Am I a Celiac?

[HARRYE10]

I have been having a number of very strange symptoms for the past 7 weeks. It started with upper abdominal pains and discomfort that radiate to the back and sides. I then developed a light-headedness and frequent headaches. I have been having problems concentrating along with brain fog. However sometimes the head symptoms ease but then come back a few days later. My stools have not been right either. Some days they float and appear to have undigested food in them and are generally light in colour. I have also been very tired lately and my legs have been aching and have had some sharp pains in feet and hands. What is perhaps concerning me most is that I seem to be losing subcutaneous fat - my arms are very thin and bony and I am developing depressions on the sides of my thighs. I have had loads of blood tests; liver, kidney function and glucose were all normal. I have also had an MRI and my pancreatic functions and gall bladder were also normal. I have just had some more tests back for thyroid which once again was normal. I am getting increasingly concerned and am desperate for a diagnosis. I only thought of celiacs as my grandmother had it and when I looked up symptoms there were some matches. Does this sound like celiacs? This is literally the only thing that hasn't been ruled out. I am 18 years old and male. Thanks. 

[HARRYE10]

I forgot to add that I have also had an intermittent dry mouth and coated tongue.

[ironictruth]

  On 5/23/2017 at 6:26 PM, HARRYE10 said:

I have been having a number of very strange symptoms for the past 7 weeks. It started with upper abdominal pains and discomfort that radiate to the back and sides. I then developed a light-headedness and frequent headaches. I have been having problems concentrating along with brain fog. However sometimes the head symptoms ease but then come back a few days later. My stools have not been right either. Some days they float and appear to have undigested food in them and are generally light in colour. I have also been very tired lately and my legs have been aching and have had some sharp pains in feet and hands. What is perhaps concerning me most is that I seem to be losing subcutaneous fat - my arms are very thin and bony and I am developing depressions on the sides of my thighs. I have had loads of blood tests; liver, kidney function and glucose were all normal. I have also had an MRI and my pancreatic functions and gall bladder were also normal. I have just had some more tests back for thyroid which once again was normal. I am getting increasingly concerned and am desperate for a diagnosis. I only thought of celiacs as my grandmother had it and when I looked up symptoms there were some matches. Does this sound like celiacs? This is literally the only thing that hasn't been ruled out. I am 18 years old and male. Thanks. 

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You need to get a full celiac panel including ttg, dgp, ema and overall iga.  all of those should be ordered I would be suspicious of a doctor who did not order the entire panel.

 a lot of people on here including myself started off with a GI doctor who was not too Savvy with celiac disease and ended up having to get second opinions. 

 you may want to consider getting the genetic tests as well however know that 30 to 40% of the population carries the gene it does not mean it will be activated. If you do not carry the gene It practically rules out Celiac. If you do carry it you will need to undergo further testing.

 do not stop eating gluten until all the testing has been done. a lot of folks make that mistake as well.

Keep us posted. 

 you should probably get some vitamin levels done as well iron, vitamin D, B12 to start.

[HARRYE10]

Coeliac blood test came back negative so literally I don't know where to go from here

[tessa25]

  On 5/30/2017 at 4:29 PM, HARRYE10 said:

Coeliac blood test came back negative so literally I don't know where to go from here

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If you had the full celiac panel as ironictruth suggested, there is nothing preventing you from going 100%, no cheating, no eating out, gluten free for a couple of months to see if your problems start going away.

 

[Jmg]

  On 5/30/2017 at 4:29 PM, HARRYE10 said:

Coeliac blood test came back negative so literally I don't know where to go from here

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Harry if you've got a copy of your test results post them here so we can see which tests were ran.  Not every celiac shows on the common tests, but some do on some of the alternative ones. 

Even if you test negative, Gluten may still be the issue as Tessa says above. It was for me. 

Just don't start the gluten-free diet until your sure the testing process is over in your case. Discuss with your doctor first.  If you go gluten-free do it the right way. Keep a food diary, note your symptoms and read the advice in this post to ensure you're fully gluten-free.

There's some more info for you in the links below. They may give you a better understanding of what can be a confusing subject. 

Best of luck. Plenty of people here have been in your situation and come out the other side into good health. Don't think you won't have support here if you need it!

https://www.celiac.com/gluten-free/announcement/3-frequently-asked-questions-about-celiac-disease/

[HARRYE10]

Just got a copy of my results. I was just tested for TTG but the doctor said it would show positive if I was on a normal diet, which I was. I was also tested for vitamin B12, folate and iron. He did say that although I'm not anaemic my iron level was on the low side of normal. I am being referred to a gastroenterologist. He is thinking it may be IBS.

[ironictruth]

Try to make sure the GI doc runs the entire panel. Dgp and ema too. There are members here who only test positive to dgp and have positive biopsies on endoscopy. Dgp is a test which is roughly 10 years old. In many labs it will read either deamidated gliadin or gliadin lite II. The II indicates that it is the new version. The test is often confused with the old gliadin test which is not as accurate and has been abandoned by most labs other then research labs. However, the similar names between the old and new tests confuse docs and they often do not bother ordering it thinking they are the older tests. 

That being said, even the new DGP tests can give false positives as any test can. 

It is good you are going to a GI. 

Best of luck. Keep us posted! 

[Jmg]

  On 5/23/2017 at 6:26 PM, HARRYE10 said:

thought of celiacs as my grandmother had it

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Make sure you tell the GI this!

 

[HARRYE10]

Thanks for the advice. I was absolutely convinced that it was celiac and still am. I am still losing weight (it seems to be fat in arms and legs in particular) and so I am certain it is a digestive problem.

[Jmg]

  On 6/1/2017 at 10:03 AM, HARRYE10 said:

 

Thanks for the advice. I was absolutely convinced that it was celiac and still am. I am still losing weight (it seems to be fat in arms and legs in particular) and so I am certain it is a digestive problem.

 

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I'm guessing you're in the UK like me? I'll go back to our spelling!

So if I were you I'd prepare thoroughly for the meeting with the GE. Make some short notes of each and any symptom, any correlation you think you've noticed with diet etc. It's really easy to forget something you meant to mention during a consultation, so do make notes in advance. 

Ask for Coeliac to be thoroughly excluded before accepting an IBS diagnosis, some doctor's regard IBS as a 'dustbin diagnosis'. I don't think the NHS offers the full coelaic panel as standard that our US friends reference, at least I didn't get it, but explain to the GE that you'd like the broadest spectrum of tests available. On the basis of symptoms and familial history the GE may well order an endoscopy regardless of blood work, they did for me. That would be your best chance of getting a coeliac diagnosis. 

Try keeping a food diary in advance of your meeting, it's a good discipline to start. Just note what you eat, time and how you feel. 

Finally, as above, this is not easy to diagnose and I think some people slip through the net. If/When the GE says that he's excluded coeliac and testing is over (and only then), then go gluten free. You have nothing to lose and it's a fact that many people who test negative, find the gluten free diet relieves their symptoms. So if you do get the negative result, don't lose heart and don't assume gluten isn't the source of your problems, it was for me. 

Best of luck, stick around here there's lot's of good advice and good people here.

 

[HARRYE10]

Just a little update. I have seen one GI privately as I was desperate to see someone and he said it is most likely IBS as nothing has been flagged up in the blood test and insisted that the blood test is very accurate. Although the abdominal pains are not as bad at the moment, my stools are still loose and pale and I have continued to get headaches on and off but also a number of neurological symptoms and a lot of muscle twitching. Do you get these symptoms with IBS?  

[Jmg]

  On 7/15/2017 at 4:17 PM, HARRYE10 said:

insisted that the blood test is very accurate.

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The issue is not the accuracy of the test but that a percentage of coeliac positive patients test negative to this test. See IronicTruth's post further up this thread for the other tests you need to request.

My suggestion is to write down what you want to say before you next visit a doctor. Put some questions in there in bullet point form to make sure they don't fob you off. Don't assume they've read your notes either, sadly they often don't.

  On 7/15/2017 at 4:17 PM, HARRYE10 said:

my stools are still loose and pale and I have continued to get headaches on and off but also a number of neurological symptoms and a lot of muscle twitching. Do you get these symptoms with IBS? 

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I can't answer for IBS sufferers but these symptoms bar the headaches are consistent with my reactions to gluten.