Diagnosed 4 Autoimmune Disease Together - Arthritis, Coeliac, Hypothyroidism..
May 20, 2015
I'm 25 and over the past 6 years I've been diagnosed with 4 pretty serious autoimmune conditions. When I was 19, I was diagnosed with Rheumatoid Arthritis which is often crippling, even now. I was told this was an autoimmune condition. Shortly after, I was diagnosed with Coeliac Disease, another autoimmune condition. The Arthritis and symptoms of the coeliac disease when I hadn't controlled it obviously made me feel unwell and I often felt lethargic and unhopeful due to a lot of pain and stuff going on in my body.
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I managed to go on a clinical trial which allowed me to have a new and powerful arthritis drug which dramatically improved the condition and I managed to cut gluten out of my diet. I also lost a bit of weight - this helped.
However, after the trial, my symptoms of arthritis gradually came back but was usually kept under control with the exception of a few flare ups.
When I was 23, I was diagnosed with Type 1 diabetes after getting a very quick onset flurry of symptoms (another autoimmune condition) - I find this very difficult to manage.
I've recently moved cities and transferring all of my specialists and treatments left me with no arthritis medication, and a long wait until I see a diabetes specialist to adjust insulin levels. As you can probably imagine, I've been in an awful lot of pain and been feeling very down, tired and lethargic. I'm very upbeat although having so many conditions and I don't let it bring me down, even though I work a full-time job 8 til 5 everyday. I've been having problems with blood tests, platelet counts, that kind of thing.
I was aware that I had the antibodies for Hypothyroidism as I had the test for that about a year ago and I knew it was just a matter of time before I developed it. Upon my most recent blood tests, my TSH level was 47.7 - ten times the top end of the normal limit. I've literally just started levothyroxine but, as you can imagine, I feel completely overloaded with health issues and like my head is going to explode and quite down about it all.
I'm sorry to give you my life story but I was just wondering if any one else has any of the other conditions I have and how they manage with all of them?
Also - how should I have been feeling with a TSH of 47.7? Should I have been feeling VERY different because, like I said, I always feel fairly tired and down due to the combination of illnesses. Any advice at all would be appreciated - I feel massively alone with this.
For the last 6 months illness has progressively become worse. Having been tooing and froing the doctors, yesterday i had the diagnosis of Autoimmune attacked thyroid. I know nothing much about the illness. I've been given 50ml dosage of Levothyroxine to take daily. The question i have is this. For the best part of the last 6 months i have been unable to walk properly or without pain 80% (thereabouts) of the time. I spend most of my time being asleep. Im in chronic pain with my joints (been tested for various arthritis, but nothing showing in tests) Is there any possibility the the pain and exhaustion are connected with the Thyroid issue? My doc said i should start to feel a little better soon, but seems perplexed by my exhaustion and chronic pain.
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I was diagnosed with MTCD 2 years ago. My case is lupus and they don't know what else. My case is mild. I really don't have much pain but I can feel something is there. Over this past year, 2013, I noticed my hairline is receding and now the whole top of my head is thinning. I always had a really beautiful thick head of hair and took great care of it. I keep it short but kind of spiky. Always looked good. But now as I stated my hair is thinning so much you can see my scalp. Just wanted to know if this is happening to anyone else. I am currently taking plaquenil, prednisone, cymbalta and imuran. Very low does. My doctor told me to cut down on the prednisone but after 4 days without it, I felt bad. I visited my dermatologist last year for a scalp biopsy but he said I didn't need it and I agreed. No thyroid problem yet but my numbers keep getting high. I'm thinking it's all of the above but don't know what to do about it. Any suggestions besides a wig?
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I have psoriatic arthritis and sjogrens. I take methotrexate injections weekly and remicade infusions monthly. I still am having pain and swelling in between all of this. Does anyone else experience a lot of pain?
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I had sinus allergies , brain fog, inability to gain weight and just general fatigue when i was diagnosed with celiac disease an year back through biopsy and blood tests. I have been gluten free since then.
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I weigh around 130 lbs. at 183 m.
My other test results are:
1.Severely deficient in vitamin D at 5.4 levels, for which i am taking supplements.
2. Normal T3 and T4 but T3 in the in the lower range at 112 (80-200 is normal).
3. High Anti peroxidase antibodies at 104
4. High TSH at 7.1
I don't know what to make of low Vitamin D and thyroid tests. Do i have a thyroid condition too or is it just due to my celiac disease? Despite being gluten free, i have not put on any weight until now. I feel just generally down, fatigued, anxious, and have difficulty keeping up with demands of day to day life. I was just wondering if i could do anything to rectify these symptoms.
How did you know you had issues with Gluten ? I have been suffering with an itch on my scrotum on and off for a couple of years now which was just getting more and more frequent to the point that I was scratching it every night in my sleep. I kept a food diary but could not work out from that until I eliminated wheat for three weeks and over that time I did not scratch until after three weeks when I mistakenly had some wheat I itched at night. Does that mean I should never eat gluten again or is this just a phase ? I don't get any other symptoms like diarrhea or flatulence, cramps, bloating.
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How many diagnosed celiacs have had their gallbladder removed because of low function? Did removal help make you feel better in spite of having celiac disease?
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My youngest son is 3 years and 3 months old. He is very tiny and under weight and is diagnosed as failure to thrive.
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For over 2 years he has been, very cranky all the time and emotional, poor appetite refusing to eat any thing apart from bread, cereal and pasta. He has low iron and is taking iron supplements and is tired a lot.
He us under the care of two paediatricians and a dietician who so far have not been able to find a cause for his problems and why he is so small.
One of the paediatricians came to our house to see my son. She examined him and felt his tummy etc. then asked is he had been tested for celiac disease or gluten intolerance. Which he hasn't.
The paediatricians said it would be a good idea to get him tested and she would refer him to other paediatrician to arrange for tests to be done.
She also said it might be a good idea to try removing wheat and gluten from his diet.
So we removed gluten and wheat from his diet straight away. He has had no wheat or gluten in his diet for 4 weeks now and we are seeing big improvements. He is like a different boy, he is a lot more happy, less tired, he is doing normal poos fro the first time in a very long time and he is getting his appetite back. He is finally for the first time in over 2 years not refusing food and is starting to eat proper meals.
Although we are seeing big improvement I am beginning to think that the paediatricians advice to remove wheat and gluten from his diet was perhaps bad advice as I realise now that you need to be eating gluten and wheat to be tested.
My son is due to see second paediatrician in 3 weeks time. I don't know if they will do tests then or if we will have to come back another time. Should I re add wheat to his diet now so he can be tested, will 3 weeks be long enough.
Was it a bad thing to remove gluten and wheat from his diet.
Does it sound like he might have celiac disease or a gluten intolerance
I have a 8 year old daughter who i have been worried has Coeliac disease for some time now, She was under a doctor in the first two years of her life as she was not growing at the expected rate, they done many tests at the time including a blood test for Celiac which came back negative. in the end it was decided she was just small. She Is still very small and at 8 years old wears age 6 clothing, she complains often of stomach pains after eating. I have also recently noticed that the enamel on her front teeth is not forming properly, is very pitted and looks very brittle. I requested another blood test last year which also came back negative but i'm still not convinced. We do have Celiac in our family, not her immediate family but grandparents. I don't know if i'm worrying for no reason or if I'm going to cause long term problems for her by not pushing this further.
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I recently went on the Juice Plus diet and was told it didn't contain gluten even though it does contain Oats. Since starting the diet all my celiac symptoms have come back. Aching joints, swollen face and wrists and extreme tiredness. Has anyone else found this?
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Can I ask what symptoms other people have experienced before being diagnosed with Celiacs?? I am concerned I may have celiacs, I am due to see a doctor next week to discuss. I don't have all the symptoms but have had bloating, chronic constipation, (had issues with both for years) flaky scalp (not severe) and a skin condition on my feet. My doctor told me this was eczema two years ago but it can flare up quite extreme, soare, itchy, fluid filled blisters, flaky skin, red, rashy when at its worst. But it tends to come and go? Does anyone else suffer from the same?
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my leg is five and half years old and for as long as I can remember she has had bowel trouble. It started off as constipation which the GP prescribed movicol for. She was weaned off if this and over time her symptoms have worsened. She suffers from terrible bloating, wind and constipation. She complains of "tummy bubbles" I have asked what she means by this and says either her tummy hurts or she thinks she needs to go to the toilet. We are at a loss as to what could be causing this?
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since my son was born a couple of years ago, I have been to several doctors appointments with depression, lethargy and several other symptoms, that had gotten to a point that I felt I couldn't cope anymore. At first the doctor thought it was postnatal depression and then thyroid, but on my second blood test, when she tested for almost everything she could, my blood test came back strongly for coeliac, and as always very low iron levels. That was back in February, four weeks ago at my endoscopy, on leaving, the nurse said the procedure had shown suggestions of coeliac and disease, they had taken biopsies, and not to start on a gluten free diet as other tests would need to be taken. As I was a bit out of it at the time due to the sedation, I forgot to ask what other tests they would be doing? could anyone let me know what they went through after the biopsy in regards to further tests. I am feeling so low and desperate to start the diet, and wait eagerly for the post everyday. I have to go in for surgery for another problem possibly at the end of June, and I am wondering if just to start now, as I really want to feel stronger for that. Thank you for listening in advance.
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My daughter was diagnosed with coeliac disease end April 2014 and since then we have taken her completely off gluten. She is now hyper-sensitive to even trace amounts of gluten and can be sick for days if she eats the tiniest of crumbs. Her tests for gut damage were 300+ and she is down to around 18, but doctors would like her levels to be 7 or below. We have been seeing a chiropractor and physiotherapist to help with her muscle spasms and aching over the last few years (back and legs). She has been tested for lupus, rheumatoid arthritis, anaemia, vitamin D deficiency, thyroid problems, calcium deficiency and she came off lactose for a month. Everything has come back negative - although in January this year the consultant put her on calcium supplements to be on the safe side.
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However, she is in constant pain which gets worse by the evening (she rates most evenings as 7/10, 8/10 if she has a headache and saves 10/10 for how she remembers it feels when glutened) - her joints and muscles ache (no swelling). She has to have her legs and back which are the worst affected parts, rubbed at bedtime and she goes to sleep with heat packs to ease the pain. She gets a headache as a result of the neck pain about 1 a fortnight. She can get very tired and last Friday she was sent home from school as she was tired, headachy and achy. She came home and spent the day in bed. She used to be so active and was able to swim 4 x a week in a squad - if anything she seems to be getting worse not better and cannot attend as much training. It's horrible to watch her walking around like a little old lady at age 9. In the last three months even during the day - her best day was 3/10 pain. Naturally it really gets her down.
I have been told that the gut in some people can take 2 and half to 3 years to recover - but surely malabsorption wouldn't make her feel worse?
Can anyone list me some makes of sweets and crisps that are gluten and dairy free?
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I've just been diagnosed with Coeliacs disease and am finding it very stressful shopping so far. I am following the weight watchers diet as well but all the GF breads seem high in calories. Also I've had headaches for the last couple of days and feel like I'm in a world of my own. Could these be coz I've stopped all wheat or just coz I'm stressed. I've joined loads of groups online and have all the info but it seems like information overload.
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I'm 40 years old, mum to 2 girls 16 & 11. I just been diagnosed with psoriatic arthritis and I'm so scared and confused, I'm looking for people in the same boat to help me understand what I'm going through. I have suffered with scalp psoriasis for about 10 years. For about a year I had the odd pain here and there, but nothing I thought was worth going to the doctors about, but 6 months ago my knee started to hurt more regularly but I still put it down to getting old. One night I woke up in excruciating pain on my knee, could not move it at all, took a couple of hours with a bag of frozen peas to ease the pain and after taking painkillers the pain went and I carried on with my life. Just under 2 months ago that same pain came back but not just my knee, my shoulder, my elbow and my neck were affected too. I felt like I was paralysed by pain and had to be practically carried to the GP. That was the first time I ever heard of PA...I didn't even know it existed. My GP suspected it and sent me to loads of blood tests, and prescribed a load of tablets. A week later the pain was not easing so back to the GP and this time he gave me stronger co codamol and the pain started to get better. Another week and the blood tests results came back and showed inflammation, very low vit D and folic acid, so GP gave me supplements and decided to give me a 3 vial steroid injection, which he was hopeful could relieve me of pain for a month, while I was being referred to the rheumatologist. I was pain free for 3 days and then it came back with a vengeance. Back on the co codamol and naproxen but the pain was easing just a bit, I couldn't sleep as I any position made something hurt. GP asked for an urgent referral, but that got lost and despite me trying to get things moving, nothing was happening fast enough so I went private, got an appointment within 2 days and a diagnosis. I started methotrexate 2 weeks ago, which makes me very sick and diarrhoea for 3 days, then it settles. Still on co codamol for pain as I refused the steroids the rheumy wanted to prescribe. My life has been turned upside down, almost every day I wake up with different joints hurting. I feel like the pain is eating me away, it's so disheartening when I can't even prepare my child's lunch box because my hands won't allow it. I work through an agency and they are on the verge of getting rid of me because I have taken the odd day off when the pain is just too much. I have been on anti depressants for years and I feel my depression getting worse, I don't want to leave the house or see anyone because I feel so so low. Will it ever get better?
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I have an 8 year old who was diagnosed with Coeliac disease last May and has been following a gluten-free diet ever since. Her symptoms previously were pins and needles in hands and feet, mouth ulcers, calcium marks on teeth, bloating, aching joints and bones, and small pink spots on the face. She is also quite small for her age. Her symptoms have cleared up, However now and then she gets sick if we have problems with cross-contamination.
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My problem is that she is still experiencing a degree of joint and bone pain. About 2 weeks ago was the last time she got sick because of cross contamination, but last night she couldn't sleep because of the pain. Is this normal - does anyone else experience this?
I've been having problems after having my gallbladder removed and was sent for an mri and coeliac screening by the consultant (general surgeon). Mri was clear but blood screening indicated one of the antibodies was high which 'may' indicate coeliac's. The consultant feels this may explain why I'm having these ongoing issues but I'm not convinced. With coeliac would there be pain in the right upper quad, including night time attacks? Any help would be really appreciated.
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Basically I am 25 years old and as i've grown up I've noticed more and more that I was getting stomach cramps and bloating more and more often. It is very sporadic and I couldn't really say exactly what was causing it but I just thought it was normal. This was until the last 12 months when I started to think a bit more about it. I do a lot of exercise and play a lot of football. I was finding that I would get some form of cramp during a football game. Usually quite mild but sometimes worse. I also like to run and when training for a half marathon found that after a certain distance I would get pains. Almost every time after about 30-40 minutes running. It would normally be worse when running in the evenings. I started thinking about it and tried taking several things out of my diet. I am 95% certain I have a lactose intolerance as since cutting that out around 6 months ago I have seen an improvement. But I would still get pains.
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This all resulted in me going Gluten Free and I finally experienced what it feels like to have a normal stomach. I was relaxed and could do whatever I wanted without any fear. So I decided for my own health I should get tested for celiacs disease and after 7 weeks of eating gluten again had the blood tests. Today I had the results and they have come back negative. I feel so deflated and just angry. What do I do now? I just feel like going back to Gluten Free and living like that self diagnosed. The weird thing I find with my disorder is it seems to be worse when i'm up and about. If me and my fiancee have gone out around town and have lunch it is often worse when walking around afterwards. I don't always get blinding pains either. It is often just severe constipation or stomach cramps just making me feel uncomfortable.
Really disheartening now and just want to know but can't carry on for much longer and really don't want to keep eating Gluten when I know I feel good when I don't. Any advise?
Does that mean that we women are more susceptible to viruses, respiratory infections, etc.? Do most follow a certain diet ?
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