Great News - Official Diagnosis!!!

[shakey1961]

Met with the consultant at the local hospital at lunchtime and she has agreed that I am gluten intolerant and that's what's been causing my anxiety, panic and hypos for the past 35 years!!!!

AT LAST!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Cured - well diagnosed and can lead a normal life now.

Look out world - here I come.

[gregcool]

So happy for you Shakey..must be realy nice to know..can i ask you..did you have some kind of test ? What was it ?...iv allways felt flat ,depressed after many foods .instantly after.and low moods all day.esp when iv had a sandwich.often ferling tired afyer eating and flat..what test could i ask for..again im really happy for you..thsnks

[Mr Average]

Congrats! :)

[Annie0904]

I am really pleased for you shakey that you have found a cause of your anxiety and can now hopefully eliminate it. I had food intolerance tests done and I am fine with gluten but intolerant to yeast. I must admit I am not as strict as I should be in avoiding it as it is added into so many foods. Mine was done by blood tests and I also had a colonoscopy.

[nomorepanic]

I am glad you got a diagnosis.

Can I ask how this will now cure your panic and anxiety ?

[Edie]

I'm glad you've got a diagnosis that should help you. I also have problem with gluten that causes stomach problems and emotional ones. Cutting out gluten has helped immensely, but sadly not totally. Anyway, I hope this will lead to a happier and healthier you!

[shakey1961]

Thanks for all the good wishes in the replies.

I didn't have a specific test, it happened by accident. I'd eaten a sponge cake I'd made myself and had bad diahorrea the following day. I thought it was to do with the eggs in it, so went to see my GP who said it was unlikely to be the eggs but to "cut out the wheat."

Within days I was feeling better. Calmer, relaxed, heart rate slower, breathing slower. No more need to take deep breaths, mind doesn't race or go slow.

My main symptom was low blood sugar. In a leaflet produced in conjunction between Diabetes UK and Coeliac UK one of the symptoms of Coeliac disease is hypoglycaemia (Low blood sugar). I finally had my missing link. As far as I know, there is no history of diabetes in my family, so why should I suffer with blood sugar problems? When blood sugar drops the body compensates to keep you conscious by releasing adrenalin making your heart race and feeling anxious, sweating etc. We're all well aware the effect adrenalin plays in anxiety and panic problems.

From very early on I said to my parents that "something was doing this to me" and I've eventually been proved right.

There are tests available if you think you have stomach/gluten intolerance problems. Ask your GP for a test for Coeliac disease, or you can buy a coeliac test which is very reliable from Boots at around £20.

MOST IMPORTANTLY DO NOT STOP EATING WHEAT, BARLEY OR RYE. If you do, and you have coeliac disease the test will come back with a false negative. Coeliac disease produces antibodies in the blood and it's these antibodies that the test looks for. You can still be gluten intolerant without coeliac disease, so don't give up. If, once you've done the test and seen your GP and still nothing, then go on a wheat, barley and rye free diet and see if you feel better.

Coeliac disease/gluten intolerance is not a food allergy, it's an auto-immune disease. You immune system attacks your gut when it's presented with wheat. It flattens the villi in your gut that's responsible for getting the nutrients from your food into your body. It also causes you to burp and fart a lot! I believe I inherited it from my father's side of the family as his problems with "gas" were the standing joke in the house. Sadly both my parents have passed away now. It now turns out my cousins daughter has been diagnosed with Coeliac disease and that is through the male side of my family. There's lots of stuff around the internet so stick it into Google.

Am I cured? Well No and Yes in that order. Coeliac disease is a lifelong condition and can't be cured, but was I ever ill in the first place? I had a condition that was presenting with symptoms which to the GP's looked like anxiety and panic caused by hypos. But Yes, I am cured in the sense I can stop those symptoms by avoiding gluten. I know the exact problem, I now have the answer and the tools to deal with it.

It's all about knowing the cause. Once you know that you can take steps to deal with it!

Sorry for the long post

---------- Post added at 18:55 ---------- Previous post was at 18:50 ----------

Oh, also if you have coeliac disease you could also be lactose intolerant, as the chemical needed to breakdown lactose is produced at the ends of the villi. No villi, you can't digest lactose.

Interesting.

It does however usually get better once you're off gluten and the villi return.

Once again look up villi and coeliac disease in Google

BTW, it's spelt Celiac in USA

[Edie]

I have similar symptoms from eating gluten, but they come on within 3 hours, which seemed too fast for coeliac disease, and I have tested negative for coeliac now anyway. I get diarrhoea, fainting, a "sense of impending doom" that causes me to burst into floods of tears, and then I just fall asleep for about 3 hours. It was initially seen as part of my depression, IBS and ME, but I haven't had a single one of these "attacks" since I stopped eating gluten, though I do still have depression, IBS and ME.

My GP isn't really on-side about it though. I initially tried the gluten free diet against his advice to see if it would help with my IBS symptoms, I wasn't expecting it to help with anything else, so that was a nice surprise. But I'm sticking with it because of the benefits it's had for my physical and emotional health.

I looked into coeliac disease quite a bit when I realised the gluten connection, and sometimes it can result in nutrient deficiencies, because it prevents the gut absorbing nutrients. Sometimes these specific nutrient deficiencies can result in psychological symptoms such as anxiety or depression, in addition to the hypoglycaemia you've mentioned. I hoped something like this may be the case for me, but sadly things seem to be more complicated in my case.

In the UK, if you have coeliac disease, you can get some gluten-free items on prescription, which helps with the extra cost.

Onbiously no one wants to have a disease, but I can see why this diagnosis is good news for you, as it means you can deal with it now.

[MidnightRunner]

This is quite a break through for me just reading about all this. I've googled it and the symptoms shockingly match mine. I'm going to be looking into this and doing some investigating into it. Hope is hope after all.

Thanks for posting this and I hope you are feeling better :)

[shakey1961]

Hi all. I'll try and answer some questions. Ha Dr Steve here!!

Edie - 3 Hours for symptoms to come on you say seemed too fast. Not at all. I went out for a meal with a friend and I looked on the menu for something that would be ok. Gammon, peas and chips - seemed safe enough, no wheat in that. Halfway through eating my meal I started burping and I looked at the chips and they seemed extra crispy and fluffy on the outside. Deffo had been coated in flour. Within a few minutes my stomach had become bloated. Following few days I felt rotten. It can take any amount of time for symptoms to show after eating gluten. For some it will be very quick for others longer.

What tests have you had for Coeliac? Some tests don't pick it up cos they look for only one type of antibody, and if you produce another type then that test will miss them. Also blood tests can not pick it up at all, but you can still have it. Other than that having a camera down your throat and a biopsy taken is another way which I don't fancy.

Ultimately, if you've had all the tests, try coming off gluten. Don't even eat crisps cos they may have been produced in a factory that handles wheat etc. I used to eat loads of Walkers crisps till I found out they were making me ill. Go into Tesco's, they have a great Free From aisle. Buy rice cakes (Kallo brand) as a source for snacks and try it for 2 weeks. Make a note of your symptoms before you start and see if they get any better.

The "impending doom" feeling could be your blood sugar falling. Do you feel dizzy/drunk and can't stand noises? Low blood sugar can also make you sleepy and will come on a few hours after you've eaten. Diabetes UK and Coeliac UK have a fact sheet that says hypoglycaemia is one of the symptoms of Coeliac. It was one of my main problems and I have the glucose meter readings to prove it. My hypos now are few and far between, and when I do get one it's nowhere near as bad as they were.

Jamie, I don't know your circumstances, but don't stop eating wheat and get yourself down to Boots the Chemist today and buy a £20 coeliac test. But don't get disheartened if it comes back negative. Keep me informed of how you go on.

In fact both of your send me a private message and I can try and help you personally.

I'm a firm believer that anxiety has a physical cause. I always had a "feeling" it wasn't in my mind. There was something hidden. Now I've found it, it's the missing link.

As I have recently said "I've found the missing piece of the jigsaw - and the more I do research on it, the more the jigsaw picture comes into focus and in High definition."

Oh and if you're not happy with your doctor move to another one. Sod them if they won't listen to you. It's easy, all you do is go to the new practice, say you want to join, fill in the forms and from then on you're with that new practice. You don't have to face your previous doctor ever again. I did it and it's cured me. Then again, my doctor is slightly closer to me personally as his wife plays French horn in the orchestra we are in, so I see my doctor on an informal basis outside of the surgery.

15 years ago you wouldn't have got me more than a couple of miles from my home by myself, and certainly not 20 miles away even with help. A week on Monday I'm travelling to Liverpool with friends on a busy bank holiday Monday to play with the orchestra at Chavasse Park at Proms in the Park! I'll admit I'm a bit scared, but also excited! If you're around and can make it, do please come along and come and say hi. We're on at 3pm!

[Gotagetthroughthis]

Congratulations shakey1961

I hope this diagnosis can finally help you get to the bottom of your anxiety troubles and hopefully you can now strive forward feeling strong and healthy.

I have always wondered if I had some sort of intolerance to a type of food, mainly Gluten, but I never fully believed it could be causing me to feel this ill and causing all my severe anxiety problems. I still don't think it causes all my problems but it may be a huge factor and after reading your thread and researching a little I think i will definitely look into this.

I found this list of symptoms and I have every single one apart from one of them which im not sure about. Heres the link so others can have a look;

http://www.mindbodygreen.com/0-7482/10-signs-youre-gluten-intolerant.html

Now I know a lot of people with anxiety will have quite a few of these symptoms but they fit me exactly so it has given me some hope that something may be adding to or causing my anxiety.

Hope others find this helpful and I wish you all the best in your recovery now Shakey, keep us updated on how things are going :)