Coeliac test came back negative, doctor said to try gluten-free anyway.

[Prince_of_Cats]

I've suffered with ever-worsening symptoms since an illness back in 2007, which eventually got diagnosed as generic 'IBS' when all the obvious tests came back negative. In October, I became lactose-intolerant after a stomach bug and have been spiraling down ever since then.

Last month, I took up jogging in hopes that getting fit would help, but all I got was a quick decline as the symptoms worsened. The pain and nausea got so bad that I went to the doctor again a fortnight ago, which led to a test last week and I finally got the results today; they still can't work out what is wrong with me. It looks enough like CD that I was tested (yet again) and yet it came back negative (yet again) much to my disappointment. After five years, a diagnosis would be nice because it might lead to a treatment.

With no other ideas, he has suggested going gluten-free for a few weeks to see if that helps where every other idea has failed. I think he's clutching at straws, but I'll take anything that has the slightest chance of success...

[Hidden]

Well firstly I'm sorry that you are struggling and poor you it must be so frustrating/worrying.

Now not being a medic my opinion is that not all coeliac are diagnosed successfully by the IGA blood test and an endoscopy is more conclusive in many cases. I am making the assumption that this is the test you're referring to.

I think that it's great to hear of a Dr suggesting a gf diet so give it a go but don't do it half heartedly and think a little won't hurt.

The other thing that I would do is go on a highly nutritious diet avoiding as many processed foods as possible and eat things like baked potatoes with fresh meat and veg etc.

I would also look online at fruits that are low in fructose for the first few weeks and keep a food diary so that if something upsets you, you will have a good idea what. It might be worth checking out a FODMAP diet.

Going gluten free is daunting at first and you will only see what you can not eat but there's lots of naturally gf food out there as there is gf pasta and bread etc in the supermarkets. But try and take it one step at a time and one day at a time and if you respond positively to a gf diet then that will be great news.

Lastly you are amongst others on a life long gf diet on here so never feel alone. So good luck and do let us know how you get on.

[Prince_of_Cats in reply to Hidden]

I have no intention of going half-hearted.

I just wish it were easier. Tonight's dinner went through three changes, from stir-fried noodles to chicken and rice to remove the wheat, then to roast chicken because the sauce inexplicably had gluten in, then to pesto chicken because the gravy contained gluten. I'm still irritated that none of the local shops sold rice noodles.

I have a game with the doctors at the surgery, one I sadly have to play. I pretend I didn't study biochemistry (or Latin; they love using Latin to make things like earwax sound exciting) and don't mention the NICE guidelines (my sister, the student nurse, is great for these) because otherwise they get stroppy and prescribe pointless tablets to get rid of me. As such, I have to ask questions like 'is it possible that the test is wrong?' and 'if there another test?' because 'have you checked for an IgA deficiency?' gets their backs up.

I got him to admit that it sounded like a false-negative, but he wouldn't budge on 'a more conclusive test' (like an endoscopy / biopsy) and so I suppose asking me to try a gluten-free diet is an acceptable compromise. If it helps, I suppose I might raise CD again, just to see if they'll test me again. Or, given the whole 'eat gluten for six weeks and swallow a camera' thing, maybe I will just quit while I'm ahead...

[NorthernSoul in reply to Prince_of_Cats]

It might be that your doctor doesn't know about selective IgA deficiency or it might be that the lab automatically tests for it on negative samples (as some do). I think it's worth mentioning even if it involves saying you saw it on this forum or Coeliac UK or something... However, bear in mind that you should be eating gluten for the blood test results to be accurate so you might want to do it sooner rather than later!

About the roast chicken- I find olive oil, garlic, salt and lemon juice rubbed into the chicken makes a lovely roast without the need for any shop-bought sauce. Roast it with some veg in the same tray then drain out the juice, add a stock cube (Knorr are gluten-free) and some hot water. Meanwhile fry onions, then add in the chicken/stock mixture and thicken with a bit of cornflour to make a gravy.

[NorthernSoul]

With regards to the blood test- did your doctor check for absolute IgA levels? IgA deficiency is commoner in coeliac and can give rise to a false negative.

As for a GF diet, to reiterate Jerry, it's worth giving it a go but if you're going to do it, do it properly and give yourself a few months to see if you get any improvement.

Good luck and there are plenty of people on here with tips about what to buy/cook. It's not actually too difficult so long as you prepare things in advance and make most of your food from scratch.

[Janey39]

Prince of cats

I am sorry to hear your story, but as you will find on here so many people have the same experience. I have been tested several times each time being disappointed there was no positive result. I was diagnosed with ibs and also went through an exclusion diet, which helped me tremendously, but am stil ill.

Unfortunately with this it is trial and error until you find what works for you. I am not concerned that I do not have a positive result, I know that wheat and many other foods make me I'll, so I avoid them, not easy in the beginning but it does get easier.

Juvela I have found are great and their pasta is really really good, best I've ever had.

You will get there just be patient and where possible always try and make your own meals as processed foods hide bad things in them.

Good luck

[Jacks]

There are 4 blood tests and a test for HLA typing. I was at a lecture today where the professor said that 25% of the population carry the gene to develop CD. You could use this as a starting point and either exclude or include yourself and take it from there. Is there any way you can afford the endoscope and biopsy before the gf diet (if you can't get it done through your GP)? I met a bloke who had his done through is wife's BUPA.

[Prince_of_Cats in reply to Jacks]

I'm a professional writer; the pay is lousy and private health insurance isn't among the perks.

If the gluten-free diet helps, I'll bring it up with the doctor and use it as a positive sign. Of course, if the diet helps, I might not be too keen on deliberately provoking a reaction just for a prescription.

[Jacks in reply to Prince_of_Cats]

I was on a GF diet for DH and was bullied to do a gluten challenge prior to subsequent endoscopy. Admittedly, my blood tests were all evidence of CD, especially when they became normal on a GF diet. I can't say the gluten challenge was worth it, it made me really sick. I don't have prescription food and it sounds as though that is on it's last legs anyway.

[jdb96]

Hi Prince of Cats,

wow....I know how you feel. I have been through this twice. Once with my daughter at 6 months old and several years later myself.

To cut a long story short (she is now in her 30s) and we both feel good, alive (look young for our age) and not ill when we keep strictly to a GF diet.

Just be ruthless with yourself.

Look the gluten stuff in the eye and tell it goodbye for now as it's probably making you ....less than well....then check everything you eat and discard the products with gluten - coeliac or not you dont need them anyway -they usually make the products more expensive and good food doesnt need that kind of help! Trust the plain unadulterated food you buy and eat without adding all that 'stuff' that contains gluten because honestly (yes I am biased) but we really do not need all that added junk in our food. Our food is good without it and it just costs a lot more and makes stuff taste like it was never meant to taste.

Trust your instincts read some cookery books, (always on the look out for the dreaded 'gluten'. Then black list all that contains gluten and then go for simple easy cooking and be prepared for the shock of your life.....basic food with no food industry additives tastes much better than the 'manufactured items' really yummy. My home baked GF cakes are good!

Good luck...been doing this diet since before the food industry heard about it and tried to get in on 'special gluten free foods'

Good plain food is good - yes change your bread and biscuits but it isnt the end of the world after about 3 weeks that feel good feeling takes over and you dont want gluten any more....when I started they even put gluten in Ribena...imagine that! Yuk!! lol

I am also dairy intolerant which took about 7 days to get out of my system and again its a case of being determined not to give in and to remove it all from your life. I am living proof that there is a trully good food, good taste life after going gluten and dairy free.....good luck and go fer it! jdb96