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Im New And Confused And Need Some Help And Advice.


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5 replies to this topic

#1 mum24boys

 
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Posted 10 December 2012 - 07:10 AM

Hi, I'm based in the UK and am new here. Iv been ill for 1 year now. It started last Nov with what I thought was a sickness and diarrhoea bug (vomiting with a very sulphur smelling vomit disgusting smell) but continued into stomach pain. It seemed to affect me when I ate fatty foods so my GP referred me to the surgeons to have my gall bladder checked and I stopped eating anything with fat in it. Although bread and pasta made me really ill, 1 piece of toast can have me doubled over within 10 mins of eating it. I kept a food diary but the Drs were not interested. After months of been messed around I had a HIDA scan which came back normal. This has led me to start looking into other reasons why im feeling so ill. My symptoms are. Severe stomach cramps/ache, bloating, constipation/diarrhoea alternating, vomiting, heartburn, wind, feeling sick, rumbling stomach. More recently these other symptoms have started from August this year, erratic periods that are all over the place and terrible pmt which iv not suffered from since I was a teen, hot flushes, raised temp not a fever but to 37.9, headaches, flu like symptoms, odd watery taste in my mouth, Cold sweats, tiredness, aching joints specifically my feet and knuckle joint on the left hand, total disinterest in sex and an odd stitch like pain in my right side and spots even though im 37 and a swollen feeling in my throat. Iv had a camera down and that showed mild irritation which I was put on a PPI for, a HIDA scan which was normal and blood tests which all come back normal. Iv been in hospital once about 4 weeks ago because of the pain and am on tramadol and oramorph. My GP has tested me for Coeliac last week and the result is normal. Less than 1.23 but I don't know what that means. Iv been on a gluten free diet from last Monday. My GP told me to continue to eat gluten until the test as I had stopped eating gluten a week before but as soon as I had the test I went back to gluten-free. Could this be the reason it came back normal? I'm slowly starting to feel better my spots are healing and my joints are not so achy but I'm still getting bad stomach pains and am really tired. Although after reading some of your advice its really not so surprising. Question is do I really need a diagnosis as there is no way im going to eat something which is obviously making me ill as I know I feel better not eating it. Iv got to go for an endoscopic ultrasound tomorrow and im going to ask them to do a biopsy for coeliac as im only doing this once. Do I forget all the Drs and go with what I think it is ie Coeliac disease? My youngest son has severe systemic onset juvenile arthritis and iv read about the connection. Would it make coeliac more likely in me? He keeps complaining about belly ache after eating bread so im going to get him tested at his next clinic app. Please Help.
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#2 frieze

 
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Posted 10 December 2012 - 10:24 AM

get your son tested NOW. do not wait. then you both go guten free. The advantage of dx for you in the UK is there is some recompense from you NHS for gluten free food. good luck
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#3 nvsmom

 
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Posted 10 December 2012 - 10:54 AM

With the swollen feeling in your throat, and all your symptoms, it could be a thyroid problem too. The symptoms largely fit. Try googling the symptoms and see what you think.

Can you get your celiac test results and the reference ranges? There are a few tests that many are knowledgeable about here and we might be able to advise you on what was done. If you were gluten-free, it could affect your results too. False negative can happen in testing too.

It's possible that you have non-celiac gluten intolerance which has all the horrible symptoms but does not have the intestinal damage.

I agree that you should test your son as soon as possible. There is a link between rhuematic diseases and gluten intolerance; I've heard it can cause flares and make them longer lasting so it's definitely something to check.

Best wishes.
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#4 mum24boys

 
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Posted 10 December 2012 - 11:52 AM

With the swollen feeling in your throat, and all your symptoms, it could be a thyroid problem too. The symptoms largely fit. Try googling the symptoms and see what you think.

Can you get your celiac test results and the reference ranges? There are a few tests that many are knowledgeable about here and we might be able to advise you on what was done. If you were gluten-free, it could affect your results too. False negative can happen in testing too.

It's possible that you have non-celiac gluten intolerance which has all the horrible symptoms but does not have the intestinal damage.

I agree that you should test your son as soon as possible. There is a link between rhuematic diseases and gluten intolerance; I've heard it can cause flares and make them longer lasting so it's definitely something to check.

Best wishes.

Thanks very much for both of your replies. Yes I will definitely get Dominic tested. He is only 4 and is the size of a 2 year old due to the prednisolone he was taking. He is currently stable on Tocalizamab infusions which he goes into hospital every 2 weeks to have. Most of the mainstream treatments did not work for him and he has really been through it as he was dx when he was 14mths and everything that could go wrong did. He is back next week and I will email his consultant and ask her. She is very good it should not be a problem. He is the most picky eater I know and lives on bread and pasta so getting him onto a gluten free diet will be a struggle but if he needs to then he will. I agree it could be my thyroid I had not realised that, although my husbands cousin had just been diagnosed with coeliac after having a thyroid problem herself. Iv got an appointment to see my GP next week. I really appreciate all the answers and suggestions as it gives me something to ask my Dr. With the swollen throat it only happened when I ate something with gluten in it. Im not that surprised the test came back negative as my diet has not been great for a couple of months because of the pain, so have been sticking to fruit and veg with lean meat. I have seen the non coeliac gluten intolerance and it could be that. That was why I asked if I really need a dx as the treatment is the same. Im not that desperate to be confirmed even though we do get some gluten-free food through the NHS but I have to pay for my prescriptions. Im not sure how they work over here it could end up costing me more. Good thought though. Again many thanks for your replies. I forgot to add in my initial post that im also dairy free as drinking cows milk in tea, cheese, butter and cream make me ill. Butter gives me terrible pain along with bread seemed to make my stomach ache although the range of replacements is surprisingly good and I really like soy milk and wont be going back to cows milk regardless of what happens or dx with.
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#5 GFinDC

 
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Posted 10 December 2012 - 04:10 PM

Hi Mum24boys,

Celiac can cause children to be short and not grow. So getting the kid tested is a good idea.

Thyroid problems are linked with celiac, especially Hashimoto's Thyroiditis. But I don't know of a reason thyroid would cause your stomach to be irritated. Low thyroid levels can cause slow digestion though.

Have you been tested for wheat allergy?
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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#6 mum24boys

 
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Posted 11 December 2012 - 12:52 PM

Hi Mum24boys,

Celiac can cause children to be short and not grow. So getting the kid tested is a good idea.

Thyroid problems are linked with celiac, especially Hashimoto's Thyroiditis. But I don't know of a reason thyroid would cause your stomach to be irritated. Low thyroid levels can cause slow digestion though.

Have you been tested for wheat allergy?

Iv never been tested for wheat allergy, I started the gluten free diet as soon as I had the results of my HIDA scan and they said my gall bladder was not the problem. Iv had an endoscopic ultrasound today and the result was nothing abnormal detected. The Dr asked me how strict I am with my diet and I'm very strict so he said nothing would show on a biopsy and I would have to eat 6 pieces of bread every day for the next 6 weeks to show up. There is no way I'm doing that it will make me extremely ill and as you know I have my young son to care for and his needs come before mine, especially if it can be avoided and when I'm starting to feel better. Iv emailed my sons consultant and he will have the test added to his regular bloods that he has taken every 2 weeks. I think I'm just going to carry on as I am. I'm not bothered about having a Dr sit down and tell me a definite dx. I think I either have coeliac or non coeliac gluten intolerance. As the treatment is the same for both iv nothing to lose, especially as I'm starting to feel better. My joints are no where near as achy as they were and my spots are clearing up already and my head feels so much clearer than it did. I still get stomach pain and feel a bit sick after my main meal in the evening but even then that's reduced from all day every day. As my mum pointed out to me its taken over a year to get to this point its not going to resolve overnight. Its odd that when you cut out these foods, symptoms that you never even realise you had get better. I would never have thought that a foggy brain really applied to me until now. Strange. I'm going to ask my GP to test my thyroid but after thinking about it some of the main symptoms don't really apply to me but no harm in asking anyway so thanks for the idea I would not have thought of it till I joined here. Thanks for reading and replying xx
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