Theories Confirmed...

[Holgate]

after a few years of 'getting the feeling' that I had an intollerance to gulten, it seems yesterday everything has been finally confirmed.

For years now I have had problems with my sinusus, always blocked, ears bunged up with wax etc, yesterday I had an appointment with someone to have an ear candling done which went well. However after the inital treatment and the facial massage that went with it the thearpist gave me a list of foods I needed to eat and told me I had to be tested by my doctor as soon as possible because she thinks...in fact she was convinced that I'm Celiac and told me to get started on a new diet as soon as possible which I have tried to do to an extent today.

The whole strange thing about it was the fact that she managed to say every symptom I have had for the past 6 years without me even saying anything about my diet, she just knew from my skin and even the ear wax there was something wrong.

Tireness, irritablity, fizzy minded after meals, blotchy skin (in fact painful spots at times) periods of depression, difficulty with night vision (which I have found almost dangrous while driving in the evenings, bloated, wind etc

It actually all makes sense and does seem to have been coming to a head over the past few months.

Now I just have to convince my doctor to at least give me a blood test so I can at least confirm it fully although i have made a start. However the problem will be getting diagnosed here in the UK....we arn't exactly moving on in leaps and bounds with diagnosis of the problem mainly because doctors don't believe it is a real problem, although I do have to say on the whole my doc is pretty good and open to suggestions.

What does annoy me about this whole problem is that a) I have been mis diagnosed in the past and I went through 6 months (six years ago now!) of taking anti depressants because of 'depression' which could have been down to a simple food alergy and far easier to treat than being given drugs which made me bounce off the walls for months on end.

Anyway my main question, how did you cope immediatly after diagnosis and what steps did you take to turning things around?

[celiac3270]

There are two things I believe you need to do after diagnosis to be successful and get your health back on track: accept your diagnosis (which you seem to have already done, but many go into denial) and educate yourself on the disease as much as possible. Reading old threads in this forum is a great way to start. I'd also highly recommend getting a few books on celiac. Two good ones are:

Wheat-Free, Worry-Free (by Danna Korn, a big celiac author)

Against the Grain (by Jax Peters Lowell)

I didn't buy any books upon diagnosis--researched everything on the internet, but I wanted to learn something new on celiac and I've read close to all of the threads on here, so I got both of these books today and love them.

For internet research, besides the posts on this board, go to the site index on celiac.com, where you can get forbidden and safe ingredient lists, articles, etc.

Finally, ask questions! That's the whole reason this board exists, anyway. Welcome!

-celiac3270

[ianm]

I found doctors to be basically useless in dealing with this disease. This group has been very helpful and informative. Once I realised what I had it was like the sun finally rising after a 36 year long night and I was finally free. This past year has been a great year and things get better everyday. You've come to the right place. It has been a long hard road for all of us but be glad you at least know what you have and can now do something about it.

Ianm

[cdford]

It will feel so much better once you have been gluten-free for a while, but do not do it until after the testing. In order to get a good test result, you need to have been eating gluten. Your symptoms sound so familiar!

[Ruth UK]

Hi,

I, too, am from the UK and have just received +ve blood tests for celiac disease. However, as others have mentiond, I'm not on a gluten-free diet until I've had my biopsy. Actually waiting for appoitment with GE consultant at present and will hopefully have biopsy after that.

Because I found out that I had to be eating gluten in order to get +ve biopsy I've actually added more to my diet - and now have gastro symptoms, having previously had only 25+ years worth of iron deficiency anaemia! I really WANT to get started on a gluten-free diet because I'm sure it's going to make me feel so much better, but will probably have to wait weeks!

Hope you get on OK getting a blood test from yr dr - at least if that and yr biopsy come back +ve you will be able to gluten-free food on prescription, so free if you get free prescriptions, but if not only

[KaitiUSA]

RuthUK-I am only diagnosed through blood tests. The blood tests were so highly positive that I didn't need a biopsy to get an official diagnosis. I was told by my GI doc. that because my celiac was just triggered only about a year prior to the +blood tests that the biopsy would come back negative anyway due to lack of damage. Some people on here have had positive blood and negative biopsies due to lack of damage...others have had both positive...and there are some self diagnosed on here as well. Do you feel a need for a biopsy with the positive blood tests?

If people get biopsies or blood tests they need to be on gluten to make sure the results come back accurate though.

When I was first diagnosed it was overwhelming and hard because there were so many things that I thought were gluten-free but had gluten hidden under flavoring and so forth. I had alot of support from my parents which helped and then I also researched alot. I knew if I kept eating gluten I was putting myself at risk for cancers and other serious complications. I also knew I would feel better after going gluten-free and so that motivated me even more.

[Carriefaith]

and told me I had to be tested by my doctor as soon as possible because she thinks...in fact she was convinced that I'm Celiac and told me to get started on a new diet as soon as possible which I have tried to do to an extent today.

I don't think anyone has mentioned this yet, but you MUST be consuming gluten for your tests or else the results may be false negative (if you have celiac disease). If you want medical tests done then don't start the diet until after the tests.

Just a heads up

[Ruth UK]

Hi, Kaiti,

Thanks for yr reply. I have three main reasons for wanting a biopsy:

1. Need to know for certain why I've been anemic for so long - if no damage to villi (after presumably 25yrs + of having celiac disease) then why am I anemic?

2. In UK we can get gluten-free food on prescription - saves a LOT of money, which I need to do because I'm a full itme student with exceotionally limited funds

3. I have two teenage children. If I get a +ve biopsy our drs will most probably agree to giving them blood tests for celiac disease; no biopsy (or even perhaps a -ve biopsy) and they will probably be very reluctant to get them checked out.

(Actually there's also a 4th reason - if I get a +ve biopsy I will know for CERTAIN I have celiac disease and will be far more likely to stick to gluten-free diet! Otherwise I think I might be tempted to cheat, particularly if I get no relief from the anemia.)

As it looks as though I've had celiac disease since I was a teenager I'm prepared to wait a little while longer to get a definitive answer. I do realise there are risks involved, but I think on the whole I'd rather have a biopsy.

Also having to wait a while means I'm getting REALLY prepared for gluten-free already. Have tons of info, thanks to this ite and others:)

[KaitiUSA]

Ruth UK-That makes sense for wanting the biopsy done. With the positive blood tests even if the biopsy comes back negative I would still strictly follow the diet or get it checked further just because if it is celiac and you have frequent "mistakes" then you would be putting yourself at risk for further more serious problems. I would not x celiac off if it comes back negative because there may not be enough damage where they looked. Make sure they look all around the small intestine because certain parts may be damaged and certain parts may not be so some doctors who don't know what they are looking for miss it because they take samples from the wrong places. Make sure you have a well experienced GI who knows what he is looking for with celiac.

I definately understand you wanting to get a biopsy and if I were under those circumstances I would too. I wish you the best

[Holgate]

well I have been to the doctor and had the blood tests done, just awaiting on the results of that.

In the meantime my doc had said to try a bit of an experiment, for a month he wants me to go gluten-free while we wait for the initial results to come back, test again, see what happens than then go back to normal for another month and test once again to see how things pan out.

His main concern at the moment is that I haven't had excess weight loss because of glutens, but he hasn't ruled it out. He has said at the very least I could be wheat intollerant so once in a while it won't be too bad if I digress from the diet.

I do have to say after just a week of being as gluten-free as possible I do feel slightly better in myself, certinally don't feel bloated any more and the toilet end of things have been a bit better. It will be interesting to see what happens after a fortnight or so.

I have to admit I have found the diet slightly easier than I thought I would even though I did waver a bit on the chocolate front (I was advised to hold off on it for a while) today, but one of those things, live and learn.

[celiac3270]

Hmmm...I think I and a lot of other people here would...disagree with the logic of this. First off, if he has you go gluten-free for one month, there's a good chance that you might not see any change to begin with. Also, if you test after being gluten-free a month, you may or may not test positive still. Being gluten-free would make you more likely to test negative, but you might still be positive since it hasn't been long enough. Additionally, going back to gluten after so short a time would not be advantageous--it sounds as if he's trying to put you on a miniature version of a gluten challenge.

Glad that you're feeling better, though.

Also, unless you have some allergy, you're probably recommended to avoid chocolate because of the high amount of dairy, which can be harsh for celiacs when they initially start the diet. If you avoid it for a little while, you will be able to tolerate it better later. When you can eat candy (although some of thse you can eat now, since they don't have chocolate in them), Hershey's will clearly list gluten on their labels...gluten-free candies include: Skittles, M&Ms (EXCEPT FOR the blue pack--the Crispy kind), Starburst, Snickers, Milky Way Midnight (NOT regular), Butterfinger, 3 Musketeers, a Hershey's chocolate bar, Tootsie Pops, Tootsie Rolls, Jolly Ranchers, Charms Blow Pops, etc.

[Guest nini]

I was lucky that my GI doc recognized my symptoms as Celiac on my very first visit with him. I didn't have the weight loss, but had unexplained weight gain and inability to lose weight no matter how little I ate. He ordered the blood test right away and told me to go ahead and start the gluten-free diet because he was absolutely positive that was my problem. 10 days later when he called me (personally!) with the test results, he said OH YEAH you most definitely have celiac! He said my #'s were off the charts... anyway, I was so glad to finally have an answer, and have felt sooooo much better. My daughter was also showing many signs of celiac in a child, projectile vomiting, diarreah all the time, failure to thrive, anemia, and even violent uncontrollable outbursts that would happen within 20 minutes of her eating. After one week gluten-free, she showed major improvements.

[Guest BellyTimber]

Hullo Holgate,

I'm also in the UK and my experience is as follows:

I was with a nutritionist who suspected gluten intolerance and I had given up wheat but was going heavy on the rye, barley, oats and spelt. Meantime there were various lab tests I had paid for, that furnished confirmatory data. I was somewhat improved till I infringed on a Penguin biscuit during a communal churchyard clearing session. Ouch!

A strange thing about nutritionists is they and doctors don't communicate all that closely, the former not being on the NHS. Anyway, it's as if my innards said to themselves, about that time, "he's heard about gluten now, we can drop the pretence that we've kept up these 47 years and seven months" and decided to start communicating with me direct.

Looking back, there was a couple of bouts of appendicitis, I was extremely emaciated till age 25, put on weight because I put on height and afterwards because of strong drinks! Had several teeth taken out of overcrowded mouth, was tired for years on and off, had weak joints, couldn't do some forms of exercise due to poor spacial perception, relating well with people ditto, mumps twice (effect on pancreas?), chicken pox at age 20. Have oversensitive hearing; poor vision at night. A lot of smallish things basically; I'm very mainstream.

Anyway my GPs said yes go gluten free. I didn't know about endoscopy/biopsy then and somehow I didn't get sent for that. I'm now advised it's too late (two and a bit years later). I'm hoping my GP will give a diagnosis in different but useful wording.

Why does one need a diagnosis? For me all the reasons Ruth gives but also and crucially, there hasn't yet been a report to my employers who are getting upset by my sickness absences so it is only fair to them to give them an idea how long till I get back to standard fitness and what the prognosis is. And fair to myself as I shan't have to worry what they are thinking, any more. In my circumstances the wording will not contain the phrase celiac disease.

Hence I shall not qualify for the goods on prescription. If I keep the job I shall be able to afford them in shops.

I made the mistake of moving home twice after first going gluten-free, one home was in a dangerous location, here is nice but the kitchen is so small I can't find space to put my bread machine, I'm hoping someone can come & advise me (spatial issue still).

Also was coughing up brown bits this time last year. Many of us seem to have other "issues" besides gluten, I think that is the norm and the body highlights them in turn.

This time last week I was "bad mouthing" people on this list, the doctor and a support group I belong to and this week I want to express gratitude.

I would be sceptical about your doc's theory about weight loss and other reasons for embracing gluten-free at this time, would go with what the others say, however would add I don't know whether people get negative biopsies in the UK like some evidently do in the US, and where that would leave you.

In particular I would not want to drive any wedges between you & your doc!

I spent the years leading up to going gluten free researching the shops for gluten free things that I had merely for the change, and grew to like some very much.

The Cookworks bread machine is from Argos and is suitable for gluten free baking (not all makes are) and is in the

[Guest BellyTimber]

I put:

Don't forget to look up Barbara The Bread's web site. Yes she does live in Wales!

just to add, it is at:

www.barbaraskitchen.co.uk

Michael