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Post by kb on Mar 14, 2007 0:02:22 GMT -5
Well, have found out today there is a very good chance i have celiac disease. I had a blood test for it recently, and when i rang up the receptionist told me it was normal.
Turns out was told the wrong thing, i have antibodies, was meant to have talked to my GP, but was just told it was fine.
Went back to the GPs today for other things, and he found that, so now have to see a GI specialist in a month. Kinda happy about the finding, coz it at least explains my fatigue if not my other symptoms. So maybe hope to at least get back to functioning, even if my endo problems persist. Its a start.
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Post by ouchy on Mar 14, 2007 9:19:03 GMT -5
Oh wow! Sorry that you got jacked around on being told the correct information! I hope the person who told you the wrong info gets in trouble!!! What if it were something life threatening!!!?! UGh!
My tests for celiac came back normal. But I remember that being part of my GI work-up as far as bloodwork. Keep us posted!
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Post by kb on Mar 19, 2007 1:06:13 GMT -5
Ive had further blood tests on a whole range of things that can be affected with celiacs. Turns out im mildly anaemic, which is a surprise with all the supplements im on, so i have now increased the amount of iron i am taking with supplements.
Also have subclinical hypothyroidism and require follow up blood tests on that in 3-6months.
Both of these are common with celiacs, so its looking more and more likely to be that. So now its the waiting game, cant go off gluten until the biopsy so ive been told to indulge in all the foods i love while i can. Kinda annoying coz now i cant continue with the diet changes i made as it could affect the results, fortunately all the supplements im taking can only be a good thing and could be whats stopping me getting worse, and possibly the difference between mild and severe anaemia.
Being me im reading like mad all about celiacs, and it seems it could cause alot of the health probs ive always had, it could even be mimicking endo as a side effect of long term malabsorption. So now i dont know if celiacs is my entire prob (if i have it, very small chance i dont), or if its just part of the picture and possibly making endo symptoms worse.
The positive thought in all this is if it is celiacs all my other probs might resolve on the diet. So heres hoping, im now wishing for a disease for the sake of getting better.
Definitely will keep you all posted on the progress here.
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Post by kb on Apr 12, 2007 1:04:09 GMT -5
Saw the gastroenterologist today, he doesnt think my probs are bowel related at all. Doesnt seem to think it likely i have celiacs but has to do the biopsy coz of the raised antibodies, so im scheduled for that next friday.
Ive been told to go back to the gyno's, seems to think that even if i have celiacs its not whats causing my probs.
He thinks the anaemia is whats causing my fatigue and has told me to take much stronger supplements which i purchased today. He's unsure if the anaemia is caused by diet, heavy periods or celiacs.
Guess will wait and see the results, regardless am going to go on the diet to see if it helps after the biopsy.
Going to see a new gyno on tues, so ill see how that goes, feel like im being passed around at the moment, a real medical mystery.
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Post by kb on Apr 26, 2007 2:06:21 GMT -5
Well good news people, i dont have celiacs I have to have my antibody levels checked annually in case i have latent celiacs (meaning will develop later), but currently dont have celiacs. The doc doesnt think a gluten free diet will be of any benefit to me, but can understand if i want to try it. Have found out have an oesophageul ulcer, from reflux, leaky valve, doc not sure if its a temporary or long term prob, but on meds for it and it seems it has been causing alot of my nausea coz barely have any now, so will need to monitor if it comes back when i go off meds, if it does, will need to take them for life.
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Post by ouchy on Apr 26, 2007 9:08:43 GMT -5
Oh wow, kb! Good that you dont' have celiacs as of yet! Sorry about the ulcer, but I'm glad it was found now rather than later. Sorry about the other conditions. Hope they get sorted out.
*hugs*
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Post by kb on Apr 27, 2007 1:31:18 GMT -5
Thanks Ouchy,
am happy they found the ulcer too, coz that wasnt expected, i didnt have those type of symptoms and have always put the nausea down to the pain, never considered it could be something completely unrelated.
Is nice to have the nausea under control, hated that symptom.
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Post by Tiff on Apr 27, 2007 11:05:24 GMT -5
I am so glad you were not diagnosed with Celiac! I have a few friends with celiacs and have found a few websites very helpful when I have them over for dinner. I thought I would post them because I am sure there are other people on here who can not eat gluten. www.celiac.com/st_main.html?p_catid=20And here is another good site. www.csaceliacs.org/recipes.php
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Post by akcheryl on Apr 27, 2007 15:55:27 GMT -5
kb - I'm glad you don't have celiac disease, but make sure you do something about the ulcer! My dad suffered from a badly ulcerated esophagus due to gastric reflux for YEARS (he had to sleep sitting up from about age 15 to 55 because he'd choke in his sleep from the acid, and he started choking on food whenever he ate and had to have the Heimlich several times), and the doctor who looked at his esophagus said if he had waited any longer the ulcers would have turned cancerous and it would be incurable. My dad had a Nissen Fundoplication a couple weeks later, and has felt better ever since.
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Post by kb on Apr 28, 2007 1:36:25 GMT -5
The doc said the ulcer is only minor at this stage, so was gotten reasonably early, it was luck really it was found.
Have felt alot better with the meds, so id say its healing ok, strangely since ive had the op i do get pain there occasionally now, whereas i never used to, maybe i just notice more now i dunno, but it doesnt last long, maybe half hour after dinner. So yeah i think it will be ok within the 2months.
I dont mind if i have to be on meds for life, if it means no nausea.
Whats interesting is ive actually had probs with nausea since i was 14. I use to throw up after i brushed my teeth, so i just stopped eating brekky and was ok, the docs told my mother i was bulemic, idiots, really investigated didnt they. So i suspect ive had this prob since then, but ive just learnt in my own way to control it, meds are easier lol. Havent felt like i might throw up in the morning since ive been on the meds, its wonderful after all these years.
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Post by puddleduck on May 7, 2007 9:36:03 GMT -5
Hi there,
Sorry to hear about the ulcer. Here's a story for you: I know a couple who both had ulcers diagnosed at roughly the same time. The woman still has trouble with hers years later, but her husband, who eats liquorice, has healed completely. What an excuse to eat Liquorice Allsorts!!!
I had a biopsy done for coeliac disease a few years ago. I don't have antibodies but the villi in my small intestine were small, apparently.
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Post by kb on May 7, 2007 23:56:49 GMT -5
Wow!!! Licorice, thats interesting, wonder why?
Yeah have heard can still have celiacs without the antibodies, bizarre really, seems alot still not understood about the area hey.
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mel26
Full Member
Posts: 106
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Post by mel26 on Sept 13, 2007 1:29:05 GMT -5
Hey, I know this thread is old, but I've been researching celiac disease as my gp thinks I may have it. Problem is, here it costs $125 for the blood work, and my doc thinks I should wait till all other tests have been done before testing for celiacs. As I wrote in another thread, I'm losing quite a bit of weight and I feel like I can't afford to keep waiting. My mom offered to help pay for the test, but I'm not sure what to do... Can anyone give me some input? Also, I couldn't quite tell from this thread, has anyone been diagnosed with celiac disease? If so, did u perhaps have digestive 'issues' (ie: constipation) Thnx
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Post by puddleduck on Sept 13, 2007 2:21:48 GMT -5
Hi Mel, If you are aiming to be tested for coeliac disease, then make sure you don't go on a gluten free diet in the six months prior to testing. Otherwise, the tests may be negative if being gluten-free allows things to heal. I know this is a tricky situation to be in... There are a few blood tests which may be positive in the general blood work which can give a more likely indication of coeliac disease (this may be why the doctors want to wait until all these have been done prior to testing). For example, the damage done to the small intestine can affect absorption of iron, folate and calcium, so quite often these levels are lower. Your calcium levels can drop because vitamin D is lower due to fat malabsorption. The specific blood tests for coeliac disease are TTG (tissue transglutaminase) (the gold standard) anti-endomyseal antibodies, anti-reticulin and alpha-gliadin antibodies. However, they may only need to do TTG and a biopsy of the small intestine (by upper GI endoscopy). The main symptoms of coeliac disease are diarrhoea and weight loss, but some also suffer from constipation and nausea. I can see your doctors' logic in trying to look at the initial tests first, as they may well give clues. In the meanwhile, don't change your diet!
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Post by alex*xoxo on Sept 13, 2007 4:42:30 GMT -5
Hey!
Wow that's so weird that you were being tested for celiacs. I am currently being tested for that right now. They just did all my blood work on tuesday and I am going for a Barium swallow (sp?) which I am totally not excited for, and an ultra sound to check for ulcers. My doctor said that you can get ulcers pretty easy from "over-use" of ibeprofen. Which I'm pretty sure we all take TONS of. I know I usually take like 6 or so of the 400 mg motrin a day. I try not to take meds as much as possible, but most days it really is impossible not to take anything.
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