain other health problems. The body is supposed to dispose of it, but with the leaky gut issues of the Celiac individual, I'm not very comfortable with it. Often the formula includes folic acid, which in the case of Celiac I'd also not recommend. The info I'm finding suggests it is problematic for those with malabsorption. Some also have niacin, which can cause a skin reaction for some. So I'm looking for ones which are just the B12 without the other vitamins, and most are cyanocobalamin. There is one made by Source Naturals, but it's a tablet, which according to directions doesn't quite dissolve so well. The Freeda brand is gluten-free, and comes in a lozenge, so the only negative might be the cyanide. The ones which are swallowed might not do much if any good unless it's the methyl type, since that requires no conversion by the liver. I've left out a bunch of info here, I know. But for the sake of brevity I'll leave it there.

The way I currently feel though, I'm ready to use either form as long as it's gluten-free and sublingual. If I get good results, I'll at least have a more clear head for continuing my research on this, and to locate a good choice.

[georgie]

I've read that Celiacs are often deficient in B12 too. The numbness, dizziness, and general nervous-system-type symptoms all go along with what I've been reading about B12 deficiency

Yes. I was just thinking the same thing. My pins and needles in feet get better almost immed after a jab and come back when next jab is due. Lozenges are supposed to work as well as a jab. Methylcobalamin is the preferred. Might be worth a try.

[RiceGuy]

I found sublingual B12 by Source Naturals in the form of Methylcobalamin. Not only is it gluten-free, but there aren't any other vitamins added, unlike so many others I see. All the reading I've done suggests that unless your system is really low on them, those other vitamins can cause an overdose. There is no known toxic level for B12 itself, however the best absorption is obtained with smaller dosages rather than larger ones.

[marciab]

I didn't have panic attacks, but I can relate to never feeling relaxed. I just thought all of these years that I was antsy or hungry or bored. Come to find out, I was ADHD and going gluten free got rid of that feeling.

It took a good 10 - 12 months of the gluten free diet with very little possibility of contamination for me to be able to sit at a table with friends or family without being distracted or hyper. I was so surprised to find out that this was a gluten problem.

Give it time and make sure you have all the gluten out your diet.

Marcia

[Guest Kathy Ann]

Rice guy, would you look on your bottle of Source Naturals B12 and see if it has any added ingredients containing corn or soy or dairy???? If it's a sublingual, it probably has something in it for taste. I need a good B12, but have alot of additional allergies besides gluten. Thanks!

Marciab,

For the last 3 days, I have felt so agitated and jittery. It's like my body is full of adrenalin with nowhere to go. I find myself pacing the floor. It's SOOOOOO uncomfortable. But that's what my gluten episodes feel like. All these years of gluten poisoning have apparently really done a number on my adrenal glands. I'm trying to stay on a really pure diet now to see if I can get out of this tunnel. Haven't "gutted" my kitchen yet. I'm kind of afraid to stir up the gluten dust. I guess I can wear a mask and gloves. Just don't feel very good. No energy, little ambition right now.

[marciab]

I went through this too. I found a direct relationship between that feeling and the vitamins I was taking. It would hit me 2 hours after I had taken them. And these are Poly Vi Sol infant vitamins. I had to cut the dose in half.

Other than that, I remember feeling sooooo energized at times. Especially in the mornings when I woke up.

That has subsided now thankfully. I figured it was just my body getting used to having nutrients around.

Nowadays, I feel very even keeled, and kinda slow from time to time. I can think clearly though so this is a good thing. I now understand all those really slow people I used to wonder about.

Marcia

[Terch]

Hi,

I was given a B12 by my naturopath that dissolves under the tongue. She gave it to me as my B12 was non existent but I always react badly to shots as well as any other B12 vitamins I have taken. I don't have any problems with this one and it is gluten free. And is vegetarian friendly! It does not contain soy or dairy or eggs. It's called NOW BRAIN B12 I find it it doesn't bother my stomach at all, and according to the Naturopath you should take it with a clean mouth and let it dissolve under your tongue. It's quite tasty and I take three a day at this time.

1000mcgs

Rice guy, would you look on your bottle of Source Naturals B12 and see if it has any added ingredients containing corn or soy or dairy???? If it's a sublingual, it probably has something in it for taste. I need a good B12, but have alot of additional allergies besides gluten. Thanks!

[Guest Kathy Ann]

Thanks, Terch.

[countrygirl]

I'm sure my celiac diagnosis is the answer to my 8 year long prayer for what's wrong with me. I have been a health food nut my whole adult life. I didn't drink pop or eat candy bars or eat food with artificial ingredients. I never ate refined sugar or refined grains. I have voluntarily lived a very clean life, both in behaviour and environment. Annoying, I know. But that's just me.

But for all my sacrifices and efforts to be as healthy as I can be, I have ended up one of the sickest people I know. A celiac diagnosis is vindication for me after all these years of lonely struggle with no rewards whatsoever. But my main symptoms aren't like the ones I'm reading on this board.

Since I went gluten, dairy, soy and egg free 6 months ago, I did change from lifelong constipation to a funny, grainy, strange daily diarrhea. It's urgent, but not explosive and I only go once. 8 years ago I had a terrifying experience with a grand mal panic attack. It was my first. I have never recovered from it. Since that time, my body has remained in nearly constant agitation and stress, sort of like a permanent panic. I can't relax most of my waking hours, most days. Plus I have at least one actual panic attack daily to work through. I sort of feel all of the time like I have been punched in the stomach.

Just in the last year I have started losing feeling in my toes at times and acquired a host of other more typical celiac symptoms, like dizziness. But the reason for this post is my main symptom.

I get a heavy pushing out pressure in my sternum, chest and throat area. My heart flops a few times and I get dizzy. I can breathe OK, but the pressure is very uncomfortable and I yawn and shiver alot. I have been checked thoroughly during these episodes for heart issues many times and always gotten a clean bill of health. I've had ultrasounds and EKG's. So everyone is pretty convinced that nothing is physiologically wrong with my lungs or heart. Doctors chalked it off as emotion and I bought that for years.

But now I've noticed that it is usually accompanied by a bloating and pressure all the way down in my abdomen/stomach at the same time. I can go from reasonable to 6 months pregnant in one minute flat! Now that I am looking at it from the celiac point of view, it makes more sense. But it is really disconcerting. My fight or flight mechanism has a hair trigger and my whole life right now is spent in superhuman control management.

My adrenals aren't worn out. They are stuck on ON! I have one celiac gene. But my other one is DQ 1,6. That fits too. I apparently have some damage because I tested with active antibodies and mild malabsorption. I'm also an older woman and probably have had active celiac since the age of about 6 or 7. I did vomit every formula feeding my mother ever fed me, but that's my dairy allergy story. I have never believed that I was emotionally upset. It always seemed to me instinctively that something was physically very wrong. Since I was a little girl, my nervous system has always seemed on edge. And yet I am by nature very level headed, take charge and easy going. Funny combination. I feel like somebody has their foot on the brake and accelerator at the same time.

Anyway, I felt pretty good this last week. I didn't eat anything I was particularly suspicious of and was really getting excited to think this was finally it. All of a sudden yesterday and today the same old feeling is back. Now I don't know if I'm glutened, detoxing or what. I realize that no one has any way of knowing. I just wanted to see if anyone else happened to have goofy symptoms like mine when they are glutened.

I can relate to a lot of your symptoms. Have you ever been "scoped". They pass a lighted tube down into your stomach and do biopsies and take pictures. I was suffering from severe acid reflux and didn't even know it. After being on medication, many of my symptoms have gone away as well as the awful anxiety and panic attacks. Acid reflux almost always occurs with celiac disease and is known to cause anxiety. Good luck to you!

[SarahTorg]

Kathy Ann!!

I too have that pressure on my sternum!!! If I accidently eat gluten, I feel like a can't breathe, like some one is sitting on my chest, and I feel extreme panic. I then keep trying to take a full breath and feel like I can't. I feel whoozy, and if I haven't eaten in a while I get really dizzy.

I also get some joint pain, and pretty nasty bloating, and stabbing pains under my ribs.

I also have dh.

But I can relate to the panic.

I do take zoloft now, and that has been my life saver.

I love it.

[Guest Kathy Ann]

Finally! Somebody who has MY symptoms! I'm certainly NOT happy you are suffering. But if you can forgive me.....WHOO HOO!

The reason it matters to me so much is that I haven't improved any and since I don't have "normal" gluten symptoms, I was getting really confused and disillusioned about how to proceed. Most of the other people on this board can tell right away by unmistakeable gastrointestinal symptoms. I don't envy that, but in a way I do. At least I could keep track.

If I at least know that these are the specific symptoms I get when glutened, I have something to go by. Problem is, I have been gluten free to the best of my ability for about 6 months now. I've also completely eliminated corn, dairy, soy, eggs and a few other minor foods. But I'm STILL having these episodes. If these really ARE gluten symptoms, then I am obviously STILL getting gluten somewhere.

[daffadilly]

Kathy Ann, I have had that tightness in my chest & throat for the past two weeks, from being exposed to dry wall dust at my office for about 5 minutes, then I went to another floor for the day & I got a headache etc. Then a week later I am back in my office and some of the walls are painted but not all & within ONE HOUR, I was dizzy, pounding headache in the front of the head, and the chest tightening and the throat thing so that I felt like I could not talk, it was all I could do not to faint at my desk... I went home and was sick all the rest of the day. They are still doing construction on my floor but it is about to end & they finally changed the air conditioning filter for my floor (after I was begging them). The construction crew puts an extra filter on top of the regular one but they leave it on for two weeks while the construction is going on & we just keep breathing the stuff that flows thru the filter, also there were fumes in the hallway each day from the glues and whatever else stuff they were using... (I really do not think this is allowed in a multi story office bldg!!)

All your problems could not only be associated with gluten but also allergies to dust, pollens, molds, animals, carpet, cigarette smoke, ... If I were you I would also get some food allergy testing done, it could be some simple little something that you cannot figure out.

I would start looking for airborne problems, do you live in a house, or apartment? If apartment I would suspect bug spray by the managment and people in the adjacent apartment smoking (I am severely allergic to some of that smoke & it does get thru somehow...)

In my house I do not use any candles, or air freshner, and I have no pets & no carpet

[Guest Kathy Ann]

Thanks, Daffadilly!

I've been a serious health food person for 30 years. So I don't ever use sprays or chemicals or anything like that, use all natural cosmetics and eat mostly organic food.

But I do know that you are absolutely right. I could be allergic to any environmental thing, even if it is normally harmless. I have had one of the notorious ELISA tests done from York and have stayed away from everything they said on it in addition to gluten, eggs, dairy, soy and corn. I used a saliva test to test for all of them and then confirmed it with enterolab's tests and the ELISA. I definitely have gluten damage going on, mild malabsorption and several other food allergies. But I have not done any environmental tests. I would love to do the Lame Advertisement test. But frankly, I'm out of money. 8 years of searching for answers has tapped us.

I don't have carpets in my home and removed everything I can think of that might be toxic a couple of years ago. I've tried A LOT of things.

I REALLY don't feel well regarding my nervous system, most days and my doctors are running out of ideas. I'm currently on a heavy metal detox just in case. I've done them before. But like I said, we're out of ideas.

I was naively hoping that just going faithfully gluten free would make me feel better quickly. Too much damage for that, I'm afraid.

[Guest Kathy Ann]

I just thought of something. I do have a dog. A BIG hairy dog. He's about the same age as my panic. I could be allergic to him, I suppose. But I have panic episodes even when I am away from home. What do you all do if you find out you are allergic to the family pet? Do you do the shots thing? I'm totally unacquainted with that procedure.

[SarahTorg]

Well, I get those same symptoms, and I don't have any animals.

I honestly think it has a lot to do with nerves. When I was younger, it was so bad that it would make me have to run to the bathroom if you know what I mean. Its like that fight or flight is turned up on high for a nice long time while someone is sitting on your chest.

Kathy, I do think that once you are gluten free for a while longer, and if you accidently eat a good amount, you will probably notice some symptoms you've never noticed before. Or maybe because you lived with them for so long, you would have never thought twice about them.

I'd keep a good food diary, along with your moods, and when you have these attacks.

And I can't say enough about zoloft. Its saved me from social anxiety, depression, panic attacks..

AND I still feel like my real self. paxil was horrible for me. It made me feel like a robot. I had no emotions, and I didn't notice if my kids were yelling and screaming, or if my house was in shambles. It pretty muched masked too much of me. I think the point was to mask the depression and anxiety. It did that and then some!

[Mayflowers]

People, can we be a little less graphic when we're posting on this forum..??!! WAY too much information is being given. We are not a doctor's office here. I don't know about other people, but I don't need to know the consistency of someone's bowel movement among other gross symptoms and gunk being noticed.

I'm sorry but KIDS read this forum and there should probably be some kind of censorship when posting by the moderators, so we're (or at least me is not completely grossed out)

[Guest Kathy Ann]

I'm sorry, Mayflowers. What are you talking about? I don't see anything on here about consistency of bowel movements. We are just discussing nervous system symptoms related to our celiac. Is there something wrong with that? I apologize if we're doing anything wrong. I see other threads where symptoms are freely discussed. Is there something wrong with discussing ours?

[mouse]

Kathy Ann, you are doing nothing wrong.

Mayflower, I am sorry that you are grossed out by some of the descriptions you read on the threads. Some of the newbies and even the older forum members have digestive problems that need to be addressed. Some of the members here have doctors that only give them a minute or two of their time as they are on a tight schedule with their HMO. And yes, sometimes it gets graphic, as some people don't know what is normal or not for BM.