Celiac diagnosis

My rheumatologist had ordered a blood test for celiac one day and it came out positive (92). I just spoke with the GI doctor a couple days ago and she says I have celiac.

After hearing that I was immediately upset and weeping. Yet another problem to add to my collection. I have Lupus and with that comes it's own problems.

But my real question to you guys is how many of you have Lupus and gave celiac? Or other autoimmune diseases?

I just feel so frustrated that not only have I had to give up my life for Lupus but now I have to for celiac. I'm optimistic that it may help control someone if my symptoms but I am not planning for a miracle.

Thanks:)

7 Replies

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  • Oh Boxietrolls I'm so sorry for your bad news, but being Coeliac is really not the end of the world and is actually a positive, know that sounds weird but when you look at what it is and the symptoms, and realise that a firm diagnoses means you can get all kinds of help, it could well be that a lot of your fibro symptoms will ease as well.

    My Brother in laws are both Coeliac, around 25 yrs for one of them and he has really got it sorted , and ten or so for the other, and he really hasn't, won't adjust his lifestyle, won't accept advice from his GP or dietician, and he suffers because of it. I spose what I'm saying is that it IS manageable but it's up to you to do it. There's a Coeliac forum on Health unlocked, why not have a body on there, you will get more specific advice there.

    Good luck with all this my friend, please try not to be too down about it.

    Soft hugs

    Wendy x

  • Don't descend into a pit of despair! You aren't going to give up your life for coeliac disorder!

    These days a coeliac diagnosis is not much of a burden - thanks to Gwyneth Paltrow and co there is a worldwide wave of restaurants and shops now willing to cater for gluten-free food which for anyone who can tolerate food prepared in a kitchen where gluten is used is amazing (some people are very sensitive), Ten years ago, being gluten-free made it SO difficult to eat out. Every supermarket has gluten-free products - although if you have a weight problem beware as they are VERY calorie dense like all processed foods, with a lot of sugar so keep the Free-from aisle for special treats and essentials. Concentrate on what you CAN eat and not what you can't eat - and you will soon realise it isn't a problem. If anything, you will eat more healthily.

    I (and my husband who doesn't need it) can't tell the difference between gluten-free pasta and ordinary when they are cooked correctly (always under rather than over-cook). Gluten-free pizza isn't that bad (though I do live in Italy so it has to be good here!). The gluten-free flours you now get are almost as easy to bake with as ordinary flours. My friend (not coeliac) says they make better sponge cakes than ordinary flour!

    All the symptoms that are due to coeliac will go once your gut has healed - and that could make a major difference to your life.

  • I know what you are feeling been there got the tee shirt! Ive got Hughes, Hashimotos and Sjogrens so had already been advised to give up Gluten anyway. My gut problems were so bad and then got the CD dx so was not surprised. Many of us with this combination of autoimmune conditions seem to have it. I have noticed since giving up Gluten that my antibodies have gone right down to normal. That does not of course mean that you don't have the diseases just that the inflammation levels are going down as gluten is an irritant.

    Just one other thing I'll mention and that is that continued problems with the gut after going GF made me realise that I was not just sensitive to Gluten. I found that I am very sensitive to soy and also lactose. Since cutting them out things have calmed down a lot.

    Eating GF is really easy. Most foods are naturally so. Its really only the prepackaged foods, cakes, breads and sauces etc that you need to watch. Learn to read labels as thats so important and know what derivatives of gluten are, as they lurk in some products. I bake my own bread now, get a bread maker on your christmas list, they are great! I use Mary Berry cake recipes and substitute flour with GF flour and baking powder. If your CCG still gives GF scripts then you can get the flour (which is better) from there. I use Juvela Flours which make things rise really well and also the Bi Alimenta Pasta's which you cant tell the difference from normal pasta. Also join Celiac Uk and you will get a book of everything that you can buy that is GF. So helpful when starting out.

    Good Luck its not so bad!

  • Hey, your not alone. I have connective tissue disease overlap and then a diagnosis of coeliac 2 years ago. Eating gluten free is a total change in diet and everyone will tell you it's easy. It's not always unfortunately. You have to think before you eat all the time. It takes time to find new foods you like. The textures are different and take some getting used to. But over time it does become second nature! I now have colitis as well which seems to flare if I have taken a risk with eating out of eating something iffy.

    Try not to worry. It does seem like the end of the world, I know I thought it was, but once you start to heal with the gluten free diet you will realise it really is worth it. Honestly.

    Good luck and take care.

  • I heard on the radio that 1 in 8 have coeliac disease but only 1 in 100 get diagnosed, so at least you now know.

    It is not that bad; I have got used to not having gluten, in fact I don't eat grains even have to be careful with millet, quinoa and amaranth, which the latter two aren't grains even, but I consider myself lucky that I found out and could do something about it. Lupus is far worse than coeliac in my opinion.

  • I have been diagnose with both SLE and Coeliac disease. I agree with Cann, lupus is far worse then Coeliac because Coeliac can be controlled without taking any medication. Although it may be difficult and frustrating initially to completely avoid gluten, over time it will get easier. Learn to read food labels carefully. I used to google ingredients that were unfamiliar, as sometimes there are 'hidden' sources of gluten (although now I think there are laws requiring allergen labeling). I like to cook, so I look on the web for gluten-free versions of my favourite dishes and desserts. I don't recommend going out and buying a lot of gluten free breads and treats, which there are a lot of in the stores. Most of them are full of sugar/salt/fat, and not very good for you. Stick with fresh veggies, fruit, meat, rice, potatoes - naturally gluten-free foods.

    In the long term, it may help you feel better. With Coeliac, you are not absorbing nutrients properly because of the damage in your small intestine. Once you go gluten-free this damage will eventually heal, and you should start absorbing nutrients properly again.

    In the past the 'gold standard' for a Coeliac diagnosis is the blood test, which you had, and a duodenal biopsy to look at the cells in your small intestine. Did your GI doc mention any further testing? When I was diagnosed I was offered a follow up with an NHS dietician who provided more info about going gluten free. Follow up with your GI doc or GP and they can probably refer you.

  • Hi I have lupus SLE and was diagnosed with being Coeliac two years ago. You have to avoid Gluten completely otherwise you could end up with long term problems when your older. It will all fall into place just takes bit of getting use to. And Gluten free products are very expensive. The most annoying thing about it is when you go out for lunch or a meal. Some places are very limiting. Best of luck there is plenty of info on internet to help.

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