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smile Apprentice
smile
Posted

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

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ravenwoodglass Mentor
ravenwoodglass
Posted

I think your in the right place. You saw symptoms resolve on the withdrawl of gluten and you are reacting to your gluten challenge. Do you have the actual results of your testing with the high IGA? If you do post them here as there are some folks who could help you interpret them.

Many times our bodies can give us answers that the doctor can't and it sounds like your body is happier without the gluten. I would go by what your body is telling you first and what the doctors are saying second. If you are going to pursue further celiac testing do be sure to stay on a full gluten diet until all your testing is done. If you have been gluten free or gluten light for a couple of months you need to make that challenge at least a couple of months to try and insure an accurate test result, even then false negatives are not uncommon.

smile Apprentice
smile
Posted
  • Author

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.

ravenwoodglass Mentor
ravenwoodglass
Posted

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.

I don't know alot about the capsule endo. I am pretty sure that biopsies can't be taken with one and sometimes biopsies are needed as the villi are very, very tiny. That is something to talk about with your doctor. I also was very fearful of the endo. I had a colonoscopy done and like you I was awake for it and it was not a pleasent experience as I have a very twisted colon. I did have the test redone with a different doctor and told him of the issue I had the first time. So that time they did both procedures with me totally out. There was an anesthisiologist there that time and all went very well.

Talk to your doctor about the different tests and your concerns and hopefully things will get figured out soon.

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