smile

Ive not posted in a while. Im not sure how long Ive been gluten free now, possibly just over 4 months. My dietician agreed that gluten was doing me no good eg weight loss/couldnt gain weight, tiredness, feeling sick daily, frequent bowel movements and tiredness. A few months in it was also suggested to try going lactose free. Well I can say all in all I have very little problems with bowel movements up until now, I feel sick maybe 3 times a month and the hair loss has stopped completely.

Now the tiredness has been extreme lately, Im also getting pain/aches in different points of my body. My doctor thought it was in infection and prescribed antibiotics. It made no difference, I was also having trouble sleeping, waking up in the morning so tired. I was also getting chest/back pain. I went back and was sent for tests for inflammation ans vitamin d levels. My vitamin b levels and iron/ferritin were all normal and fine as is thyroid, glucose etc. I was prescribed something to help with the sleep and it has helped. However the tiredness and pain was so bad I spent three days in bed. Last time I saw my gp he said my vitamin d levels were 10 below the normal level and told me to get more sun (we are in the winter, you get up its dark, come home from work its dark). I saw another doctor (out of hours) who has said I need vitamin d and calcium supplements.

Now Ive got a good friend who feels what Im going through is down to chronic fatigue syndrome or fibroymalgia. Also wanted to say Ive still not gained weight (Im around 6st 12 -13 now) Ive also experienced stomach cramps/diarreah on a few occasions).

Every doctor I see puts it down to anxiety, which I dont believe, my parents tell me Im just tired because Im in bed so much. The reason Im in bed is because even carrying a box makes me arms ache for the next few days. Then someone I trusted has said its because of my diet and that Im probably not eating properly. I just dont get it why will no one listen to me, I just feel like telling everyone Im fine and to leave me alone if they dont want to believe me. From what Ive read a vitamin d deficiency can take a while to get like that, plus is gluten free that bad, I eat fruit/veg/meat/potatoes/rice/eggs/fish/gluten free cereal/break and fruit and nut bars. Surely that is ok. Im starting to feel like all of this is my fault. Ive not been able to go to work with all this tiredness/pain/headaches.

I just dont know what to do anymore, please tell me if my gluten free diet is probably the cause of my recent problems.

I recently bought some potato crisps that were gluten free, both days that I ate them I had quite a few bowel movements, where I had got down to once a day, I also had a slight headache and slight reflux. The only other thing that I had eaten on both days was hummus. So on reading the ingredients for the crisps I saw that they contained yeast extract. From what Ive read online, yeast extract contains barley, which isnt safe for people gltuen intolerant. Could this have been the cause for my symptoms. I just think I need to stay away from these crisps now.

Hi again,

Im after some advice mainly. Ive been gluten free for well over a month now and lactose free for over a week. The feeling sick has eased. Still not been able to gain weight, have tried putting weight on with muscle eg doing weights etc, still not change.

Now to the point lately I have noticed the tip of my tongue stings/sore etc and my mum has said it looks red (I dont know what is should look like). This isnt the first time, this was the same maybe 3 months or so ago. My mum believes I have a deficieny eg vitamin b12. I have had my blood checked recently and have been told I dont have anemia nor do I have low iron/ferratin levels. The blood test taken was a full blood count. Would this have shown if I was b12 deficient.

Also this past week or so Ive been feeling very anxious eg panic attacks, where my breathing gets all out of sync, then I feel sick and have tight chest (which could be my asthma). I feel so tense in my chest etc.

Would a b12 deficiency cause this. I dont know whether to see my gp again considering they have already said my blood was normal.

sorry to be writing another post.

Im just so fed up. For a good number of years Ive not been well eg depression. Now Ive turned things around, but physically Im falling apart. I just dont know what to do anymore.

Ive been gluten free almost 4 weeks now and Ive been lactose free for about 4-5 days. Now this last 3/4 days Ive been having slight headaches. Then today I had a heavy head again, it went away after about 15 mins, however I then had about 4 trips to the bathroom for bowel movements. I also had lost of noises from my stomach and wind. I cant think of anything that Ive eaten that can have caused this.

Then about an hour later I noticed that one of my fingers was swollen, there is no redness or itching. I dont think Ive been biten by anything.

Ive seen so many gps about feeling physically unwell in the last year. I just want to be physically well now to make everything more complete.

Thanks for your reply. The doctors have never been concerned with the weight to be honest. I was told by a registerar that I have always been light when he has only seen me twice and a few year back I was 36lbs heavier and when I was at college I was averaging around 122lbs, for me that is my normal healthy weight.

Im going to see if my diet changes make anymore difference in say a month. In my daily diet I get fruit/veg/yoghurt/nuts/gluten free bread/meats/poatoes or rice and chocolate soya milk.

I was never told what IgA it was. All I was told was that my blood test showed normal for one idicator of coeliac, but the other one was slightly raised (the IgA). I was told that this suggest I should see a specialist. However my doctor spoke to the specialist and they said I definately didnt have coeliac. I wont be seeing my doctor for a while for any reason so wouldnt be able to find out what IgA it was. They are not very fourth coming in giving details. This raised IgA has been the same for the past year, Im assuming that means Im producing antibodies for some reason.

Ive also noticed that since being gluten free that Im losing less hair. Usually when I wash it you could pick up a clump of it, now there is about 3 hairs, which is pretty normal. Im glad to be seeing some changes.

Im just a bit worried because coming up shortly I have to go somewhere (they are providing lunch)and I know that if I dont eat anything people are going to assume I have an eating problem (even more so with how thin I look), mental health. It would be easier to say I have coeliac than to say I choose not to it gluten. Im afraid of being judge as choosing to not eat certain foods. I know what some of the people Im going to be around are like and they are professionals. Any idea how I can deal with the situation. Im not going to eat there anyway, Im going to eat before going. I just dont want to be judged and looked at as if I have a problem when I dont.

Thanks for your replies. I guess my main concerns are the feeling sick and losing weight. Ive decided that Im going stay gluten free, my dietician had told me whether Im diagnosed or not I should stay well away from gluten. Another thing that has seemed to have disappeared slowly over the last three weeks is a rash I would get on my legs. It just would always be there, however it has totally been gone for at least a week now and my legs dont itch as much. I am also going to go lactose free, from what I remember when I have eaten things like cheese pizza or jacket potatoes with cheese I tend to not feel great afterwards. Funnily enough I had a gluten free cheese pizza on saturday, both sunday and monday I felt sick, had slight headache etc. Im shocked that even the specialist (saying that I never actually met them because they were always off sick) hasnt even considered that I could be coeliac or have non coeliac gluten intolerance, plus no mention has been made by them about my rasied IgA. It seems that it has no importance. I will just have to follow eating what makes me feel better and not hang around for a specialist to confirm what I am doing is right.

I finally got some feedback regarding my raised IgA (blood tests results). My gp had spoken to a consulant I saw months back and they said I didn't have coeliac and they were pretty sure. They believed I either had IBS,a mild case of malabsorption. It was suggested I take something called Colestyramine. I then told them that since being gluten free Ive had normal bowel movements. No problem on that front. So dont have to take that. A last resort is to try a lactose free diet. Now I dont believe I have IBS. My bowel movements are normal eg formed and once a day. I dont have stomach cramps nor have I ever been constipated. I explained that Im still having weight loss and feeling sick. I was told if it continues to go back and see them again. My parents were like "how much weight do you need to lose to get help". Im almost down to 6st 11. Some of my size 8 (uk) clothes are falling off me, if I were to not wear jumpers/hooded tops, people would actually think I dont eat properly. Sometimes I feel paranoid that people think I have an eating disorder. Does anyone know of anything that could be going on. I spoke with my GP about previous history of overdoses on medication and asked if they could contribute to my health now and they said they were pretty sure it wouldnt have caused any damage. I was also told I can eat whatever I want eg gluten containing foods.

Im from the uk and on sunday I had a roast beef joint from Marks and Spencers (I no longer have the packaging), it said it was a roast beef joint with roast beef stock and Im not too sure if it was also listed to have a small amount of mustard in it. Now yesterday I felt quite sick again, have not felt like that since going gluten free. I even had to have some ginger to make me feel better. I cant see anything else that Ive eaten that could make me feel that way. Is beef stock gluten free or does it contain gluten. I know I should have been more careful. I have a feeling this is what made me feel ill yesterday.

Does anyone know about beef stock and the mustard?

Thanks

Just found the packaging there is no mustard and it doesnt list anything that would suggest gluten apart from the roast beef stock, which I dont know if it has gluten

Hi, I wish I could help you, but Im looking for some answers myself. Im almost 3 weeks gluten free and I had been feeling great, now only having one bowel movement a day, no gas/wind, no tiredness, no headaches, no feeling sick and no low moods. However in the last few days, say 4 Ive started to feel nauseus again and its getting me down. Ive also not been able to gain weight. My dietician asked me to drink chocolate soya milkshake everyday and I have done for about 8 weeks. Ive not gained a lb. I eat good amounts, never go hungry, eat plenty of meat, veg,fruit, potatoes, rice,nuts etc and also have gluten free pasta/bread.

I feel like Im actually losing weight bodily, my stomach/waist seems to be shrinking, even if the weight on the scales is only less 1lb or stays the same. I cant seem to get above 7 stone. Im still losing my hair.

My dietician has said to my gp that he hopes they diagnose me with coeliac based on the blood tesr results and previous history of symptoms and change in diet, but if they dont I should still stay clear of gluten for the sake of my future health.

I just dont understand what is going on. Ive made sure Im consuming no gluten at all and that nothing is cross contaminated.

I hope you find out what is going on.

Over the last 2 1/2 years I have lost about 2 and half stone. In the past year Ive not been able to go above 7st. I have been gluten free for about 2 weeks now and most of my symptoms have eased to almost completly going. I saw a dietician who suggested drinking chocolate soya milk everyday to increase calorie intake. Now I thought I could see my weight going towards above 7st, but now Im weighing 6st 12 and I am 5ft 2. I dont have an active lifestyle and I feel Im eating enough. My daily intake is usually - breakfast - banana, grapes, strawberries with vanilla yoghurt and two slices of gluten free bread with butter and marmalade.Mid morning I have the chocolate soya milk followed by a handful of cashews and brazil nuts.Lunch - I have a sandwich with gluten free bread with either dairy free milk or salmon and cucumber. With the sandwich I usually have a fruit and nut bar. Then for dinner I have meat (chicken/lamb/pork or beef) with either gluten free pasta/brown rice or gluten free pasta with a variety of vegetables.

Sometimes I also snack on gluten free crackers with hummus, gluten free biscuits or rice crisps.

It just doesn't make sense. I had my iron levels checked, they were all normal. My hair is still falling out a lot, but I dont seem to be having anymore symptoms.

Any ideas what could be going on or if it is likely my weight will change?

I know this is going to sound like a stupid question, but I don't know the answer. Is it soy you get in soya milk? eg is it the same as soy sauce etc. I know a few weeks back I had some nuts/seeds coated in soy sauce and I didnt feel too good afterwards so didnt touch it again. I was unaware that this is the same with soya milk. I have soya milk in my breakfast cereal and also have chocolate soya milk each day (was told to drink that to help me gain weight). What alternatives are there to soya milk and normal cows milk. The only bits of cows milk that I have are in my tea. Today Ive been back and fourth to the toilet again. I just want everything to sort itself out.

Thanks again,

I just dont want to feel nauseous anymore, its so hard to pin point what it is. I generally feel fine after breakfast and a snack (soya milk), then after I have lunch (a few hours later) I then get nauseous. Then I feel ok, have dinner, then about 3 hours later I feel nauseous again. Breakfast in normally fruit/yoghurt and gluten fee bread (sometimes gluten free cereal), I have soya milk and a handful of nuts, lunch is usually a sandwhich of gluten free bread with tuna or dairy free cheese, plus soya/rice crisps. Then dinner is usually fresh meat, brown rice (or gluten free pasta or potatoes) and vegetables. I just cant pin point anything. I just feel so rubbish about it, the nausea is one thing I cant cope with. It just makes me not want to eat anything.

Thanks for your reply. What you said makes sense, however its a bit disappointing to now think there could be other foods my body is reacting too. How would I work out what it actually is. Im seeing a dietician soon and have kept a food diary for the last month writing down all my symptoms. Maybe they will be able to help and if need me write a letter to my gp for more tests. I would find it hard going back to my gp, Ive seen so many doctors in the last year and I know some of them dont believe the things I say.

Ive been gluten free since wednesday, have made sure there is no cross contamination. On the whole I feel much better, my bowel movements are normal, no bad tiredness, well no tiredness at all, no headaches etc. However Ive noticed this last few days Ive been feeling sick slightly, not as much as before, but very depressing still. Ive also noticed that I seem to have had a big break out of acne, its all over my back, on my chest, on my face and on my neck (near the sides of the chin). Is it possible this is a withdrawal symptom? How long would it take to feel better? Like I say I do feel much better eating gluten free, even when I eat food it feels like its going down nicely, no sluggishness or anything. Its really strange because my mum suffered from crohns years ago and had surgery. Now she was curious to see if going gluten free would have any effect on her, she has been gluten free just for two days and there has been a significant change. She has said if things continue to change she will also stay gluten free, she has also said that when she eats gluten free it digests nicely and feels satisfied after eating. I think it will help if she eats gluten free too.

I got my blood test results back and my GP has said that there was two tests for Coeliac disease, one came back normal and the other was slightly raised (IgA they didnt say which one). It was confirmed that this same thing was raised this same time last year, but was ignored. I was told that its possible Coeliac and that they would like to speak the consultant and then if need be refer me back to them.

I couldn't take anymore of the feeling ill and because Ive been at work I spoke to my dietician. I know they cant diagnose anything, but we both felt that gluten was making me feel ill. So since tuesday Ive been eating gluten free. There has been a big difference already. Usually after being up for as little as two hours I would have been to the toilet at least 3 times. Yesterday I only went once and that was in the evening, it was much better than normal, looked healthy. Ive had no tiredness, no heavy head and just feel much better.

I have to see what my GP says after speaking to the consultant and I know I cant be given a diagnosis just by blood tests, but I dont think I can get through by eating gluten containing foods and I couldn't go through with an endoscopy.

I just feel like Ive got an answer for all my physical symptoms, if Im right I would be so tempted to tell everyone that treated me like I was attention seeking or it was all in my head.

Just after some advice. My symptoms have gradually got worse since the weekend. All of yesterday I was going to the the toilet (at least 7 times) and it wasn't very formed, I was exhausted, had a heavy head and Ive also lost weight. I also tend to feel low and emotional when feeling ill and tired. See when this happens it just tells me it is not IBS. Ive got to wait until thursday to get my blood tests results. But I want to start gluten free now, I can't risk being ill at work, I work in a customer facing environment and its not so easy to take a break (I dont have any because my hours are short). I cant be losing anymore weight either. Do you think it is ok for me to go gluten free now. I dont intend to have anymore tests if that helps.

Thank you. One last question regarding DH. On my legs, inside of the shins, I get very itchy and have very small red spots. They seem to come and go, however now I seem to have the same thing on my back, they are very small, but can easily be seen, its like a rash. Most of it is on my lower back either side of my spine, then I have some more going up my back and across the shoulders. I remember this happening when I felt really bad earlier on in the year. From what Ive read DH forms like small blisters, mine dont blister, they are just red and itchy. I just wish I could see my someone when it is like it is now, but then you know by the time I get an appointment it would have eased down. Do you think this sounds like it could be due to my intake of gluten. Ive also noticed that the last two days Ive started to feel nauseous again in the evenings, something that had eased.

I know how you feel about others thinking its all in the head, that is one of the most frustrating things. I saw a GP (not my normal one) recently and mentioned my loss of hair and tiredness. I told her that I had been given iron tablets for three months earlier on in the year and she made a comment about me obviously reading up symptoms of iron defficeny. I definately wont see her again.

I have not other tests planned. I had the tests ordered by my GP. The Gastro person discharged me a few months ago so I am not under them anymore. It was my dietician who disagreed with the IBS label and said he was concerned about my health. So sent my GP a letter saying he fears for my future health and I need to be tested for Coeliac disease. My GP seems very thorough, so hopefully she will help me get to the bottom of.

Im glad that your bloods came back positive, because if you they hadn't and your biopsy was negative Im guessing they would have said you didnt have coeliac. Now I can see why so many people are undiagnosed.

Thanks

Thanks for your reply, Ive had the blood tests taken a few weeks ago and am waiting for the results now. That sounds a bit bad about the test eg biopsies sometimes coming out negative due to the nature of the intestines showing damage in a spotting nature. That makes me even more want to just start a gluten free diet without even thinking of having a biospy taken. Im due to see my dietician in almost 2 weeks, so maybe I should give them a ring and say that I want to start gluten free and see how that goes.

Thanks for the reply and info. Ive not been sent for an endoscopy. When I saw the gastro person, after ruling out crohns disease they discharged me and said I should be fine in a few months. I was also give a barium x-ray which was normal. After seeing a dietican recently they sent a letter to my gp to suggets tests fro coeliac. I saw my gp who said if my blood tests suggest it they will refer me back to the gastro person to have an endoscopy. Its just so annoying because I get the impression that no one really thinks anything is going on. But I cant help but feel something is happening. When I was tested months ago I used to get an ache in my right hand side and its started again, lots of hair loss, in between my fingers they are becoming drier and drier, with a redness too. It started on one hand and is now on both. Ive never had dry hands or anything like that. Even though Ive put weight on the scales, when I put my clothes they seem to be looser. Its pretty annoying, Im pretty much wearing the same clothes all the time, usually a fitted t-shirt and skinny jeans. Ive also noticed that my nails on my hands and feet dont grow like they used to, I hardly have to cut them anymore. There are all these changes and no one has answers for them. Sorry for the moan

Sorry to make another post, Im just trying to figure things out. Does the terminal ileum have anything to do with coeliac disease. Basically about 6 months ago I had a colonscopy to test for crohns disease. When I was given my discharge paper it said the colon was all normal and that I had biopsies taken. It also said I had mucosal erythema of terminal ileum. Now from what Ive found that is a redness/inflammation of the terminal ileum. When I got my results back from the biopsies I was told everything was normal and there was definately no crohns disease. I was never told what the mucosal erythema of terminal ileum meant. I know the terminal ileum is the end part of the small intestine. If I did have coeliac disease could that cause the inflammation of the terminal ileum and if they had biopsied it would it have shown up or would they have missed it if they were only looking for crohns?

I just want an answer to all this, Im very tempted to just start eating gluten free, even when I haven't got the blood test results back yet. Another thing I have noticed is that when I have bowel movements in most cases I have quite a bit of mucus, does this mean anything. Sorry Im not very well informed.

Thanks

Hi,

Im a bit confused with my weight at the moment. Ive seen a dietician and they suggested to help me gain say a 1lb a month I need to increase something each day. They said it would be easier for me to gain weight through fluids than actually eating more. Now for over two weeks now Ive been drinking say a large glass of soya milk per day, very slowly Ive gained just under a 1lb, yeah I know its not much when you think of the grand scheme of things, but that is the highest Ive been in about a year. Now the confusing part, on the scales it says Ive gained some weight, but Im pretty sure that physically eg my stomach, arms, legs etc Ive lost weight eg fat and muscle. Now how does that work. I don't do much exercise and only work a small amount each week, so Im not very active. Is it possible to gain weight on the scales, but lose weight physically. Ive got another week to wait for my blood test results, which a gut feeling tells me will come back negative. Im also waiting for some blood test results on my iron levels. My hair loss just wont ease. Very frustrating.

Thanks for your reply. This latest time I was off gluten was only for a few weeks, the most Ive gone gluten free for was about 4 weeks and that was back in feb/march. I guess my problem was I was told I didn't have coeliac and it was just IBS so I assumed that it wasnt gluten causing my symptoms. It just feels like I have all different people saying different things. The dietician I saw was pretty sure that IBS was not my problem. The results of the IgA was a year ago october and I was never told what they actual results were. It was a bit strange because I had a blood test taken, then recieved a letter from my then GP saying I needed to come in and see her. When I saw her she told me about the raised IgA and that I needed another blood test to re check the levels. It was still raised the second time round, but another GP told me it was nothing to worry about. I think I do need to be tested again, my dietician wants to see me in 4 weeks time, so dont know if that will be enough time to have my blood tested again. What are the chances of having a video capsule endoscopy. I only ask because I dont think I could have a normal endoscopy. I have a big fear of being sick and have a strong gag reflex. That would be the worst test for me. When I had a sedative for my colonscopy I was awake throughout and remembered everything.

Hopefully things will be sorted soon.

Hi, Im back again. It seems I can't get away from the possible diagnosis of coeliac disease. I written a few topics on here in the last year. I saw a consultant in gastro and he thought I had crohns disease. I had a few tests and they all came back clear. I was discharged and told if I have any problems to come back. I just went along thinking I just had IBS as first told by my GP last year. I was still having problems with my digestion eg not putting any weight on, some days having lots of bowel movements and feeling sick in the evenings. So I asked to be refered to a dietician. So I saw them for an assessment last week and he didnt think for one minute I had IBS, he said from what I was eating (I started having fruit for breakfast and eating gluten free bread, my bowel movements went to once a day and were more solid) breakfast and drinking (lots of caffeine) my IBS would be worse not better. He believes I have coeliac disease and is worried about my future health.He has said that it is easier to gain weight through fluids than eating so advised me to drink a glass of soya milk a day to put on weight. He wants my gp to send me for blood tests again. I dont know what to think. Since seeing him on thursday Ive been eating normal bread, muesli for cereal and cakes etc. The first morning after I had a heavy head, like a headache was starting and for the next few days I had joint pain in my knee. I had this earlier in the year, but it cleared up. Ive not felt sick yet and have only had an extra few bowel movements per day. Today,4 days into eating normally again my head feels fuzzy (like Im not thinking straight) today Ive felt dizzy on and off, heavy head etc. My legs itch quite a lot and I find it develops into a bunch of small red rashes. However it does clear up again by the following day, then comes back again in the evening. Ive also been losing a lot of hair, but I also suffer from PCOS. I don't know what to think, I know last year I had two blood tests that showed a raised IgA (was never told which one), but was told it was nothing to worry about. Im confused because nothing seems to be making sense. Does anyone know what this could sound like. Im currently 6st 13, so basically in the last year Ive not gained any weight. When I had to have colonscopy to be tested for crohns I went down to 6st 11, but I think that was due to the prep and low fibre diet for a week beforehand. Thanks

Thanks for your reply. I was never told whether it was the total IgA or not. I actually did try going gluten free for a while. It was back in april and I did it for a number of weeks, possibly about 9-10 weeks. As soon as I started it and for a good while my bowel movements went from 5+ a day to once or twice, sometimes even skipping a day. I still felt sick on the odd day and a rash that I had constantly on my chest cleared up. Now Ive been eating gluten again since the start or June and its lately that the bowel movements have increased, just these past few days the rash has appeared again (its not DH, no one knows what it is). I managed to gain a few pounds, but have lost it again. I have a specialist appointment at the end of the month, but not too sure if I should see my gp before then to ask for a blood test. I dont know if Ive been eating gluten long enough for it to be tested. Ive definately eaten more than 4 slices of bread a day, plus biscuits or cake etc.