tennisman

Hi just wondered if anyone has had the Cystoscopy test ? If there is anyone who has had the test under local anaesthetic I have a few questions ?

I did about 5 urine tests last year and all had traces of blood , my gastro doctor thinks I have kidney stones . I did also read a vitamin k deficiency can cause traces of blood in the urine and my GP doctor told me sometimes celiac's have a vitamin k deficiency .

I think it's just some people are lucky with health and others are unlucky It is frustrating I have known people who drink a lot every weekend and eat lots of junk foods and are perfectly healthy but than again these people don't have celiac disease so them eating all junk foods is not gonna do any damage to there intestines . I find it more annoying when people I know smoke a lot or do drugs and have no health problems.

Hi T-Man,

One of my visible symptoms is swelling in my feet and ankles. If I get into something that sets off a reaction that is the first outward sign. So I figured out the grapes by a simple test, no swollen feet and ankles without them, swollen feet and ankles with them. I had eliminated wine for several months a couple years ago. But I didn't stop all grapes. I really thought it was the wine itself. So I was still eating grapes, and raisins etc. I was somewhat better but not completely. So after a while I started the wine again. Didn't notice a big change But things got worse so I stopped it again. Then after a while I tried something, grapes or raisins and had a reaction. Tested it again a few days later and same thing. So that clinched if for me. It's nice in a way if you have a clear symptom since it helps to identify the problem. So, the alcohol in the wine wasn't causing my swollen feet and ankles it was the grapes it was made from.

Fructose malabsorption is kind of like lactose intolerance I think. That's more of a GI distress thing. It does sound like you are having an allergic reaction to the fruits instead. It will be interesting to see what the allergist find out. Are they going to test you for fruits? That sounds kind of funny.

Hi GFinDC ,

Good job figuring out the grapes problem , must have been great to figure it out

Yeh I hope the allergy clinic will test me for the fruits , I'm going for latex allergy testing but will make sure I bring fruit with me could be interesting . I kinda wanna test wheat too just incase as I think I had the same sore throat reaction from some gluten-free bread with the codex wheat starch in , don't usually eat products with it in but have never had that reaction before . If my results are negative with the fruit it most probably is something that is sprayed on fruit causing the problem . My sister had allergy testing last year lots of fruits all came back negative . I asked my Mum to ask the doctor about getting my sister tested for celiac disease some time and the doctor doing the allergy testing did a wheat test on her that was negative and he said she didn't have celiac disease .... Luckily we found a different doctor to do the celiac disease properly .

Hi Tennisman,

Just wondering about apples for you. You said you react to a lot of fruits now? Cider/apples could be a problem there. I have a problem with grapes myself. Any grapes, including raisins, jelly, jam, wine. They all cause a reaction for me. Goodbye Pamela's gluten-free peanut butter cookies, sweetened with grape juice! :-(

I've been there on drinking to ease the pain. Definitely makes for a nice short term solution. But in the end it leads to more pain. Alcohol is very hard on the digestive system, and it can prevent healing IMHO. It sure did a number on me with the wine making me sick due to the grapes in it.

Something else that might be causing you problems is H.Pylori. They can do tests for it now to detect it. If you do have it that might be causing some pain and digestion problems. I treated it with mastic gum. Took a while but it worked. So, just some things to think about.

Hi GFinDC

I can relate to some of what you are going through.

I spent at least 15 years undiagnosed. I ate and drank the things that were damaging me as they caused me momentary relief.

I'm only diagnosed for a couple of weeks, so I don't know what the future holds for me.

My problem is that I don't absorb any nutrients, so taking a vitamin is useless.

I'm hoping that changes in the coming weeks.

I think it is, because I'm noticing I don't need to eat as much - I can eat a little meal and I'm not hungry again for hours. I can start re-introducing exercise already. I went to the gym and did a brisk walk on the treadmill for an hour - this would have left me in bed for 2-3 days just few months ago before I was completely bedridden. I was up at 5am and felt the normal pain of a workout, not the excruciating pain that I'd come to know. To think I ran marathons at a 7 minute mile pace just 15 years ago would be impossible for anybody that saw me today could believe.

I lost my job, I lost my wife - people only will stick by you so long before they write you off as a lost cause.

Keep going to the DR. and ask for specific blood tests - like hypothyroid panel - something in addition to gluten is causing your body to not process nutrients.

I know at my worst these past 6 months all I wanted to do was drink - just enough to numb the mind.

That will not fix anything, and will create problems of its own - it's just another grain and I'm seeing grains aren't good for me, you, us.

I hope I am near the end of my dark tunnel, and I hope that you can get some discovery going in your own world. Then I will play you at Tennis, TennisMan.

Ron

It's not fun is it , sorry it took you so long to get diagnosed . You should start to absord better once your villi have healed . Do you think vitamin injections would help you absorb ?

That's good you can start exercising again hopefully you will be running the marathons again soon . Sorry about your job and your wife . I feel like a write myself off a lot , most people don't actually believe I have health problems they just think i'm being lazy :S Which is kinda annoying if only we could pass celiac disease onto other people

I will ask the doctor about the hypothyroid panel and the vitamin deficiencies . I find drinking calms the stomach pain down usually 1 drink before dinner helps the mind and stomach and don't really drink a lot when I drink just one or two . I drink cider so no grains just apples .

I too hope you get things sorted Ron , Thanks and I look forward to having a tennis match , I really miss playing tennis maybe one day I will play again

I agree, B-vitamins may help and cutting out alcohol can help too. It wouldn't hurt to go to a doctor and get your vitamin levels checked. Soy or nightshades may cause symptoms too.

I will ask my doctor about B vitamins , I see some gluten-free products I get on prescription from Juvela have vitamin B added too them but I don't get the products much only a couple every 6 weeks . I have cut alcohol out for a while before but it didn't make any difference really . I have done a few elimination diets with the dietcian and potatoes was something we tested seems i'm ok with them and I don't really eat many other nightshades or soy . I do have a problem with some fruit such as pears , peaches , uncooked apples , I get a sore throat and a little swelling but doesn't seem to affect my stomach . I am going to an allergy clinic soon to test the fruits and a possible latex allergy I have read certain foods can hurt the stomach with the latex allergy

It may not be the case for you but for me it was realized that my main issue was the anxiety. I was a bit depressed but that was a direct result of the anxiety issues not due to a brain imbalance. When given the drugs that are combo drugs for both I not only didn't get any better I got worse. Once the anxiety was taken care of I was then able to do more of the things I wanted to do without fear and life became much better. I take a minimal dose of alprazolam (generic Xanax cause the name brand is not gluten free) and I have my life back.

Have you had your doctor check for other vitamin deficiencies? Sometimes stress level B's might help. When you were taking D was it one that is just D or did it have calcium in it? If it had calcium talk to your doctor about taking just D3.

You mention drinking makes you feel better. What are you drinking? Some of us will have trouble with distilled gluten grains even though most tolerate them. If you are drinking a distilled gluten can you try drinking something else? Or doing something like going for a walk or doing another activity instead of taking a couple of drinks.

Also take a good look at what and where you are eating to see if any gluten could possibly be sneaking in. When we have neuro effects from gluten we many times have to be super strict with the diet which does mean going with as clean of a diet as possible.

I know how tough these issues are and hope you can find something that helps you feel better.

I think my anxiety is probably worse than my depression , I think the depression is probably due to all the ongoing health problems I have but the anxiety could be caused by a few things . I have read on anxiety / depression forums the tablets can make worse and have some nasty side effects , it seems kinda wrong risking new symptoms and getting worse to get better . Did it take long to get rid of the anxiety ?

No I did check magnesium levels once but haven't checked anything else apart from vitamin D . When my GP said I had a vitamin D deficiency she thought I may also have vitamin A , K and E deficiencies but she left and I never got them tested most doctor's don't listed when I say about vitamin deficiencies . I'm not sure really I was taking Adcal D3 lemon tablets I will have to take a look , I wouldn't mind getting injections but no doctor's have offered vitamin D injections yet .

I drink cider I usually stick to a couple of brands and check online to make sure they are gluten-free some brands have suitable for coeliac's on them . Many people suggest walking but because of my anxiety I really don't like going out and it usually makes things worse , I did buy a swingball for light exercise but it's difficult to use as my stomach is hurting most of the time , I have been trying to learn italian for something to do but find it very difficult to concentrate .

I think my diet is very strict I have had tests to see if i'm accidentally eating any gluten always come back normal , I find these days i'm eating more fresh foods but seem to be allergic to a lot of fruit which is annoying , I don't eat out a lot . I have been making gluten-free cakes as I find that quite relaxing and enjoyable .

Thanks , and Thanks for the reply

Hi , I was diagnosed with celiac disease in 2003 and the last 8 years I have had a lot of other health problems mainly back and stomach problems . After about a year and a half on the gluten-free diet I started getting depression and anxiety nothing to bad just a couple of days but the last few years since really since late 2008 it's been getting worse and worse , I have been to counselling many times and I'm currently going at the moment . I was told by the counsellor I need tablets for depression and anxiety . I have been to my GP and have been prescribed Citalopram but I really don't want to take it because of all the side effects.

I'm 100 % sure my depression and anxiety is related to celiac disease or maybe a vitamin deficiency ? I have got a vitamin D deficiency and haven't been able to take vitamin D since february because of kidney stones . But I wonder about other vitamin deficiencies causing the anxiety or depression is that likely ?

I have also read many article's about having celiac disease causing depression and anxiety . I just want to drink alcohol as that helps my stomach and my mind but that's not a good solution . I think it's the gluten-free diet that caused all the problems and after almost 10 years i'm really fed up with the gluten-free diet I really hate celiac disease. Does anyone have any advice to what is causing the depression and anxiety and if it could be connected to celiac disease or some vitamin deficiencies etc ?

Thanks

Doctors and nurses will tell you all sorts of things but they are sadly WRONG. I wish I had the link to that article. It was something like only 30% accuracy on the biopsy precisely because they don't do it right, and because the test is inherently easy to screw up. Your small intestine is so many feet long and they take 4 tiny teeny weeny samples. Very easy to miss the mark. They also don't go very deep. One woman on here was part of a study where they used a camera after negative biopsy and then they found her villi damage much lower than the biopsy goes.

Then there are those docs who just don't read it right. Any villi blunting or damage means celiac and some of them look for all out war in there before they will give a positive DX.

The anecdotal evidence is a nuclear bomb to the 99% accurate b.s. There are loads of people with positive blood tests and negative biopsies. Then they come here crying and losing their minds because they were told they don't have celiac yet they are so sick or they improved on gluten free.

The celiac biopsy is a medical travesty in America. It's the "gold standard" becuase it makes the doctors so much GOLD! Why do a simple blood test when you can charge my insurance for a surgery? It's despicable that after positive blood tests they insist on biopsy to "confirm." It's a dietary change! They torture patients by keeping them on gluten and putting them through an invasive procedure for what?

Yeah nurses and doctors "say" a lot of things about celiac but stick around here long enough and you'll find that they are sadly so misinformed.

So it's more the tests being done wrong than not being accurate . celiac disease causes inflammation and villi damage I just don't get how doctors could miss it . I'm from england maybe we have better testing over here my old doctor boasted about how he had performed over 5000 endoscopy's I also hear patients told to start a gluten-free diet before the endoscopy , I hear stories for example someone has been gluten-free for 2 weeks before the endoscopy and tests come back negative , how can the villi repair in 2 weeks if a small amount of gluten can do 6 months of damage it all seems confusing .

The biopsy results are 99.9 % accurate that's what I have been told by several nurses . I don't get how any celiac could have negative biopsy tests unless the doctor don't do the test right . Lately I read cross contamination or a coin sized amount of gluten can will cause damage to the villi for 6 months , so if people have eaten gluten there whole life the tests would see the damage .

Exactly. Since when was cancer a "trendy" disease or having AIDS "trendy"?

No disease is trendy , It's just a ridiculous comment , it's a shame how our disease is treated as a joke .

Not for us, but it has in fact become a bit trendy. BUT, if it created more products available for us or more legitimate awareness....bring it ON!

Although, Domino's Pizza got it very wrong! Bet, they will withdrawal their gluten free pizza campaign and product real fast.

The problem is the gluten-free diet has more awareness these days but it should be celiac disease getting the awareness . It's just about profit the gluten-free diet they don't really care about us who suffer from the disease . I blame the gluten-free fad , there was an article on here a while back about celebrities going gluten free and we all know these celebrities are pathetic doing anything for attention yet it's because of them the disease is called trendy .

Domino's Pizza is just ridiculous really , what were they thinking $

I'm surprised I haven't found anything here yet on the latest garbage said on the Today Show. Read this blog post by Gluten Dude: Open Original Shared Link

Apparently a Dr. Keri Peterson said Celiac Disease was a "trendy disease" and "easy to manage." Am I the only one who is outraged here? This is ridiculous!

I saw this on gluten dudes site , a trendy disease also angers me . I hate it trendy disease wow messed up it's a serious auto immune disease not a trendy thing to have .

Hope you feel better soon

Thanks for posting this - ALL of us are AMAZING , STRONG people .

Even at our weakest moment we are stronger then most people WILL ever be in their entire life time.

That really inspired me I agree 100 % . I woke up feeling down but after reading this I feel inspired to carry on and do something no matter how I feel

Thanks for posting

Sorry you have bad pain You mention kidney pain / problems . Have the doctors checked for kidney stones ? They can cause very bad stomach pains and can be connected to celiac disease . Hope you get better soon

I had to have an endoscopy after my blood test was positive , the endoscopy confirmed I have celiac disease . So if you think you have celiac disease endoscopy is worth having . Not a nice test but still worth doing .

I think it's wrong to hope you have Coeliac disease because it really is a horrible disease but I can understand why you want it so you can find out what's wrong and get better Good luck !

They already sound separate one ends with disease and the other ends with sensitivity lol .

I didn't get the impression that she had "trouble". Sounded like she may be on the gluten free bandwagon a little bit. I wasn't entirely sure of her problem with it. I didn't go into the details that I thought I was going to die, as did my family since nobody knew what was wrong for ages. and STILL suffer neuro effects! I just beningly smiled and left the store.

Can't stand the gluten free bandwagon people , I get really annoyed when people claim wheat or gluten is behind every health problem that ever existed . Probaly best you didn't go into details , sorry you still suffer neuro effects the disease and diet sucks

I was at a local health food store buying some organic sausages (on sale) as well as a few other things. I was chatting with the cashier about the crap in the food industry. She then tells me that the WORST food in the world is wheat and that nobody should eat that! I told her (because we had "bonded") nthat it wasn't a problem for me because I have celiac. She exclaims "Ohmigod! You are SO lucky!"

I looked at her questioningly and she explained "well, you can't eat it even if you wanted to!". Ummm. OK.

My husband compared it so saying "I am so jealous that you are anorexic! I wish I could fit into those jeans"

Silly people.

What a stupid thing for her to say but most probably she doesn't know the effects eating gluten has on us . Does she have trouble avoiding wheat ?

I found this spanish website Open Original Shared Link There are links on there too other spanish gluten free sites hopefully one has it explained well

I don't think the evidence of vitamin D causing kidney stones is strong enough to remain deficient and ill. Here's a couple articles to help you decide. It looks like maybe you could take the vitamin D if you eat lots of fruits and veggies.

Open Original Shared Link

Open Original Shared Link

It sounds like you are not eating the right foods for your body, maybe? Did your diet change a lot when you went gluten-free? Gluten-free bread isn't enriched like regular bread and there are also board members who have been deficient in odd things like molybdenum. Also have you tried going off dairy and soy? A lot of us react to those and you won't feel good emotionally if you are eating a food to which you are intolerant. I don't do well with dairy at all.

B12 is another big issue for us and B12 deficiency can really mess with your mind. It is pretty safe to pick up a methyl-B12 supplement at the drugstore and take 500-1000 mcg/day to see if it helps. Get methylcobalamin which is a form your body can directly use, not cyanocobalamin. Some people like sublingual B12 but I'm not convinced you don't just swallow it.

Thanks for the articles My doctor just said stop Vitamin D supplements for now , the kidney stones started in 08 and I went on Vitamin D in 09 so the Vitamin D didn't start the stones , I have to do some tests to see what has caused them my doctor said it could be a Vitamin D deficiency . I eat plenty of veg don't really eat much fruit as apples , pears , peaches etc give me a sore throat and make my lip swell , think I may have a latex allergy.

As I was diagnosed 9 years ago I can't really remember how much my diet changed when I started gluten-free diet . I remember I was only 15 when diagnosed, at school I just ate gluten free rolls ( the rolls were very big and probably had good nutrition but unfortunately the company stopped making them ) and the rest of my lunch was gluten-free . When I left school I stopped eating bread and ate lots of rice . A lot of the gluten-free products I eat on prescription changed in 08 the bread and pasta were very different . Nowdays I eat bread once in a blue moon , I don't really like bread . I stopped eating dairy last october I don't think it affects my stomach as after about 3 months I tried dairy a few times and had no reaction , I think maybe milk may give me headaches and makes me tired possibly makes my sleep problems worse . I don't really eat soy . I have done a few elimination diets and food diaries my dietican doesn't think I have any intolerances.

I will try and get B12 testes my old stomach doctor apparently checked all my Vitamins in 09 but he didn't test Vitamin D so it wouldn't surprise me if other Vitamins were not checked , I will try and get the results so I can check my levels myself . My counsellors say the mind problems could also be non Celiac related but I think vitamin deficiencies could also be a lot to do with them . Also I have had some strange tests results with Ankalosing Spondylitis and Lupus , for AS I had positive blood tests and x-ray was told I had AS this was in 06 than a week later apparently the x-ray was mis read and the doctors said I didn't have AS . Than in 08 I again tested positive for AS and Lupus but doctor said it's possible to test positive and not have the diseases even though I had the symptoms and one osteopath thought I had AS . But than I did another test for AS last year and it came back negative , it's strange I tested positive twice and than negative once so most probably I don't have AS .

I'm sorry you're having a hard time.

Going gluten-free was not enough to reverse the mental problems gluten gave me. I had bipolar illness, anxiety attacks, and serious sleep problems. I had to go on probiotics to improve my absorption of nutrients, and I take some pretty serious supplements to maintain my mental health. I take a complete multivitamin/mineral/trace supplement called EmpowerPlus from Open Original Shared Link, and a very concentrated fish oil supplement. Even with all that I was still vitamin D deficient so now I take extra D as well.

I don't know why I seem to need so much nutritional support compared to other people, but it makes an amazing difference in my mental health. If you're deficient on the vitamins and trace elements your brain needs to make neurotransmitters, or in the minerals that form nerve impulses, mental illness results. I really wonder if the link between celiac and mental health is because our intestines just don't work as well even on the gluten-free diet.

Thanks for the reply . Sorry to hear about the mental problems gluten gave you . I'm glad the vitamins /minerals help I have had problems with Vitamin D I took supplements for 3 months my level doubled I took it for another 12 months my level only went up by 3 , I am not allowed to take Vitamin D at the moment because of kidney stones I find if it don't take Vitamin D I get colds and viruses a lot , when I took Vitamin D for a 12 months I had 0 colds a few weeks after I came off them I got a cold and tonsilitis so Vitamin D helps me a lot I think . I was diagnosed in 03 with celiac disease and my Vitamin D wasn't tested until 09 and that was only because my GP went to a medical lecture or something and was told about Vitamin D deficiency linked to celiac disease . My doctor who diagnosed me has a website saying he can help celiac disease and vitamin deficiencys yet he never tested my Vitamin D it's very frustrating . I'm hoping to get all my medical records as I doubt most of my vitamins and minerals have been checked . Luckily I have a great stomach doctor now and he is checking my vitamin D every time . I agree about intestines not working as well even on the diet . I'm just annoyed all the mental problems have gotten worse the longer i'm on the diet , I don't remember having them before I was diagnosed .

I'm so sorry you're having a tough time. I wish I could offer words of wisdom but I am a newbie (diagnosed only about 7 months ago.) I honestly think that for me being gluten-free is going to be an ongoing mourning period where I am ok most of the time but every once in a while it smacks me in the face and I feel frustration, regret, anger, whatever. I also struggle with anxiety and sleep issues...I am hoping they will improve but try to take it one day at a time. If I get too wrapped up in it I end up increasing my stress and feeling worse and worse and worse. Then I have to snap myself out of it which is easier said than done some times. I try to make time for myself every day (whether it is reading or being on the computer or whatever I feel like that day), make sure to get as much exercise as I can, take time to be involved with family and friends, eat as healthily as possible, etc. I also try to ignore people who have no clue about the gluten-free lifestyle when they start in on it -- if I can use it as a teaching experience I will do so and luckily the people around me have been very patient about my lectures and comments about being truly gluten-free. I'm sure others will have more and better words of wisdom. You've come to the right place for support!

Thanks for the reply . It does really suck when we get them feelings . It's hard not to get wrapped up in it sometimes I try not too get annoyed talking about celiac disease but I feel celiac disease so angry talking about it even if people are just asking friendly questions or suggestions , i'm also a bit stupid lol , so sometimes I think they are saying something negative and I get angry and than realise I misunderstood them and sometimes they are saying negative things , I think most people's attitude is your on your gluten-free diet so stop complaining for no reason . I like to go to gym or play tennis but have some stomach and back problems are stopping that at the moment , I will have to try reading again