Weird Reaction

[RichieF]

Hi All.

I've been Gluten Free for the last 12-13 months and love it. I'm 51 and in good condition health wise according to my tests. I train with weights and decided to try "Vitargo" which is a post workout carbohydrate drink made out of special kind of Barley.

It says Gluten Free on the label and I have had it before becoming Gluten Free but I think this time it has done a real number on me.

Saturday morning I had a serving after a workout then had diarreah, nausea, and a very unsettled, restless feeling but this didn't start for at least 6 hours after drinking it. Constant diarreah after everything I ate.  Three horrible days past and I got my appetite back and started feeling better again.

I didn't even think of the Vitargo as being the culprit. It said "Gluten Free" !!!!!!!!

Wednesday had a workout, had another serving and again, 6 or so hours later I felt a real weird type of feeling that came from nowhere. Nausea, diarreah, restless and a shaky, trembling type feeling through my arms and shoulders which is quite scarey. My wife listened to my heart which was going quite fast so off to the hospital we go. It was then she read on the Vitargo website that it was gluten tested to be below 20ppm...I think that's the term they used. I put 2 and 2 together and felt better mentally because I thought that had to be it. They checked my heart and blood pressure and all was good.

Friday morning now and I've had no appetite, feeling nausea and that shaky feeling and a feeling of dread or doom and gloom, depressed (not sure how to describe it properly) Very unsettled and can't relax. Just lost that spring in my step. Sometimes it's a little hard getting a full breath but I'm not short of breath...if that makes sense.

This reaction happened a few months ago to but not with the Vitargo (can't remember the circumstances then) so my question...

Has anybody else had reactions like this after unknowingly eating gluten or is it a normal reaction to eating gluten after not eating it for some time or should I be looking at another cause for this? It's really bothering me a lot.

Many thanks for your replies.

Rich

[flowerqueen]

Hi Richie, 

I've not heard of this drink before, as I live in the UK, but any drink made from barley is something you should avoid.  There's a brand in the UK that makes lemon and barley water and orange and barley water and Coeliac UK say it is not safe for people with Coeliac disease.  (Our labelling laws in the UK changed a couple of years ago).  You say the drink you had was under 20 ppm, which is acceptable (usually) for coeliacs, but a lot of people are super-sensitive to gluten even in very small amounts.  I recently had a similar problem with something which was supposed to be okay for coeliacs, but when I checked the website of the product, for all it said there were no gluten containing ingredients, it was produced in an area where gluten was present, which was enough to put me off and must admit, the symptoms you describe sound very much like I experienced at the time.  (Personally I'd be avoiding that particular drink like the plague from now on).

One other thing though,  have you checked the ingredients to see if there could be anything else in it which you may be intolerant to? 

[cristiana]

4 hours ago, RichieF said:

a feeling of dread or doom and gloom, depressed (not sure how to describe it properly) Very unsettled and can't relax. Just lost that spring in my step. Sometimes it's a little hard getting a full breath but I'm not short of breath...if that makes sense.

Hi Richie

I've put the above in quotes as you have described in the first and second sentence how I felt six months prior to my DX.   In my own case, in the end I concluded it was anxiety after consulting Dr Google!  It was such an alien feeling to me, I couldn't even think what it was, particularly as life was pretty good at the time. 

Anxiety is a problem for a lot of celiacs prior to diagnosis, and often after glutening after going gluten-free.

You mention breathlessness, this of course can be for reasons such as anaemia (again a common celiac problem, I had this prior to DX) but of course also can arise if you are anxious.  

Re 'gluten free' - Flowerqueen is right, from what I have read on this forum some people really do seem to react with less than 20ppm.   

But perhaps some other things to consider...  could there be something wrong with the batch you have consumed?  Might it be worth contacting the manufacturers?   That said, you could , as Flowerqueen suggests, have a problem with another ingredient, in the product or something else you consumed.

In the past I have had a terrible reaction - fever, trembling, diarrhea, stomach cramps that lasted up to three hours the last three times I ate..... broccoli, of all things.    Who would have thought that possible?  I have often thought I should try it again, just to be sure it was the broccoli, as it is a 'super food' that I ought to have in my diet, that I like very much, but the thought of having such a reaction again has put me off.

I do hope you will find some answers soon.  

[flowerqueen]

Hi Cristiana,

You are quite right, there could be something wrong with the batch. I have often wondered this myself when I've had symptoms. A lot of manufacturers recall products when they find contamination issues, I often wonder though, how many products 'sneak' under the radar and no-one knows for sure; it could be the reason why so many of us wonder what we did to get 'glutened'. 

[RichieF]

Thank  you Flowerqueen and Cristiana for your replies.

I'm actually feeling much better today. I got my appetite back yesterday lunchtime (a few hours after I typed the original post) and managed to keep in/hold down some chicken and lettuce!!!

I also had a "fat" coffee (as I call it) before work with MCT Oil and butter (your probably going "yuk" right now but it's really nice...really haha) and started feeling a bit better after that. The nausea went away almost immediately after that although just the thought of having all that fat nearly made me sick but I just wanted to get back to normal asap. I usually have a lot of fat in my diet anyway which is normal for me so the coffee choice isn't unusual. Plus it was also the third day which was when I started feeling better after the first time.

I didn't eat til lunchtime and I was good and hungry by then so I knew I was coming out of it. That nausea and trembling feeling is something I don't want ever again. I think after the workout and tearing down muscle tissue (which is a form of stress) and then not being able to hold the nutrients in for repair affected my nervous system. My theory only but to me it makes sense.

Although Vitargo also comes in flavors I always get the Natural / Unflavored one so the barley is the only ingredient. As for there being something wrong with that particular batch, well, you be on to something there. Also I'm not knocking the product because as I said, I have used it before and it did exactly what it was supposed to do. But, I will never have it again.

Cristiana, my last blood test revealed I had slight anaemia which really surprised me with the amount of red meat I've eaten during my life and the anxiety thing is also new as I'm usually a happy, positive person. Life is good but after this recent reaction I think it is an indirect cause of the glutening. I'm also surprised at how sensitive I've become to it and how quickly. Also what is DX?

I also follow a FODMAP eating plan (I can give you more info if you haven't heard of it) which also eliminates certain foods. It's a plan directed mostly at IBS but is well worth looking into if you are suffering any gut health, digestion issues or any ailment you may have which you can't get to the bottom of. Broccoli was one of the foods which I have cut back on and I've eaten HUGE amounts of broccoli so it is a superfood for some but apparently not for others. (I even think I read somewhere it has MSG naturally in it) It's hard to find any bad articles on broccoli so this also really surprised me. It also answered a few other questions I had.

Many, many thanks again to you both for your replies. It actually settled me just reading them. I'm glad I found these forums so I don't think i'll be a stranger around here for long.

 

Richard

[cristiana]

3 hours ago, RichieF said:

 

Hi Richard

Glad you are feeling better!  

Sorry - DX is an abbreviation for diagnosis.  

Thanks so much  for the info about MSG, broccoli and IBS.  Like you say, there is v. little bad press about broccoli. My aunt, who is a farmer's wife, put forward another theory that it might not have been the broccoli itself but rather some insecticide a farmer sprayed on it.   I just can't bring myself to try organic broccoli however...  Thankfully cauliflower is fine.  I just can't figure it out as I thought they were the in the same vegetable family?  So maybe it is MSG.

Regarding anemia, there can be a link with iron anemia and anxiety.

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And I was definitely breathless before my diagnosis; I remember finding myself  walking up a hill behind a  huge crowd of friends on a church walk, and many of them were at least 20 years older than me, and wondering why I was in last place!

My B12 levels were very low at DX and I found B12 supplements helped enormously with anxiety.   I remember drinking Berroca and feeling so much better within hours of drinking it, on more than one occasion, before even understanding the link.

I have just been told however that I can't take any more iron because my hemoglobin is on the high side.  It is a good thing my doctor was monitoring my supplementation as I gather too much iron can be dangerous.  Have you been told to supplement by your doctor?  If you are supplementing make sure you get your levels monitored.

All the very best - and welcome to the forum!

 

 

[RichieF]

Yes, I was surprised about the MSG in broccoli as well. I just had a quick look now as I couldn't remember where I had read it but some mushrooms have it to. A Google search will bring up a few things. I always just thought MSG was an artificial food enhancer!! Insecticides are still a big possibility though. Why do you not want to try organic? We buy organic when we can and fruits and veges that are in season are usually the best and cheapest. 

Thank you for the link, Cristiana. Very helpful. I have an appointment with my Naturopath in a couple of weeks and going to have a blood test done before that. She is excellent. Very knowledgeable and loves her work. Until then I'm not taking any supplements. I generally eat pretty well anyway so we'll see what she says.

In the past I have used B12 injections (aka Neo Cytamen) which I found much better and safer than taken orally and very cheap. The energy boost was very noticeable. I didn't know it helped with anxiety though. She has also had me on Magnesium, Probiotics and Vitamin D3 and I also make my own Liver Tonic (Milk Thistle, Dandelion Root Powder, L-Glutamine, Taurine and Choline Bitartrate) which I use from time to time for a quick detox.

Too much of anything can be bad but I think iron can be not real good in large amounts. Deficiencies can be related to gut health and/or competing for absorbtion with something else you may be taking I found. I'm no expert though but just a few things I've picked up during research.

My normal GP told me to just eat some more red meat but I want to speak to my Naturopath first before supplementing. Her knowledge on nutrition is a bit more up-to-date. 

I was just sitting there at lunch today after feeling great all morning and had a "weird feeling" come over me. Just a not quite right feeling. Very hard to describe and nausea seems to have returned to.

It's funny that as I get older any little thing I get I seem to think it's life threatening even though all the tests I get back say I'm in good health. I guess that's part of that dread and doom and gloom feeling I mentioned earlier. Wish that would go away.

 

[cristiana]

I think, if all this is caused by glutening, it could be that it takes a while to work its way out of your system.

I should explain about what I said about organic broccoli.   I don't have a problem with organic food,  in fact, I buy organic milk and carrots all the time, but I don't want to try organic broccoli in case it is the broccoli that is the problem, not the insecticide.   

I meant to ask, are you a coeliac or is it non-coeliac gluten intolerance that you have?   I wonder what sort of support you get in Australia for these conditions once diagnosed?   Here in the UK I think the understanding is that if new gastro symptoms have lasted for more than six weeks it needs to be investigated.   I have found this very helpful advice because I do get odd twinges of pain and sometimes changes in bowel movements (sorry if tmi) but they rarely last more than a couple of weeks.   If they do persist I mention it to my gastroenteroligist and he follows it up.  I recently had a sigmoidoscopy for left sided pain and they found nothing.  Turns out it was to do with lactose intolerance, but I always imagine the worse!  

 

[flowerqueen]

Hi Richie, 

Glad you are feeling better. I wondered have you been officially diagnosed with coeliac disease? Just wondering as you say you are anaemic, that is one of the symptoms of coeliac disease, along with other general malnutrition. You don't need to eat meat for iron though, you can get it from non-heme foods, like spinach or parsley. Just be careful with the drink with barley, it may be that you only start to have symptoms if you consume a lot of it, but if you have coeliac disease the damage is still been done to your gut regardless of whether you have symptoms or not, which will ultimately lead to malnutrition as well as other things.

[GFinDC]

Hi Richie,

It definitely sounds like you got glutened.  Over here in the USA they can't label foods gluten-free if they are made from gluten ingredients, period.  So your barley drink would not be labeled gluten-free here.  A while back I read something about the testing for gluten in foods not being as accurate for detecting barley hordein as it is for wheat gliaden.  So the gluten-free testing (if they do any) that your drink maker does may not be reliable.

Celiac disease is an autoimmune condition.  So the immune system starts reacting when it detects gluten and damages the gut lining.  An immune reaction is not like a food poisoning event, where most of the damage is only while the food is actually in your system and then ends.  An immune reaction can continue for weeks to months.  The immune system is really quite serious about protecting our bodies.  And since it is designed to detect and attack micro-organisms it reacts to tiny amounts of gluten.

Wheat, barley, and rye are the main gluten grains that affect celiacs.  But some celiacs also react to oat gluten.

 

[RichieF]

Cristiana and Flowerqueen, I haven't been officially diagnosed as Celiac but I had a DNA test in March 2015 which revealed I had the Celiac gene on both sides so it was advised that I have a test to see if I did have it. I didn't but I went off gluten immediately and haven't "knowingly" eaten it since.

Before the DNA test I didn't have the nausea and trembling type feelings that I do now but I occasionally got the shortness of breath which I used to put down to being a smoker. (I quit almost 16 years ago)

Anyway, this morning I woke with the nausea feeling, the trembling, loss of appetite, feeling of doom again but it happens so intermittently. I do have some unavoidable stress in my life all of a sudden so maybe it's all connected some how.

But on the plus side my bowel movements have returned to normal and I go often especially after waking and having coffee. (Oh, and Cristiana don't worry about tmi with me. You would have to try pretty hard to offend me and nobody has done it yet. haha) I always think the worse to. The internet and Google are great but information overload becomes a real possibility creating some frightening scenarios.

It's just interesting that the coffee with the MCT Oil (Brain Octane is the actual name) and butter makes me start feeling better and the nausea, trembling, anxiety seem to be extinguished by it but coffee with low fat milk doesn't although I do get more energy from it. I did read somewhere that MCT Oil was good for gut health though and if I had to describe it it would be like it just smooths over all the bad stuff with a nice soft lining. 

It was recommended in my DNA test that I have more fats in my diet and low processed foods but I occasionally have gluten-free biscuits, gluten-free ice-cream (my true weakness) and gluten-free weet-bix. I've checked most of these items ingredients and they are pretty good. There is a lot of gluten free rubbish out there though which I completely avoid.

Thanks GFinDC for your reply. I was going to speak to my Naturopath when I see her about Immune Health. My plan usually involves the Liver Tonic I mentioned above and heavy on the L-Glutamine which, apparently, is supposed to be excellent for gastrointestinal health but I'm not going to supplement with anything just yet until I get my blood work done and see if it reveals any deficiencies. I'm suspecting Iron though.

Because I've had recent tests all coming back good I'm thinking a possible scenario would be a die-off effect I've heard of where all the bad bacteria have been killed off but your body can't rid itself of them quick enough so you actually feel or get worse before you get better. That's where the detox strategy comes in and I'm assuming replacing them with Good Bacteria via Probiotics. Again, this is what I have read in the past but it does seem to make sense in some cases.

I do feel better in having found these forums though.

 

[flowerqueen]

18 minutes ago, RichieF said:

Cristiana and Flowerqueen, I haven't been officially diagnosed as Celiac but I had a DNA test in March 2015 which revealed I had the Celiac gene on both sides so it was advised that I have a test to see if I did have it. I didn't but I went off gluten immediately and haven't "knowingly" eaten it since.

Before the DNA test I didn't have the nausea and trembling type feelings that I do now but I occasionally got the shortness of breath which I used to put down to being a smoker. (I quit almost 16 years ago)

Anyway, this morning I woke with the nausea feeling, the trembling, loss of appetite, feeling of doom again but it happens so intermittently. I do have some unavoidable stress in my life all of a sudden so maybe it's all connected some how.

But on the plus side my bowel movements have returned to normal and I go often especially after waking and having coffee. (Oh, and Cristiana don't worry about tmi with me. You would have to try pretty hard to offend me and nobody has done it yet. haha) I always think the worse to. The internet and Google are great but information overload becomes a real possibility creating some frightening scenarios.

It's just interesting that the coffee with the MCT Oil (Brain Octane is the actual name) and butter makes me start feeling better and the nausea, trembling, anxiety seem to be extinguished by it but coffee with low fat milk doesn't although I do get more energy from it. I did read somewhere that MCT Oil was good for gut health though and if I had to describe it it would be like it just smooths over all the bad stuff with a nice soft lining. 

It was recommended in my DNA test that I have more fats in my diet and low processed foods but I occasionally have gluten-free biscuits, gluten-free ice-cream (my true weakness) and gluten-free weet-bix. I've checked most of these items ingredients and they are pretty good. There is a lot of gluten free rubbish out there though which I completely avoid.

Thanks GFinDC for your reply. I was going to speak to my Naturopath when I see her about Immune Health. My plan usually involves the Liver Tonic I mentioned above and heavy on the L-Glutamine which, apparently, is supposed to be excellent for gastrointestinal health but I'm not going to supplement with anything just yet until I get my blood work done and see if it reveals any deficiencies. I'm suspecting Iron though.

Because I've had recent tests all coming back good I'm thinking a possible scenario would be a die-off effect I've heard of where all the bad bacteria have been killed off but your body can't rid itself of them quick enough so you actually feel or get worse before you get better. That's where the detox strategy comes in and I'm assuming replacing them with Good Bacteria via Probiotics. Again, this is what I have read in the past but it does seem to make sense in some cases.

I do feel better in having found these forums though.

 

Hi again Richie,

A lot of coeliacs have a problem with coffee, maybe you do too. It could explain the shakes you describe. I am sensitive to coffee, and haven't touched caffeine since last summer. (The detox lasted for 10 days and it wasn't pleasant, so if you ever give it up, do it gradually).  Sometimes when you're intolerant to something, when you have it, it makes you feel 'better' but it doesn't last and usually end up worse, it's like a drug - and in the case of caffeine it is.

I also take a daily probiotic (gluten free and dairy free etc)., which is good for healing the gut.

[RichieF]

Flowerqueen, I usually tolerate coffee pretty well and my DNA profile said I was a fast metaboliser of coffee but I have to do a fasted blood test on Tuesday morning so I won't be able to have coffee til much later than normal. I'll see if it makes a difference.

The shaking isn't actually physically shaking so nobody would be able to tell but it's a shakey type feeling if you know what I mean. And usually when I'm nauseas I look pale but I don't with this type of nausea.

I had a few buckwheat pancakes earlier with some maple syrup, gluten-free ice-cream and LSA and felt a bit better straight after that but the nausea returned not long after that with fast heartbeat and anxiety and burping. This thing is terrible. I have no appetite at all. I feel a bit tired and even speaking feels a bit funny.....weird!!

All this is still normal though, right??

 

 

[flowerqueen]

4 hours ago, RichieF said:

Flowerqueen, I usually tolerate coffee pretty well and my DNA profile said I was a fast metaboliser of coffee but I have to do a fasted blood test on Tuesday morning so I won't be able to have coffee til much later than normal. I'll see if it makes a difference.

The shaking isn't actually physically shaking so nobody would be able to tell but it's a shakey type feeling if you know what I mean. And usually when I'm nauseas I look pale but I don't with this type of nausea.

I had a few buckwheat pancakes earlier with some maple syrup, gluten-free ice-cream and LSA and felt a bit better straight after that but the nausea returned not long after that with fast heartbeat and anxiety and burping. This thing is terrible. I have no appetite at all. I feel a bit tired and even speaking feels a bit funny.....weird!!

All this is still normal though, right??

 

 

I'm afraid to say I don't really think it is normal Richie, but I do recognise the shakiness and nausea you speak of, as I've been there. (Pre-diagnosis), my shakiness was so bad, my muscles were very weak and couldn't walk without the aid of a walking stick, my ferritin levels were so very, very low and had to take iron tablet every day for months. My hair was falling out, I had really bad digestional issues, amongst other things. I think you should lay off the coffee and the barley drink and all gluten/wheat, because until you do, your body is not going to repair itself properly. Damage is done to the gut even if you don't have gastrointestinal issues, as not all coeliacs have symptoms, but the damage is still being done to the gut, which in turn can cause osteoporosis, other auto-immune diseases and also cancer. 

If you ever get a test for coeliac disease, you need to be eating gluten/wheat for at least 6 weeks on a daily basis in order for it to set of the immune response in your body, which will cause a positive result. (Blood tests are less reliable than endoscopy with biopsies - bare this in mind).  You may decide of course not to have a test for coeliacs because of how ill it could make you feel by eating gluten etc. In which case, you need to avoid all gluten and wheat forever! (By the way another symptom of coeliac disease is dairy/lactose intolerance- which could be causing your nausea).

Sorry to be blunt, but you need to know the dangers and there's no point in sugar coating it. What is your fasting blood test for? 

[frieze]

the shakes and nausea and feeling of doom, makes me think low blood sugar.  keep a good food diary. and assess for protein intake.

[cristiana]

Hi Richie

By the sounds of it you could have gluten sneaking in somewhere, or maybe blood sugar issues,  or just plain anxiety, but it would be good to know for sure so you know what to do next.

I think maybe the best course of action would be to see your GP and  tell him/her all your symptoms.   I dread seeing my own GP because as lovely as she is she is very fond of sending me for blood tests (which always seem to include liver function, thyroid and full blood count) which for someone with health anxiety isn't the recipe for a peaceful night's sleep!  But she is right, those particular blood tests, and others, can hold important clues when one has a lot of vague symptoms.  

Celiac testing is of course another set of tests, which Flowerqueen has described well above.   

If you do have all these tests and anxiety continues to be a problem, whether caused by celiac disease, another medical condition or it just turns out to be a stand alone problem, one book that I would recommend that really helped me understand anxiety is 'At Last a Life' by  Paul David. I found it an immensely helpful tool in my recovery.   There is also a website.

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Keep us posted

Cristiana

 

 

 

[RichieF]

Thanks all for your replies.

I know by my last couple of blood tests it has shown signs of anemia so this may have escalated. I did tick a few of the boxes.

The loss of appetite is very unusual for me and the anxiety is (I'm hoping) the main cause of this it just seems funny that it all started from the Vitargo a bit over a week ago.

[flowerqueen]

Good luck at the doctors. Let us know how you get on.