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NoodleUnit

Do These Symptoms Sound Familiar?

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Hi,

New here, but hoping that you can shed some light on my last 6 months of hell.

By way of introduction: 40 year old male, based in Scotland. I have a 5 year old daughter who always makes it all better, but I would dearly love to be able to all the things I used to with her before all of this happened. This is a long post, but I'm hoping some of you can lend your time and wisdom to the problem I face.

Here goes...

I've been quite seriously ill for about 6 months; I've had MRI brain scans and CT scans ( all of which, I found out, have come back clear, thankfully ). Started with a stubborn infection last year, four months of antibiotics and some kind of massive reaction to them.

The one night I woke up in agony, with excruciating burning pains in my extremities. I was left in agony for months, sometimes only getting two or three hours sleep in a night, and at times unable to hold my head up properly, and without the use of my right arm ( has happened twice so far ). The number of severe symptoms I've had is very high, all predominantly down my right side, including severe nerve pain, burning sensations, involuntary rapid eye movements and more.

I initially thought that the worst of these episodes were reactions to antibiotics, but now I suspect that the culprit is wheat or gluten, perhaps brought on by the unrelenting course of antibiotics, all designed to destroy the flora in my gut. The general trend was always towards improvement, but every week or two there was a massive relapse, but never quite as bad as the previous one. The last MRI was to check for MS, which scared the living bleep out of me. It's clear, so that's all good.

Then, about 6 weeks ago, I had a really bad reaction to pasta. Thankfully I'd just started keeping a diary of symptoms and every environmental factor that could cause them. I had exactly the same reaction after the same meal the previous week, which got me thinking about the other bad days. It began to look like a severe wheat intolerance. I've cut out wheat for the last 6 weeks, and have vastly improved. Still have discomfort now but it's easy to cope without painkillers, whereas I was having to pop cocodamol at the maximum dosage to get by at the beginning of the year.

I decided to challenge my system on Monday last week. Had a pizza and was really uncomfortable for 3 days after. My burning symptoms and pain returned. I then had a lapse in willpower on Friday, had a sausage and this last weekend has been an uncomfortable one since then. I thought I was getting better today but seem to be getting the burning symptoms again just now.

Also to add, I've had a gastric episode over the last couple of weeks, with upper abdominal pain which has been remedied with strong antacids. I have terrible bouts of wind, and uncomfortable bloating even with the antacids though. May be unconnected, but I can't believe I'm *that* unlucky.

I'm due for a few more hospital visits to a/ discuss the MRIs, at which point I'm going to point to the wheat problem and suggest celiac as a possible culprit. b/ to investigate the original indirect cause of all this, an abscess, which while it has now gone away, is still causing me problems via the wound it left. One consultant wants me to have an endoscopy, which I'm reluctant to do. Mostly because it gives me the heebeegeebees :)

Are any of these symptoms familiar to anyone? I've been going through hell for months and while I feel I'm getting to the rub of the matter, my body seems to throw the odd curveball my way which makes me wonder if I'm on the right track,

Anyway, sorry for the long post :)

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Sounds like a really tough time. Well First off, welcome! I'm a newbie also and am starting to cut out all Gluten products form my life. I'm not a Dr, but with those symptoms I'd be really on them about testing you correctly or research and do your own trials to cut possible allergens out of your diet. I have read that a lot of auto-immune diseases and disorders are caused by Gluten allergies.Now the MS might not be the problem at all like the DR said BUT with that said let me tell you what has happened in my own family just to be aware. I believe my Mother had the same issues you have had and I am sure she had Gluten allergies and she nor the Dr's knew it. She got tested for MS 2 times with MRIs and once with a spinal tap and she refused to believe that the test were negative and she finally drove them bonkers convincing them to put the dye in and do the MRI and it came back positive with the MS spots all over her brain. Even the Dr's were shocked that she had so much evidence with the dye, so be careful with "test" results because she had the most seriously advanced kind of MS and they still didn't catch it until the dye was put in. Not to say that is what you have(like I said) I keep reading on here about Dr's and testing that come back false negatives all to often leaving people to just figure it out by cutting Gluten out and finding out for themselves that Gluten was the problem. I know she had it because all of my Dad, 6 sisters and I and our kids all have issues with gluten and I think if the Dr's had caught it earlier it might not have led to the MS with my Mom. I also have a Father and 3 sisters that have Diabetes so I started to look at my life and see what the link are to all this stuff and found that gluten intolerance or Celiacs disease, too much Candida in the body (antibiotics and too much sugar and processed flours) and a lack of vitamin D are huge causes of auto immune issues. SO with that said after taking antibiotics for that long you probably need a really heavy dose of Probiotics for a good year to help, but it might have led to what they call "leaky gut" syndrome which is also a gluten and Candida problem . Gluten allergies and Candida overgrowth have A LOT of the same symptoms too. So I'd definitely research both topics and see what the effects are from possibly have this "gluten" allergy for so long. That might be where you find more answers. I hope you find out soon! I don't like not knowing what's wrong with me. :(

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All of your symptoms sound consistent with Gluten Intolerance/Celiac. Of course follow up with your Dr. but be aware you have to consistently eating gluten to test positive for it. Your arm nerve pain could be neuropathy related to Celiac. It would be good to go to the Dr. armed with some articles on Celiac for their consideration. Your body will throw the occasional curve ball at you to make you wonder if you are on the right track. I think you are brilliant for having made the connection to wheat at all. It passed me by for years. Your food challenges are showing you it is gluten. The symptoms of neuropathy take the longest to heal, but it can get a lot better if gluten is really the problem. Learn as much as you can, especially about cross contamination. Even tiny little specks of gluten can make your neurological and gastrointestinal problems return. I got sick from handing a cookie to my nephew and then eating my safe food. It is that sensitive in some people. Of course, I didn't want to think I was THAT sensitive, but indeed I am. And you may be too. The first decision you need to make is Do you want Celiac blood tests? You have to be eating gluten if you do. Even so there is a pretty high rate of false negatives. It sounds like you don't want the endoscopy but I've heard it is really no big deal. Since you have a child, watch for signs of gluten intolerance and Celiac there too. You might save a lifetime of mental and physical distress there too. I think you are on the right track. I hope you will get really strict for 6 months and see how you feel whether or not you decide to test. Watch those toast and cookie crumbs too. And flour hangs in the air so if anyone bakes around you you could be ill. If gluten causes all of your symptoms,and it certainly could cause all of them, you could be feeling really very much better soon. Good luck and I hope you recover fast.

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Thanks very much for your replies. I really appreciate it :) Very definitely, the neuropathy reduced dramatically within a week or two of cutting wheat out. It's still there though, very much reduced, which coincides with your statement about it taking the longest to go away.

I'll look into the Candida thing too, that would fit in with the 4 months of antibiotics. Could that be connected to skin infections at all? I had a fairly bad one while i was on the antibiotics which meant I had to stop the antibiotics and take a steroid for a couple of weeks.

As it turns out, I'm going in for a colonoscopy for the abscess problem on Tuesday. The surgeon agreed with me that the endo wasn't necessary right now, as the upper abdominal pain is under control and all my bloods have come back fine. Which led me to be able to get a short notice slot for the colonoscopy. I'm being put under a general anaesthetic, as the last time they tried without it, it left me in unbelievable pain. They're also removing a very painful lipoma on my abdomen at the same time.

I think I'll mention to him the wheat problem when I go in, so he's aware to look for evidence of that while I'm under.

Thanks again for replying to me. It means a lot.

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Actually, I'm wondering. Would you think it would be helpful to eat some wheaty stuff before I go in for the exploratory op? Just so it would be more obvious?

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Regarding the skin issues, I know there are several skin problems associated with celiac's and gluten sensitivity.

Personally, I think it's all related.

I am not a doctor or nutritionist of any kind, but no, I wouldn't necessarily recommend eating wheat stuff before going in for surgery. If it has bad negative reactions with your body, it's only going to complicate the process of surgery and THAT you don't want.

Wishing you answers and the best of health.

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No, I definitely would not eat any gluten prior to the colonoscopy. You have nothing to gain from it and a lot to lose.

I am not sure when you had your blood tests, but if they were testing for celiac after you had stopped eating gluten for any period of time the tests would be negative because the antibodies would have retreated. It may well be possible to still see some gluten damage in your small intestine, if you had any, but that would have also started to heal in the absence of gluten, so the endoscopy if you were to have it could be a waste of time now too. The colonoscopy, however, is useful to rule out Crohn's. ulcerative colitis and other bowel conditions as well as take care of your lingering problems.

If you are gluten intolerant, which it does sound like, it is important for you to avoid barley and rye as well as wheat as they all contain the same gluten. While rye is not often found barley makes its way into our diet in the form of sweeteners and in barley malt in beer, in malt vinegar, etc.

I would recommend that after your procedure you go on a strict gluten free diet, as strict s if you were a diagnosed ceiac, and see how much better you feel. And do continue to keep a food and symptom diary - this is invaluable in tracking down culprits.

Good luck with your colonoscopy and I hope you can start feeling better soon.

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Thanks for all your replies folks.

I thought I'd add an update here. Two things:

a/ I had an operation 3 weeks ago to finally eradicate the abscess which caused the initial 4 - 5 month course of antibiotics which in turn caused the gut problems. They also removed a lipoma from my abdomen at the same time. I'm still off work just now as the wound needs dressed and packed daily, but I'm nearly there. Down from 20 cm of packing in the first week to just over 1 cm today. I got a post-op infection but dealt with that quickly. Was deeply unpleasant for a few days but I got over it.

Despite all that I'm feeling better that I have done in 2 years. Since the first flare up of the abscess 2 years ago, I've had nothing but colds the whole time. I've been lethargic and down almost perpetually too. It's been a struggle to be a dad, keep down a job and all the other things we have to do on a daily basis. Bizarrely I also had a 2 year battle with verrucas, which just wouldn't die no matter what I tried. 2 days after the operation they had disappeared without a trace.

Because of the technicalities of the the operation wound, I can't eat that much either. So I've lost a stone in 3 weeks. which I'm happy to take. It's made a real difference. Also because of that I've been able to be really strict about going gluten-free, which leads me to the main dish...

b/ I went to my neurologist yesterday for an official follow up on all the scans I had earlier in the year. So now I officially know that they're all clear and that I don't have MS which had been a worry for a time. I took my symptom diary with me to show her, which detailed everything including the food I was eating. I described to her the hell I'd gone through, the eureka moment and the times when I'd accidentally had more gluten recently. She's absolutely convinced that it's celiac. I'm having a blood test done but tbh don't expect it to come back positive as I've been gluten-free for a couple of months now, with only 2 or 3 "accidents" in that time and since the op I've had absolutely no "glutenings". The neuro was well aware of that too and said that basically if it's positive then it takes us forward, but if it isn't positive then it does nothing.

She mentioned endoscopy, but having just had 2 surgical procedures, I'm not keen to go through anything else just yet, especially as it still may produce no real evidence anyway. I have no intention of eating gluten ever again just to prove it.

So... I'm 99% certain that I have celiac disease, and I can live without the perfect 100% for now. It was wonderful to get it confirmed by my consultant at hospital. She's seen a lot of this, so I'm happy to go with her knowledge. But, after the initial relief ( "finally someone believes me!" ), comes trepidation. As with all of you here, I now have to commit to this for life. I'm desperately missing simple baking. I can't go into a coffee house without smelling gorgeous cheese scones everywhere.

The other interesting point is, that at around my age ( I'm 40 ) my mother developed very similar symptoms to me. And my granny has similar issues too. They've never really got over them, simply persevering as best they could. Now my mum's thinking of going gluten-free. It'll be interesting to see if it finally gives her some relief.

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Rather than start a new thread I'll just add this here.

I think I've very much discovered a dairy problem now :( Suspicions were raised when I made some lovely gluten-free cheese scones last week, but I had half a glass of goats milk before bed last night and now I can barely function. The neuropathy has returned since the scones too.

Is it common for dairy to give the same symptoms as gluten?

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Yes, it is normally recommended that you avoid lactose for at least the first six months of gluten free (maybe longer) because the enzyme that digests lactose is made in the part of the small intestine that is destroyed by gluten. And some have to go the whole route and avoid all dairy. And if lthat doesn't do it for you, you might have to stop eating soy also, as many celiacs find soy is also a problem.

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If the villi is blunted you will not absorb lactose & you will have problems. However you may be able to return to diary after the villi is healed. It will then be able to absorb. Theres no set or magic time it takes your gut to heal In adults it can take from months to years. In kids it usually a few mths.

Kudos to you for figuring out your intolerance to gluten! Read as much as you can about cross contamination.

Best of Luck to you.

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Thanks again for your replies, it's so reassuring having you all there to lend an ear and have the benefit of your knowledge. It's a real rollercoaster just now as I discover what my limits are and my triggers. The burning sensation down my leg is searing right now and I feel like I have a stone in my abdomen. Inevitably I end up losing yet another of life's great pleasures whenever I get triggered. :( Very hard to remain positive sometimes...

I'll just have to try baking with rice milk I guess - I'm not giving up on my scones yet!

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I'll just have to try baking with rice milk I guess - I'm not giving up on my scones yet!

There are several different milk options, rice being one of them; however, avoid Rice Dream because it is processed with barley and many celiacs react to it. Two other delicious milks are almond and hemp milk, and then there is also coconut milk. Plenty of options to try. You can get coconut and hemp ice cream too and they are both yummy.

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however, avoid Rice Dream because it is processed with barley and many celiacs react to it.

Seriously? That'll explain why I'm still getting searing pain days after I switched away from dairy... that pitfalls are just everywhere...

Sigh... coconut milk it is then! Which is fine, I like coconut...

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There are several different milk options, rice being one of them; however, avoid Rice Dream because it is processed with barley and many celiacs react to it. Two other delicious milks are almond and hemp milk, and then there is also coconut milk. Plenty of options to try. You can get coconut and hemp ice cream too and they are both yummy.

Just a quick question about the Rice Dream milk.....it says gluten-free on the carton. Can it be processed in a facility with barely and be labeled gluten-free?

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Just a quick question about the Rice Dream milk.....it says gluten-free on the carton. Can it be processed in a facility with barely and be labeled gluten-free?

Barley is used in the refining process of Rice Dream, but they claim there is no residual. :rolleyes:

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Thanks again for your replies, it's so reassuring having you all there to lend an ear and have the benefit of your knowledge. It's a real rollercoaster just now as I discover what my limits are and my triggers. The burning sensation down my leg is searing right now and I feel like I have a stone in my abdomen. Inevitably I end up losing yet another of life's great pleasures whenever I get triggered. :( Very hard to remain positive sometimes...

I'll just have to try baking with rice milk I guess - I'm not giving up on my scones yet!

I don't want to throw cold water on your scones, but some celiacs can't handle ANY grains, and there is more and more evidence that some of the gluten in other grains makes us react like the gluten in wheat, rye and barley do. And some grains that are said to be gluten-free may not be. So be aware of that. I tried to eat some gluten free muffins (they were tasty!!) but found I just couldn't. Maybe someday after the villi are all better I'll be able to eat some of the alternates.

It's such a trip to figure all this stuff out!

Luddie B)

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I'm beginning to think you may be right. I'm having real trouble just now, especially tonight actually. Something is just simply not agreeing with my stomach tonight and my neuropathy has returned ever since I started baking ( it gets markedly worse when I'm having stomach problems too, so right now my leg is on fire, as are my hand and my eye ). I'm also starting to suspect soya milk and yoghurt as a no go area for me. I had some alpro yoghurt tonight and I think it's what's done me in.

I'm going to return to a bland diet for a few days; no baking, mostly fruit and then add one thing back at a time and see what causes me the trouble.

I remember in my younger days I lived in a house with a really stupid cat. One day it insisted on trying to make a bed out of a pile of thorny bush twigs and branches despite it clearly being painful. Over and over it tried to settle down on the thorns, either out of sheer bloody mindedness or complete cat insanity, or both. I feel like that cat just now. I'll keep on telling myself that it can't be this or that thing that's causing me issues, and just keep eating it until I'm in such a state that I can't ignore it any more.

Thing is, I don't want to be that guy. The one who spoils everyone else's fun by being picky or saying I can't go out because I can't take the risk. But, right now, my symptoms can get so severe that I simply can't ignore them.

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Thing is, I don't want to be that guy. The one who spoils everyone else's fun by being picky or saying I can't go out because I can't take the risk. But, right now, my symptoms can get so severe that I simply can't ignore them.

We don't get a lot of choice on who we are. All we can do is make the best of what we've got. We don't have to be obnoxious about it, but we do have to be firm and take care of ourselves.

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Very true - I just sat in my fave cafe for the first time since I went gluten-free. I'd been avoiding it because I couldn't handle the temptation of all that lovely gluteny stuff in there. Turned out they were extremely accommodating once I politely asked if they had any gluten-free options, in fact they bent over backwards to make sure everything was fine. Makes me feel better to know I don't necessarily have to shut myself off from my old life.

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@Noodleunit,

Congrats on finding your food issues out! You might want to read up on gluten ataxia. Gluten ataxia is a celiac related condition that affects the brain and can cause nerve issues, problems walking etc. Another issue some people get is nueropathy caused by poor absorption. Generally people recommend taking extra B vitamins to help with that, including sub-lingual B-12 and a B vitamin complex.

@Suzieq,

There is no gluten free labeling standard in the USA yet. So yes, they can.

The issue with Rice Dream is that they used to process it with barley enzymes, but did not list it in the ingredients. I don't know if they still do that, and personally don't trust them as they didn't list it in the past but still did it. I had reactions to the Rice Dream milk a few years ago but haven't tried it recently. Other people have reported reactions in the past also.

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Thanks very much for that GFinDC - as a result of your post I've just got myself some Vitamin B tablets ( I think it's B6, B12 plus some other stuff like niacin, etc.). I've just read that deficiency in niacin can lead to lowered tolerance of cold temps. Makes a lot of sense to me, as last winter once this all kicked off I was far more prone to feeling very cold than I had been in the past. Generally it was my partner who felt cold first, this time round it was me.

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