Gluten allergy test negative - should I still go GF?

[thornhollow]

Hi all! I’ve heard Hashimoto’s thyroid antibodies can be increased by gluten antibodies in the body. With this info I went to a GI doctor and got tested for a gluten allergy but it came back negative. I also LOVE bread and pasta and don’t seem to get any digestive trouble from them so this was great news for me. Does this mean I can safely continue on eating gluten, or should I still try GF?

[greygoose]

To be honest, the Coeliac test isn't very reliable, so you could still have Coeliac disease even if the test was negative.

But, that's not really the point. Eating gluten doesn't increase antibodies - and it wouldn't matter much even if they did, because it's not the antibodies that attack the thyroid. But, a lot of Hashi's people are gluten-sensitive, so eating gluten makes them feel bad. And, the only way to find out if going 100% gluten-free will help you, is to try it for at least three months. If you don't feel any better, then go back to eating gluten and see if you feel any worse. Then you'll know if you can continue eating it, or not.

[RoadTrippin in reply to greygoose]

Oh that's interesting Greygoose, I thought the reason we were recommended to go GF was because gluten protein was similar to thyroid protein and could increase our thyroid antibodies, especially those with the "leaky gut" issues. I had both antibodies raised, and they had lowered (one to normal range) after 18 months GF, but I know they can go up and down anyway.

[greygoose in reply to RoadTrippin]

The level of antibodies has no effect on the fact that you have Hashi's. Antibodies fluctuate all the time. Hashi's is permanent. Antibodies are just an indication that you have the disease, not how bad the disease is. And, even if you managed to get rid of them completely, you will still have Hashi's. 20% of Hashi's sufferers never have over-range antibodies, but they still have Hashi's.

[RoadTrippin in reply to greygoose]

I thought it was the antibodies that attack and damage the thyroid, and definition of Hashimoto's is that it's autoimmune thyroiditis, caused by antibodies?

[greygoose in reply to RoadTrippin]

No, it's not the TPO/Tg antibodies that attack and damage the thyroid. It's lymphocytes that infiltrate the thyroid and damage it. Hashi's is autoimmune, yes, but not caused by antibodies.

Have a look at this article about antibodies:

hashimotoshealing.com/under...

[RoadTrippin in reply to greygoose]

Thank you, interesting link

[greygoose in reply to RoadTrippin]

You're welcome.

[SilverAvocado]

GG has said it all, you don't have to have coeliac for gluten to aggravate your Hashimoto's. The only way to tell if gluten is causing you problems is to give it up for a few months.

[HashiFedUp]

One of the reasons why Hashimoto’s patient go GF is because gluten affects the production of DAOs in the gut, which affects the production of thyroid hormones - or at least I think this is right, been a while since I read about it. Look it up. If your hashimoto’s disease is well managed and you feel well with gluten then maybe just see how you go. But if you’re struggling with symptoms maybe cut it out for six weeks. There are plenty of GF products out there. Bread however is the big one as GF bread is generally awful so tip is to always toast it first! I personally like the Genius bagels!

[j9j8j7]

Unfortunately, a negative celiac test doesn't mean you are free and clear to eat gluten. A lot of people have issues with gluten even if they don't have celiac, particularly people with hashi's. And you can have problems with gluten that don't relate to digestive issues. To be honest, the only way you will know for sure if it will help you is to try it for a few months and see if you feel better. If you bake at all, I highly recommend a website called Artofglutenfreebaking. It's got loads of free recipes and the instructions are clear and easy to follow. I definitely prefer several of the bread recipes to anything you can buy in the shops and loads of her cake recipes are indistinguishable from cakes containing gluten- honestly, they are the best cakes ever.

[Cooper27]

5% with thyroid disease have coeliac disease, which I presume is what you were tested for, but 75% benefit from cutting gluten from their diet.

Personally I get no digestive symptoms whatsoever when I eat gluten, but it causes dermatitis on my legs.

The only way to know if you need to avoid gluten is to remove it from your diet and reintroduce it at a later stage. It took 3-6 months for my dermatitis to fully heal, but it was 18 months later I noticed the correlation between the odd bit of gluten and dermatitis breakouts.

[HowNowWhatNow]

Interesting. My son had high TSH for 2 years. He was being monitored all this time b/c he also had (typically) thyroid symptoms but his TSH was constantly in the 6.5-9 position and so docs would not treat / consider for hypo.

He was also ferritin deficient all this time. Like you, he had negative coeliac results.

The hypo symptoms - to give you an idea - included failure to thrive type symptoms of not growing much (after being off the charts for height at birth) and not having energy at all, moulting hair and many others.

On giving up gluten - out of desperation, not on medical advice - a year ago, all of his 20 or more symptoms of ill health (they also included gut symptoms and repeat serious infections) vanished.

And at the same time, so did his high TSH readings.

He now has normal TSH.

So if anyone reading has a child with borderline subclinical TSH, I would definitely try removing gluten while keeping other inputs steady, test in 3 months’ time and see if it makes a different to results. It can’t - if you follow a balanced diet - hurt.

[HowNowWhatNow in reply to HowNowWhatNow]

Replying to myself here - am sure not the protocol, so please forgive.

I rarely comment and have not been checking posts here for a while so please pull me up if I am behind the curve on this:

Gluten and thyroid people - please can you explain this?

Is it also BAFFLING to you that the NHS thyroid outlets do not mention gluten and its significance re: thyroid? Or do they now? I look at coeliac websites and they have information about thyroid disease. But still not vice versa, in the U.K., it seems to me.

Why do you think this is?

I came to believe (given this lacuna in spite of the amount of positive discussion about it here and with the few people I know personally who have it) that the endocrinology profession - because of their parallel understanding of diabetes and diet, which is so different to the understanding of thyroid and other auto-immune influences, and provable in different ways - is taking a principled stance, by being oblivious. I know not what the principle is.

What the NHS has on their website about thyroid conditions and gluten really makes a difference to people’s lives. Or would, if they did.

I have read so many accounts here of remarkable effects from removing gluten from the diet. As I’m sure we all have. For my own part - having Hashi’s myself - I found limiting gluten (which I only did because of what I read here) has extremely beneficial results for alleviating brain fog.

I can’t get my GP to refer me to an endo, after 6 years with Hashi’s and could not during or in anticipation of a pregnancy when my TSH was still not under control either. So gluten is not the hill I will die on - primary and secondary care services and expertise around hypothyroidism is my hill. Yet I know that when the NHS chooses to gather data from patients - rather than bat them away for reporting dietary connections to their chronic disease and so rendering their experience merely anecdotal - this can’t but be taken more seriously.