Gluten Free due to autoimmune disease

[TheSweetestHalleluja]

Hi,
Just wondering if anyone on here has gone gluten free after being diagnosed with an autoimmune disease (not coeliac)?

I'm reading Izabella Wentz book about hashimotos and the link between gluten, dairy and autoimmune antibodies, but wondered if anyone here has tried it and found it improved their symptoms or lowered their antibodies?

Just feel like it is going to be so hard! But obviously if it helps, it'll be worth it.

Yes I have and it got rid of the pain in my hands and feet that hydroxychloroquine didn’t seem to help. Palindromic rheumatoid and sjorgrens is my diagnosis so far along with EDS. I was very reluctant to try it but within a few days the pain has largely gone now. I do wonder if I’m coeliac as since being gluten free I’ve put on weight but haven’t changed the amount I eat.

That's interesting, glad it has helped you with your pain @redpandaalert

I'm thinking of getting some further tests done, including food sensitivities before taking the plunge with it.

Got some other vitamin deficiencies and low ferritin at the moment too so need to try and get those improved and re-check in a few months.

It's all so frustrating and a slow process trying to figure out triggers and avoid stress etc.

Yes. Gluten is highly inflammatory even if you don’t have an allergy to it. As is dairy. Reducing both has helped my many ailments (one of which is an autoimmune disease) I tested negative for coeliac

Did you only reduce rather than completely stop them @Ridingthegravytrain

I'm a bit daunted by it at the moment, especially things which you wouldn't expect to find gluten in, I know the labels have to state allergens now so do-able but it seems to be in everything!

A reduction sounds more do-able maybe, lots to think about.

I have hashimotos and was diagnosed with Coeliac 3 years later. After changing my diet, my thyroid became stabilized even throughout 2 pregnancies. I think being GF reduces inflammation which affects autoimmune conditions.

Cut out completely along with sugar processed foods alcohol caffeine etc under supervision of my gastro after ruling stuff out with endoscopy and colonoscopy. Symptoms improved massively but I was exhausted. Even after the withdrawal period when I no longer craved it all I never got that rush of energy. And I was pretty miserable as I love food and wine! So I have come to a balance where I am strict a lot of the time but will drink and eat cheese and crisps etc at the weekend. And suck up feeling crap. Life is too short to not even live it. If I’d felt amazing and energised I’d have been more committed but this chronic exhaustion is awful. You probably can understand if you have autoimmune disease or other chronic illness.

I have AD and am GF. I haven't noticed any difference symptoms wise but know gluten can trigger flares in some people. Once I am stable on meds I intend to trial adding gluten back in to see if it makes any difference to me.

I have a hashimoto’s, though my thyroid was removed long ago. I also had a skin condition that was being investigated and the doctor had me go gluten free while they were trying to figure it out. The diet is incredibly difficult to follow. What most people count as gluten free is just low-gluten. A true gluten free diet is very hard. It is hidden everywhere and cross-contamination is a big problem. I was so happy when the doctor told me We had ruled out gluten as the issue. It didn’t make me feel any better, I didn’t lose any weight, my skin wasn’t any better, and eating for those months was a constant struggle.

@Ridingthegravytrain

Yes. Gluten is highly inflammatory even if you don’t have an allergy to it. As is dairy. Reducing both has helped my many ailments (one of which is an autoimmune disease) I tested negative for coeliac

Not according to the research.

desireerd.com/does-gluten-cause-inflammation/

foodinsight.org/is-gluten-inflammatory/

I have Grave’s disease and discovered that I am asymptomatic coeliac shortly after. I have been in remission for 8 years which could possibly be due to me being strictly gluten free

Oh I can definitely relate to that @Ridingthegravytrain
The exhaustion is debilitating. I think I'd do the same as you and aim for a balance if I was still suffering with exhaustion even after giving up gluten completely.
I'm low in B12 and Ferritin and need further iron panel tests to figure that out. I'm going to get a full food intolerance test done I think and see if that flags anything up.
Then I guess I'll have to do a trial of gluten/dairy free and see if I see any improvements and then gradually add it back in and see if it triggers anything. Realising its not going to be a quick fix unfortunately.

I’m GF. I have AS and no starch is meant to help. I used to be v low starch and found it did help, but is so so hard to maintain. I’m also not sure how healthy it is to cut out starch (carrots, bananas, beans etc) So now I’m just GF. No idea if it helps as my pain is quite high and controlled by meds. Plus I still have too much sugar and some milk in (lots of cups) of tea. I probably need to cut these out to see.
Really need to overhaul my diet…

I have Thyroid and Sjorgrens syndrome, the latter very debilitating.

I find that the only way I am able to control it and reduce my flares is to be completely gluten, dairy and sugar free.

It works for me at the moment. Reducing the number of flares and making my Sjorgrens manageable.

The minute I stray, sometimes on the gluten front accidentally, I know it.

It really isn’t tough eating that way given the amount of gluten free foods and dairy substitutes now available, although I have to admit that I largely ignore the substitutes. I just eat lots of fruit, veg, non dairy protein and nuts.

I would really recommend a trial of being sugar free as well as Gluten / dairy free. I have read a lot about the role of sugar in autoimmune conditions and am utterly convinced that it was one of the biggest drivers of my Sjorgrens flares.

Really appreciate your reply @Moorscalling and I'm glad that you've found a way to reduce your flares. I've gradually been trying some gluten free substitutes for our regular family meals, like spaghetti bolognaise etc so that I have a plan in place for doing a strict gluten free trial soon. I'm a planner so need to know that I am as prepared as possible beforehand but will definitely be trying it to see if it helps. I've also booked some thorough private blood tests to try to get some more answers hopefully. Onwards and upwards!

Have you had a blood test for coeliac?

I have had a negative blood test for coeliac @LiveintheNow but I do have auto immune thyroid disease.

There is a medically recognised association between coeliac, thyroid disease & type 1 diabetes. I don't think it's fully understood yet but it certainly exists