New to this - can someone please help me?

[petacrane]

Hi, I have been reading through all the discussions over the last two days and just wondering if anyone can please give me some reassurance that I am on the right track. I am 25 years old and I have been sick for about two years - my main symptoms were nausea, vomiting, extreme fatigue, tingling sensations down myleft arm, mouth ulcers, headaches, stomach cramps, gas, constipation and unhealthy bowel movements. Quite recently I have also started experiencing dizzy spells. The symptoms last for roughly three weeks and then I can have up to 4 weeks of feeling like my old self again - lots of energy. About a year ago I finally found a doctor who took me seriously and didnt just tell me to take multi - vitamins. She did extensive blood tests and found that I have Percnicious Anemia and felt that was the cause of all my misery because I was dangerously low in B12. I have to get injenctions every three months. I was 100% sure and so was the doctor that my symptoms would disappear but it has been a year and the only thing that has stopped is the tingling and the vomiting, all the other symptoms still persist. I changed doctors a couple of months because the one that I had would not stop asking me if I had depression which I know I dont.... I will admit I do get depressed but only because I get so tired and nauseas I can barely get out of bed. Anyway my new doctor referred me to a specialist and he strongly believes I have Coeliacs and I had a blood test for it today. This would explain the anemia as I have found that coeliacs causes anemia. I have done a little research about it and believe I have a lot of the symptoms but I am yet to find information on whether anyone else gets the symptoms in the cyclic way that I do... some weeks I am really really healthy and I hope that I am not going to get sick again but then all the symptoms start all over again. Can someone please let me know what they think. Most of the stories I have read are more about stomach discomfort and I feel that I only have a mild case of that compared to my nausea and extrem fatigue - these really are the symptoms that give me the most grief. All my previous blood tests have always come back that I am healthy which I should be happy about but I also feel disappointed because I really want to know what is wrong with me so I can deal with it and get on with life. I dont know what I will do if the tests come back negative. Is there anyone who knows how I am feeling right now and anyone who gets these symptoms in three week blocks like i do.

[Eeyorific]

Do you know which tests they ran, Hopefully a full celiac panel (wish I had the link on hand)

Also, while my kids seem to have lots of symptoms but inconclusive tests, I have heard that some people with CD can have postive biopsies with little or no outward symptoms. This could be the case with you. It sounds very likely that may have CD. Either way, I am glad to hear that the new doc is testing you, I hope you find relief soon.

btw... welcome to the board!
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Kristie M.

"The truth of God's love is not that he allows bad things to happen....
it's his promise that he will be there with us when they do!"

[petacrane]

Well today it was just for two things, one just said coeliac and the other was a synthactic (not sure if that is the spelling) but it was a blood test then an injenction and then half an hour later another blood tests, from my understanding it tests my adrenal glands. My last tests before that were really extensive and there were lots of different things they were testing for but nothing I havnt been tested for before - glandular, ross river, low grade infections and all the other usual blood tests. I have also had scans on my head and neck to rule out the possibility of tumors and other really scary things. Thank you for your reply.

[aklap]

Hi Pet,

Your symptoms (sx's) can be part of CD, but the odd thing is there remission and return. Usually you don't see that. It could account for your anemia and your B12 deficiency. B12 def. is not something to mess around with. As you have seen, your neuropathy [burning, tingling] sx's have gone away with the B12 injections - that's a good thing!!

I am glad they are testing your for CD. It appears you are in the UK, so I don't know what they usually run for blood work.

Here's the complete Celiac Panel:

------------------------------------------
A complete Celiac Blood Panel:

antigliadin IgA and IgG (May indicate Non Celiac Gluten Sensitivity)
anti-tTG and/or anti-endomysial (Looks for villi damage)
total serum IgA (rules out IgA deficiency)
anti-reticulin IgA (Rarely used but, a very thorough doctor will include this)

More on Diagnostic Testing


If you want to see more sx's of CD:
Our Thread on CD Symptoms

If the docs can't figure anything out [and you've had CD testing done], you might consider doing a GF trial. You have nothing to lose and everything to gain. I was in that same boat. The docs could not find anything wrong. Luckily I had been researching and found others with the same problems as I had good results from removing this thing call gluten. Lo and behold - I removed it and I am here today!!

Good luck in your Knowledge Quest!! Keep looking for answers - keep learn as much as you can. You must be your own advocate when it comes to health care!!

Here's some more info for you:

Our Thread on Info aimed at Medical Professionals

Our Path's to Gluten Free-dom Thread
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

[petacrane]

I am in Australia - I dont think I set my profile up properly.Thank you so much for your information, I have learnt over the last few months that i really do have to find my own answers and do my own research rather then rely on solely on doctors - still cant wait to be rid of that uncertainty. I know that something is wrong with me and I am not just imagining it, two years ago I was a very very active, healthy and happy person and I cant wait to return to that person. As for the B12, she said that I was so low that she didnt know how I hadnt done permanent damage. Anyway, CD is the first disease that I have felt could really apply to me and could have caused my Anemia. Thanks again.

[mrsppmrxky]

Welcome to the board. I really can't add much to the advice that you have already been given.

Have you kept a food diary? I am just wondering if during the time of either the sickness you are eating more gluten or just before it returns you are eating more gluten and that could be the trigger to the cycle.

I hope that you soon get the answers to your health issues and that you are feeling better soon!
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[aklap]

Ahhh G'Day then!

Have you seen this? It might give you a bit more local information.

http://www.coeliac.org.au/state-locations.htm
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

[petacrane]

Hi, well I havnt done a food diary because yesterday was the first time any Doctor has even thought to mention this disease to me, I guess this is where I start to think I dont have CD because I eat pretty much the same each week, definately lots of pasta and bread. Anyway I have a lot of the symptoms of CD but like I said only get them for about 3 weeks and then have a period of being fairly healthy - its almost like I spend one month healthy and then one month really sick and this goes on and on. However, my bowel problems are on and off during periods of health (no nausea and fatigue is what i am happy to call healthy at this stage). I am going to start keeping a diary of when I am sick... what symptoms and what I eat. Thank you

[mrsppmrxky]

Okay, is the month that you feel 'human' again the month after your B12 shot? Could that be what is giving you the boost that you need? When I was so low on B12 this past winter, I got the B12 once a month and it really helped to get me going again.
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[petacrane]

I have thought about the whole B12 injection and really am undecided if it does help( I do know I will need for life but whether it is helping my overall health is another question). When I first started getting them I noticed dramatic improvements straight away... the doctor said i would notice it because I was that low in B12. However now when I have a needle, I dont feel better straight away, it still takes a couple of weeks to get over the symptoms which is what led me to feeling that there was something else seriously wrong.... The doctor has found my B12 levels are normal now and so that is why she thought it was something other then just anemia. Anyway, i dont know if that made sense.

[ostrich]

I agree with Al, the remission thing sounds odd.

Peta, have you tried keeping a journal of what you do/eat every day? Then you can look back on those bad days and try to find a pattern.
_________________
Ostrich :>--O==={

Did you think that your feet had been bound
By what gravity brings to the ground?

[aklap]

CD can go into remission during the teen years then re-emerge later on. Very interesting...

Please keep us updated!
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

[Noatak]

I'll agree with the remission thing....I had severe GI symptoms for awhile in my 20's and then these symptoms went away.....for awhile, until the big blow-out. I think that's why CD is so hard to diagnose and many mistakes are made. I have read that most people are diagnosed in their 40's and 50's,
after having had symptoms off and on for years. Makes sense because at that age, you no longer have youth on your side to compensate for the symptoms. You get sick and stay sick until diagnosis.