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I dont know what to do anymore. For over a year Ive had stomach problems eg feeling sick, frequent bowel movements, tiredness etc. I was diagnosed with IBS, at the time I had two blood tests taken and was told my IgA was raised, but it was nothing to worry about. I have also been losing weight and an underweight. I just cant seem to gain weight, my arms, legs and wrists are very thin. Since then Ive seen a specialist who suggested I had crohn's, after a blood test, colonscopy and barium follow through everything came back normal apart from two areas of inflammation in the terminal ileum. So now Im left having no idea what is wrong. This has just been going on for so long and its depressing. I dont know whether I should ask for blood tests again and maybe the camera down the throat thing. Also Im in the uk, can you be put out for the camera down the throat, I dont think I ccould be awake for that. I have a phobia of being sick and a strong gag reflex. I just dont think I could be awake. Im just fed up of knowing that something isnt right, but been told there is nothing wrong.

I dont know what to do about my weight, I look so thin. If I dont wear anything bulky I get told (from my parents) that from looking at me from behind I look anorexic. My back and shoulders look the worse, there is literally no fat on them at all. My wrists are way too thin, it actually worries me that they are not strong enough too cope should I have a knock to them. I don't think Im underweight yet, but not far off.

Another thing that I just wondered if anyone knew about is iron tablets. Ive been on mine for about a month now and I know a side effect is your bowel movements turn black. To start with mine did, but now they are just the normal colour. Does anyone know what this would mean?

Also my bowel movements seem to be increasing, the last few days Im going up, now three times a day. I feel like my body is missing something, an empty feeling. The thing is Im eating good amounts, but nothing is helping.

I dont know what is going on.

will do thanks,

also what does the Globulin in the blood test mean, what does it test for?

what would a reading of 33G/L calc mean?

Thanks

The rash that I had confuses me because it didn't blister like DH, it was a red/orange colour over both sides of my upper chest. It would only become itchy when it began to dry out and all the skin would fall off, then the red/orange cycle would start again. At the moment this is the clearest it has been, you can only just about see the tinge of red/orange colour and a slight bit off dryness. Im seeing a dermatologist tomorrow for something else, its just a shame that the rash wasn't still there.

I don't know what to actually do now. My appointment with the specialist is on the 14th june and I assume it is just a consultation to start with. Back in october time thats when I had a blood test and was told I didn't have coeliac disease. However on two occassions my IgA level was raised. Many months passed of feeling ill and having a lot of symtoms. Two weeks ago I had a another blood test, which tested a lot of things. I know one of them was for the globulin level, which had a result of 33 G/L cal. I don't know if this means I definately dont have coeliac and maybe have non-coeliac gluten intolerance. So I dont know if I should go back onto eating gluten containing foods for when I see the specialist and see what they say, however I dont think I can cope with feeling sick all the time, feeling tired and going to the toilet all the time.

Thank you both for the replies.

Im from the uk, so my tests are all on the nhs.

I couldn't take it anymore, I felt really ill. So I decided to try and go gluten free. Ive not had any gluten since last week tuesday and slowly but surely there have been some changes. The rash that Ive had on my chest for over and year and didnt respond to treatments (steriod creams etc) has almost completely gone. I was told it was two different things, one being contact dermatitis and two a yeast infection. So since both of those diagnosis Ive not changed anything like my clothing, washing powder and not had treatment for a yeast infection. Only difference is gluten free. My bowel movements have changed greatly. Im now going once a day at most, on the odd day Im not going at all. I also noticed that (a side effect of iron is black motions) after going gluten free my motions were black again after being on iron tablets for a month. I no longer feel tired (arms and legs) at work. The acne on my face that has been very aggressive, very red looking for over a year has started to clear up. The sickness has been much less than normal.

The only thing that hasnt improved is my weight. I know its only a week ago I started gluten free, but I seem to have lost weight instead of gaining. So I now weigh 7st 2 at 5ft 2, which is a low bmi.

The only time Ive had stomach pain and more bowel movements is when I had egg (eating in a cafe) and cheese. Both of which I dont feel agree with me. So I may stay away from them.

Do you think its still important I go to seem my specialist in June and explain all this. I dont want to waste their time or an appointment.

I really cant deal with this anymore. All the blood tests I have had are all coming back normal and no one seems to know what is going on.

I have been feeling sick most days for the last year or so. I have bowel movements 4+ times a day usually a short while after eating. My iron levels are low, which Im on iron tablets for. Ive not had a period in the last 5 months even though all my hormone levels are normal and I cant seem to gain weight. At the start of the year I increased the amount of food I was eating and Ive not gained a single 1lb.

I keep getting told I have IBS, I don't agree with it and no one has given me any help to ease my symptoms. I was prescribed colofac for quite a few months, it made no difference and I very rarely get stomach pains.

No one seems to be taking it seriously. Ive got an appointment to see a specialist mid June, but the feeling sick is getting me down. It seems too far away to wait. Plus if my results are clear whats the chance they are going to give me any tests.

I just dont know what to do anymore. Im tempted to cut out all gluten (a lot of what I eat contains gluten and i feel worse the more I eat of it), but I know if I do get any tests from the specialist it could come up clear.

I just cant cope with it.

I have been having problems for over a year now. Feeling sick in the evenings, usually a few hours after eating. Sometimes I can have bowel movements upto 8 times a day etc.

I was diagnosed with IBS last year, but I don't agree with it. I have also had problems with my menstrual cycle. I don't have many during the space of a year. At the moment Im 5 months without. i have had all my hormones checked and they are all normal. I was found to have low iron levels and am now on tablets for it. I generally feel under the weather most days, feel tired and unwell. I just cant put my finger on it.

I was reluctantly refered to a GI and have my first appointment in a just over a month. I dont know what I should say to them or what to expect.

Any advice?

Hi,

My doctor didn't given me any information on what test is was apart from the IgA being raised. Another doctor said something about it not being a problem because my IgE level was normal and that the raised IgA was nothing to worry about.

Ive also read that some people can suffer with missed periods due to celiac/gluten intolerance. In the last say 26 months Ive only had 9 periods max. Ive had my hormone levels checked more than once and they have been normal. Ive also been told that this is nothing to worry about. Im sorry if I seem to be listing so many things. I guess I have a lot of things that I dont get sorted or know why its happening. For example on my chest, both sides near the arm pits I have a red/orange colour rash, sometimes its worse than others, it can get very dry/sore and start flaking. Its been there for almost a year. I was given some cream that made the skin smoother, but the rash soon reappeared and has stayed there ever since. Any ideas?

Thanks for the replies they have been helpful. There was something else I wanted to mention or ask about. Ive been experiencing pain in my knees when I crouch/bend down. The pain is in both knee caps and it is quite painful. Meaning I can't stay down for too long. I also experience of a regular basis a pain in the top of my shin on the bone. Sometimes it feels like it is bruised, when there is no bruise. It hurts to touch like a bruise and I haven't banged my shin. Just wondered if this could have anything to do with what Im eating. It does concern me because Im quite small(weight wise) for my height and I am worried I could have bone loss or something like that.

Hi there, I wonder if you can help me?

Ive had a problem for maybe the last 8/99 months.

I was feeling sick daily for almost 8/9 months. It usualy happened in the evenings, generally about 1hr 30 mins after eating. It would last for a few hours.

I went to my doctor many times who diagnosed IBS and gave me medication. I saw no improvement with it.I still felt sick. There were also times when I would have very loose motions with an urge to go very quickly.

My doctor did some blood tests and said I did not suffer with celiac disease, but my IgA levels were raised. I was then asked to wait a few months and have the test repeated. I did this and my levels were still raised (if I remember it was only slightly raised. My doctor said they didnt know what was making me sick and I should keep a food diary and see another doctor. In the last 3 weeks Ive been eating really healthy eg fruit/veg/nuts/seeds/meat/oily fish/rice/potatoes. The only food with gluten in that Ive eaten is bread. 2 slices in the morning.

Then last week on one day I had food with gluten in it, pasta bake, a muffin and a sandwich. That evening I felt sick again. I felt much better eating foods with no gluten, although I craved bread quite a lot.

Today I ate bread and some cake/biscuit and felt slightly sick afterwards. I also needed the toilet a few times. I also have suffered with bad wind after consuming such foods as I did today.

I dont know whats going on, but feel my feeling sick is something to do with what Im eating. I dont know whether to see another doctor or just cut out gluten from my diet.

Also what would be a reason for my raised IgA levels for the two times I had the blood test taken?

Many thanks