Scary Symptoms Returning

[CGally81]

I'm 28. Self-diagnosed early August after several months worth of symptoms, and started going gluten-free. Saw the symptoms of gluten intolerance (fogged head, depression, inability to concentrate, the gastro stuff, etc.) disappear.

And they're still gone. But something else that's rather disturbing and scary has shown up.

When I was in high school, I used to have strange symptoms I suffered all the time, but just accepted as something I'd "just have to live with". Basically, my skin, mainly on the chest, was very sensitive to my clothes, like if I wore a shirt with a pocket or buttons, I could really -feel- it on my skin. I also had shortness of breath at times, muscle twitches (could be anywhere, sometimes an eyelid or a finger, but oftentimes it was on my stomach), and heartburn. I also felt pin-pricks on my skin, and itchiness, which could sometimes get really bad.

I lived like that for a long time, and somehow, the conditions all went away in my adult life. I never knew why. I didn't even notice when they were gone, but I know that I haven't had them for years.

Until now. Two Thursdays ago, my skin started to feel very sensitive on the chest area. Days later, the pin-pricks and itchiness returned. The muscles twitches came back after that. Now, only yesterday, the heartburn is back too.

Any ideas what this is all about? I've had this problem 10 years ago, lived with it, but it's been gone for a long time. Now it's back. I've been gluten-free for 3 weeks, and I know that's not enough to fully heal (and I still have the post-gluten-free hunger), but does anyone know what this is, how to deal with it, and so on?

I am going to get blood work done as soon as I can to test for vitamin and nutrient deficiencies. People have suggested low potassium, etc. My parents, though they support my quest for answers via doctor, don't want me taking any supplements right now (they think the L-glutamine may have caused this increase in symptoms, though the symptoms began just before I actually started taking it. I had also started taking Magnesium and Vitamin B12 in the last few days, knowing that many of us are deficient in them), and think that any supplements could aggravate or be causing the condition. Hopefully a blood test will give me some answers.

Have any of you lived with these types of problems? Do you know if there is a common cause for them? Can I expect this to go away?

[tarnalberry]

have you tried changing laundry detergent? it is possible to be sensitive to detergents - my dad couldn't use Tide.

[CGally81]

have you tried changing laundry detergent? it is possible to be sensitive to detergents - my dad couldn't use Tide.

That would not explain it. In fact, many of these symptoms are said to be similar to low magnesium. How I could have had low magnesium in high school but not afterwards, but suffer from it now (well, the gluten intolerance I supposed, combined with the increased hunger afterwards making my body want more? I dunno), is something I don't get.

[Mrs. Smith]

This happened to me after going gluten free. I also took magnesium, CALCIUM, and methyl B12. It took a couple of months to resolve. I took epsom salt baths and massage therapy also helped. I think it helps the muscles detox and activates the lymph system which also aids in detoxing the body of all the toxins associated with years of gluten injestion. You can also try cardio excersize. Sweating is so good for you and it will circulate your blood and oxygen to repair cells. Make sure you drink lots of water, I drink smart water as it has lots of electrolites to keep you really hydrated. Also, be patient I didnt truly start to feel better for 6mos gluten-free. I still have episodes, though they are pretty mild. It can take up to 2 yrs to heal. Im the same age as you, we are young and lucky that we know so we can heal. Good Luck!

[brigala]

One possible explanation could be that when you were in HS you weren't absorbing the nutrients you needed, and now you're simply not getting them in your diet. The one risk to to the gluten-free diet is that it can be easy to miss some nutrients because we cut do much out of our diets. "regular" white flour is enriched with all sorts of minerals and vitamins to give an otherwise nutritionally void food some value. White rice flour often is NOT fortified, and by itself is also nutritionally void. It doesn't help that your gut is probably still not doing a good job absorbing what few nutrients you are still getting.

A broad-spectrum multivitamin might be your best first line of defense. Just make sure it is gluten-free.

Bloodwork is also a good idea, and repeat it regularly. You may find that your needs change dramatically as your body heals and its ability to absorb what it needs from food improves. A multivitamin should always be safe, but you will need to be careful not to overdo mega-doses of individual stuff.

[RiceGuy]

I think you're on the right track with the magnesium and B12. And no, nutrients do not cause "side effects". Although it is possible to overdose on certain ones more easily than others, those two are pretty darn safe. There is no known level of overdose for B12, and too much magnesium usually just gives you loose stools. The L-Glutamine may be another matter, but you can always stop taking it and see if you notice anything. As with all supplements, make sure they're gluten-free, and free of anything else you can't tolerate.

Keep in mind that blood tests aren't very good at showing deficiencies of various nutrients. Many on this board have found supplementation helpful, even if blood tests show normal or even above normal range.

Other often deficient nutrients include B vitamins, vitamin D, potassium, iron, zinc, vitamin K, and probably others I'm not thinking of right now.

I would remind your parents that nutritional supplements differ from herbal supplements, and do not normally have negative effects because they supply things we need every day for good health. Herbal formulas and "tinctures" are very different, often supplying things we don't regularly consume (though many can be very helpful).

It would not surprise me if the symptoms you're experiencing are temporary, or are caused by hidden gluten or some other offender. Sometimes, the other ingredients in a supplement (fillers, binders, etc) can be the culprit. Always look for a gluten-free statement on the bottle, or check with the manufacturer.

[The Fluffy Assassin]

I'm 28. Self-diagnosed early August after several months worth of symptoms, and started going gluten-free. Saw the symptoms of gluten intolerance (fogged head, depression, inability to concentrate, the gastro stuff, etc.) disappear.

And they're still gone. But something else that's rather disturbing and scary has shown up.

When I was in high school, I used to have strange symptoms I suffered all the time, but just accepted as something I'd "just have to live with". Basically, my skin, mainly on the chest, was very sensitive to my clothes, like if I wore a shirt with a pocket or buttons, I could really -feel- it on my skin. I also had shortness of breath at times, muscle twitches (could be anywhere, sometimes an eyelid or a finger, but oftentimes it was on my stomach), and heartburn. I also felt pin-pricks on my skin, and itchiness, which could sometimes get really bad.

I lived like that for a long time, and somehow, the conditions all went away in my adult life. I never knew why. I didn't even notice when they were gone, but I know that I haven't had them for years.

Until now. Two Thursdays ago, my skin started to feel very sensitive on the chest area. Days later, the pin-pricks and itchiness returned. The muscles twitches came back after that. Now, only yesterday, the heartburn is back too.

Any ideas what this is all about? I've had this problem 10 years ago, lived with it, but it's been gone for a long time. Now it's back. I've been gluten-free for 3 weeks, and I know that's not enough to fully heal (and I still have the post-gluten-free hunger), but does anyone know what this is, how to deal with it, and so on?

I am going to get blood work done as soon as I can to test for vitamin and nutrient deficiencies. People have suggested low potassium, etc. My parents, though they support my quest for answers via doctor, don't want me taking any supplements right now (they think the L-glutamine may have caused this increase in symptoms, though the symptoms began just before I actually started taking it. I had also started taking Magnesium and Vitamin B12 in the last few days, knowing that many of us are deficient in them), and think that any supplements could aggravate or be causing the condition. Hopefully a blood test will give me some answers.

Have any of you lived with these types of problems? Do you know if there is a common cause for them? Can I expect this to go away?

Well, it doesn't sound like your symptoms: Open Original Shared Link but if you had a problem up until age 18 (i.e., when you were most likely still growing) and are having it again now that you're taking magnesium supplements, it would stand to reason that the problems were and are caused by having too little calcium in your system. This is because magnesium competes with calcium to be used by the body. (That's the explanation for now; the 10 years ago explanation would be that growing requires a hell of a lot of calcium.) Anyway, something else to think about; a calcium/magnesium supplement is a better bet than just magnesium regardless.

[CGally81]

Thanks for the comments everyone. If you have more experiences to share, please do!

This happened to me after going gluten free. I also took magnesium, CALCIUM, and methyl B12. It took a couple of months to resolve. I took epsom salt baths and massage therapy also helped. I think it helps the muscles detox and activates the lymph system which also aids in detoxing the body of all the toxins associated with years of gluten injestion. You can also try cardio excersize. Sweating is so good for you and it will circulate your blood and oxygen to repair cells. Make sure you drink lots of water, I drink smart water as it has lots of electrolites to keep you really hydrated. Also, be patient I didnt truly start to feel better for 6mos gluten-free. I still have episodes, though they are pretty mild. It can take up to 2 yrs to heal. Im the same age as you, we are young and lucky that we know so we can heal. Good Luck!

Since you're also 28, I got a question for you. When did you first start having the GI symptoms in the first place? For me, it was early this year, maybe March or so, but I can't pinpoint. I do know it wasn't last year, as I distinctly remember feeling perfectly fine last Christmas vacation, despite eating the same foods.

The longer you had the symptoms, the longer it takes to get back to normal, and thus the longer you have the "getting back to normal" symptoms as well, right?

Here's something I read on another site btw:

"Symptoms are our signs along the way on our path to better health!

* low Energy * achy muscles * light headedness * headaches * flu like symptoms* coated tongue * runny nose or allergy symptoms * stomach aches * uneasy digestive tract * Fevers * feeling like throwing up * and sometimes old symptoms that have been suppressed. *"

This sounds like a good sign. Achy muscles? Yeah, I've been getting some of that. Low energy? Well, I'm hungry a lot anyway the last few weeks (it's better than it was the first week, where I was so hungry all the time it wasn't even funny. I was easily eating over 4000 calories a day!), but I do seem to be having less energy the last few days. I won't recount the whole list, but suffice to say that a number of these are happening to me. This is a good thing in the long run, right?

Anyway, I am getting blood work next Tuesday, and I hope it can provide some answers.

[k2626]

Long story short but a yr ago started to get stabbing nerve pains, muscle twitching DAILY all over-thousands, have had gerd for 3 yrs, now I have been having pancreas pain and its inflammed. I have had COUNTLESS tests and still no diagnosis. I had scans of my pancreas, it showed nothing -my dad died of pc so it scares me. I cannot help but think its all connected.....Do you get nerve pains or extreme joint crakcing too?

I'm 28. Self-diagnosed early August after several months worth of symptoms, and started going gluten-free. Saw the symptoms of gluten intolerance (fogged head, depression, inability to concentrate, the gastro stuff, etc.) disappear.

And they're still gone. But something else that's rather disturbing and scary has shown up.

When I was in high school, I used to have strange symptoms I suffered all the time, but just accepted as something I'd "just have to live with". Basically, my skin, mainly on the chest, was very sensitive to my clothes, like if I wore a shirt with a pocket or buttons, I could really -feel- it on my skin. I also had shortness of breath at times, muscle twitches (could be anywhere, sometimes an eyelid or a finger, but oftentimes it was on my stomach), and heartburn. I also felt pin-pricks on my skin, and itchiness, which could sometimes get really bad.

I lived like that for a long time, and somehow, the conditions all went away in my adult life. I never knew why. I didn't even notice when they were gone, but I know that I haven't had them for years.

Until now. Two Thursdays ago, my skin started to feel very sensitive on the chest area. Days later, the pin-pricks and itchiness returned. The muscles twitches came back after that. Now, only yesterday, the heartburn is back too.

Any ideas what this is all about? I've had this problem 10 years ago, lived with it, but it's been gone for a long time. Now it's back. I've been gluten-free for 3 weeks, and I know that's not enough to fully heal (and I still have the post-gluten-free hunger), but does anyone know what this is, how to deal with it, and so on?

I am going to get blood work done as soon as I can to test for vitamin and nutrient deficiencies. People have suggested low potassium, etc. My parents, though they support my quest for answers via doctor, don't want me taking any supplements right now (they think the L-glutamine may have caused this increase in symptoms, though the symptoms began just before I actually started taking it. I had also started taking Magnesium and Vitamin B12 in the last few days, knowing that many of us are deficient in them), and think that any supplements could aggravate or be causing the condition. Hopefully a blood test will give me some answers.

Have any of you lived with these types of problems? Do you know if there is a common cause for them? Can I expect this to go away?

[CGally81]

Long story short but a yr ago started to get stabbing nerve pains, muscle twitching DAILY all over-thousands, have had gerd for 3 yrs, now I have been having pancreas pain and its inflammed. I have had COUNTLESS tests and still no diagnosis. I had scans of my pancreas, it showed nothing -my dad died of pc so it scares me. I cannot help but think its all connected.....Do you get nerve pains or extreme joint crakcing too?

Nope, no nerve pains or extreme joint cracking.

How long did you have GI symptoms before you found out what was causing it? For me it was something like maybe ~5 months. Did you have it for a long time?

[CGally81]

I think you're on the right track with the magnesium and B12. And no, nutrients do not cause "side effects". Although it is possible to overdose on certain ones more easily than others, those two are pretty darn safe. There is no known level of overdose for B12, and too much magnesium usually just gives you loose stools. The L-Glutamine may be another matter, but you can always stop taking it and see if you notice anything. As with all supplements, make sure they're gluten-free, and free of anything else you can't tolerate.

Keep in mind that blood tests aren't very good at showing deficiencies of various nutrients. Many on this board have found supplementation helpful, even if blood tests show normal or even above normal range.

Other often deficient nutrients include B vitamins, vitamin D, potassium, iron, zinc, vitamin K, and probably others I'm not thinking of right now.

I would remind your parents that nutritional supplements differ from herbal supplements, and do not normally have negative effects because they supply things we need every day for good health. Herbal formulas and "tinctures" are very different, often supplying things we don't regularly consume (though many can be very helpful).

It would not surprise me if the symptoms you're experiencing are temporary, or are caused by hidden gluten or some other offender. Sometimes, the other ingredients in a supplement (fillers, binders, etc) can be the culprit. Always look for a gluten-free statement on the bottle, or check with the manufacturer.

Update. The tingling and itchiness has mostly gone away (I occasionally get very mild forms of it, but it's 95% gone). However, I have the annoying feeling of my skin being very sensitive, mostly on the mid to upper chest area. As in, I can feel my clothes through it. I also get muscle twitches.

Is this still part of withdrawal? I took a very comprehensive blood test, and I was told that EVERYTHING is normal. As in, vitamins (they checked), potassium and calcium (they checked), etc. So therefore, do you folks think this sensitive skin and twitching are just part of withdrawal and I'll eventually get out of it?

Bear in mind, I had these symptoms in my senior year of high school. Looking back, I wonder if I did have a dietary change then? I wasn't a huge gluten eater in my later teen years. Snacks were things like ice cream, rather than, say, cookies. Was I going through withdrawal even back then? It's possible that I was, say, only eating gluten occasionally, such as fish and crackers for dinner once in a while, then suffering withdrawal and/or symptoms for a while until the next glutening.

So I don't know if this is withdrawal, or actual symptoms of something else. Any thoughts?

[ang1e0251]

Still sounds like nerve stuff to me. How much B12 are you taking and which kind?

[CGally81]

Still sounds like nerve stuff to me. How much B12 are you taking and which kind?

Okay, I had started taking a few sublingual B12s, but stopped because I wanted everything to be "normal" (i.e. at whatever they'd be at naturally) in time for my blood test.

But since there's no upper limit on how much B12 one can take, I think I might as well go back to it.

So, you think it's still nerve-related and not related to withdrawal?

My blood tests claim everything is normal, but I'm going to see the doctor next Wednesday to talk in more detail about this.

[Penny-M]

Since you went gluten-free have you incorporated anything new into your diet? If so make sure you are not sensitive to that.

Have you done any cleansing- parasitic or anything else--they can cause some strange things to occur if your are ridding toxins from your body.

[CGally81]

Since you went gluten-free have you incorporated anything new into your diet? If so make sure you are not sensitive to that.

Have you done any cleansing- parasitic or anything else--they can cause some strange things to occur if your are ridding toxins from your body.

Cleansing? Nothing to deal with parasites.

Oh yeah, I also wake up early too. That's my other symptom. I'm hoping that'll go away with time also.

[Penny-M]

a friend of mine is a naturalpath and when we found out I was Celiac and highly allergic to gluten he recommended I do a 30 day intestinal cleansing before I started my full blown gluten-free diet. In doing this you have to refrain from eating grain, some fruits, and meat. I primarily lived on an alkaline diet with little acid forming foods. I drank alot of water and herbal teas. It was tough, but it made it easier to convert. In doing the cleansing I found I had alot more energy and didn't have all the joint pain I was experiencing. Once I went back to eating carbs and some processed I foods I found the energy level decreasing and the joint pain returned. I am now going to follow an anti-inflammatory diet, with no carbs, not grains, not lentils or beans, unless the bean is in it's orginal state. See my thread on Anti-Inflammatory diet within this section, it might interest you in trying some other things. Trust me I have tried alot of different things in my life and I am still seeking out what will be right for me. It's been a long journey for me and I hope I figure it out before I leave this world, so my son will grow up understanding how what he eats can affect his health. He's only 4 right now, and he needs to be tested for Celiac when he is 5, I have already seen symptoms in him so I limit his Gluten intake. He may be like my father who has it, and never have the problems I have had. But we keep a close vigil on him and how he responds to food.

Good luck with you and keep us posted on how you are doing.

[CGally81]

I have good news. The muscle twitches/spasms are becoming less common, and the "sensitive skin around middle-upper chest area" problem kinda comes and goes varyingly. It's not AS bad as before.

I think things may be getting better. The tingling and itchiness are like 90% gone, and sometimes come in mild, more temporary forms.

I do think that this may be part of withdrawal and I am healing. Then again, people have said that withdrawal symptoms come and go, on an up-and-down roller coaster, but mostly down as you eventually totally heal.

My hunger levels are still abnormally high, but they are much better than they were a month ago, when I was having easily 4000+ calories a day and still not being satisfied.

Considering that my blood test results came back normal for like everything (and I took comprehensive ones too, including tests for postassium, calcium, vitamins, etc.) I'm hoping that things will turn out well. I definitely had been having nasty reactions to eating gluten, which disappeared when gluten was removed (and came back after 2 accidental glutenings during my first 2 weeks) so gluten is indeed the enemy, but apparently it might not have gotten me as badly as it got other people.

So, time to sit out withdrawal, and keep eating. Thankfully my diet consists mostly of only healthy foods (i.e. chicken, fish, brown rice, bananas, yogurt, etc.). I do not have a problem with dairy or fish, and I occasionally have eggs, but they appear not to be a problem either. (I do, however, have a problem with fructose, and if I eat apples or blueberries or grapes, etc., I get intensely hungry shortly afterward. Bananas do not cause this problem. If this is caused by gluten intolerance, then it may go away and I will try reintroducing those foods next year)