Weird Symptoms After 4 Months Gluten Free...

[mesmerize]

Short history: diagnosed with graves disease (autoimmune hyperthyroid) in November 2004, then went back and forth between hyperthyroid and hypothyroid for the next year... diagnosed with celiac in february 2006, been gluten free ever since.

When I first went off gluten, things seemed to change (for the better!) very quickly... My skin cleared up beautifully right away (I always had clogged pores and little bumps on my face and elsewhere), I started feeling more "awake", wasn't tired all the time, and had fewer tummy issues.

So I was very happy, and expected things to just keep getting better. WELL... within the past couple weeks things seem to be going downhill again and I can't figure out why. Here are my symptoms:

* My "heart flutters" have returned... when I was diagnosed with celiac my doctor told me that they can be caused by a magnesium deficiency, so I started taking magnesium and they went away. But now I'm still taking the magnesium and the heart flutters are back in full force. (I asked about this in another thread recently because I was thinking it could be allergy related or something like that, but so far I haven't been able to link it to anything.)

* I've started breaking out again on my face and back (when I went gluten free, my skin was perfect for about 2 months). I'm trying to be very careful about what products I use on my face, so I really don't think that I'm contaminating myself with anything.

* My hair started falling out again much more than normal. I had this problem once before, but that was back when I was very hypothyroid. I'm only 25, it really freaks me out when my hairbrush is full of hair every other day.

* My fingernails have started splitting and peeling something awful... now I know this might seem like a minor thing, but I've always had very strong nails that could grow forever, and it seems really weird that a problem like this would appear all of a sudden.

It just seems like my body is trying to tell me something here... I just can't figure out what! Do these symptoms ring a bell for anyone?? Like a vitamin deficiency or something? (I already take a high-potency multiple, plus vitamins C, E, magnesium, & biotin)

This is just so discouraging because things seemed to be going so well when I first went gluten free, and my doctor said things should keep getting better as I heal because I'd be absorbing all the nutrients & stuff again... now everything seems to be getting worse.

~Sara~

[CarlaB]

The four month mark seems to be the time other food intolerances come out. I read that here a few days ago, and that's exactly the case for me. Enterolab told me I was casein intolerant, but I was doing so much better, I didn't get off the dairy. After four months, I was having gluten symptoms again, but it wasn't from gluten, it was from casein. Now that I'm off the casein, I'm getting better again.

[DingoGirl]

Have you had your iron levels checked? My hair JUST stopped falling out about a month ago, finally, and my iron levels are nearly normal for the first time in years.

[mommida]

It sounds like you are having vitamin deficient symptoms again. Magnesium needs to have Calcium to absorb properly. Some people here swear by liquid vitamin supplements.

Are you on a thyroid medication? The dosage may need to be adjusted for the hopefully healed gut absorbing more. I had to drop my dosage down in the first year of gluten free.

If you have developed another food sensitivity, casein or soy seems to be the next likely reason. Keep a food journal to help figure that out.

L.

[Guest cassidy]

I have somewhat of a similar story. I felt great for 2 months gluten-free. Then, my heart started pounding. When I wake up it pounds, sometimes when I eat things, but nothing consistent. It is driving me crazy.

My skin also cleared up completely for the first time in my life going gluten-free. Then the acne came back. My face isn't bad but my back has never been worse. I was going on vacation so I tried every acne cream I could find and nothing helped at all. It is even on my shoulders and upper arms now. I live in florida near the beach and I can't wear sleeveless or bathing suits.

When things started getting bad I found a new doctor that deals with natural remedies and is a medical doctor. She recommended a 3 day stool test. She found that I had no good bacteria, a bad bacteria, an amoeba and candida overgrowth. I took antiobiotics for the bad bacteria and amoeba and probiotics to regrow the good bacteria. I'm on an antifungal for the candida and have been for a month now.

All my intestinal symptoms are gone - those were better after gluten-free, but not 100%. But, my skin has never been worse and my heart is still pounding. Now we are going to check my hormone levels - just finished a 40 day cycle with a 12 day period. My thyroid is fine. I'm getting frustrated because these two symptoms won't go away.

My mom has celiac and she thinks she has candida overgrowth because her symptoms were similar to mine. She tried Threelac, some sort of natural remedy and after 2 weeks her heart isn't pounding. I'm not sure if that is the better route, or if something else is causing these problems.

I can't offer you any advice, but I'm in a simliar situation.

[BRUMI1968]

This won't be popular, and I have no evidence to back it up - it is just something I was thinking about.

What if when you first got diagnosed, you were low on all your vitamins/minerals due to malabsorption. Now, though, you are getting lots of yummy vitamins/minerals from your food - only you are still taking a high potency vitamin pill. Not to mention that the stuff they get those vit/min from isn't WHOLE FOOD (most likely, unless you're paying an arm and a leg, and even then, how can they get those whole foods into that tiny pill) - so how can it possibly be balanced. Food is a balanced system - supplements are fragmented and not a balanced system.

Just a thought - what if you stopped taking the vitamin pill for a week to see what happens?

[4getgluten]

For me, when I first went gluten-free, I started to feel really good, then bad again.... really good, then bad again. Here's what I discovered about myself. As I took gluten out of my diet, I became much more sensitive to it. So, at the beginning, I thought I was 100% gluten-free because I felt so darn good. But turns out I wasn't. When I would start to feel bad again, I would start digging for hidden gluten. I found out that I really did need to find a shampoo that didn't contain wheat. I also found out that cross contamination is an issue for me. Even though my favorite corn chips said right on the bag they were made on the same lines as wheat products... I thought I would be ok. Turns out I can't eat those chips. At first that little bit of gluten didn't bother my system, now it does.

Everyone is different, so this is just an example of what I went through. Maybe there's some gluten hidden somewhere in one of your everyday products. Or, as others have said, you may have other food intolerance. Keeping a daily diary of everything you eat, might help you pin-point the problem. I do hope you feel better again soon. Hang in there.

[loraleena]

I too have autoimmune hypo and celiac. Are you sure you are not hypo again? you usually have to be on meds for like. What tests are they doing to check thyroid. If its TSH, that test is useless. You should be having your thyroid peroxidase antibodies checked. Many people are hypo and have normal TSh levels. YOur doc should be looking at symptoms. To read more about this check out Dr.Lowe.com. He is the doctor who is treating my thyroid issues.

[mesmerize]

This won't be popular, and I have no evidence to back it up - it is just something I was thinking about.

What if when you first got diagnosed, you were low on all your vitamins/minerals due to malabsorption. Now, though, you are getting lots of yummy vitamins/minerals from your food - only you are still taking a high potency vitamin pill. Not to mention that the stuff they get those vit/min from isn't WHOLE FOOD (most likely, unless you're paying an arm and a leg, and even then, how can they get those whole foods into that tiny pill) - so how can it possibly be balanced. Food is a balanced system - supplements are fragmented and not a balanced system.

Just a thought - what if you stopped taking the vitamin pill for a week to see what happens?

I'm not totally sure I know what you mean here... are you saying that I might be getting too much out of my vitamin now? Or that the sources of the vitamins in the multiple aren't good for me?

[BRUMI1968]

I'm not totally sure I know what you mean here... are you saying that I might be getting too much out of my vitamin now? Or that the sources of the vitamins in the multiple aren't good for me?

I don't know...what I'm saying is that nature has put vitmins/water/fiber/protein/enzymes etc. in foods that balance out each other. for example, t is virtually impossible to get too much beta carotene (a precurser to vitamin A), but it is easily possible to get too much Vitamin A. You can't o.d. on it in food (you can turn orange, however), but you can o.d. from a vitamin pill.

I guess I was harkening back to a book I read long ago called, "Food and Healing" by Anne Marie Colbin. She got quite a bit of anecdotal evidence that women who were taking a lot of supplements were having certain problems, like cysts.

I also read recently about all sorts of things potentially dangerous about taking supplements. Fred Hutchison Cancer Research Center worked on a study that gave smokers anti-oxidant vitamins. It turns out that those on the vitamins had such a higher chance of getting lung cancer, they quit the study early - folks were dying. Also, it turns out that folic acid supplements and vitamin B6 supplements can increase heart attack risk in folks who are already at risk. Vitamin B might be the best case in point - these vitamins are all in relationship to one another - you cannot take one without throwing out of balance the others. Calcium is another example - the balance between phosphorous is extremely important. They've found that many women taking calcium supplements were getting too much calcium, and therefore hurting themselves not only in bone density, but in developing other problems in having to dispose of the excess vitamins they were injesting.

My point is - vitamins are not food. Some person unknown to you and more importantly that doesn't know you or your situation or your metabolic panel results or whatever, is putting (WHAT?) into a vitamin pill for us to eat. It is not something that has been studied enough to even be completely understood. When they talk about you needing Vitamin C, they can't know what vitamin C in a vacuum is - they are talking about your system in relationship to vitamin C. Putting things in pills takes all the relationship and the systems out of it.

The reason for my post was just that I thought it would be worth giving a try. We're all detectives of our own health issues here, and it was just a correlation I noticed in your post.

Maybe I'm just full of hot air. I am myself on sublingual Vitamin B12 pills, though I am planning on quitting those now that I saw my lab results and I really wasn't low. I even had high folate, but was put on folate supplements (quit when I saw my results) -- how does this make sense?

I've blathered on...but hopefully I've at least explained my position. Good luck.

[mesmerize]

I too have autoimmune hypo and celiac. Are you sure you are not hypo again? you usually have to be on meds for like. What tests are they doing to check thyroid. If its TSH, that test is useless. You should be having your thyroid peroxidase antibodies checked. Many people are hypo and have normal TSh levels. YOur doc should be looking at symptoms. To read more about this check out Dr.Lowe.com. He is the doctor who is treating my thyroid issues.

I'm pretty sure these issues aren't related to my thyroid. To go into a little more detail about my thyroid situation... When I was first diagnosed with Graves, I was not severely hyperthyroid, but enough that it was causing symptoms (racing heart, tremors, etc). My original endocrinologist (who I'm convinced had no idea what he was doing) put me on a high dose of Tapazole and my levels almost immediately went waaay down. At my next visit, when my doctor should have started cutting back on my dose, he instead told me to keep taking the same dose. As a result, I went hypo and was miserable... I gained tons of weight within a month and was so tired could barely function.

At that point I did a ton of research and finally realized what was going on, so I quit seeing my endo and started reducing the dosage of the Tapazole on my own. I felt much better, and finally quit it altogether. After that, I remained hypo for several months, then my levels were normal for a while, then I went hypo once again. Finally they returned to normal, but I was still feeling really tired and icky all the time, so that's when I started seeing my current doctor, who is WONDERFUL (she's an M.D. and a D.O. and has a very holistic outlook on health). I had my levels (TSH, FT3 & FT4) checked at this point and they were normal, and according to my doctor they should stay this way since my problems were essentially a product of the celiac all along (there's a very complicated explanation for this, but that's the bottom line).

So to summarize, my thyroid levels have been normal for at least the past 6 months or so... My antibodies (TPO and one other, I forget which) were also checked about 3 months ago and they were normal too.

I'm planning to talk to my doctor soon, I'd probably have to go in for an office visit and that always costs so much... I'm just trying to piece things together on my own first, if I can.

[julie5914]

I love the DOs with the more holistic approach. Glad you have one. I felt that way 4 months out and only felt better after I cut out dairy. Just something the try if the doc comes up empty-handed.

[loraleena]

Have you ever had your adrenal function tested?

[gfp]

This won't be popular, and I have no evidence to back it up - it is just something I was thinking about.

What if when you first got diagnosed, you were low on all your vitamins/minerals due to malabsorption. Now, though, you are getting lots of yummy vitamins/minerals from your food - only you are still taking a high potency vitamin pill. Not to mention that the stuff they get those vit/min from isn't WHOLE FOOD (most likely, unless you're paying an arm and a leg, and even then, how can they get those whole foods into that tiny pill) - so how can it possibly be balanced. Food is a balanced system - supplements are fragmented and not a balanced system.

Just a thought - what if you stopped taking the vitamin pill for a week to see what happens?

There is plenty of evidence .. perhaps the best place to look is the standard toxology sheets used in labs.

There is only 1 natural pre-transuaranic element that has no known function in the human body and that is mercury. Everything else is a delicate balance between a fatal dose and a healthy dose.

Some minerals/trace elements are worlds apart... with a huge tolerance gap and others are tiny.

The largest killer is iron supplients but only because its so popular ... there are far more toxic supplients out there everyday.

If I gave you arsenic pills you would look at me strange yet the LD50 for arsenic is way lower than selenium and every multivit has selenium.

The symptoms are usually not much different to deficiency.. usual symptoms include hair falling out, broken nails etc. etc.

On top of this the US has a very 'boring' geology in many places. The prairies etc. are monontonous so for hundreds of miles you have mineral imbalances so this tends to add to the problem. if you live in such an area then it is worth checking the levels in local produce, there is a federal website somewhere that provides the info.

The same is true for many vitamins, reasonably small doses of A, D and E are toxic.

edits

Sorry missed this

It is virtually impossible to get too much beta carotene (a precurser to vitamin A)

its certainly difficult but the australopithecus afarensis specimin (one of the extinct links between apes and man) is said to have died from retinol poisioning.

[Nancym]

Hypothyroid and hyperthyroid can have overlapping symptoms. Your heart flutters might be related to the hypothyroid, if you're hypo now. Hair falling out is another hypoT symptom. Sounds like your thyroid condition is still changing.

[Anna Isabel]

My skin also cleared up completely for the first time in my life going gluten-free. Then the acne came back. My face isn't bad but my back has never been worse. I was going on vacation so I tried every acne cream I could find and nothing helped at all. It is even on my shoulders and upper arms now. I live in florida near the beach and I can't wear sleeveless or bathing suits.

Side note on skin probs. . .

Anyone with acne out there must visit acne.org!!!!!! It is this non-commercial website that was put together by this guy who had acne and just systematically tried all the different products out there, and he shows you this method using netrogena "on the spot" benzol peroxide treatment.

No kidding, this is definitely the cure for acne. I had horrible acne from age 11 on, and went on Accutane twice! At about age 19 it became bareable, but I still broke out, and after moving to NYC 2 years ago it started to get worse (stress, dirt?) And I randomly found this website and never get one blemish ever, unless I skip my routine!

[mesmerize]

okay big update... I'm more confused than ever now.

This past Friday I forgot to take my vitamins, and for the first time in a couple weeks I had NO heart flutters (skipped beats) while I was trying to fall asleep. This is usually when I notice it a whole lot, and it keeps me awake because it's so annoying. Anyway, forgot vitamins = no heart flutters. It just seemed like a really big coincidence. So the next day I intentionally didn't take my vitamins, sorta to experiment. Once again, NO heart flutters all day.

So at first I was thinking "oh my gosh, this is it!" Then on Monday the heart flutters came back in full force, and they've been driving me crazy ever since. I've had killer headaches off and on as well. I still haven't taken my vitamins since before Friday, but now I have no CLUE what to do.

Anyone have an explanation for this??? Should I stay off of the vitamins for now or start them again?

~Sara~

[Guest Robbin]

I am at the five month mark and have been feeling really rotten too. Hair falling out again, skin breakouts, practically everything you mentioned here. I cut out dairy (casein) in March and corn last month. I also quit the vitamins because I thought there was some problem with them. I have the terrible heart palpitations and am very nervous. Something else worrisome is a tingling and numbness in the side of my face with little muscle spasms in the corner of my mouth. I was at a very low point last night with this and was up till 2 am. It seems whenever I am going through some kind of weirdness, there is always someone on here who is going through a similar problem. I am going to go back to four or five foods and start my journal all over again, before I set foot in another dr. office just to be treated like a hypochondriac. I just cannot deal with that treatment emotionally right now. Thanks for letting me vent and for sharing. Take care

[rachellek]

I am at the five month mark and have been feeling really rotten too. Hair falling out again, skin breakouts, practically everything you mentioned here. I cut out dairy (casein) in March and corn last month. I also quit the vitamins because I thought there was some problem with them. I have the terrible heart palpitations and am very nervous. Something else worrisome is a tingling and numbness in the side of my face with little muscle spasms in the corner of my mouth. I was at a very low point last night with this and was up till 2 am. It seems whenever I am going through some kind of weirdness, there is always someone on here who is going through a similar problem. I am going to go back to four or five foods and start my journal all over again, before I set foot in another dr. office just to be treated like a hypochondriac. I just cannot deal with that treatment emotionally right now. Thanks for letting me vent and for sharing. Take care

Robbin, Why do doctor's do this? I've been having the same problems with mine as my biopsy showed nothing (duh - I was too sick to do my gluten challenge). According to my gp, food intolerances "don't exist" and I don't have celiac...they think that people are stupid and that we don't know our own bodies. It's very frustrating to feel the way I feel and have no one listen to me. I understand you and feel for you, don't let your doctor get you down!