Could this be coeliacs

[Louisejr]

I had tests for coeliacs 12 years ago, diagnosis was negative, but was told by consultant I was wheat intolerant. Consequently I cut wheat out of my diet. I had a slight improvement but over last 3 years have also been intolerant to dairy products my doctor told me to cut that out too. During the last 3 months I have a new GP, who sent me for blood tests as i was getting tingling sensations down my arms and although eating a low fat healthy diet i was overrweight. The blood tests revealed my ALT levels in my liver are high, he now thinks it could be coeliacs. However, to have a test for this I have to go back to eating a gluten diet which I cannot bare the thought of as I don't want to spend six weeks living in my bathroom. Should I just continue to cut gluten out or is there any other way to be diagnosed?

[Mia1057]

I am afraid not If you want an actual diagnosis. I had a Dr here in Italy try and persuade me that although I have been coeliac for years diagnosed by biopsy in the UK that to qualify for all the CD benefits here that I should do this too. I have refused as the effects are too awful to contemplate. So good luck whatever you decide.

[Louisejr]

Hi Mia

Thank you for your answer, I had the biopsy 12 years ago, but had already started to cut out wheat (my gps advice) and my new GP thinks that this is possibly why I had negative result. I work full time and I know that if I re-introduce wheat/gluten into my diet it will seriously effect my day to day functioning.

[poing]

I think that going back on gluten is a dubious idea... it won't change anything, you still won't want to eat the stuff afterwards. And you could be non-coeliac gluten sensitive (NCGS), in which case, you will still get a negative biopsy... there is no definitive test for it - other than feeling better when you don't eat wheat/gluten.

The problem is that in spite of eating gluten free, you still have symptoms. So either

a) your diet is not truly gluten free, or

b) there is another problem with your digestion, which should be investigated.

I think blood tests can sometimes be helpful... if they run the coeliac tests and find a positive result, then it's likely that gluten is getting into your diet when it shouldn't be. I think AGA (anti-gliadin antibodies) are sometimes used to check whether people are accidentally eating gluten (I have no personal experience of this one, it's just something I once read).

Anyway, I think that's the approach that I would take if it were me.

[Louisejr in reply to poing]

Hi poing

Thank you for your reply - I agree that going back on gluten is not a good idea and will not change anything apart from upsetting my body.

As I believed I only had an intolerance to wheat, I had not entirely cut out gluten, however the last couple of weeks I have done some research into the less obvious items that contain gluten and re-addressed my diet, and apart from a couple of gliches must say I do feel slightly better and hopefully this will continue to improve.

[Kitty013 in reply to Louisejr]

I did go back on wheat to get a positive result and boy was it positive! My celiac levels were the highest my middle aged Dr has ever seen! My symptoms were voice problems, red throat sore blotches, white tongue coating, Gerd. I'm very glad to know this but my symptoms easier to deal with as they aren't gastrointestinal. Now back to no wheat products...but that was only 1 piece of bread a day! Wow.

[Gfmom]

Hi Louise I am in a similar position, I had a negative blood test but feel loads better now I have cut out gluten. I also have raised lft's but I am hoping the change in diet will bring them down by the time I have my next blood test.

You might be interested in looking at what John Briffa and malcolm kendrick ( Internet bloggers and doctors ) say about low fat diets and weight loss especially John Briffa. I have read his book 'escape the diet trap' he advises cutting out grains and processed food and eating more natural fat, meat, fish veggies etc I think there's plenty of evidence to support this new way of thinking that fat isn't our enemy, it is processed food, carbs and sugar.

Incidentally, I told my doctor that I still suspected I had coeliac disease and asked if my raised lft's could be a sign of this and she said no. Interesting that your doctor thinks they could be.

[Louisejr in reply to Gfmom]

Gfmom

Its encouraging to know that there are others out there like me. I will have a look at the John Briffa and Malcolm Kendrick blog about the low fat diets. I must say I do feel better for cutting out processed foods.

After having the same GP for 30 years (who has now retired) my new GP is a lot younger and seems to be more proactive where intollerances are concerned, so hopefully things will improve now.

[Gfmom in reply to Louisejr]

I hope so, I feel a bit like I've been left to my own devices now but thankfully feel a lot better now that I have cut out gluten. I started by cutting out all grains and immediately felt wonderful bit have started putting in a few gf products and rice. I have to admit I felt better befor on no grains, no processed so that seems to be the way forward for me!

[Louisejr in reply to Gfmom]

I know what you mean about being left to your own devices.

When I shop now I scrutinise all the labels, but I am basically trying to eat as many natural foods as possible, I am pleased that I have found this site as I don't feel quite so unique now.

[Penel]

Hi Louisejr

Good luck with your decision about the gluten challenge. It's a grim choice to have to make.

I would strongly second Gfmom's advice about avoiding low fat food, so much of it is full of sugar, and cutting down on processed food. For several years I have eaten a low carbohydrate but full fat diet, my weight is good as is my BP and cholesterol level.

There is good evidence that eating saturated fats does not give you heart or weight problems, although this idea is still not generally publicised. This is a study from the American Journal of Clinical Nutrition

ajcn.nutrition.org/content/...

If you are interested in finding out more, there is a very informative book by Robert Lustig, an American children's obesity expert, called 'Fat Chance'. He mentions how the liver can be damaged by excess carbohydrates, especially sugar. This is a newspaper article which gives a summary of some of his views. huffingtonpost.com/robert-l...

[Louisejr in reply to Penel]

Hi Penel

Thank you so much for this. I do try to keep my carb intake low, and have recently been reading about the fact that some fats are not all bad. My blood tests did reveal that my Cholesterol levels are low too which was good. I will definately have a look at the articles you recommend - thanks again.

Louise

[haydn74]

I Was diagnosed coeliac in the last 3 months and would not have known if it had not been for a blood test, which then ledon to an endoscopy. Have had osteoporosis for many years,

so as they can be linked, have possibly have had this too. My symptoms were weight loss and tiredness, and feel much better on my gluten free diet. It is a minefield and hard work, but am getting used to it, and even started cooking cakes itc again. Good luck

[Louisejr in reply to haydn74]

Thanks Haydn,

You're right it is a minefield, I am finding that there are a lot of substitute foods out there and will definitely have to experiment with the different flours etc and try some baking.

It's good that you are feeling better now you are gluten free.

[haydn74 in reply to Louisejr]

I don't know what you think of prescription bread, but I find Glutafin fresh white is the nearest to "proper" bread I have tasted. It is good you can get so much from the chemist, as from looking on Glutafin website, as with Juvela, everything is so expensive. Haveyou tried Glutafin mini crackers, they are fab!!!!!!!!!!!!!!

[Louisejr in reply to haydn74]

I will have to try this, I have been using Genius Soft Grain bread, which is okay but it would be nice to try something that is more like'proper' bread. I miss taking fresh sandwiches to work for my lunch, I find the only way I can eat the breads is toasted.

[Gfmom]

Thanks Penel, I'll take a look at those links too x

[Chester31]

Hi Louise, I completely understand your dilemma. My teenage son has suspected Coeliac disease. He has been gluten-free for the last 3 months and this has had a huge impact on his health. His appetite has returned, he no longer spends hours on the loo and he has much more energy. He had a negative blood test but was already gluten-free when this test was done. He has now been told he has to go back on a 'normal' diet before his endoscopy but he doesn't want to. He has exams coming up and just cannot face going back to how he was before. It's so difficult to know what to do for the best.

[Louisejr in reply to Chester31]

Hi Chester

It is difficult but I have spoken to my doctor at length about this and have decided I just cannot face the consequences of eating a gluten diet to be tested. I work in an office and find it very embarrassing having to keep going to the bathroom, and sometimes being in there for ages at a time.

It is all very frustrating - I hope everything works out for your son and his exams go well too.

Louise