Coeliac results

[Dandelions]

I've had the results from Coeliac test back. I don't understand them, but doctor says I don't have coeliacs and no further follow up is needed. I thought I'd just check here to see if that's right?

[Delgor]

You obviously haven't got coeliacs disease but you still could have non-coeliac gluten sensitivity. The only way to really be sure is to cut out all gluten from your diet for maybe a month or more and see if you feel better as many on this forum have definitely seen a big change by doing so.

[Dandelions in reply to Delgor]

Thanks! First, I'll make sure my vitamin levels are optimal and will then look into trying out gluten-free diet.

[humanbean in reply to Dandelions]

If you do have non-coeliac gluten sensitivity your vitamin and minerals absorption may improve after giving up gluten. So I suggest experimenting with giving up gluten soon, rather than waiting for nutrient levels to be optimal because that could take a long time.

[Dandelions in reply to humanbean]

Okay, that's really helpful information to have humanbean . I feel like a petulant child going 'no no! I don't want to.' But yeah.. if it could make me feel better, it's really worth a shot.

I suppose low gluten doesn't have the same effect as gluten-free? Would it?

[humanbean in reply to Dandelions]

Sadly, no, or so I've read. Anyone with gluten intolerance will have inflammation inside the intestines and colon. It can take a long time for it to heal. Apparently just eating a small amount of gluten will fire up the inflammation again.

[Geegee777 in reply to humanbean]

Hi, going strictly gluten free was the first thing i did, which made a huge difference, then eating a processed free food diet was my next step, now eliminating dairy.... It took a while but was well worth the effort..... Good luck with your thyroid journey 🌸🌸🌸🌸

[SlowDragon Administrator]

So now you have had negative coeliac blood test you can go ahead and trial strictly gluten free diet

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common. 

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's test positive for coeliac, but a further 80% find strictly gluten free diet helps or is essential due to gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link) 

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies 

Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

drknews.com/changing-your-d...

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

pubmed.ncbi.nlm.nih.gov/296...

The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported

nuclmed.gr/wp/wp-content/up...

In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned

restartmed.com/hashimotos-g...

Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.

[Dandelions in reply to SlowDragon]

Interesting links. Thanks!

[Fruitandnutcase]

If you are going to go gluten free take a look on this website. If you join you will get their amazing ‘bible’ filled with GF products and ingredients as well as masses of useful information , it really is amazing.

coeliac.org.uk/home/

[Peanut31]

Hi Dandelions

Just to add, I have Hashimoto’s and had a coeliac blood test, this was due to the fact I was having tummy issues.

This came back negative, however, the advice on here was to try a gluten free diet, I did and felt so much better.

That was almost 5 years ago, at first I went mad buying gluten free bread, biscuits, cakes etc, then realised that it wasn’t very healthy, so I now avoid processed foods.

I rarely eat GF bread, but make my own from Almond Flour if I fancy some.

Here is the link. I buy my ingredients off Amazon .

dietdoctor.com/recipes/the-...

Best wishes

Peanut31

[Dandelions in reply to Peanut31]

Thanks peanut! That's really good to know. I have no tummy issues at all, so it feels like a lot to give up gluten. I love bread. But I do think it will be good to trial a gluten-free period at some point.

[Sleepman in reply to Dandelions]

I suspect a GF trial with no tummy issues should be quicker as you are not waiting for your stomach to heel which takes many months ? I do not know if there is a risk of becoming very sensitive to gluten if you go GF and then restart back on gluten ?

+1 for all the GF bakery things being generally rubbish and unhealthy.

I stopped gluten a year before I was diagnosed with underactive thyroid. I had no celiac antibodies but I think I am gluten intolerant as my belly is lots better without gluten.

Celiac final test is an endoscopy and they video and take a sample from stomach to see if the "tenticals" are stunted and attacked by your body. Stomach can take quite a while to heal.

[Peanut31 in reply to Dandelions]

I also suffered brain fog and joint pain too.

[Dandelions in reply to Peanut31]

Oh really? I do too. Noooo! I can't be my beloved bread😱😅

[MMaud]

Dandelions , a few years ago now, my Endo ordered a Coeliac (and more auto-immune conditions) panel than you could shake a stick at. We discussed my diet which was an is low-carb, meaning the glutening up for the test could be inconvenient and uncomfortable.

He agreed I shouldn't gluten up as the test would reflect an unreal lifestyle. My test was inconclusive. Irrespective of that, the Endo strongly recommended going fully gluten-free. His rationale was that his experience (and patients) guided him to believe those with AI conditions tend to do very well on it.

Several weeks later, I felt "better" in that whole area. I hadn't felt bad before, but I just felt better.

Going GF is quite a big learning curve, about more than just bread and pasta, but worth doing. I hadn't eaten bread (or pasta or pizza) for years any way, just my choice, but that pesky gluten hides in unexpected places.

Give it a go. You might like some of the GF products, but if not, giving up bread just felt, to me anyway, like I got all the delicious bits (sandwich fillings), without the stodgy wrappers (bread).

You can still construct finger food without bread, including sarnies with iceberg lettuce as the outers. That is surprisingly good!

Eons ago, before all this thyroid malarkey was in my life, I saw a naturalist/herbalist for help with a viral rheumaticky arthritisy thing. Along with lots of other stuff, she asked me about foods I loved and could find tricky to give up. On my list were oranges and tomatoes (and others).

When it came to things I needed to avoid, there were oranges and tomatoes (and others).

At that point, I needed to avoid acidic foods, but her comments were that sometimes those things we love very much over others are the things not helping up. She likened it to addiction - where the hit is followed by the need for more.

Diet and lifestyle is way more complicated than healthy weight etc.

[Tina51]

Hello D, I suffer with food intolerances and follow hospital guidelines after months of testing a LOWFODMAP DIET and it has worked for me since diagnosed with intolerances.

Most suffering with gluten intolerance also suffer from lots of other food intolerances eg onion garlic mushrooms dairy etc but suffers differ in their problems.

Hospital dietician tested mine and found what I could tolerate, the amounts able to and what I couldn’t tolerate at all. It’s individual to sufferers. I lost bloating, diarrhoea, vomiting, headaches head fog etc. BUT that was me.

I’ve been a diagnosed an under active thyroid patient for at least 25 years and was possibly one before that. I’ve been on GF etc diet for since 2013 , GF processed bread has come a long way since then, if your lucky you could even source fresh uncut loaves, but they are still not easy to find 😔 good luck 🤞

[Wua13262348 in reply to Tina51]

You say a hospital dietician tested your food intolerances and found what you could tolerate , the amounts able to and what you couldn't tolerate at all.

Very interested in this . I wasn't aware the NHS did anything other than putting a patient on an exclusion diet. I had to do this 1995-1997.

I tested food intolerances , privately, in 2017.

Food intolerances can change and you can develop new ones. I would love to test further, but it is very expensive, and so, not possible.

Could you expand on the NHS testing you had done. What exactly did it involve?

[Tina51 in reply to Wua13262348]

Last GP referred me to an NHS gastroenterologist who completed a series of tests to eliminate various conditions as I had bloating, vomiting etc etc. he then concluded that problems were diet related and arranged for me to see an NHS hospital dietician. I was bit miffed as I thought he meant I was eating badly but he confirmed he believed it wasn’t due to overeating or poor diet but intolerances. The dietician was brilliant. The process of elimination of intolerant food and education of the LOWFODMAP diet was enlightening and gave me back my life in as much as I got my figure health back on track.

[Dandelions in reply to Tina51]

I'm glad you found what works for you. Sounds like a helpful process with the dietician. I've heard from other people as well how lowfodmap really did wonders for them.