Celiac And Other Health Problems ?

[tennisman]

I was diagnosed with celiac disease in 2003 and have stuck to the gluten free diet 110 % since day 1 . I remember my stomach problems improved a lot , I just had the odd stomach pain every now and again. Than in 2005 I got back problems which I still have now and I started getting new stomach pains in 2008 and they still haven't got better. I have also had some other problems with my ankle and wrists etc.

I feel like my health became a lot worse after a few years of becoming a Celiac and one of my doctor's said i'm likely to always have some health problems because i'm Celiac , But other doctors tell me my other health problems are nothing to do with being Celiac I don't know who is right :S

I'm also wondering if my villi has healed properly as I had an endoscopy last year and the doctor said my stomach had shown signs of regeneration , does that mean the villi has healed or is starting to heal I don't really understand

In 2009 1 doctor said I had a vitamin D deficiency which could be part of the reason I have back problems yet other doctors have basically told me i'm stupid for believing a vitamin deficiency can cause health problems.

So now I can't tell if my problems are connected with being a Celiac , or maybe i'm lacking in some vitamins or if my health problems are nothing to do with being a Celiac. I'm also getting frustrated with being Celiac for 7 years I didn't mind at all and now suddenly it's become difficult and I don't really understand what's going on

Has anyone else had more health problems after being a Celiac for a few years ?

[mushroom]

Well, we know that celiac causes many nutrient deficiencies that we need to correct for optimum health. Did you have your levels checked at diagnosis or is it possible that you were deficient in vitamin D all those years? If so that could put you at great risk for osteoporosis. Do not listen to any doctor that tells you nutrition has nothing to do with health problems. It has everything to do with so many of them, including celiac. If you have not had a full nutrient assessment it is something you need to do right away. The basics are vitamins A, B6 (folate) B12. D (already done although you should get it rechecked to see if it is still up to snuff),E and K; also ferritin/iron, magnesium, calcium and zinc. These are typical deficiencies in celiacs. And while you have been gluten free all these years you still may not have been able to get enough nutrients from your foods to bring them back up to average levels, especially if your gut is not totally healed.. I have been gluten free for 3-1/3 years and if I don't take magnesium every day I get cramps in my calves at night. Seems like I can't get enough.

As far as your villi, if your doctor said they are regenerating, they are growing back (the opposite of degenerating ) Since they are not totally healed I would go back and recheck my diet for signs of any gluten having crept in somewhere, because they really should be healed by now. Did he do a celiac blood test to see if you were still overproducing antibodies? That would be another good countercheck for stray gluten.

[tennisman]

Well, we know that celiac causes many nutrient deficiencies that we need to correct for optimum health. Did you have your levels checked at diagnosis or is it possible that you were deficient in vitamin D all those years? If so that could put you at great risk for osteoporosis. Do not listen to any doctor that tells you nutrition has nothing to do with health problems. It has everything to do with so many of them, including celiac. If you have not had a full nutrient assessment it is something you need to do right away. The basics are vitamins A, B6 (folate) B12. D (already done although you should get it rechecked to see if it is still up to snuff),E and K; also ferritin/iron, magnesium, calcium and zinc. These are typical deficiencies in celiacs. And while you have been gluten free all these years you still may not have been able to get enough nutrients from your foods to bring them back up to average levels, especially if your gut is not totally healed.. I have been gluten free for 3-1/3 years and if I don't take magnesium every day I get cramps in my calves at night. Seems like I can't get enough.

As far as your villi, if your doctor said they are regenerating, they are growing back (the opposite of degenerating ) Since they are not totally healed I would go back and recheck my diet for signs of any gluten having crept in somewhere, because they really should be healed by now. Did he do a celiac blood test to see if you were still overproducing antibodies? That would be another good countercheck for stray gluten.

Thanks for the reply I have no idea if my Vitamin D was tested but most probably it wasn't. I was only 14 or maybe 15 when diagnosed and can't really remember lol all I remember was the doctor telling me I was celiac and I straight away chucked the sweets I had been eating in the waiting room in the bin because they weren't gluten-free lol. I want to ask my doctor when exactly I was diagnosed and maybe they might have checked Vitamin's than but I only remember having a blood test and an endoscopy. It's really frustrating about the Vitamin D because I had my Vitamins tested in April 09 and they were apparently all alright but in May 09 my gp doctor tested my Vitamin D and it was very low surely it can't drop from good to very low in 1 month. Also in 2006 while going to an osteopath my back wasn't responding to treatment and the osteopath thought I may have been lacking in something , so most probably the Vitamin D deficiency has been going on for a long time.

Thanks for the list of Vitamin's and nutrient's I will go to my gp and get them tested properly , as my stomach doctor will just say there fine without even looking at the results properly. My Vitamin D was 31 and after 3 months on Vitamin D tablets my level went up to 66 and than 12 months later it was 69 haven't had it checked since . I think it's strange it went up a lot in 3 months and than almost stopped improving I took Vitamin D tablets the whole time too. I have been to see my dietian today he advised I eat a more varied diet so most probably I could be lacking in a few nutrient's. Sorry to hear about the cramps if you don't get enough magnesium.

I find it ridiculous the doctor said there was signs of regeneration , as I too expected it to be fully healed. My old stomach doctor wanted to do another endoscopy a year or so after being diagnosed with celiac disease to check the villi had healed , I wish I had , had the 2nd endoscopy now lol . But as my stomach seemed better after a year I didn't want another endoscopy lol. I don't think I am eating gluten by accident anywhere, and my mum is also celiac so all meals are definitely 100 % gluten-free I have had the celiac blood test to check for gluten many times and my results have been fine every time. My doctor said he puts that test on most celiac patients blood test form secretly just to make sure no one is cheating 1 doctor actually told me I had stomach pain because I didn't stick to my diet fully I told him to look at the blood test results and he ended up looking stupid

[frieze]

Vitamins are called that because they ae VITAL....run from any doc that tries to tell you otherwise!

[ravenwoodglass]

Sometimes it can be another intolerance that causes continued problems. Have you tried eliminating soy and dairy to see if they might be an issue? If not that might be a good place to start. It took me years to figure out that soy was an issue for me and that was what was causing me to have continued stomach and joint pain. May not be the case for you but thought it worth mentioning. Do you keep a food and symptom log? That can sometimes be helpful in figuring out if another intolerance is an issue. Since intolerances can be delayed reactions the diary can help with establishing a pattern.

[Chopper]

Hello,

I was diagnosed celiac in August, as well as gastroparesis. I have eliminated all gluten, or I thought so. On occasion when eating out I would accidentally get glutened. I had another endoscopy and biopsy in January and he said I had great improvement, but there was still inflammation. Just last week after reading in this forum, I discovered my under eye concealer has gluten in it. Of course I'll never know how much that affected me. But also keep in mind that an autoimmune disease can trigger another one. Put some thought into any oddities you may have going on with your health and see if you can connect them to another autoimmunity, such as autoimmune thyroidism, connective tissue disease, etc. For me, I have recently been diagnosed with both of those in addition to the celiac. And some people never develop another one, but at least you'll know to look for symptoms.

Wish you the best!

[tennisman]

Vitamins are called that because they ae VITAL....run from any doc that tries to tell you otherwise!

Thanks for the advice

[tennisman]

Sometimes it can be another intolerance that causes continued problems. Have you tried eliminating soy and dairy to see if they might be an issue? If not that might be a good place to start. It took me years to figure out that soy was an issue for me and that was what was causing me to have continued stomach and joint pain. May not be the case for you but thought it worth mentioning. Do you keep a food and symptom log? That can sometimes be helpful in figuring out if another intolerance is an issue. Since intolerances can be delayed reactions the diary can help with establishing a pattern.

Thanks for the reply I did think I had another intolerance , I have seen a dietian a few times since last september and have done 2 or 3 food and symptom diary . He can't find anything that could be causing me problems and doesn't think I have an intolerance. We did discuss diary and I have to cut diary out for a week. I had tonsiltis a few weeks ago and didn't really eat my regular diet I had no milk or yoghurt and my stomach did improve a little so diary could be the problem. I hadn't thought of soy I will have to check which foods I eat that have soy in. That's great that removing soy helped your stomach and joint pain.

[tennisman]

Hello,

I was diagnosed celiac in August, as well as gastroparesis. I have eliminated all gluten, or I thought so. On occasion when eating out I would accidentally get glutened. I had another endoscopy and biopsy in January and he said I had great improvement, but there was still inflammation. Just last week after reading in this forum, I discovered my under eye concealer has gluten in it. Of course I'll never know how much that affected me. But also keep in mind that an autoimmune disease can trigger another one. Put some thought into any oddities you may have going on with your health and see if you can connect them to another autoimmunity, such as autoimmune thyroidism, connective tissue disease, etc. For me, I have recently been diagnosed with both of those in addition to the celiac. And some people never develop another one, but at least you'll know to look for symptoms.

Wish you the best!

Hi Thanks for the reply.

Thanks for the advice , i'm 99.9 % I don't eat any gluten but I will have to triple check everything and see if i'm missing something. Sorry to hear you were diagnosed with autoimmune thyroidism and connective tissue disease. When I was 1st getting tests for my back problems Ankylosing spondylitis Autoimmune disease was mentioned , it was all very strange what happened. I had the blood test and tested positive for Ankylosing spondylitis , I than had to have an x-ray to confirm , they found something on the x-ray to suggest I had Ankylosing spondylitis and than the next week the doctor said the x-ray results were read by someone inexperienced and they had got it wrong. My osteopath wanted to see the x-ray results but my doctor made some strange excuses and wouldn't let me have a copy of the x-ray. Than my doctor said it's possible to test positive for Ankylosing spondylitis in the blood test and not actually have it. Than my doctor kept on about how I didn't have Ankylosing spondylitis YET ! It was all very strange , I think I may get a doctor I trust to do the blood test and x-ray again , I have also seen Ankylosing spondylitis can cause stomach pain and a few other symptoms I get. I was also tested for Lupus again I tested positive in the blood test but didn't have many of the other symptoms that go with Lupus.

[mushroom]

Have you ever seen a rheumatologist? Had him look at the ankylosing spondylitis issue? He could request the copies from the other doc and run more tests, although you are entitled to a copy of your records You just fill out a form requesting copies and they are required to give them to you - I believe in all states, certainly those I have lived in.. This is an arthritic condition as I am sure you know and a rheumatology consult would be appropriate.

[tennisman]

Have you ever seen a rheumatologist? Had him look at the ankylosing spondylitis issue? He could request the copies from the other doc and run more tests, although you are entitled to a copy of your records You just fill out a form requesting copies and they are required to give them to you - I believe in all states, certainly those I have lived in.. This is an arthritic condition as I am sure you know and a rheumatology consult would be appropriate.

I think it was actually a rheumatologist who did most of the AS testing , I was seeing the back specialst and rheumatologist at the same time. I than saw the same rheumatologist in 2008 who did the Lupus tests. I just found it strange I tested positive for AS but the doctor/rheumatologist didn't think I had it , I didn't know that was possible. Maybe because it's an autoimmune disease it's a similar blood test to the celiac blood test and celiac was showing up or something lol. I was always suspicious on my doctor not wanting to give me copies of results etc . I once saw an osteopath who knew my doctor very well and he was shocked at how my doctor would not give me my results and kept changing his mind about what I had. The osteopath I saw thought I had AS and he treated me the same as he would for someone with AS and it helped quite a bit after a while.

[mushroom]

I would definitely get copies of my records and see for myself. Go to the office and fill out a Request for Release of Medical Records. You can say you need them for another doctor's appointment, but make sure they are released to you.