Coeliac Diagnosis confirmed (alongside Hashimoto's)

[AtemiM]

Hi All

I posted in the forum a few months ago regarding ongoing symptoms I've had for around 18 months (joint pain, fatigue, neuropathy, IBS symptoms etc). Blood tests showed positive Tissue Transglutaminase IgA marker so I was waiting on a gastro appointment.

Some kindly people here ( Cooper27 and nellie237 amongst others) suggested I also try the Thyroid forum, which I did.

In March I received a diagnosis of Hashimoto's with hypothyroidism (currently working with my GP to find the right dose of levothryroxine)

I had an endoscopy for small bowel biopsy in April and met with the gastro consultant on Saturday who confirmed a diagnosis of coeliac disease.

This wasn't a particular shocker but suspecting it and hearing it confirmed is a little different.

So, any advice for the newly diagnosed CD is appreciated. I have signed up for Coeliac UK membership and downloaded the app. I've had a big clear out at home, bought a new toaster, cleaned out the fridge and all the cupboards etc and have started my gluten free journey.

I guess the first question is how best to approach this. Is it better to go cold turkey (so to speak) or to wean off things slowly? Will there be a point where I can start to reintroduce some things (lower gluten stuff i.e. things with barley malt extract etc) to see if I can tolerate them? If so, is there guidance on timelines etc? Once I've stopped eating gluten all together, am I likely to have a much greater reaction if I accidently eat something with gluten in?

The consultant is referring me to the dietician, but most things I've read suggest that's not likely to be hugely helpful (I already know what to look for on labels etc).

Happy to hear any tips or tricks for a newbie as I try to navigate this new lifestyle.

thanks

Mx

[Regalbirdy]

Hi

I went cold turkey and never looked back. Weaning off gluten is only going to delay the inevitable - and continue to impact your health.

Unfortunately once a Coeliac, always a Coeliac. You’ll need to be zero gluten for the rest of your life.

That could have a psychological impact on you and this is relatively common. In my experience it will probably be sometime in the next 12 months - so seek out counselling if necessary. I went through a rough spot about 6 months in, and went through a grieving process for the foods I couldn’t eat anymore.

Your relationship with food is changing, and this may also mean that your relationships with people will change too because food has such a socially important role. Be very careful when eating out. If the restaurant isn’t extremely clear how they can serve you a GF meal free from cross contamination risks, then go somewhere else. Unfortunately you’ll probably have to learn this one for yourself the hard way!

And yes - you do become a lot more sensitive over time.

Good luck.

[nellie237]

Hi Atemi,

Gosh, this has taken a long time from TTG result to diagnosis, but I guess that's not unusual.

"Is it better to go cold turkey?" Yes, I agree with Regalbirdy.

"Will there be a point where I can start to reintroduce some things?" Unfortunately No, not ever. Even if you do not have gut symptoms, there is evidence of effects on our brains. 😞

"am I likely to have a much greater reaction if I accidently eat something with gluten in?" Yes, I believe so.

For your future reference .........The British Society of Gastroenterology recommend the following annual blood tests for us:-

"Once the disease is stable and the patients manage their diet without any problems, annual follow-ups should be initiated. The physician should check on intact small intestinal absorption

full blood count,

ferritin,

serum folate,

vitamin B12,

calcium,

alkaline phosphatase

associated autoimmune conditions (thyroid-stimulating hormone and thyroid hormone(s),

and serum glucose),

liver disease (aspartate aminotransferase/alanine aminotransferase)

dietary adherence (anti-TG2 or EMA/DGP), "

bsg.org.uk/clinical-resourc...

Also has useful flow-charts etc., re what to do/test for if you don't improve on gf diet. (I don't know why they don't include Vit D here, but it is what it is)

I expect that you've now been discharged by Gastro...........so, your GP should refer you for a bone density scan (DEXA). You can prompt this by filling in a very simple (FRAX - Sheffield University) form, which will give you a 'risk' score, and send it to your GP. Probably another long wait.

sheffield.ac.uk/FRAX/tool.a...

I wish you well, and hope that you start to feel some improvements soonest.😊

[Hidden]

Well done on diagnosis, and commiseration on the diagnosis.

Lots of good threads on here for the newly diagnosed.

One cautionary bit of advice I would give (as others may too) - the foods that are labelled gluten free are allowed to contain some gluten - up to 20mg for every 1kg, or 20ppm. Some are ok with that, some are not, so just be aware. Coeliac UK are very cagey about this, and you might find them useful to begin with, but question some of their dietary advice/safe food advice.

Barley Malt - UK seems to be the only country that thinks this is ok for a gluten free diet, to my knowledge. It also tests funny for the gluten testing, so the test results may be skewed. It's a product that should be binned from any coeliac diet advice/product as there is little logic in why any gluten free product would contain this.

GF Oats - general advice is to avoid for first year, and then tread with caution.

Heal your gut - removing gluten only one part of the story. Rebalance your gut health generally and restore your overall health with any supplements you need, e.g. B12, iron or vitamin D. You may need to ask also about bone health if you have had coeliac for some time.

Eating out - can be a minefield, so research in advance. Gluten Free on menu may not mean gluten free in practice, so go online as see what other coeliacs are recommending in your area by way of restaurants. Even things like coffees in your local cafe can be an issue if you are opting for milk-based ones owing to oat milk and other contaminatied 'alternative' milks (bloody nightmare in my experience). Also eating in other people's homes is a minefield.

Dietician - yes, NHS dieticians can fall well short of the basics, but not harm in going along with the flow with appointment/s and see what's what. The NHS generally is p/poor for coeliac, so you will need to watch like a hawk on any prescriptions your GP or other doctors give you as they are clueless about gluten.

Hidden Gluten - get familiar with all the sources of hidden gluten, e.g. toothpaste, toiletries, ingredients in supplements, etc., and things that might contain gluten but don't have to be labelled e.g. modified starch, starch, maltodextrin, glucose (this is up for debate in my books), etc. You can google these lists.

Kitchen - cleaning things is great, but any wooden implements, e.g. chopping board/wooden spoons, will have to be replaced or you need a separate set for youself. Also - don't forget your oven harbours gluten and not to cook gluten food with non-gluten food unless really well cover with a lid or foil. Dishwasher will not distinguish between GF and non GF plates/cups/cutlery so you may need to opt to sink wash yours instead. Saucepans that are non-stick surfaced or have grooves can harbour gluten also.

The list could go on, but take it at your pace, by each day, and learn as you go. You will make errors along the way, as we all do, but you're on the right track.