Coeliac - really?

Coeliac is such a strange illness and hits people in so many different ways. You can have no gastrointestinal signs and neurological signs instead. Some people have no symptoms. The one I seem to see with most people though is tiredness. I think if you blood test is positive you probably have coeliac but the endoscopy will confirm it. I haven't heard of a coeliac blood test resulting in any other diagnoses. I had weight gain, no iron change and terrible tiredness and muscle pains. Also constant colds and infections that I could just not recover from. After going gluten free I realised how many symptoms I actually had as like you I'm a busy mom and just thought I was getting older and not getting enough sleep. I'd actually forgotten what good felt like. It took 7 years to diagnose as I didn't have diarrhea, instead I was constipated. I think more people are being diagnosed now with constipation symptoms that they have changed the symptom list. Coeliac is an illness that you can have all long but then it triggers and the symptoms just get worse and worse. I believe that I've always had it but after the birth of my second child my system just crashed and they symptoms become debilitating.

I wish you luck with your tests, the diagnosis is hard to take and you go through a grieving period for the foods you an no longer eat but the benefits of the diet and the dramatic and quick changes you notice in your health are totally worth it.

Can I suggest you get your vit D level checked as deficiency causes tiredness, especially as you are breastfeeding?

Apparently vit D deficiency is common in coeliacs.

I have a big vit D deficiency currently and it certainly makes you fatigued.

Good luck and take care.

Thank you for your replies. The more I think about it, the more it actually makes sense I guess. My second child was born 18 months ago and it just feels like I have never really recovered from giving birth? And it wasn't even a difficult one. Born at home in 5 hours. Within two weeks my weight was below my pre-pregnancy weight and during my pregnancy I didn't gain enough weight. Ever since she was born I keep having vague pains and I am so incredibly tired. But it is what you say Sharon, I have always put that down to being a busy mum and sleep deprivation. But looking at it, she sleeps through now (although only till 5 and we still co-sleep), there hasn't been any improvement whatsoever. Also - I always skipped breakfast or a had a quick slice of toast. To gain weight, I started to have cereal in the morning. And since I started that, it feels like I am even more tired? Could that be the gluten? I am still very new to this obviously.

Bettyboop4 all my vitamins were tested for, I only lack iron and folate. But I don't breastfeed around the clock any more though, maybe 3 times at most... Thanks for your suggestion though

Banana for breki or gluten free toast then see if it helps !

I would say you are definitely Coeliac and that is why they are giving you the biopsy to confirm for sure. Your symptoms are very similar to what I had before diagnosis. Also, it was after I had my third baby - when I am sure my iron levels were depleted more than ever....and a subsequent virus which left me with pain in my bones and joints and much fatigue. My iron levels were really low - my iron store was so bad they had to give me iron injections once a month for 6 months - it took me 18 months to feel much better.

My initial GP blamed my problems on being a busy mum too.....refused me iron tests ...I was two years before we moved house and a different (female) GP took me seriously! I was blood transfusion level by then! She sent me straight to the Gastroenterologist and saved me! I am sure of that.

So glad your GP has tested you sooner rather than later as continued consuming of gluten will only damage your gut more - the biopsy will show your gut to be smooth (all the villi hairs which absorb nutrients are retracted into the lining if you are Coeliac and hence you are not getting the vitamins and minerals you should.) Can have low iron, Vit B, Vit D, Calcium etc.....ask your GP if your blood test clarifies what supplements you need to take, if any....don't take iron without talking to the GP or consultant first - and have had your biopsy.

Do contact the Coeliac Society (there is probably a local group in your area where folk will offer advice and help) but in particular look on line for Coeliac Org UK website where there is lots of information. For a small fee (about £15) you can join and get a copy of The Food Directory from them every year (plus a quarterly Magazine) - you really need this to help you understand how easy it is to eat gluten without realising it - it is in so many products.

The Directory lists safe products in the Supermarkets and other gluten free outlets. You have to stick to the diet permanently as even a crumb can cause the gut to be damaged again - but believe me it gets easier as time goes on. Take care with sauces and gravies on your main meals - check for gluten free varieties in book - and gluten free porridge oats are available in Tesco Free From area...and lots of other GF breakfast cereals, cakes and biscuits. A boiled egg - plenty of green veg like broccoli, turkey meat....are foods that contain iron. You are entitled to bread, flour and pasta on prescription once officially diagnosed. Make sure your children are tested too in due course...and any siblings in your family or other close relatives.....it takes a while but once on the diet your gut will heal and you will start to feel better!Good Luck...and look out for the Gluten Free Chocolate Fudge Cake in Tesco....yummy!

Coeliac disease is an auto-immune condition - not an allergy - gluten in your diet causes your system to fight itself - hence pains in joints and bones...and broken bones don't heal etc....Perhaps your Dad should be checked for Coeliac disease - talk to your GP about this...it would seem sensible.

Bettyboop - I have been told not to go gluten free or change my diet until I have had the biopsy so I will stick the shreddies I think...

Caro - sounds like you had a very long and frustrating journey

My blood was tested for vitamin deficiencies and everything was fine apart from folate and iron. The gp said I wasn't anaemic though. She prescribed me iron and folic acid. During both of my pregnancies I was aneamic though, but I thought that was quite common.

Maybe also worth mentioning, my diet isn't the best. I hardly ever eat vegetables or fruit. Since I was a child i had trouble eating, my parents tried to force me and it became even worse. I know it's a psychological problem and I have tried to tackle it, and it is a little bit better now, but not great. That could also explain the lack of iron.

When I spoke to the gp on the phone she mentioned something about antibodies being 4? And it was close to being 'normal' but because it is positive, I still should have the biopsy. Maybe I should ask for the bloodresults so i can see myself. Is that a good idea?

Also since my daughter was born, I keep having seriously heavy periods which results in me being even more exhausted. It's so hard with two small children (3,5 years and 18 months). I am just wondering what happens if the biopsy is negative. Does that happen? Sorry for the questions and the 'all over the place' post. Just trying to get my head around it.

I will mention it to my parents when I speak to them next. I am sure he would like to find out. I know my sisteralso has some issues. She has IBS and a severe lack of vit d and is now taking supplements, but i don't think they have tested her for coeliac. I am originally from Holland and all my family still lives there, so not sure how pro active they are there.

Thank you so much for the replies, it really helps!

Definitely go for the biopsy - and do keep eating plenty of food with gluten in it until after then.

I was only ever told that I was low in iron - no mention of other vitamin deficiencies, but they did not actually check for that in truth. If you are anaemic then you do bleed more, so it is a downward spiral....all your symptoms are so similar to mine. I also used to feel as if I was fermenting...in my stomach and gut...very difficult to describe. No diarrhea...the opposite...just as you say.

Now I have been on the gluten free diet for many years it is different - if I am accidently given gluten containing food I start to feel sick a couple of hours later and then I vomit violently ...sometimes for two hours or more until I am totally empty....it seems my system reacts quickly to gluten now and it is probably a good thing in a way that it never gets down into my bowel! Just exhausting at the time!

I was later sent for a bone scan and put on Calcium and Vit D for a couple of years as my hips had low density.

Incidentally my iron levels had always hovered around the bottom of normal level for years- c. 10.2 - but I had taken iron tablets quite regularly because years ago I was told I was "probably one of those people who does not absorb iron well" but no further investigations were ever made. I think I lost a lot of blood after my third child and so when finally tested again it was down to 6.0 - which is transfusion level. Hence I was sent straight to see the Gastroenterologist. The GP said she was surprised I could even stand up! But as you know ...with children you have to keep going...no choice! I was diagnosed then within weeks.

Antibodies are what show up in your blood if you have a problem with gluten. However, the number depends on how much gluten you eat ...ie bread, wheat flour containing products, barley or rye. So if you are not eating a lot of these your antibodies may be lower....but you are still coeliac. Try to increase consumption before the biopsy to ensure an accurate result....but to me it does sound very much like you have Coeliac disease. Your blood test is indicative and they would not send you for the biopsy unless they were pretty sure. Because it is a life long condition they want to be absolutely sure before making such a permanent change to your diet. Having said that, it is life changing in so far as you will feel so much better before long if you are a Coeliac and on a totally gluten free diet....it gives you your life back!

Anyone who has undiagnosed Coeliac disease is at an increased risk of bowel cancer.....once diagnosed with CD and on the diet for 5 years the risk is reduced to what is considered normal....that is why it is worth checking thoroughly for it....and your father and members of your family too.

More information is available via the Coeliac Org UK website - so your family can read it for themselves perhaps....

Best Wishes - hope all goes well for you.

PS You should tell the Gastroenterologist when you go for the biopsy that your GP put you on iron tabs!

Anaemia is a classic symptom and taking iron tabs can disguise it. We were told never to take iron tablets because of this.

Hello again,

had my gastroscopy today, was sedated and can't remember a thing! Anyway, I am still not any wiser. Everything looked normal and the result of the biopsy will take 6 weeks. Can it still be coeliac though, after two positive bloodtests but a normal looking gastroscopy? Ta!

I  would think it sounds pretty positive, but I'm no medic!  I also think (check this) that now, at last you can start the rest of your life by following a gluten free diet.

Do start by making a written list of of all the food you CAN eat ... such as meat, fish, cheese, fruit, vegs,  

 

-continuing my previous post (like several other people I find this site sends your messages before you're ready)

- list of food you CAN eat ..... contd, eggs, sugar (meringue) cornflour (some isn't), rice, polenta, some icecream (check) - read labels and add your own favourites.  Its not difficult and you feel so much better in just a few weeks.

the gastro specilaist is not the one who will be interperating your results from your biopsy. What he is saying is it looked normal to him, my gastro specilaist said the same thing to me. The biopsy will be sent to a lab and looked at under a microscope.  It sounds to me like you for sure have celiac, the blood tests dont lie. the biopsy is to confirm it and see how much damage your villa on your intestines are damaged. The villa are what aborbs the nutrients, ie. what your deficient in iron and folate ect.

Good luck, have your father and all your immidant family members take the blood test, if they have symptoms or not, especially your children.  The sooner the dx the sooner you can get well and start reversing all the damage this has done to your body. It affects your whole body.

I have been 100% glluten free for 5 yrs, except for the odd unintentional one, and never looked back, i have my son tested every 2 yrs and my sister had no symptoms and tested positive she is also typ 1 Diabetic. Auto immune diseases tend to occur together.