Optimistic Pessimism

[pbsml]

gluten-free since the 3rd of July now... and still trying to debate whether or not I am feeling better. I understand that it has only been 2.5 weeks, but what I find odd is that within 2 days, my stomach was feeling considerably better, and then, after 5 days, it has gone back to where it was.

My tingling fingers and sweaty feet are nearly back to normal (or at least noticeably better, to the point of me being able to play guitar again ), but there are just some symptoms that won't go away for good and keep surprising me at random times on random days.

This leads me to my questions for you all, if you can please help. Starting off, chest pains (sternum, ribs, and what seemed like heart problems) were my biggest issues, concerns. After getting that ruled out, and finding this unbearable intolerance to gluten, I felt more relaxed about how sick I was becoming, daily. At least I knew what it was, right?

Well, that being said, I've been uber-conscious about what I eat, and DON'T eat moreover. Weirdly, I seem to be falling back into the same state I was in pre-diagnosis.

I keep scaring the crap out of myself by feeling bad, resorting to thoughts that it could in fact be something worse and I'm starting to lose confidence that I have indeed found the answer.

Has anyone been here before? Felt better right away, and then started getting back into the original slump of it all? Could I be on the right track? Checking meds, all foods, liquid or solid....

My eyes simply won't stop burning, my chest unrelentingly won't stop giving me sharp pains, and sadly (mostly for my girlfriend), my stomach won't stop waking me up very early AM every day for the reason we all know...

I don't wish that anyone here can relate to what I keep feeling, however; I am sure that someone can and am hoping that I can be persuaded back into the optimistic climb I felt myself in a couple of weeks back.

Last, but certainly not least... if I were to get 'all glutened up' by accident, how long does it take from one meal with it for your body to recover again? Is it not as soon as your body has rid itself of the food?

Thanks for reading, and hopefully telling me that I'm not losing my mind!

sean

[conniebky]

If you look around on this board you'll see the exact same post from me and a few others. My first few days of gluten-free were wonderful. I ate no gluten, and started to feel bad again, so I said, "ok, everyone's fulla beans and it's not gluten".....I've been going back and forth like this for, well, I;m not gonna tell you for how long.

I too, used to get this strange bad pain in my chest, almost like I'd pulled a muscle. I've had my heart checked out, and now it only happens when I eat gluten. And my eyes burn on fire still.

Anyone on this board will tell you what you are going through is VERY normal. When I went gluten free, I couldn't sleep or anything, just stay on the road you're on.

Keep on with the gluten-free. Also, I found out later, that your body gets pissed and wants its gluten, and that causes symptoms and problems, too. Hang tough, and I mean hang REALLY tough, cuz it is NOT easy or easily understood. Just hang tough.

[T.H.]

We will all be definitely telling you that you haven't lost your mind!

1) You could be getting more sensitive to gluten. A lot of celiacs seem to get more sensitive to gluten once they go off of it, so small sources of gluten that wouldn't bother you at first may begin to give you a reaction the longer you go 'gluten free.' Also, are you checking for gluten ingredients, or looking for foods that list themselves as gluten free? Many foods that don't contain gluten ingredients can still have gluten. Like, say, if they are run on a machine that sometimes processes gluten foods, residue can be left behind and contaminate all your non-gluten food. For some people, this doesn't seem to bother them much, but many of us have problems with it. You generally have to call the company or sometimes google other celiac's posts to find out what's safe.

Ways you could be getting low levels of gluten:

1. Any of your gluten-free products, as to be gluten-free they need to be less than 20 ppm of gluten, but not zero ppm. Some of us celiacs can be sensitive enough to react to less than this. You may need to ask if any of the meds, foods, etc... you are eating are gluten free AND do they have anything that is derived from wheat, barley, or rye. I'm sensitive enough I have to avoid anything that is derived from wheat, because I still react to many of them, even if they test as gluten free. Also, if you are very sensitive? Anything wood or plastic, or teflon if it's been scratched, or cast iron if it's still seasoned, can have gluten that is being released back into your food.

2. Non-food items. Many construction products have gluten, like dry wall, so if you inhale the dust, you can get glutened as you'll swallow some of that. Tea bags sometimes get sealed with starch (can be gluten). Liptstick, makeup, or chapstick, even if it's from someone you kiss, can give ya gluten. Same with lotions or anything on the skin, if it gets in your mouth. Cat litter dust that you might inhale, shampoo if any gets in your mouth when you rinse your hair, toothpaste or mouthwash, and so on. Anything that gets in your mouth or even on your lips, essentially.

Another possibility is that you might have other food allergies. Many of us have other food issues that our celiac disease masked, and I know for myself, they don't show up as hives or itching, but somewhat similar to symptoms like getting glutened. Mine showed up about day 2 after going gluten free. I mention this partly because one of my symptoms from other food issues has been heart pain. It turned out to be this condition: Open Original Shared Link

This is something that doesn't involve the heart, although the symptoms all seem to be the heart itself. It's actually caused by inflammation of where the ribs connect to the sternum, and it goes away once the inflammation does - takes a few weeks to totally heal up. I was admitted to the ER with a possible heart attack because of the symptoms, and they couldn't figure out what it was until I lucked out and found a doc who knew of this condition and was familiar with celiac disease. I have since met many other sufferers of allergies who developed this when their systems got inflamed after eating something their body reacted to. I imagine both gluten and allergens could inflame things, however.

Oh, as for recovery time? Afraid it's longer than it takes to get rid of the food from your body. Your body gets damaged, so it needs to heal. It can take a few days at the least, or up to 2 weeks, depending on your body and how much gluten there was. Also, you will be immuno-compromised until your body calms down, which I believe takes a few days at least, as well.

It's hard at first to figure it all out, but it'll start to make sense eventually. :-)

[sa1937]

gluten-free since the 3rd of July now... and still trying to debate whether or not I am feeling better. I understand that it has only been 2.5 weeks, but what I find odd is that within 2 days, my stomach was feeling considerably better, and then, after 5 days, it has gone back to where it was.

Has anyone been here before? Felt better right away, and then started getting back into the original slump of it all? Could I be on the right track? Checking meds, all foods, liquid or solid....

Thanks for reading, and hopefully telling me that I'm not losing my mind!

sean

Sean, if you're losing your mind, so am I. I felt amazingly well within 3 days of going gluten free and then after a few more days, my symptoms started again. I've now been gluten free for slightly over 4 months. For me that means daily D. I've checked everything, including meds, replaced a bunch of kitchen stuff (including buying a new toaster), cleaned out my pantry, etc. and I can't put a figure on what my problem is. It's very frustrating.

I have a Dr. appt. this afternoon and will find out the results of some blood tests and a RAST test checking for basic food intolerances. No clue what will become of that but feel I'll probably have more questions than answers, which will probably lead to more testing. At least it's a starting point. This disease is a total pain in the a$$!

[pbsml]

Thank you all for writing...

I'm curious as to whether or not I might be suffering from asthma at the same time as going through this new gluten-free lifestyle. I left for a week vacation on the 4th of July and that is certainly when I was feeling the best. In a way, that makes me wonder if there might be something in my own place that makes my symptoms worse. I have no doubt that being gluten-free is better for me. As I said before, i did notice improvements quite quickly, and right when I was getting back, everything seemed to get a little worse again. Slowly, but surely, I find myself near my original state before I went gluten-free.

Given how long this can take certain individuals to heal makes me want to stay gluten-free forever, but just like everyone else, I only want to feel better.

I have made an allergy/asthma testing appointment for tomorrow, so I'll have to see what comes from that.

I might just need to be more diligent when cleaning my house. I've read elsewhere that where you live can affect your symptoms differently too... whether that be due to humidity, average temperature, and even general food available in your area. I assume this would most affect asthma symptoms, or allergy induced asthma anyway, but it's worth me looking into at least. After all, I live in Southern Florida, and at this time of year, it's more humid than most places in the country. I'm originally from Canada, and have lived up north the in the US too and before moving this far south (5 years ago), I never experienced any of these signs.

Sa1937... I'm curious to know what you find out yourself from your testing. I myself have had a lactose intolerance for the past 10 years, and oddly enough, that progressed into a full-blown dairy allergy over the years. I don't know if that's just because my body got used to living dairy-free and then didn't know what to do when i ingested lactose free dairy products, but it certainly was a start to inhibiting my food intake. I always though that was a pain until a few weeks ago when going gluten-free. That's a tough combo when going out to restaurants. Here, in West Palm Beach, I'm finding that if I go to a restaurant, most servers look at me like I have two heads when I question whether or not a dish has dairy or gluten in it. You're spot on. It's a gigantic pain in the a$$.

Thank goodness for this site. I was thinking last night that it would be cool if there were local groups for people with our restrictions to just get together and party on. How accommodating would that be??? I'm 30 years old now and plan on living til 100, so I just hope I'm not too late finding all of this out to get there.

Preach on my fellow gluten-free preachers!

[conniebky]

What is a RAST test? Is this different than the skin scratch tests?

[sa1937]

What is a RAST test? Is this different than the skin scratch tests?

Connie, It's a blood test rather than a scratch test. No clue whether it's any good or not.

Anyone else on this forum have any input on this type of testing??? I know there was a thread about food allergy testing but, alas, my other computer crashed about a week ago and is now in for replacement of the hard drive...

[pbsml]

good ol' wikipedia...

Open Original Shared Link

[conniebky]

good ol' wikipedia...

Open Original Shared Link

thank you all. I read the link. I'm going to sign up!

[rdunbar]

just be patient and stick with it. I've had a little tingling in my right arm and shoulder the last few days, and this is after @ 4 months gluten-free; still it's not nearly as bad as it used to be, I was'nt able to ride my bike before.

I figure i must have gotten some cross-contamination or something.

I have Dermititas Herpetiformis on my scalp, and it's been getting better, but I understand that it can take up to TWO YEARS to go away if you can manage to be gluten free; at least you're not in that boat! and it's like torture, too!

going gluten free is not like waving a magic wand, but you are getting results, and you will continue to get results if you keep on it,

There are antibodies in your system, and they will slowly go away, and your body will stop producing them in the absense of gluten/(casien), and you will heal up, just be patient!

[julandjo]

This leads me to my questions for you all, if you can please help. Starting off, chest pains (sternum, ribs, and what seemed like heart problems) were my biggest issues, concerns. After getting that ruled out, and finding this unbearable intolerance to gluten, I felt more relaxed about how sick I was becoming, daily. At least I knew what it was, right?

Well, that being said, I've been uber-conscious about what I eat, and DON'T eat moreover. Weirdly, I seem to be falling back into the same state I was in pre-diagnosis.

I keep scaring the crap out of myself by feeling bad, resorting to thoughts that it could in fact be something worse and I'm starting to lose confidence that I have indeed found the answer.

Has anyone been here before? Felt better right away, and then started getting back into the original slump of it all? Could I be on the right track? Checking meds, all foods, liquid or solid....

My eyes simply won't stop burning, my chest unrelentingly won't stop giving me sharp pains, and sadly (mostly for my girlfriend), my stomach won't stop waking me up very early AM every day for the reason we all know...

Boy am I glad to have read this! I've been having SO much chest pain, and have visited the ER, my regular doctor, and most recently a cardiologist. I'm 31, and I was absolutely convinced I have a narrowed artery or other cardiac issues. The pain is often a dull pain radiating across my left chest and shoulder, down my left arm. At times it's very sharp and feels like a pin is being pushed into my heart. I very easily get myself all worked up over this pain, which only makes things worse. I was cleared by the cardiologist last week, which has put me at ease.

I've also been having strange shooting pains in my head and had a whole week of numbness and tingling in my right hand and foot. My doctor was suspicious of MS, so I had an MRI of my head last week too. Thankfully, it's all clear!

So yeah. I feel you. I've been scaring the crap out of myself on almost a daily basis. My body is doing things that make no sense and that mimic some really serious, scary things, ya know? Every doctor I've seen, even my GI, pooh-poohs my suggestion that this could be celiac-related. But I was at a celiac support group meeting last night and they gave me a handout about magnesium deficiency. Have you read much on this? Holy man do us celiacs need to know this stuff! Look into it and see if it doesn't match up with a lot of what you're experiencing. I called my GI doctor and said I want to be tested for this... we'll see what happens. Apparently it's much more involved than a simple blood test.

Anyway, just wanted to tell you you're not at all alone, and offer the magnesium info!

[sa1937]

Sa1937... I'm curious to know what you find out yourself from your testing. I myself have had a lactose intolerance for the past 10 years, and oddly enough, that progressed into a full-blown dairy allergy over the years. I don't know if that's just because my body got used to living dairy-free and then didn't know what to do when i ingested lactose free dairy products, but it certainly was a start to inhibiting my food intake. I always though that was a pain until a few weeks ago when going gluten-free. That's a tough combo when going out to restaurants. Here, in West Palm Beach, I'm finding that if I go to a restaurant, most servers look at me like I have two heads when I question whether or not a dish has dairy or gluten in it. You're spot on. It's a gigantic pain in the a$$.

Well, that was a complete waste of Medicare dollars! The RAST test I had was for the basic foods (milk, wheat, eggs, shellfish, peanuts, etc.) and everything came back negative. Obviously it was not the right test, if there is such a thing, as it was for IgE allergies. I already know I have celiac as I was diagnosed with a positive celiac blood panel followed on April 9 by an EGD/intestinal biopsy (also positive).

I do need to add Vitamin D3 and my Dr. suggested a probiotic, which I bought yesterday afternoon at my local health food store. It's a once-a-day capsule that contains 14 different bacteria and needs to be kept in the fridge. I'm hoping it works! In the meantime I plan to eliminate any prepared foods entirely and shop the outer rim of the grocery store. If that doesn't work, it'll be time to go on an elimination diet to see where that might lead. I'm hoping I don't have to go that route but I don't think I should be having daily D over 4 months into a gluten free diet. That really is my only problem except for a short time after going gluten free and then wham! It came back again as it does for so many of us.

Let us know how you make out on any testing you might have...

[rdunbar]

look up fibromyalgia; tingling, pain in tissue, muscles, often effects the body asymetrically, that is on one side or the other.

curiously enough, when I googled it, many sites claimed that there is no known cause. LOL. gluten isn't a known cause??? when will the medical profession ever get it?

and yes, calcium/magnesium, D3(5000iu), and sublingual B12, probiotics, and fish oil for omegas are crucial!