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I Got My Results Don't Know What To Do Next, Please Advise I'm Lost
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3 posts in this topic

Hello again

 

If anyone could offer any advice I would really appreciate it, I’m exhausted both physically and mentally at this point.

 

I have been suffering with digestive issues for around 6-7 years (I'm 24), however over the last 3 years my health has deteriorated, I am frequently fatigued and my entire body aches, as well as nausea, heartburn, stomach pain. My doctor has found that I have vitamin D and  Iron deficiencies despite having a good diet. I was tested for celiac disease, I asked for the full screen but was only offered the tests below (my results are below)- 

 

Anti-tissue transglutnase- 0.1U/ml  0.00-7.00/ml

 

IgA- 1.52g/L  0.87-4.12g/L

 

Serum Ferritin- 10ug/L  

 

Vitamin D- 17.9 ug/L 

 

Neutrophil count- 2.01 ( just outside normal levels) 

 

 

Anything strike anyone from my results?

 

I have experimented with a gluten light diet, only for 1 week after the tests came back negative and I seemed to have a positive response, my energy was much higher and I felt much better, this could be a coincidence though. I would like a full coeliac screen, and if possible the genetic test for coeliac disease. Do you think this would be a good next move?

 

 My doctors have been I'm afraid to say a little unhelpful, I really do suspect celiac disease but because the test was negative I'm struggling to get them to investigate further, I have been referred to a gastroenterologist but this won’t go through for a while yet and the tests aren’t available on the NHS anyway so I’m going private (for the tests). I'm back eating gluten now and feel awful, but I need a definite diagnosis otherwise I could risk masking the real problem and there defiantly is one.    

 

Do you think I should let it go as the result was negative?

I’m more than a little lost right now

Thanks

Tally

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Did they test your B12 levels? it can mess you up just as much as low Vit D levels. Although low Vit D puts you at risk for a lot of serious disease so you best fix that asap. Check that B12... It can make you so tired that you can't sleep. Also you might have helicobacter or in the end it could be gluten. The tests are pretty random anyway. If you feel better without it then you are better without it. 

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The tTG IgA catches 75-95% of all celiacs, so it could be possible that you are one of the minority. Could you have the tTG IgG run? Some celiacs are positive only in the IgG versions of celiac disease tests. The deaminated gliadin peptide antibody tests (DGP IgG and DGP IgA) often catch cases that the tTG IgA can miss. If you get these tests done, makes sure you are eating gluten in the weeks prior to testing or you could have a false negative. There's always the biopsy too.

If you are done with testing, then I old advise the gluten-free diet for a few months (6 is good) to see how you improve. Non-celac gluten intolerance (NCGI) can cause the same health issues as celiac disease including vitamin deficiencies.

Good luck in whatever you do. :)

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    • I'm actually scared to go to the doctor and could use some advice
      Hi Elle......do you think you would have better luck obtaining a full Celiac panel from your GP or a gastro doc?  You really need to be tested for Celiac because of all your symptoms.  Many other people probably thought they were dying of some horrible disease because they had so many symptoms that docs ignored.  Very common problem for us.  Plus, your Mom has had "IBS" all her life.  I should add that IBS is not a diagnosis.  No one needs to be told their bowel is irritated......they already know that.  This is where the medical establishment, no matter where you live in this world, fail us.  They need to find the root cause and there always is one.  You also do not need to have any gastro issues to be a Celiac but you do have some, along with all your symptoms mentioned.  Anxiety is a huge problem with Celiac Disease and for many, it goes away just fine on the gluten-free diet, without need of meds...which should always be a last resort measure.  I have never had an anxiety problem in my entire life until after I was diagnosed with Celiac.  I may have had it but with all the other numerous symptoms I had, the anxiety may have gotten buried somewhere.  But guess what? On the extremely rare occasion when I am glutened or cc'd, I get major anxiety for about 4 days and then its gone. B12 is a water soluble vitamin so whatever you don't use, it exits the body in your urine.  It is pretty damn hard to overdose on the stuff.  I take a B vitamin everyday, very high quality ones and my B12 is usually in the high 600 range.  Optimally, it should be between 650-800 so yours was abysmal pre-supplementation.  Absorption can also be affected by PPI's.  You did notice improvement with the tingling sensation and fatigue once your levels were way up so take notice of that. My biggest advice is to get your mother and you tested for celiac, with a FULL PANEL. Then you'll have to wait and see what that shows. You could always trial a gluten-free diet if all testing is complete and the results were either negative or inconclusive. That sometimes happens with people, especially if they have Celiac's other cousin......non-celiac gluten intolerance.  This would be the best route to go with regards to your anxiety, unless it becomes disabling and you need meds, short term. Make sure you tell them that anxiety is a HUGE symptom of Celiac and it is not normal for younger people to have extreme anxiety like that, for no reason. Good luck to you and please call and make the appointment. I understand your fear....I hate doctors and it's pure mistrust. But sometimes you have to address a problem head on.    
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    • I'm actually scared to go to the doctor and could use some advice
      Well, if I were you, I would go see your doctor and talk to him/her about all this.  Tell your doctor about your anxiety. When I finally did, my doctor prescribed a low dose of an anti-anxiety med and it has made a world of difference in my life.   About the whole thing with the B12 and the weird symptoms . Keep taking the B12 in the meantime to see if that helps again. But talk about it anyway.  If you want a celiac test, ask for the panel to be done. Your doctor may or may not want to send you to a GI for that. Remind him your mom is being tested. You do not have to wait for her results.  Work with your doctor if possible and if not, maybe find a doctor you can work with. If all you end up needing is b12, that's a good thing. If you end up needing more help, starting with your doctor and a heart to heart Talk will have you going in the right direction.
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