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Coeliac question

(19 Posts)
violetsunflower Mon 26-Sep-16 11:36:14

I'm sure this is done to death!

Can symptoms be slight and variable? Ie mild constipation to the runs, discomfort in gut normal coloured stools?

I've been tested so many times; I don't think it's the issue and am being checked for gallbladder issues but could it be?

I know it doesn't show up in blood tests too as my mil went through all that but her stools were pale and she lost lots of weight.

I find it hard to put on weight and have hypothyroidism; hence the tests!

I'm not sure symptoms match up.

violetsunflower Mon 26-Sep-16 18:11:24

Bump?

user1471537877 Tue 27-Sep-16 14:24:00

Hi Op

Yes symptoms can be mild and variable but you can still be a severe coeliac

Hypothyroidism is part of a group of related auto immune conditions that includes coeliac disease

if you suffer from one you are highly likely to be diagnosed with another associated condition within 5 years of primary diagnosis

Have the doctors checked your immunology globulin levels?

1 in 9 coeliacs has a deficiency that means they cannot express the antibodies that identify they are a sufferer, this was my case as I had an unrecognised IGg subclass deficiency

Have they tested for vitamin deficiencies ? These can identify an underlying malabsorption, vit d and b12 are common ones found

Gall bladder issues are common in coeliacs and can occur when b12 levels drop leading to increased levels of a protein called homocysteine which can form gal stones, this can be identified in a urine test

violetsunflower Tue 27-Sep-16 15:24:07

Thank you for your reply.

I've had hypothyroidism for 20 years. They've tested (presumably) coeliac antibodies a few times in the last few years, so far no indication.

Vit tests were done a couple of years ago and were good.

I'm waiting outcome of another coeliac test.

I think my question is whether symptoms are not as immediate as i know some coeliacs have. I know also that antibodies can be clear but there can be an intolerance as my mil had this badly a year ago and was told to cut out milk and gluten by a consultant despite no blood markers.

PoshPenny Tue 27-Sep-16 15:36:40

Hypothyroid here. Been down this route myself, I don't have coeliac. The thinking is that hypothyroidism can cause low stomach acid which messes up the digestion. Now I seem to have the thyroid dosing sorted out, my digestions fine thank goodness. I actually went gluten free myself following the negative coeliac result, (there was no way I could carry on as I was) I and I have to say it was brilliant and I felt so much better for it (and back in control of my bowels). I had the endoscopy and biopsies in the end following a period back on gluten, and I definitely don't have it.

Ask for a referral to a gastroenterologist if you think there's a possibility you could be coeliac, otherwise just try GF yourself and see if it helps.

violetsunflower Tue 27-Sep-16 16:08:16

That's interesting to hear posh.

I personally don't think I do after hearing about my mils issues. And I may consider trying a decent full gluten free diet if things come back clear.

I was always constipated until I got thyroxine right. And have been on too much! This is different, a fat issue, it doesn't get digested, and I've had issues putting on weight. Probably ibs but they're checking for gall stones. I've noticed at times lactose can be an issue if I have too much. Also trying slightly less thyroxine. Though stools vary so I think I'm on the right level (sometimes feel 'normal').

But they keep testing me so I am really beginning to wonder!

violetsunflower Tue 27-Sep-16 16:09:03

As in I find it hard to put on weight. They're checking blood sugars too.

popthisoneout Tue 27-Sep-16 20:52:28

My poo had always been normal with coeliac disease. The only digestive symptom I had were chronic reflux for 10 years, then really bad wind for about a year before diagnosis which I thought was from eating too many onions!

My bloods have always been negative but I had a positive biopsy. Was a complete shock.

I also can have trouble with lactose on and off which is common with CD. It was under weight for years, especially in childhood/20's but that's realised now unfortunately!

violetsunflower Wed 28-Sep-16 06:12:45

How odd pop it's onions I'm suspicious of too!
Don't think reflux but wind is increasing.
Thanks for commenting, makes me think it's worth checking out.

violetsunflower Wed 28-Sep-16 06:13:15

I think ive statecraft going trouble wit lactose on and off too.

MoominKitten Wed 28-Sep-16 06:49:55

Lots of people have a false negative test for coeliacs.

As you mention gluten, lactose and onions, have you looked into the low FODMAPs diet for IBS. Wheat, dairy and onions are all major formal offenders.

MoominKitten Wed 28-Sep-16 06:50:07

Fodmap not formal!

violetsunflower Wed 28-Sep-16 07:03:51

Thanks moomin, as I said my mil did but her symptoms were quite different and extreme. I guess I don't know whether to push for a gastro referral to check coeliac or just accept its ibs if results come back clear.

As I said they're checking gall bladder issues too.

But the comments are all helpful. I've never questioned what I eat, except that I try to eat home cooked healthy food as much as possible.

popthisoneout Wed 28-Sep-16 08:47:21

I had never questioned what I ate either. I used to take homemade toasted veg and couscous in for lunch and thought I was putting too many onions in but it was the couscous that was giving me wind.

They suspected gall stones too which is why I had the endo in the first place. I was really devastated when it came back positive for CD but actually you get used to the diet. Amazingly all my funny little health niggles went and I realised I had actually been feeling crappy for ages but it had become normal.

MoominKitten Wed 28-Sep-16 09:58:27

Coeliacs and IBS aren't mutually exclusive. I have both. And a hiatus hernia.

This meant a whole clutch of different symptoms and it was difficult to get to the root of what was going on.

Having coeliacs doesn't mean you don't have IBS and vice versa.

PoshPenny Wed 28-Sep-16 15:19:04

Yes don't settle for IBS diagnosis until you've had gastro referral and the endoscopy done.

violetsunflower Wed 28-Sep-16 20:52:37

Thank you again.

I think I feel fraudish at times as the are days when I feel fine (maybe a slight discomfort or a bit of what I see as normal wind). But then something seems to flare up and it feels enflamed and sore again, with loose stools or s boiling tummy. I feel
Physically very unwell too, aching and fatigued, sometimes almost hung over or just faint. But, It's not permanently bad. Perhaps 50/50 during the week, either clumped together or spread out a bit more.

My mil was in a lot of pain with every meal I think, reflux and loosing weight.

violetsunflower Wed 28-Sep-16 21:17:29

Ok, the fodmap diet is really interesting!

It's referenced in the nhs website and I read through this: http://www.ibsdiets.org/wp-content/uploads/2016/03/IBSDiets-FODMAP-chart.pdf

A few things I've been naturally swerving from are museli (worked out s while ago it stopped agreeing with me) onions and garlic. Oddly I've switched honey and yoghurt on my porridge (made with water) to frozen cherries. (Thought I was being extra decadent! Esp with cocoa!) though elsewhere it says cherries are bad :s

And I'm delighted that dark chocolate is there! When I've tried stopping milk, it was the coconut and hemp I preferred.

I guess the bread is the only really issue and interesting that butter and most cheeses are ok! I'd questioned cream cheese too.

I hate processed meat too. The bad fruit is no great loss to me; I prefer more on the good list. I even prefer the green part of scallions over the white part!

Anyway, enough boring over my diet, it's just nice to think it's possibly a straight forward thing to achieve .

violetsunflower Wed 28-Sep-16 21:28:11

http://www.bbcgoodfood.com/howto/guide/what-low-fodmap-diet

I found this explanation good too, with the different groups of foods.

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