Dozey

  On 6/5/2013 at 3:15 PM, nvsmom said:

The tTG IgA test is not the most sensitive test for picking up cases of celiac disease. According to the World Gastroenterology Guidelines for Celiac Disease, it only picks up 75-95% of all celiac cases - it could miss up to 25% of celiacs.

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As you know, celiac disease can lead to low B12. It is extremely common. It could takes months on the gluten-free diet for that to improve though. If you think you will have a hard time committing to the gluten-free diet, and you need to be 100% committed to get the full health benefits, then you should probably continue eating gluten and get further blood testing or an endoscopic biopsy done. The link above, on page 12, has all of the serologic tests done for celiac disease. The DGP tests are some of the best.

 

There is a good chance you have Non-celiac Gluten Intolerance /Sensitivity (NCGI) in which case there is no blood test that can diagnose it, only a positive reaction to the gluten free diet is diagnostic.  You would need to commit to many months gluten-free to notice all benefits, I would consider 3 months the minimum and 6 months would be better. NCGI can lead to low B12 too.

 

I know it's hard to have a plan of action when you feel badly but you need to make yourself choose a path, be it going gluten-free now or pursuing further testingand then going gluten-free, and commit to that path so you can move towards better health. It is so very hard to get started but once you get some momentum going it gets easier... at least that is what I have found.

 

Hang in there.

Thank you so much for all the information. I haven't decided what I want to do yet.

Jo

  On 6/5/2013 at 2:18 PM, nvsmom said:

It could be gluten or it could just be your inflammed body over-reacting to something. If it is a symptom you usually got while eating gluten, I would say that was probably it. I don't know what a veg sos roll is but if it is a processed food it could have wheat - was there soy sauce involved?

I used to have symptoms of hypoglycemia before I was diagnosed. I would get quite shakey, weak, and dizzy if I hadn't eaten for 3 or more hours. Could it be something like that?

I hope you continue to feel better on the gluten-free diet as you get it to 100% gluten-free. Give yourself time to feel better. it takes the body a while to settle down.

Hi nsvmom and thank you for replying. I have had so many syptoms since becoming ill with b12 def last November, it has become really difficult to know what is causing what. The veg sos rolls are quorn based with pastry so I would imagine they aren't gluton free. I know I shouldn't have had it but I am doubting my self diagnosis, with everything else that is going on. I am just sick of feeling ill.

Hi all, me again. I finally got my blood test paper work and the only test done for celiac was

Tissur Transglutaminase IgA level. - Negative.

So I am no wiser.

I have been cutting out gluten for a week or so and the gurgling and discomfort have eased.

However, last night I had veg sos roll and quiche, and about 11.30 this morning I began to feel quite ill, sick anf trembly. It has passed now.

Could this be a result of gluten? I have had these episodes in the past when I was eating normally but have been putting it down to the B12 def. i don't think I have had an episode while I was off gluten.

It is so difficult to know what sypmtoms belong to what as I am also vit D def and have just had to incease my thyroxine.

Thanks

Jo

Hi, have you been tested for b12 deficiency. It can cause premature greying.

Jo

Hi, and thank you for your replies. With having a thyroid problem, b12 def and low vit D it is difficult to know what symptom goes with what! The anxiety and agoraphobia are certainly not so bad as they were and I am managing to get out fot a short walk most days, I even managed a trip to the supermarket yesterday! Although I feel shattered again this morning. I appreciate all your help and encouragement.

Jo

Since cutting out some ( not all ) gluten I have started to put on a bit of weight. Just a few pounds in two or three weeks. But as I have lost 4 st over the last year and a half, and still been falling slightly since last November, it seems a big coincidence. When I am well enough to shop I will check out the gluten free products at the supermarket and try to cut out as much as possible. Hope this is an answer for me at last.

Jo

Hi, were you tested for vit B deficiency. Those symptoms are very similar. Also check vit D as this is a big problem these days with people staying indoors so much. Just a thought.

Jo

Hi, Butchers say their dog and cat food is gluton free, I think you can get it off Amazon. I'm going to have a look for my two.

Jo

  On 5/19/2013 at 11:07 PM, frieze said:

arghhhh.....this is a life long condition!  will not go away, some docs...... as I said large doses, on an empty stomach....methyl-. if you can get it, instead of the cyano-.good luck.

(welcome, Irish; lol)

Thanks Frieze, I appreciate your advice.

Jo

Thanks both. Well that's what I can't understand about the doc saying I don't have PA now. He said tablets are no good to me as I won't absorb them, and I know I have to have injections every three months for life. Or that's what I was told initially. Another doctor said that as my level is now high (after loading doses and two top ups) she would be looking at stopping them! That's why I changed docs. My level was only 83 when I was first diagnosed in November and it took two and a half months for the old surgery to tell me that. I am just waiting for my blood paper work to come so I can see what my level is now.

Jo

Hi IrishHeart, I am Hypothyroid, and don't absorb b12 as I have parietal cell antibodies. I was originally diagnosed with Pernicious anaemia by the Gastro but this new doc says my blood is ok now! I have muscle wastage, most noticably on my hands but arms and legs too.

Jo

Hi, please try not to worry too much. I had something similar recently. I was diagnosed with very low B12 and my doctor said he would refer me to a Gasrto. The letter came two days later with an urgent appointment for the following week. I was terrified especially as cancer was mentioned in the letter. It turned out to be nothing, just an appointment to rule out anything serious. And some years previously I had a phone call from my surgery to say the doctor needed to see me asap over some blood test results. I spent the weekend worrying, only to be told I was anaemic and needed iron tablets. Obviously I was pleased things had been taken seriously and teated quickly. The trouble is I don't think secretaries are allowed to give out information. Your appointment is possibly a precautionary one. But if it is something, then you are getting it dealt with quickly.

Jo

Hi all, just saying hello. My doctor says my blood test was negative for Celiac but I am still waiting for the paperwork to see which tests were done. I was low on vit D and my thyroid had dropped too, so that along with the b12 deficiency makes it difficult to know what my symptoms are down to. I am slowly cutting gluten out of my diet. I am feeling slightly better than I have in the past, so maybe my problems have all been due to thyroid and vitamin issues.

Jo

Hi, I am not knowledgable at all on Celiac issues, but I would think anyone who lives mostly on fruit veg and rice would have that kind of problem. I think you need more bulk in your diet.

Jo

  On 5/10/2013 at 7:51 AM, English Chris said:

I'm a 15 stone 6ft 5 man who doesnt do illness - six months ago I was flying a helicopter, I got on a plane on my own last year and drove across Florida. Three months ago I was diagnosed with Coeliac. Over the weekend I was obviously contaminated by a large quantity of gluten - Tuesday morning on the way to work I was hit with the mother of all Anxiety attacks, the top of my head went numb, I went dizzy and the pressure in my head had me on the verge of concerning myself that I was going to black out/ die or have a stroke. I drove myself to A&E. My blood pressure was normal, pulse a healthy 68bpm, but I really did not feel myself, they said it was a stress attack. Yesterday I cried like a baby in front of my girlfriend (I dont do crying), I felt I was losing control of myself. This morning I woke feeling the same - the release of adrenalin makes my legs shake. I got out of bed put my trainers on and ran probably the quickest mile of my life, 30 mins later I still feel dizzy, my head is still numb, but the panic has gone. I am due another check up this morning with my doc and will hopefully rule out other possible conditions, which judging on the speed I ran that mile I would imagine would rule out MS? When you feel you are slipping into the Anxiety imagine yourself in a good place and focus on it, stop your mind from racing, that makes it worse, easier said than done I know. I feel relieved that 99% this is the cause of gluten and Coeliac. I wish you well and I hope you improve - it is easy for it to dent your confidence in going out the door, dont let it.

Thank you Chris, the anxiety and spaciness is the worst thing I think. It robs us of everything positive,Courage, confidence and determination. My blood result was negative for Celiac but I think I may try cutting out Gluten anyway. My vit D was low so that I think can contribute to amxiety etc as can low b12 which I also have. I hope things improve for you soon.

Fern

Hold on and good luck.

Jo

Hi Karichelle. I emailed then back and rold them it wasn't very helpful.

Jo

For anyone interested, I emailed the Bodyshop to ask about gluten in their products and this is the reply I got.

Dear Jo,

 

Thank you for your email.

 

Gluten is not cited as an impurity in our raw materials and our suppliers do not test for gluten.  If any of our products contain wheat, rye, barley or oat derivatives have gluten as an impurity; the level would be extremely low.  We are not however in a position to guarantee that the products are gluten free.  It has to be stressed that this is the same for all reputable cosmetic manufacturers.

 

  On 5/9/2013 at 8:48 AM, Miss-Marie said:

Since I first got the symptoms of celiac I've been extremely anxious all the time, and I feel like im not apart of the real world too. I think my anxiety is mainly from the stomach issues I've been having - which means that I always have to plan the nearest bathroom etc, glad to know I'm not alone on this one x

Hi Miss Marie, it's a horrible feeling isn't it, the anxiety and unrealness. I am glad I'm not alone too. I have just had my first session of CBT and the therapist says she has never come across DP before! She did say though that she thinks my anxiety syems from some thing physical rather than being purely a mental problem. Hope things get better for you soon.

Jo

Hi stormy wren, I'm afraid I don't know enough to help with your questions, but just wanted to say that long term use of acid reflux medication can interfere with vit B12 absorbtion, which can lead to a deficiency. You might want to check that out.

Jo

Hi jhol, and thank you yes it does help and gives me a bit of hope. I hope you keep seeing improvements and am pleased you are feeling better.

Jo

  On 5/8/2013 at 2:59 PM, VeggieGal said:

Well hopefully the gluten free lifestyle may help ..just might take some time .

Ok, thank you

Jo

Hi VeggieGal, i have recently had my thyroid checked and been told my dosage is correct, although of course I haven't gone gluten free yet. Just hope it will go away soon, I don't like it

Jo

Thanks dark angel and taynichaf. As I said I wouldn't wish it on anyone but it is reassuring to know others understand it, and that it has a possible cause.

Jo

  On 5/8/2013 at 12:47 PM, shadowicewolf said:

Yes, it could.

Many thanks

Jo