Long, Long Post (sorry)

[thewondersnarf]

Hi guys! great Board!

I'd like to bounce some symptoms of you if I may...

I am already trying a gluten free diet as of 24 hours ago...

1: I'm schizophrenic (but been responding very well to medication for 5 years)

2: I'm extremely tired all the time, but especially after meals. To the point where I won't be able to keep my eyes open.

3: I have ridged nails, no half moons (I consider this weak supporting evidence)

4: I feel brain foggy, all the time.

5: My legs jump excessively at night.

6: When I wake I don't feel rested.

7: My Dad is diagnosed IBS. But he gets a recurring rash in the same place every so often. He has found through experience that reducing his wheat intake has reduced his symptoms. I suspect he could posibly be coeliac, but this is just a hunch.

8: I drink a lot of RedBull, I notice that this has a lot of B vitamins in it... (extremely weak evidence)

9: If I drink beer I get the hangover from hell and I mean this... Like I can barely function for 3 days. Vodka no problem, drink like a fish.

10: I just tried a gluten free beer (Although as i understand it beer doesnt have much gluten in it anyway?) and it does not seem to have the same downer effect on me. But this is a bit wobbly i've only tried it once.

11: I have an annoying tick in my left eyelid (This is just in here for a joke, this Cannot be a real symptom, can it?!)

12: I have a rash that occours every so often, when I took it to a chemist once they said it was definately autoimmune related. I thought that's B******* at the time, shrugged my shoulders and continued to believe it was fungal or something. Now i'm not so sure, although it does not sound like the rash my dad gets or indeed the rash that is associated with Coeliac. Small blisters ~2mm form under the skin, they do not itch. They are filled with a clear fluid. They appear in clusters along side of forefinger and randomly on my hands including palms, they used to be on my feet but they have decided that they didnt like it there. They also sometimes move up my arms. It's not a drug rash since I had this rash since I was like 15, long before I ever hit medication although it has gotten worse. Can't see it being a virus. The immune response, diagnosis from the chemists makes me think drug reaction, allergy, virus. But none of these fit. cant be drug, been on same medications for approx 10 months, as i understand it drug reactions outside of 6 months are vanishingly rare +existence prior to meds. I would love the whole thing to be Coeliac, but the rash does not fit, does it?

13: Tingling in hands occasionally

14: Poor memory

So thats the supporting evidence for possible self diagnosis as coeliac! What do you think?

All this was triggered on friday when I ate a Pot Noodle at work (computer programmer) and promptly could hardly keep my eyes open. But the day before I'd eaten a whole plate of chips (this is english for deep fried potato or fries) and felt nothing. So I thought whats the difference? Eh? What is in the first thing but not the second?

Anyway did some digging arrived at an article that reported the findings that the incidence of Coeliac among the schiz population is 3 times that in the general. So I'm praying for a causal link in a certain subset of schiz population and praying doubly hard that I'm a member of that subset. Oh and I also get tingling in my hands and have a poor memory. (Joke, see above)

I am well aware that a lot of these symptoms can be ascribed to schiz. I am also aware that suffering the symptoms I do I am prone to leaping to conclusions. Also I could be a little too eager to find an alternative explanation to that given by the proffessionals, as the prognossis is unpalletable.

So what do you folks think, don't worry I'm seeing a doctor sharpish about rash and other miscellanious symptoms, so don't feel you have to scare me into taking that step.

The reason I'm writing this post is I don't want to walk into the doctors, describe my symptoms, hint that I suspect that I've got such and such and then find out that I really don't know what I'm talking about (This is highly likely to be accurate!).

Sorry long post!

Thanks for reading.

Regards, Marcus

Edit: Sorry the rash does itch but not to the degree that I've read about in the literature. Ie, it's annoying but nothing too bad.

Edit2: Also once had blood test that showed quite high prothrombin time and low protein levels...

Edit3: This post was written last night but i didnt post it untill this morning. I'm now noticing that approx 42 hours gluten free the rash is subsiding slightly. Also tried going sublingual with a vitamin tablet v.high in vitamin D and the E's and B-12, says you shouldn't chew it on the packet but never mind, I smoke I'm sure that does me more harm. Anyway was feeling extremely tired and groggy, 1 hour after vit tablet feeling slightly better. But this could just be a psychological thingy me bob.

[Ursa Major]

Hi Marcus, and welcome to our forums. You sound like you could possibly have celiac disease. Did you know that celiac disease can cause schizophrenia? They are more linked than you realize. The reason is, that gliadin can cross the brain blood barrier, and in gluten intolerant people it might act like an opiod, which can cause hallucinations and other symptoms of schizophrenia. As well as other neurological problems, like depression, bi-polar and neuropathies (like tingling in the extremities).

I get the exact same rash, and it is definitely linked to food intolerances.

Your reaction to regular beer is very telling and quite typical for somebody who is gluten intolerant.

You have very good reasons to demand that the doctor test you for celiac disease. But even if you test negative, you should try the gluten-free diet after the tests are done. If you want an official diagnosis, don't start the gluten-free diet until after the tests are finished, because otherwise the tests won't be accurate.

[thewondersnarf]

Thankyou very much for answering

I'm going to stick to the diet for the moment as I'm already seeing some hints of improvment. It is more important to me to prove to myself that I have a gluten intolerance (if that is indeed the case). Medical diagnosis can follow, I will just have to reintroduce gluten into my diet, I suppose. Going to book up a doctors appointment some time next week.

It is good news to me that you have the same rash (not that I wish a rash on anyone!), it allays my fears about it being something more insidious. It also adds weight to the Coeliac hypothesis.

If my problems with the symptoms of schizophrenia can be alleviated, through a gluten free diet, I would be absolutely over the moon! It would be the single most important discovery of my life. But I must not get too excited

If there is this causal link between Coeliac and Schiz, why do they not test for Coeliac's before they diagnose? Even if it was maybe 1 percent of cases where this chain of effects holds true it would be beneficial to check. Maybe it is just out of fashion.

Thankyou again for your answer, now I can go to the doctors and feel more confident in putting forward my theory of events.

Regards, Marcus

[darlindeb25]

Marcus, so much I read that could factor in. First, before you go totally gluten free, if you want to be tested, you should be eating gluten...go to a doctor and tell them what you suspect. Stop drinking Red Bull, it just makes you crash harder, most energy drinks do that. They give you a zip of energy, and then you slam down to earth. It sounds very obvious that beer is a problem too, which if gluten is a problem, beer definitely is. I just had a sleep study done for sleep apnea, many of your syptoms fall into the area too--restless legs, falling asleep during the day (which also can be attributed to food intolerance's), waking and not feeling rested, is another symptom. The fact that your dad has IBS, is another reason to suspect gluten to be a problem.

Take all this to the doctor. You say you have brain fog, so write everything down, print your post, take it with you so you don't forget anything. Brain fog is a huge gluten intolerance problem.

Good luck!

[RiceGuy]

Well, most of what should be said has already, so I'll just add my voice to the others, and encourage you in the same direction. Based on your symptoms, I'd say gluten is a likely cause. Even if you decide to stay on gluten for testing, a high potency B12 supplement (1mg or more) can help in many ways. It is used in the production of melatonin, which you need to sleep well and feel rested. B12 also helps with energy levels, mood, skin, hair, and nails, eyesight, brain function, and lots more. A deficiency in B12 is common among celiacs, and the poor nail health is also a telling sign. Look for a B12 sublingual that is methylcobalamin, because that is the most effective form. You could also get your doctor to give you a B12 injection to get you started, if you are OK with needles. Tingling in the extremities can also result from B12 deficiency.

Oh, and yes, the eye twitch can be related to Celiac too. I'm guessing B12 here again, as nerve health depends on it.

[Ursa Major]

Right, I used to get that annoying eye twitch frequently before being on the gluten-free diet. Now I haven't had it in probably two years.

Marcus, I assure you, you don't want to go back on gluten once you've been off it for a while. Your symptoms will likely be worse then, and make you really ill. It is much easier to stay on gluten until after the testing is done.

Plus, once you've healed to any degree, do you really want to undo all the good you've achieved by going back on gluten?

[thewondersnarf]

I'm feeling good, I have diarreah (lots of mucous), but i'm feeling mighty good. Really good in fact. I'm extremely warry of the placebo effect but I'm swiftly approaching the stage where I chuck the placebo effect out the window as a possible explanation for improvment in symptoms (tiredness etc).

My rash is virtually gone, well there's nothing new coming up! and those that were coming up have dissapeared.

Oh and i had a few more thoughts on possible signs of illness. My dad once told me that they had terrible trouble with me as a child because for quite a while I projectile vomited most of my food up.

Also my teeth chip easily, twice in the last 2 years i've chipped my front bottom teeth.

I'm crossing my fingers that symptoms continue to improve...

Thankyou for you're support and guidance.

Have cut out the redbull...

Regards, Marcus

Edit: re waiting for testing. I'm of the opinion that I may die tomorrow. I may get run over, have a stroke, get hit by a meteorite, that sort of thing. I have never felt I can rely on tomorrow. As a result I don't like to wait for things, it's all now, now, now with me. This is a flaw in me Also if indeed this does make a difference then I don't care if I have a diagnosis. If it improves or erradictaes the symptoms of schiz then we have a problem because I'd like it to go on the medical records, so that people can learn from it. But there are genetic marker tests aren't there? Not entirely conclusive but highly suggestive, with that in corroboration with my reports on improvement in symptoms, it should be enough shouldn't it?

[darlindeb25]

But there are genetic marker tests aren't there? Not entirely conclusive but highly suggestive, with that in corroboration with my reports on improvement in symptoms, it should be enough shouldn't it?

We are all different, some of us do not need a diagnosis, some feel they can't go gluten free unless they are sure. It's whatever you feel is right for you. I have been gluten-free for 8 yrs now, and I never had a diagnosis...no one on God's green earth will ever convince me that I am not a celiac. My sister was diagnosed 4 months before I went gluten-free...I didnt have insurance at the time, and could not afford any tests, so I went gluten-free too. About 1 yr later, a medical university in Chicago was looking for people to study, they asked my sister if she knew anyone that wanted to be tested for free. She gave them my name, then they said I would have to eat gluten for X# of months, and she told them to forget it, there wasn't enough money to make me eat gluten again...she was right!

One month ago, my neurologist ordered a celiac panel on me. It came back that I have double DQ1 genes. Some doctors say you can't be celiac without DQ2 or 8 genes, some do not agree. Scientists just released findings that 7 more genes are linked to celiac. There is no way to prove or disprove I am celiac now. I know I am, I know how this disease has effected my life. It's all in how you feel. If gluten-free makes you better, that's what you do. Being gluten-free can not hurt a person, it's actually a much healthier lifestyle.

Good luck with the tests!

[CarlaB]

Something else to consider .... Open Original Shared Link

I would highly recommend getting the testing done now, before you're off gluten too long. Once you get off gluten, you'll want to be back on it four months to get proper testing .... it's just a simple blood test, I'd suggest getting it now (just in case you live till tomorrow ).

[GFinDC]

Hi Marcus,

I had a twitch above my left eye for years until I went gluten-free. I also have ridges on my finger nails. Sleep problems, tiredness, aand fogginess also. So it sounds to me like you are definitely a possible celiac. I suggest getting the blood test done, even if it is next week. It would be best to keep eating bread or other gluten foods until then. It takes a while to learn all the things to watch out for on the diet. You might want to study that now to prepare for it. I hope it works out for you, but be patient because the diet changes can take a while to learn and your body needs time to heal also.

[thewondersnarf]

Ok, it's now 5 days after I stopped the gluten.

I'm now sitting at 80% convinced that I have an allergy to something I've usually been eating. Most likely I believe it to be gluten.

I feel absolutely fantastic.

I've tidied my flat, washed my clothes, cut my hair. I'm bouncing around at 6:00 in the morning looking for something to do. Usually I am the architypal sloth.

Life is good

I accidently dosed up with caffeine today, it was in some Annadin extra I took because I had a headache. I hit the roof, and I mean I HIT THE ROOF. I had to come home from work I was so hyper, couldnt concentrate, couldn't function, but it was fun!

Caffeine has never had that effect on me. It used to ease the grogginess I felt, now it's dynamite.

Same goes for alcohol, the nature of the drug's effect on me has completely altered.

Very strange indeed. Anyone got any ideas on this?

I'm crossing everything that I stay feeling this good.

Because if I do it is the start of a new life for me. Meladramatic, maybe, but that's how I feel. I have only a hint of regret for the wasted years behind me. I always knew I had to hold out for the miracle, that if I just held on, that if I just kept on going, my horse would eventually come in.

But I'm getting ahead of myself here. Placebo is a powerfull drug. As I said currently sitting at 80% convinced.

I'll keep you posted on what happens, should you be interested!

Thanks everyone,

Marcus

[babysteps]

Caffeine has never had that effect on me. It used to ease the grogginess I felt, now it's dynamite.

Same goes for alcohol, the nature of the drug's effect on me has completely altered.

Very strange indeed. Anyone got any ideas on this?

I had a similar caffeine thing (although pre-gluten-free I was already more sensitive than you were, sounds like).

I don't have any proven explanations, but many folks point out that as our gut heals it does get better at digesting the gluten-free food that we eat, and also that as we heal our bodies can have stronger reactions to gluten. So could be 2-pronged, your blood is getting more of the caffeine and *if* your body is especially sensitive to caffeine it could now be that much more sensitive.

I know I was testing chocolate roughly 1x every 2 wks, so far it still gets my heart racing and makes it feel like my scalp is levitating a bit. Maybe someday this will fade, but for now I'm going to quarterly testing! My peace of mind is worth it

Glad you are feeling so much better!!!!

[thewondersnarf]

Ok, this is ridiculous.

Today I was bouncing off the walls again. I have two theories as to whats going on:

1: I drank too many sugary drinks and got the sugar rush of a life time (Which I have never got before) (They were decaffinated sugary drinks)

2: There's something funky going on with my current medication.

Lets see what tomorrow brings, this is not good because I can't work at all, far too hyper. But on the plus side my paranoia has all but dissapeared.

I need to book up an appointment with a psych sharpish.

My hands have stopped shaking. They always shook, now they don't and it wasn't me that noticed this, it was my father.

I am fully convinced that I was allergic to something I was eating. Not a trace of doubt in my mind.

I'm remembering things, I can remember phone numbers, I'm remembering to buy essentials like loo roll, tooth paste etc.

I'm smoking less.

I took an aspirin today and it actually worked, just 1 aspirin actually got rid of my headache!

This is becoming my diary! I think it's a good idea should anyone ever be following the same path as me, some time in the future.

I am absolutely livid with my doctors, furious. But then I never had much faith in them.

Regards, Marcus

[gfpaperdoll]

wow, good for you. Yes we are very interested in your day to day progress, please keep us posted.

during this time, please make sure any sodas that you are drinking does not have any aspertame or any artificial sugars. Some of us (me) are super super sensitive to any artificial sugars. I am even allergic to mannitol (used in vitamins).

really, maybe just have a seltzer water or something for a few weeks, that will give you a lesser dose of artificial flavors & colors. another thing to watch out for.

for the loo reference, may I assume you are in England? If so, be double aware that the gluten free baked goods might contain wheat starch that they consider safe, also so many gluten ppm (parts per million) are allowed in processed gluten free processed items. Please note that some of us cannot tolerate that stuff.

I am caffein sensitive the only caffein that I get is in chocolate. Once many years ago when I was only wheat light, thinking I just had a wheat allergy, I took a pill for cramps - not realizing that it was mostly caffein. I was up all night, cleaned the house, scrubbed the oven. There was no thought of even trying to go to sleep. It took 24 hours to wear down a bit.

If you are on meds, you might need your doctors help to lower the dose. Just a guess but since your body is not working so hard to deal with the gluten, the meds could be having a stronger effect. Also, if you used to have diarrhea & now do not, you could actually be absorbing those pills, instead of them sliding on through.

[tipnpat]

Edit2: Also once had blood test that showed quite high prothrombin time and low protein levels...

The elevated prothrombin time could be due to an abnormal Vitamin K level. Vitamin K is a fat soluble vitamin and these are often skewed in malabsorption cases such as celiac, IBS, chron's leaky gut, etc.

Edit3: This post was written last night but i didnt post it untill this morning. I'm now noticing that approx 42 hours gluten free the rash is subsiding slightly. Also tried going sublingual with a vitamin tablet v.high in vitamin D and the E's and B-12, says you shouldn't chew it on the packet but never mind, I smoke I'm sure that does me more harm. Anyway was feeling extremely tired and groggy, 1 hour after vit tablet feeling slightly better. But this could just be a psychological thingy me bob.

You need to be certain your vitamins/supplements are gluten free. Vitamin E's are frequently derived from wheat. Dairy is my drowsy culprit. I can barely keep my eyes open if I ingest casein (milk protein) now. I suppose it's the caseio-morphines in it (produces the opiate effect).

I am similar to you in some ways. I am not schiz but I am bipolar - or I should say I WAS bipolar before going gluten-free. But, I used to be extremely paranoid. I always thought people didn't like me, were mad at me or were talking about me. The explanations and eye-rolling of the people around me said they thought I was narcissistic and had low self-esteem and then I was paranoid about that too! But, I liked myself just fine and thought I was a pretty cool person. I just couldn't stop obsesseing over people being mad at me for something.

That's all changed now and I feel so good. I cannot tell you how good I feel! I'm not manic and I'm not depressed and I'm not paranoid. My joints don't ache, my neck doesn't hurt, I don't get migraines, my eczema stays away, my hair is growing back and I'm a good mom. Get the tests early on just because but taking gluten (and for me dairy too) out of your diet will make you feel fabulous. In fact, I don't eat any grains except occasionally rice.

Good luck!

Tip

[GFinDC]

Hi Marcus,

When you go to the doctor you might want to ask for a thyroid panel. Thyroid disease is sometimes present along with celiac. One of the symptoms I have when glutened is that I can't get to sleep. My thyroid goes into overdrive and my ears start ringing louder and other less wonderful things to talk about happen too. When this happens I have tried drinking myself to sleep but it seems to have much less affect than normally. Kind of like drinking water, weird. Yes, I feel energetic but the thing is it's result of my thyroid being attacked by the antibodies and damaged. So not a good thing at all. Anyway, just something to ask the doctor to test, it is just another blood test, no big deal. Oh, and I don't drink myself to sleep every night! Although that doesn't sound to bad hmmm.

[thewondersnarf]

Everything has calmed down now. I still feel 100 zillion times better than I have ever done before in my life. But I'm not hyper anymore.

I have learned what I can put into my body and what I can't. No caffeine, a bottle of coke sends me over the edge, massively cut down on smoking (soon to be stopped completely, but my dad suggests I take things in baby steps).

Sugary drinks give me a pep up that I have never experienced before, I feel full of energy, ready to go for a run! It's quite incredible.

I have also cut down on the medication I was taking for schiz. I believe it was causing most of the agitation I was feeling. Unfortunately the psychiatrist is away untill september. However I have a very close relationship with my dad, he knows when I'm going funny. I have informed him of whats going on (not that I needed to say somehting was going on the change was in yer face, total character change (I'm still me tho)). I can rely on him to let me know should I need to up the dosage again. We have made a pact that I'm going to see him every day for half an hour so he can check me over. Personally I want rid of the medication, I really don't think I need it any more, there is no trace of paranoia left in me, ~I'm not scared of everything any more!

Words cannot express how happy I am.

I've been getting back in contact with old friends, I feel sociable! That's a first in my life!

I've made myself a list of things that I need to do, this is a breakthrough. I've tidied everything. I can remember my mobile number! I can sit at work and not poop myself everytime the phone rings thinking it is something I have done wrong! I played the best game of tennis that I have ever played in my life yesterday, the difference was I had pep, I wanted to be there, I had energy to burn, running was enjoyable.

My long standing shoulder injury, it's been there for 1.5 years has suddenly miraculously healed itself. Ok I havnt stressed it for a while so that it could heal, but I've left it for longer before and still had it.

I absolutely killed myself with sport yesterday, today I'm stiff but nothing like I used to feel.

I have arrived at the promised land, I had to wade through some poop, but I'm here anyway

I'd like to thank everyone for thier support and input. The next message I put up here will probably be once I see the psychiatrist. Untill then I'm off to actually enjoy life!

All the best, Marcus