How bad is it?

[EdenTreaty]

Hi, 

I recently found out a few days ago that I'm a coeliac. I started feeling really bad a few months ago initially thinking I had anxiety, I went to the doctors and had blood tests which picked up that I was low in B12 and folic acid. It then took about a month of theorising and testing to eventually pick up coeliac disease. 

I suppose its been underlying for a while now - for a few years I would get terrible hangovers and my hands would always tingle like crazy, I suppose this was the first sign. Then about a year and a half a go I had a terrible stomach ache brought on by stress, I just thought it was a panic attack at the time. After that thankfully it died down for quite a while but I started experiencing a lot of health issues for around the past 6 months. I've experienced my hands tingling, ringing in my ears, slight dizziness, quite bad headaches always on the right hand side of my head, painful occasional stomachaches and was feeling very anxious and more 'confused' than usual. Obviously I've cut gluten out of my diet and physically I'm starting to feel better. 

The thing I'm concerned about is how its caused some ataxia in me, I believe. I've felt dizzy for a while - I do bump into walls occasionally although I've never actually fallen over. Sometimes it goes away, I'd say I notice I feel slightly dizzy a few times a day. I have noticed my coordination get slightly worse - sometimes I would put a glass of water down a bit too hard, always wondered why I did that.. And I do feel like I've had 'brain fog' for the last 6 months or so. And words have become a bit more difficult - I would sometimes mix up words like I was dyslexic, sometimes I'd have to read a sentence a few times before it made sense and it has become a bit more difficult to talk in person, always would attribute this to anxiety. Also had some short term memory issues - there were a couple of times I forgot peoples names who I really should remember, was a very weird feeling, as if my mind had just gone completely blank and it had to restart. 

I'm not that concerned about the whole diet and my stomach getting better, I'm just worried I've caused damage to my brain (I don't want to be walking around felling dizzy for the rest of my life). I understand that some of this could be caused by B12 deficiency/malnutrition. I was put on B12 tablets around 3 weeks ago and my headaches have got a lot better along with the tingling and thankfully I haven't had another memory 'issue'. 

So far I've only had a 5 min phone call telling me I tested positive for Coeliac disease and to stop eating gluten. I have a face to face appointment in a couple of days where they'll prescribe me some things apparently. But a more serious appointment with a gastroenterologist in 4 and a half months (not very happy about how far away this is...).  So at the moment I'm just trying to figure out how bad this is because it seems like I won't be getting answers for a while. Did I pick up on it early on? Or is this quite late to find it compared to others? I suppose I have been able to notice it for about a year and a half, although for about half of that period it seemed to die down almost completely. Is what's been happening to my brain expected? Will it go away completely or it it something that will die down but still be noticeable? Is there anything I should request from my doctor, e.g an MRI scan or something? I'd appreciate any thoughts. Thanks

Edited July 3, 2018 by EdenTreaty

[Ennis-TX]

Well first off, it could be 2 things or the combination, 1. Nutrient Deficiency 2. Gluten Ataxia. I would suggest a full spectrum B-vitamin, they work together and just taking one will not get you the full benefit (wish I could show my medical charts on these). Magnesium is another one that can effect coordination and neurological function and is a common deficiency issue with us.
Supplementing, I use Liquid health Energy & Stress and Neurological Support 1 tbsp each 3 times a day for a good amount of my B-vitamins.
Magnesium depends on your bowel habits, if you have constipation (not going daily) then Natural Vitality Calm dosing to tolerance (start off 1/4tsp [1-2g] and up it that much each day til you get loose stools then back down) Or if you have normal bowel movements Doctors best winch is a Magnesium Glycinate at night per instructions.

Gluten ataxia if it did indeed cause damage you will see white marks on the MRI from the damage. I myself have gluten ataxia, and it heals the slowest. Nerve damage can take decades to heal they say, I have noticed after 5 years I am starting to regain heat sensitivity, and feeling in my hands. I still have issues brain damage having caused issues with numbers, other languages, and loss of the ablitiy to do computer programing like I did when I was younger. But the nerons are rearranging and I can work with plain numbers a bit more now days.

I will admit the pins and needles, burning sensations of fire needles in my arms, looping thoughts, bouts of confusion and anger cleared up in the first 6 or so months of the diet with supplementation.

Do read the newbie 101 section, and start keeping a food diary for finding any other issues. A whole foods only diet at first helps makes it easier to transition.
https://www.celiac.com/forums/topic/91878-newbie-info-101/

One last note, you said you were being sent to a GI later.....are they DONE testing? Have they done the scope? Sorry but most doctors are a bit ignorant to this disease. If you have not gotten the scope and the GI is supposed to scope you to check for celiac you HAVE TO KEEP EATING gluten til all testing is done or it sort of voids it.

 

[EdenTreaty]

53 minutes ago, Ennis_TX said:

One last note, you said you were being sent to a GI later.....are they DONE testing? Have they done the scope? Sorry but most doctors are a bit ignorant to this disease. If you have not gotten the scope and the GI is supposed to scope you to check for celiac you HAVE TO KEEP EATING gluten til all testing is done or it sort of voids it.

  

Thanks for your reply. Hadn't thought about the magnesium, I'll bring it up with my doctor. I've started taking multivitamins that contain that as well the range of B vitamins, along with the pills for B12. Thank you for the recommendation of supplements but I'm from the UK so I'm not sure I can get them here.

It's interesting that you say it prevents you from being able to be a computer programmer, that is my job right now. I have noticed it getting a little bit more difficult but hopefully I'll be able to carry on. 

Not sure whether they're done testing or not. I had a 'coeliac screen' blood test and that's how I got the result.  I got told I would be prescribed things in my next appointment so it sounds like on their end they're happy with the diagnosis. Obviously I'm not very keen to go back onto gluten again if it really is causing this many complications with me. 

[GFinDC]

Hi,

The usual testing process is the blood antibodies first and then an endoscopy later.  During the endoscopy they take 4 to 6 small biopsy samples of the small intestine lining.  They use a microscope to check those for celiac damage.  The endoscopy is probably what the gastro is going to want to do.

You should be eating gluten until all testing is done.  The immune reaction tapers off when we go gluten-free and that means the tests are not going to be accurate.  I didn't have an endoscopy until 9 years after going gluten-free, so my endoscopy showed no problems.

I would want to advance the timeline for the endoscopy if it were me.  Sometimes you can ask to be put on a wait-list for openings.  But I would not want to wait 4 months for an initial meeting with a gastro if I had nueral affects going on.  Nueral affects are slow to resolve.

You'll need to decide if getting a formal diagnosis is worth it.  The result is you end up eating gluten-free for life.  You can do that without a doctor's ok.  You can also get a gene test to see if you have the celiac genes.  But about 30% of people have the genes and only 1% develop celiac disease.