talk to me

[nicky-nicky159]

Hello again , Talk to me about GLUTEN FREE ,

who on it ? good or bad ? how do you feel when on it ?

And will it help ???

[SlowDragon Administrator]

Did you get a Medichecks test done? Do you know if you have high antibodies, which means Hashimoto's. If you do then yes, highly likely that gluten free will help (according to Izabella Wentz - The Thyroid Pharmacist, approx 80-90% with Hashimoto's feel better gluten free)

Have you got vitamins tested?

I had absolutely no gut symptoms, but always known I had Hashimoto's, antibodies when diagnosed were so high they were off the scale. Blood test for coeliac 20 years ago, which was negative, repeated last year, still negative and endoscopy ambivalent, but DNA test says unlikely coeliac. Never even got a hint from any medic that gluten intolerance or vitamins were important. Was really ill for 20 plus years.

Since finding this support group, going gluten free gave astonishing difference in under 48hours of stopping, & ongoing improvements. Antibodies steadily fallen in last year.

Also been tackling low vitamins. Now finally able to utilise my Levo & finally recognised by endo that my T3 is low & just started combined T4/T3

Don't expect your GP to be aware at all of gluten & gut connection or the importance of good vitamin levels

[nicky-nicky159 in reply to SlowDragon]

Hi Thanks for your help again , bloods back on Monday , So this weekend will be reading and making notes ready for the phone call with the doctor , So next week will put the bloods on here so will a lot more help understanding this all and a letter to the doctor before phone call

[Saggyuk]

Hey - helped massively! Sleep disorder, blisters/eczema, nutritional deficiencies, IBS, water retention, diabeties, basically everything got better after GF. I also tested negative for coeliacs under blood test and endoscopy. THey have now diagnosed me and my daughter with non coeliac gluten sensitivity after going through four gluten trials with all my other health issues tested before and after but the nhs are normally very unlikely to do this - it was only because of obvious differences in my blood tests and diagnosed conditions that were supposed to be irreversible that my endo helped me push for this as required for my daughter. It was proven to cause systemic inflammation and trigger my immune system in my case. As soon as I have one tiny crumb, I die in bed for a couple of days, swell up like a balloon and get covered in blisters.

Well at the end of the day, you've literally nothing to lose by trying really - it's only eating different things for three months to see so worth a try in my book??

However, it must be 100% gluten free including cross contamination which you can read about on coeliacuk. I found it easier to stick to naturally gluten free foods in it's natural form as possible before I could get my head around labels and stuff - potatoes/rice/quinoa/meat/veggies/fruit/dairy/nuts and seeds.

I would add that I felt worse the first couple of weeks but then fatigue started clearing so stayed with it and everything improved from then - some things took a few weeks, some things took 3 month/six months and a couple of things didn't clear up until a year but I could tell the difference within three weeks

[lucylocks in reply to Saggyuk]

Hi Saggyuk,

I went gone gluten free just over a week ago, so interested in your post.

Both thyroid antibodies are in range but near to top of thee range so decided to give gluten free a try.

The last few days I have felt worse, exhausted, and today my stomach is really bloated and hurts, worse then when I was on gluten.

Also I have come out with itchy spots on my hands.

Do you think they are this is a withdrawal symptoms?

Thank you.

[Saggyuk in reply to lucylocks]

Yes, many people have a withdrawal issues - if you look at coeliac forums/facebook pages, many describe similar issues for a few weeks- I certainly felt worse before getting better. I suppose you could say that if you didn't have a problem with it, you're unlikely to experience any side effects whether eating it or not eating it so kind of indicates you do have issues with gluten. You wouldn't expect such issues from not eating a carrot or a mushroom for a week for example lol.

Also, if you have gluten intolerance, removing it will cause massive changes in your body as things start to pick up and because you have removed gluten for the larger part, you may react to much smaller amounts so ensure no cross contamination issues - don't use your old toaster for example lol. You can read up on this on coeliacuk

I have a friend from school whose health and diagnosis mirrors mine exactly strangely enough - everything the same at the same time lol - I can't persuade her to get past that first week to give gluten free a proper go even though I point out that the fact she's having such bad withdrawal indicates it was having a massive impact on her body in the first place

Going by most reports, it should calm down after 2-3 weeks, longest I've heard is four weeks but not usual - mine was two

[Saggyuk in reply to Saggyuk]

Oh an in regards to your itchy spots on hand - are they little tiny see through blisters? - I had these, called phompholyx which had gotten worse and worse over the years. I had them before GF though and they really got worse in these few weeks - like my body was detoxing all the gluten out of me maybe lol??? They have been biopsied since and proved to be directly caused from gluten affecting my immune system and when I get glutened, they are the first thing to show up which actually is quite helpful lol

[lucylocks in reply to Saggyuk]

Thank you Saggyuk for your replies.

I have had the spots on my hands before but only a few times over the years and only mildly. Some are like little blisters and some seem to be hidden under the skin, itch then when I scratch them they come up. They have come out really bad since stopping the gluten. I have had them on my chin lots of times before though, they come a couple of times a year, last for a couple of months then go.

I am going away tomorrow for a few days break but because I feel rotten I feel like going back on gluten.

[Saggyuk in reply to lucylocks]

Yes that's them exactly - itch like crazy. I had them every now and again like you until a few years ago where they went crazy and covered my feet - I could barely use my hands.

You might feel worse mind you but hope you feel okay for your trip whatever you choose

[Saggyuk in reply to Saggyuk]

I know drinking lots of water can help a little but not sure what else

Oh and maybe eat a little sugar????? - just a theory lol!

Unfortunately, often the things that are the worst for your body often has the worst withdrawal - alcohol/drugs/caffeine. No one gets withdrawal from vegetables lol - this would be handy as maybe then people would eat more of them lol

[Hidden in reply to lucylocks]

coming off gluton is like kicking a drug or alcohol addiction... you will feel really ill for 3 weeks and become really aggressive...

stick it out its so worth the end results

[nicky-nicky159]

ok thanks . I have so much to think about its going to be a long weekend ....

[pandv]

Going GF / Dairy Free and Soy Free has resulted in dramatic improvements for me, in fact at this point it has been nothing short of life-changing. My symptoms have cleared up, energy slumps gone, brain fog gone, memory improved, peripheral neuropathy gone and even better the low moods (I have suffered from for as far as I can remember and hadn't attributed to Thyroid) gone. Found myself just smiling the other day going to work (and I had a crappy day ahead) -- never thought that would happen to me.

Looks like my thyroid issues are as a result of wider auto-immune issues, inflammation etc and probably self inflicted through diet -- shed loads of whole-grains thinking I was being healthy.

Eating lots of fat now (Omega 6/9 Fish, Steak etc) and losing weight without really trying and having more energy to boot. I have a BlueHorizon Thyroid 10 test to take this weekend - expecting it to confirm that my hormones are now more balanced and antibodies are right down. What has been amazing is that this has all happened so quickly e.g. from April. I have tried to re-introduce dairy but felt really crappy so will need to avoid that but that's a small price to pay for feeling so good. What was even more amazing was the doctor actively tried to discourage me from trying GF and dietary changes saying it was American quackery, Well I tell you what -- screw you GP and your crap advice.

Obviously all people's conditions are different so I appreciate what worked for me will not work for all but good luck in your GF endeavours.

Cheers

Paul

[lucylocks in reply to pandv]

Hi Paul,

did you get any withdrawal symptoms?

[pandv in reply to lucylocks]

I had no withdrawal symptoms, started feeling better in a handful of days. Hardest part was actually working out my meals with the family. They put wheat in everything. My Wife has been supportive after seeing the results so she has come along for the ride.

[lucylocks in reply to pandv]

That's great you feel so much better.

[Mauds]

I'm gluten free over two years now. I have Hashimotos and my antibodies were all over the place since going gluten free they've gone way down. I'd recommend it if you have hashis

[lucylocks in reply to Mauds]

Hi Maud,

I was told by G.P. I do not have hashi's as my antibodies are in range, although high in range.

TPO 95.770 range 0 -115 this has stayed the same from last test two years ago.

TPA 32.02 range 0 - 34 this has gone up from 27 two years ago.

[Mauds in reply to lucylocks]

You are at the high end its not easy to give up gluten but it was the best choice I've made I also suffered with colitis and it made a huge difference going gluten free. The best of luck in your journey you've found the best bunch ever to help. Without this site I'd have been lost

[lucylocks in reply to Mauds]

Thank you Mauds.

It is good it has helped your colitis.

Best wishes.

[LynneG in reply to lucylocks]

Thyroid documentary series this year - Expert interviews . Isabella Wentz stated there is no reason for antibodies to thyroid to be higher than 1 !! That a level of 1 is enough for body to create cell death (which is the only reason for having an antibody to your own tissue). I believe her. Where do they get these normal ranges from. Just an average of the population. Not surprising that a mix of the population have too many antibodies. The normal range is usual but it doesn't mean it is normal or healthy.

As with all lab ranges that doctors swear by - we see ourselves - these are way off, and we protest because of symptoms and we are ignored.

Lab ranges are what are often and usually found but are not optimum for health. And different countries have different views as to what should be classed as a normal population range that can be ignored.

[zerendipity]

No regrets after making the change to GF. When I ingest gluten I get a nasty gnawing stomach pain for days and, well, other backside issues.

Just make sure you read the ingredients of GF products before you buy.

There are lots and lots of producs that are GF but unhealthy - full of starches (including processed wheat or wheat starche) and chemicals. I've been ill after eating some products from Semper.

[Gingergirl1948]

Hi, I believe we all suffer adversely with gluten. Some more than others.

If we don't eat bread ( to fill up we were told as kids) then we must eat good food.

Bread is flour and water...we used that as glue when young.

Wish I had this knowledge earlier

Go gluten free...nothing to learn and a lot to gain

🤗

[Gingergirl1948]

Agree Slow dragon - don't expect medics to know much. Mine admitted knowing nothing about iodine or vitamins, what was scary was that I was given laxatives....this was after I told them I juiced 8-10 veg daily and ate veg and fruit all day.

Thank goodness for this site

[julesdawn]

Hi best thing I did was going gluten, soya and dairy free. I have Hashimoto's. I've messed about trying to be gluten free for years, but didn't know about the connection with Hashis. Advice from a nutritionist made me decide to be serious about it. It's 6 moths now and I didn't have any withdrawal symptoms. Like others have said you need to check ingredients on anything you buy. Good luck!