Cant Function Safely After Glutening

[Kquad]

I was diagnosed a few months ago. The test was Iga positive but IGg negative. Always had a nagging suspicion that I really did not have Celiac. Not anymore. I have been very careful and stopped eating out. At work once had fruit and found out they had also cut muffins with the same knife. That resulted in 2 days nausea. These past few weeks my mother-in-law came to visit. My wife wanted to make fancy salads and bought pecans ( clearly stating they contain wheat, we saw too late ). She made this salad several times. The first thing I noticed was nausea and I felt like I had a bowling ball in my abdomen a few hours later. Hello bathroom,and then the dizziness started again.

I thought I was getting sensitive to other foods and cut back on almost everything. Unfortunately, I kept eating the really good salad about every 5 days. In the middle of the visit I drifted into a curb and now I have 4 new tires and rims. I was diagnosed after a major accident. The dizziness and inability to concentrate make it hard for me to function. I earn my livelihood in my car. Before this I had not had an accident in 25 years ( I was 16). The nausea seems to last a few days, the fatique and dizziness are better than a week. I am real careful, but you know it will happen again. Has anyone ever tried steroids after being glutened for a short term fix. I need to be safe. My wife feels terrible and will be even more careful

[Kquad]

well the dizziness was getting better, but still a problem after a week. I had some steroids from bronchitis left around the house. I took it for only 2 days, the dizziness is practically gone and I have my energy back. I realize I may have to stay on longer if I take it earlier in the process, but, I can work safely. Here is to not having to do it often. It seems to be a trade off I am willing to make from time to time.

[Skylark]

I'm glad to hear you found something that works. I agree steroids aren't something to take often, but it beats having an accident!

[T.H.]

So glad the steroids worked for you! I have pretty much the same stuff, dizziness and mental stuff, but I react to stuff in the steroid brands the doctor has tried with me, so I'm out of luck, sadly.

At this point, with no other recourse that I can think of, if I am the sole adult responsible for my kids and we're out of the house, I don't take any chances, even if that means not eating.

I really thought I could 'handle' it, at first, but then I got glutened when we were out hiking, just me and 4 kids, up in the mountains with no cell phone reception, and away from other hikers. I could only walk by hanging onto trees and the older kids, and then they had to just play around in a picnic area for a few hours until I was coherent enough to drive us back home.

Looking back, I don't think I WAS coherent enough to drive, considering some of the thoughts going through my head. I just thought I was, which is actually a bit scarier.

It's really terrifying when you realize that you can become mentally unfit to use a motor vehicle when you're in the middle of USING it, isn't it?

[Kquad]

So glad the steroids worked for you! I have pretty much the same stuff, dizziness and mental stuff, but I react to stuff in the steroid brands the doctor has tried with me, so I'm out of luck, sadly.

At this point, with no other recourse that I can think of, if I am the sole adult responsible for my kids and we're out of the house, I don't take any chances, even if that means not eating.

I really thought I could 'handle' it, at first, but then I got glutened when we were out hiking, just me and 4 kids, up in the mountains with no cell phone reception, and away from other hikers. I could only walk by hanging onto trees and the older kids, and then they had to just play around in a picnic area for a few hours until I was coherent enough to drive us back home.

Looking back, I don't think I WAS coherent enough to drive, considering some of the thoughts going through my head. I just thought I was, which is actually a bit scarier.

It's really terrifying when you realize that you can become mentally unfit to use a motor vehicle when you're in the middle of USING it, isn't it?

Sorry the steroids cause you problems. There are many generics and other forms of steroids you can try. I know taking something and waiting for a reaction are no fun!!

[T.H.]

Sorry the steroids cause you problems. There are many generics and other forms of steroids you can try.

Yeah, I keep hoping! So far, there is a common binding agent that was in all the ones I reacted to. My doc has been looking, along with the pharmacy rep, and they couldn't find one that didn't have that ingredient in the excipient list - I think that's the right word, LOL.

How sad is it that the steroid is fine, it's just the crap they add on with it that does us in? Oy.

We've been trying to discuss the issue with a compounding pharmacy to see if they can help, but it's been slow going for some reason. Hearing how it's worked for you, though, I may push harder for the discussion to keep going now!

[AVR1962]

The dizziness and inability to concentrate make it hard for me to function. Has anyone ever tried steroids after being glutened for a short term fix.

Realize for me, I have a gluten intolerance but became too sick to make it thru to my Celiac testing. For me, the balance issue is my biggest indicator that I have had glutens, my concentration, memory and even my speech are affected. What has helped me is taking an Advil as soon as I think I may have come into contact with gluten. I don't take anymore than 2 a day when I have symptoms.

I have a friend who is Celiac who has taken steroids and it has helped her. She also uses activated charcoal which you can google and read about if you have never heard about it. I personally think I might try the activated charcoal.

Curious question aside from the topic......were your docs able to link your dizziness and lack of concentration to Celiac/gluten intolrance? or is that something you figured out for yourself?

[Kquad]

Realize for me, I have a gluten intolerance but became too sick to make it thru to my Celiac testing. For me, the balance issue is my biggest indicator that I have had glutens, my concentration, memory and even my speech are affected. What has helped me is taking an Advil as soon as I think I may have come into contact with gluten. I don't take anymore than 2 a day when I have symptoms.

I have a friend who is Celiac who has taken steroids and it has helped her. She also uses activated charcoal which you can google and read about if you have never heard about it. I personally think I might try the activated charcoal.

Curious question aside from the topic......were your docs able to link your dizziness and lack of concentration to Celiac/gluten intolrance? or is that something you figured out for yourself?

Some of the MD's were terrible. One told me that since my B12 was fine, she could not see any reason for me to have mental problems or dizziness. Then told me to stick with gluten a while, because 1 of my test did not indicate celiac ( I was IGA positive and IGg negative). Tried saying IGA was the more important test, but I saw talking was not going to help.

Any way, dizziness and Nausea are my 2 worst symptoms. The nausea goes a way first, the dizziness lasts what seems like forever. I do believe I am getting occasional cross contamination on a very small level in the home. The family is slowy going gluten free, but with kids and family using the kitchen, old utensils and pans ( slowly replacing them) it is hard. Any one else have dizziness lasting longer than a week?

So no, the MD' were no help. I am a nurse and can get MD's to give me steroids, but probably not my MD. Switching to a nurse practitioner soon. I still do not feel as good as I used to, but it has only been since March.

[AVR1962]

Some of the MD's were terrible. One told me that since my B12 was fine, she could not see any reason for me to have mental problems or dizziness. Then told me to stick with gluten a while, because 1 of my test did not indicate celiac ( I was IGA positive and IGg negative). Tried saying IGA was the more important test, but I saw talking was not going to help.

Any way, dizziness and Nausea are my 2 worst symptoms. I still do not feel as good as I used to, but it has only been since March.

I'm just a month ahead of you, my adventure started in Feb. I was off balance every single day for 5 months. I was not getting nausea with it but my depth perception was messed up....when I would drive it felt like the lanes were too small and I was having trouble staying in the lane. My memory loss was like I had premature Alzheimer. I was having muscle spasms and twitches, terrible stiff neck, blurru in my eyes and was constantly blinking to try and clear it, and an awful buring in the stomach.

Docs had no clue....they ran so many tests, I'd never been to a doc so much as I was in Feb & March. I was sent to a specilist and had to take copies of my labs and that is when I found out that I had all these vitamin deficeincies doc had not mentioned. I started taking vitamins for everything that was low....the flitches and spasma went away.

A family member who has a gluten intolerance asked me to try a gluten-free diet and that's when I started feeling better, that was April but my diet was not clean. Did alot of reading and once I got it figured out and followed it very strictly I was about anothr month before the other symptoms went away.

I got dosed this past weekend and so far it has been 4 days of off-balance and memory issues again.

[Kquad]

I was looking on the INTERNET, because the dizziness has returned slightly. I can still function. There is something called gluten ataxia. One sufferer stated she was dizzy for 6 weeks after exposures to gluten. It does respond to diet, if slowly. It can also be sporadic.

In light of this, my wife just announced, the house will be gluten free. She said the gluten free bread I am baking is actually good now. This from a guy who burned toast a few months ago.

[AVR1962]

I was looking on the INTERNET, because the dizziness has returned slightly. I can still function. There is something called gluten ataxia. One sufferer stated she was dizzy for 6 weeks after exposures to gluten. It does respond to diet, if slowly. quote]

Yes, the is my biggest issue and I have tried all kinds of things to get it to stop. Ginger pills do not work, motion sickness meds do not work. I have a seperate post here asking if anyway knows what, besides the reaction to wheat, causes the balance issues (ataxia). Some of my issues came from vitamin deficiencies due to the what intolerance but I think may have something to do with nerve damage. I really cannot get enough info on the support when I do searches and my Celiac book doesn't go into any depth about it.

I do know it will go away with a very strict, clean diet, as I have got it to go away. Any glutens or high fructose will bring it right back. Currently I am on day 5 of off-balance for getting dosed last Sat.

You mentioned you have trouble with nausea also when you get dizzy.....do you have trouble with memory at the same time?

[T.H.]

I really cannot get enough info on the support when I do searches and my Celiac book doesn't go into any depth about it.

...You mentioned you have trouble with nausea also when you get dizzy.....do you have trouble with memory at the same time?

Sadly, research into gluten induced neurological anything are still really in the early stages. Most doctors don't know about it. There's very few studies on it, so honestly? From what I've seen written about it from doctors, it seems like there is a LOT of guesswork on the part of the doctor, about what causes it, how it manifests, how it works, and what makes it go away. Sometimes we can luck out and get a doctor who is willing to treat a condition that is on the fringes of knowledge, and who is flexible, and willing to learn as he goes along, so he can work with his patient to help them with their symptoms.

Most, of course, are nothing like this and aren't a lot of use when you end up with a condition that isn't well studied already.

At this point, I've heard information on the forums that have been more useful and more in depth than anything I've seen put out by a doctor. There are issues I've heard here that I definitely had, and I never saw them on any literature. I don't know if I would have made the right connections without this site!

For myself, I definitely get the vertigo and the fuzzy thinking at the same time. My memory gets progressively worse the more low level gluten I get. I get nausea only because the vertigo is so bad I get motion sick just trying to sit up or walking.

Frustrating, ain't it?

[Kquad]

Everything I have read about gluten ataxia, is that diet can control it in most cases, but it can last for weeks. Yes, my memory gets worse, but when I was diagnosed, i was having to make cheat sheets at work to remember what i had to do. So I have improved since then. The gluten definitely throw off my memory, but I am so glad I can now remember, who I saw the day before. My nausea is not vertigo related. It come before it.

I have a friend who has celiac and has almost no symptoms with gluten. So unlucky to react to even the smallest amount!!! The vertigo and fuzziness vary in intensity randomly.

[GottaSki]

I've got similar symptoms - thought I'd note that my sensitivity to CC got worse the longer I was gluten-free. Our family's kitchen went totally gluten-free in steps. First we had separate areas, toasters, etc. Slowly we found it was easy to prepare most things gluten-free so we only had a few items left for the gluten eaters (bread, cereal, etc). Eventually everyone went gluten free in the house - my husband and one son still get their gluten fixes outside the house.

Glad the steroids are working for you - I don't tolerate them well. I do take digestive enzymes when we eat out which seems to minimize the CC effects.

[Kquad]

what kind of enzymes? I do not eat out, but may like to try them if I find myself forced to. I must be following the diet pretty well. Just had my Tissue transglutaminase IgA redrawn. It is now in the upper normal range after 5 months gluten free.

I can't enjoy eating out, knowing I may be sick for weeks if someone is careless. It just does not seems worth it.

[GottaSki]

We don't eat out much...maybe once every few months for the reason you mentioned - it's just not worth getting sick. When we do eat out it is usually an occasion with family/friends that we don't want to miss and I never enjoy myself - hoping that will improve at some point.

Now Foods - Super Enzymes -- I take 4 before a restaurant meal. I used to take 1 before each meal when there was still gluten in our house.

[Kquad]

We don't eat out much...maybe once every few months for the reason you mentioned - it's just not worth getting sick. When we do eat out it is usually an occasion with family/friends that we don't want to miss and I never enjoy myself - hoping that will improve at some point.

Now Foods - Super Enzymes -- I take 4 before a restaurant meal. I used to take 1 before each meal when there was still gluten in our house.

I have heard of glutenease, is that similar?

[GottaSki]

I have heard of glutenease, is that similar?

I'm not familiar with Glutenease - maybe some others have used it?

[AVR1962]

what kind of enzymes?

I use ImmuneCare Glutanase Plus if I go out to eat and do not know what is in my food and want to try and be as safe as possible. It will work for me if I get a small dose like with a gravy and of course I'm pushing as much aside as possible. But I cannot eat breaded foods or bread.....tried it last weekend, that how I got dosed. I had no stomach issues, no digestive issues and for that I found it works real well but it does nothing to prevent my off-balance I'll get from glutens.

[AVR1962]

Now Foods - Super Enzymes -- I take 4 before a restaurant meal. I used to take 1 before each meal when there was still gluten in our house.

I have tried ImmuneCare Glutenase Plus and was pretty empressed with what it was able to do for my stomach and digestive system but it did not prevent the off-balance issues. Curious if you normally would have balance issues, foggy memory when you had glutens before you found Now Foods Super Enzymes?

[AVR1962]

It's actually nice to find others with the same symptoms. Does anyone here also have problems with a pins and needles stabbing feeling between the toes? Or with feet that feel swollen or don't want to move in the morning when you get out of bed? This is another symptom that I am having trouble shaking. Near as I can find from my reading it may be due to another defiency and can be corrected with L-carnatine. Input appreciated.

[Kquad]

It's actually nice to find others with the same symptoms. Does anyone here also have problems with a pins and needles stabbing feeling between the toes? Or with feet that feel swollen or don't want to move in the morning when you get out of bed? This is another symptom that I am having trouble shaking. Near as I can find from my reading it may be due to another defiency and can be corrected with L-carnatine. Input appreciated.

Sound like you might have some neuropathy. That can be serious, let the MD know. I do not have those symptoms. I have memory loss, inability to concentrate, vertigo, and walls moving into my way complications. My coordination is off, got to get better, I already missed a ski season.

Update on the steroids, the short term use had a short term effect. Within 3 days I am back to where I was. Went back on them yesterday. I should start to feel better by tomorrow am, in time to take my youngest to her first day of Kindergarten. This is going to be harder than I thought. I am just hopeful, that I will never be dosed with gluten 3 times in a short period again. I am even having trouble typing now!

[AVR1962]

Sound like you might have some neuropathy. That can be serious, let the MD know. I do not have those symptoms. I have memory loss, inability to concentrate, vertigo, and walls moving into my way complications. quote]

So far the docs have not been much help. What can they help me with? I'm alittle clueless as they have not been helping me with this at all. I do think I am having troubles with vertigo.....just somereal strange things associated with my eyes and balance.

Good luck with skiing.....I cannot even begin to imagine trying to get down a slope. I like to jog but that's not possible when I have been dosed.

[Kquad]

at least let the MDs know to rule out other causes, such as diabetes, I would never ski in this condition either

[AVR1962]

at least let the MDs know to rule out other causes, such as diabetes, I would never ski in this condition either

Good point, that is one thing they have managed with all the tests!