Coeliac disease - ongoing symptoms

[Superworm]

I'm wondering if anyone can help. I've been diagnosed with coeliac disease for three years now and on a GF diet since then. The trouble is in the last six months I've been suffering symptoms again.

I've obviously gone through my diet to find a culprit. I make most of my food, rarely eat out and I'm ultra careful generally. I stopped eating oats, just in case.

I seem to get two types of symptoms either awful fatigue or terrible wind - really awful. I rarely get them both together.

I'm wondering if there is something else going on. Does anyone have any advice? Feeling ill all the time is really getting me down.

I have no advice but bumping for traffic

Oh I definitely hope I can help as have just been through this but without your insight that it could be food-related so was unwell for a long time even on my strict gluten free diet .
I had a test done (think was called a Cyrex test but can't remember 100% so let me know if needed) which suggested I was reacting in the same way to rice and corn as I do wheat. Sure enough within 2 weeks of cutting these out I feel fully better.

I suggest you start by googling coeliac and rice etc intolerance as it does seem I'm not alone and if you can face it try cutting out other grains to see if you could have a similar problem as I did? Hope it's worth a try and that whatever it is you feel better.
Also be careful nothing you could be eating not realising has gluten. Cutting out oats for the moment sounds a sensible precaution

Did you have an illness before this started, perhaps treated with antibiotics? Either a bacterial illness or antibiotics can upset your gut flora and result in temporay food intolerences. This can take time to correct and sometimes requires food exclusion / gut bacteria suppliments.

The starches in non gluten grains can cause similar reactions to gluten grains in some people. Yeast and sugar are other foods culprits to consider.

Perhaps a detox diet with probiotic suppliments might help. Might be worth consulting a nutritionist. Unfortunately it is difficult to get this done on the NHS as I was advised that even if they did agree to test gut bacteria levels, they didn't have standards to compare them to. Though this may not be the universal response.

Thank you. I'm beginning to think I'm having issues with other grains. I'm so disappointed. What on earth do you eat on a grain free diet...potatoes?

I had a cold a few months ago, a bad one. Not sure if this would do it as it was viral. I will give the probiotics a go though.

loose could you give me more details of the test you had please?

I had bloods taken a few weeks ago which were fine but I'm wondering if I may need another endoscopy. Would be great to avoid that if possible!

Hi I was diagnosed two years ago and apart from the occasional gluten mistake (twice really bad symptoms liquid poos and dreadful pain in bed for couple if days) i've been fine.

I'm really interested in the reaction the rice theory. I would suggest doing a whole30 google it. It was fab and so interesting to see how different foods make you feel.

Also, were you low on iron when you were diagnosed? My ferritin was 6. Even after 6 months GF I was still really really tired. Gastro consultant arranged 4 iron infusions and after that iron went up to 78 and I felt fantastic. Worth checking I think.

Hope you feel better soon.

Yes get your iron checked. Gluten inhibits absorption of minerals anyway - if you are coeliac it wil be worse. My ferritin was 4-it should be over 100-and I was exhausted. Not sure about the farts-all I can suggest is veering towards the Paleo approach - ie don't bother with gluten free breads etc as they are full of crap. Sugar upsets my gut and gives stinky farts!

Of course . I just checked and it was indeed Cyrex which was the name of the lab in the US my blood test was sent to. I think you need to find a naturopath/ someone who can refer you and give you all the forms and it's expensive. I didn't mind the cost as was so incapacitated and it was my last ditch effort but I never dreamed I'd have issues with more grains. I've copied the test I had below just to give you an idea what's covered

Array 4 – Gluten-Associated Cross-Reactive Foods and Foods Sensitivity **

Rye, Barley, Spelt, Polish Wheat Cow’s Milk
Casein (Alpha & Beta) Casomorphin
Milk Butyrophilin Whey Protein Chocolate (Milk) Oats
Yeast Coffee Sesame Buckwheat Sorghum Millet Hemp Amaranth Quinoa Tapioca Teff

You could equally just treat each of these foods with caution and try to work out if you feel better without any.
I'm eating loads of potatoes and sweet potato and I seem fine with gluten free oats so am quite reliant on oatcakes, porridge, beans, lentils... I really feel the best I've felt in 15 years and had been feeling like a very tired old lady in my 30s!

Sorry I must have only part-copied the list but rice and corn obviously were on there

Quinoa IgG + IgA Combined
Tapioca IgG + IgA Combined
Teff IgG + IgA Combined
Soy IgG + IgA Combined
Egg IgG +
Corn IgG + IgA Combined
Rice IgG + IgA Combined
Potato IgG + IgA Combined

That covers what else was tested I think!

Thanks for that loose I will look into it.

I'm feeling pretty miffed at the thought if having yet more food issues tbh. I loathed being a coeliac for a couple of years after diagnosis as I found I so restrictive. It pretty much killed my social life.

I do need to do something though as I am really struggling to function on a regular basis.

My bloods came back fine so I assume my ferritin is ok but will check.

The Whole30 looks like it will be worth a try. Ive been reading a bit more and wondering if it's little its of gluten building up over time that have compromised my gut health. It seems a lot if grains are contaminated.

Since going full time at work in jan, I have been eating more GF foods that before so guess it could be that...

You could have a look at the Paleo diet - known as the caveman diet. It is completely grain-free. There are lots of good blogs on it. It looks like an extremely healthy diet to me, and one that could be adopted quite easily (at home at any rate) by an adult. I would like to get my coeliac DC eating paleo, but that is a bit harder.

I recommend the paleo diet - I had a very good book called Practical Paleo that went into all kinds of food intolerances and also has recipes and recommendations of what you can eat when out. Expensive but very informative. www.amazon.co.uk/dp/1936608758

I've slipped off it and need to start doing it again. I felt so much better - like I just worked properly - when I was on it. No brain fog, no itching, I had a waist...

Aside from that though, I just feel generally a bit rubbish for days when I've accidentally eaten gluten, and itchy as well (dermatitis herpetiformis). I'd second the suggestion of avoiding corn, it contains some kind of corn gluten-equivalent. I thought that white rice was less likely to cause issues than other kinds of grains though :(

Sorry if I've missed this - you mention your bloods were ok but was this just in reference to iron - have you had your TTG checked recently? Might be a good way to check if any gluten is sneaking in anywhere before you look into other grains etc.
Also vit d level - mine was v low when first diagnosed and I needed super strength tablets/injections to get it up.
Probiotics also sound a good idea.
Will check back later but just feeding the baby

Thanks all. My coeliac loofa have always been negative so I'm not sure how useful they would be now but I can ask.

I've started the Whole30 diet but I'm feeling as though I'm not able to get enough calories. I'm still breastfeeding so wondering if it's not a good idea?

I've been dairy/ soy free for two years now as DS is allergic. The Paelo diet may be better for me as it looks like you can eat a bit more.

Bloods not loofa!