Gluten experimentation: Hi all, Hope you're... - Thyroid UK

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Gluten experimentation

junebug7 profile image
50 Replies

Hi all,

Hope you're all keeping in fine health!

In line with suggestions on here I've spent some time going gluten-free. So far I'm 6months in, and although I have had some fatigue crashes I think overall it does seem to be helping (these may have been related to lapses I only picked up on later, e.g. I hadn't realised sausages weren't GF!).

I'm now experimenting with the odd non-GF day to see what happens. Sure enough I have had fatigue crashes (currently day 2 in bed after a takeaway). What has puzzled me is that I didn't have a crash after a non-GF pasta day on holiday in Italy. I was wondering whether for GF-intolerant people do reactions occur for all Gluten types, or just some? And are there other variables I need to consider like amount of Gluten consumed?

Thanks

P.S. GF pasta in Italian restaurants is quite common and amazing!) 😋

50 Replies
Lalatoot profile image
Lalatoot

Junebug gluten free has to be totally. You can't just cut down to a little gluten.

nellie237 profile image
nellie237

"Gluten types, or just some?" Gluten is gluten, whether it's wheat in pasta, or wheat in bread. I don't know whether it is any difference in gluten in barley/rye etc

If you have gluten intolerance you should look at some of the research by coeliac uk and sheffield university on the effects on the brain. If you don't, then just be mindful of symptoms because you can develop coeliac at any age.

Jaydee1507 profile image
Jaydee1507

I'm just wondering what kind of take away you had that made you crash. Other than of course the inclusion of gluten.

For me personally, I don't do well with 'junk' type fast food. Chinese for instance often have all manner of additives to include MSG which has caused me issues in the past.

junebug7 profile image
junebug7

Thanks for the responses, I think maybe folks are missing the point of my question, maybe I didn't word it clearly. What I was wondering is why did I not have a bad response one time when I knew I had eaten gluten?

I figure the possible options must be:

- I'm not gluten intolerant;

- I only have a response to a certain type(s) of Gluten; or

- I hadn't eaten it in sufficient quantities to cause a problem?

Any guidance appreciated 🙂

Jaydee1507 profile image
Jaydee1507 in reply to junebug7

Sometimes intolerances aren't clear cut. It may be that just the once was OK, but adding to that a second time tipped the balance?

With FODMAP foods if you know anything about them, you can say be intolerant to one food group. You might be able to have x amount in a meal of that food group, but if you go over the limit then you get symptoms. Doesn't mean you're not intolerant, just you went over your limit.

I asked about what the take away was as they aren't all equal, gluten or no gluten. Sometimes many additives are added and the foods are highly processed which could definitely set me off. Could be a red herring maybe you got set off by a take away with gluten?

junebug7 profile image
junebug7 in reply to Jaydee1507

Thanks, that's helpful. The two instances were a couple of weeks apart so not directly connected. The takeaway was Chinese, including a non-GF dish which I knew might trigger things. As you say it could be something else entirely, so I'm trying to figure out how I determine for certain whether it is the gluten that is causing the symptoms...

I guess it comes down to whether a gluten crash is caused by any gluten, or whether for some people it might be just a threshold / type of gluten that triggers it?

Jaydee1507 profile image
Jaydee1507 in reply to junebug7

Maybe you need to go back to your old diet for a week with, for instance toast in the morning and a sandwich for lunch kind of thing? Thing is, for me, that would be too many carbs which would whack me out regardless if it were GF or not.

I've done a number of different style diets over a number of years including the extreme of absolutely no processed foods, no dairy, gluten and soy or sugar. I felt at my best then but it actually didn't give me any more energy.

Could it be the carbohydrate content of gluten containing foods that's your issue more than the gluten? It may still be gluten and it is a FODMAP after all which will affect some sensitive people. Maybe only a more intensive reintroduction will tell you the answer. It's a good thing to learn though, how certain foods make you feel and for sure, some of us a sensitive to.

Jeppy profile image
Jeppy in reply to junebug7

Really good points made. Yes all about your own limits. It’s frustrating I know. The only time I actually got weight off I ate So sparingly one toasted gf a day, eggs, oily fish salad and veg basically maybe chicken but I felt quite well continually but went against advice to eat a big range of foods it felt good to feel in control I guess so could plan better

jade_s profile image
jade_s in reply to junebug7

Jaydee makes some very good points!

Maybe it's a carbs/blood sugar thing?

At one point I would get migraines & reactions to wheat & milk products in one country but not in others. I suspect it has to do with additives used during processing.

Jeppy profile image
Jeppy in reply to junebug7

I cant offer guidance but to say about my experience in this up and down thing I basically improved health generally when I cut out or it cut down on gluten , for me it was wheat bread mainly and of course sweet stuff

Then I had keniesiology testing which I found helpful as proof in the pudding thing, it showed I could handle Durham wheat quite well and definately sour dough which I’ve sinced learned from my daughter can be better tolerated than most, I do best days by just eating clean and lots of plant base and I mean lots 😊 veg for 3 not one but that’s me and all through life I was the one that cleared the veg bowl even before I knew I had autoimmune etc

Lots of luck

Jaydee1507 profile image
Jaydee1507 in reply to Jeppy

Definitely clean eating is best for me too. Sourdough doesn't spike blood sugar like even other granary type grains. I would still need to eat that sparingly as my difestive processes are slowed.

It even says on part of my DNA report to 'eat the rainbow'. It's definitely true for some of us!

Jeppy profile image
Jeppy in reply to Jaydee1507

Rainbow veggie yay. Well to mention my gut wasn’t good at all. Iv improved it loads. I used sustain powders from Nutri. L glutamine & lots of Bs. Was under keniologist then. It really helped. Tightens junctions so particles can’t escape and roam I guess causing autoimmune All discomfort gone now just use probiotic live yog etc Thanks for explaining sourdough whatever works for each aye. I get heartburn if Iv overstepped which is a good marker

Jeppy profile image
Jeppy in reply to Jaydee1507

🤔 for me I can get away with odd gluten cheat not black and white like 100% elimination I guess it’s knowing body best you can it’s very disheartening when you can’t put finger on the upset. I’m a spontaneous type so hard lol

Jaydee1507 profile image
Jaydee1507 in reply to Jeppy

I pick the times I'm going to cheat. If I have something important happening I will keep to my healthy eating, low carb, no dairy, sugar etc When I have time, want to chill and the temptation is just too much I will let myself have a treat. Life is just too short!

Jeppy profile image
Jeppy in reply to Jaydee1507

Good willpower there! I can if eg a special doo it took 9 months to drop 1 stone 9 so stringent and clean but at least I got to a better place with more energy alongside! Slimming world didn’t work at all Confusing thr different trains of thought no fat of course on SW but do wonder if my very low fat eating for yrs didn’t serve very well and a part cause of hypo. Who knows

Jaydee1507 profile image
Jaydee1507 in reply to Jeppy

There's nothing wrong at all with healthy fat. It's only trans fat you need to be concerned with. I've done a lot of AIP diet although not for weight loss of course. Intermittent fasting has been about the only way I can shift the pounds although it has messed up my thyroid levels. Sigh.

Jeppy profile image
Jeppy in reply to Jaydee1507

Think very true I think my yo yoing non consistent diet played big part in s l o w metabolism. 🤔 or not

Jaydee1507 profile image
Jaydee1507 in reply to Jeppy

Interestingly I have been looking into my genes via an old Ancestry DNA test ( originally done for heritage reasons). I fed the results into the site I think recommended here and got an amazing report on my functional health. It's given me invaluable pointers as to how I can help myself.

Turns out there are genes that regulate metabolism and mine is slow of course. As well as now knowing my DAOI2 status and MTHFR I know I also have issues with D3 and selenium. I would never have known that.

Anyway, so yo yo dieting hasn't messed your metabolism. Just more likely you're like me a slow metaboliser anyway.

Jeppy profile image
Jeppy in reply to Jaydee1507

Yes you’re right. My mum was same in many ways whereas 2 sisters have slimness. Lol. Middle one syndrome to furthest point hahaThat’s very interesting. Have you got the Di 2 gene🤔. Mine was neg

Yes you wonder what’s best to get weight off. The short fasts great for giving body time to regenerate etc and even cleanse liver a bit but I need metabolism boosting , so should you eat tiny every couple of hours so the body doesn’t go into famine mode ‘ am I being starved again il hold onto this fat! All I know is I’m without sugar bread and yummies but the scales won’t budge. Except after a Chinese treat I put on a pound just like that. How can this be i hadnt eaten all day.

May look into ancestry thanks!!! Been meaning to get round to it.

Jaydee1507 profile image
Jaydee1507 in reply to Jeppy

I have 1 copy of the DAIO2 but also one of the DAOI1 so conversion will be a challenge, but not as much as if I had 2 copies of each. The MTHFR relates to Folate and I'm 55% affected by that so I know I need a good B complex to include methylfolate for the rest of my life. Would explain many health issues I've experienced but of course my Folate has always been in range. 🤦‍♀️

I have to say that intermittent fasting has definitely boosted my metabolism. It has been nothing short of amazing in fact. I'm now swimming (gently!) twice a week. Would never have done that with any other form of calory controlled weight loss. Thing is, it sent my TSH low, FT4 high and FT3 low. I'll deal with that though as without it even a Keto diet won't shift pounds off me. It's sort of done me a favour in making me look into thyroid support and genes anyway.

IF is more doable for me as I couldn't eat tiny portions for the rest of my life. With IF I can have the odd treat and not worry about nice things going past my lips on an occasional basis. It's just way more sustainable for me.

Can highly recommend getting Ancestry of some sort profiled. Fascinating and extremely helpful.

Jeppy profile image
Jeppy in reply to Jaydee1507

That’s great. How long do you fastIv just done 17 hrs a few days a week

Did doc do folate test for you

I take Bs but I would like to know more about needs tbh

Jaydee1507 profile image
Jaydee1507 in reply to Jeppy

Originally I was trying to copy my sister (no thyroid issues) who fasts every other day, literally having nothing but water on fast day. I added max 500 calories on the fast evening as was too much for me and permitted. Then my thyroid bloods showed that had messed them up, so I'm being more conservative with 18:6 or 16:8 depending on how I'm feeling etc.

I've really taken a dip in energy levels since I was fasting longer but also I got reduced levo by 15mcgs. My Folate was at 10, not sure of range as was a hospital test and not easy access to results. It's definitely not optimum!

I'm going to plug away at the B vits (active form), selenium, zinc, magnesium, D3, also split my Levo to AM and PM. Then pray when their levels improve my energy will too. I can feel the Folate helping a bit after just over a week.

Diet wise I feel I'm more or less sorted knowing what suits me and what doesn't. When you have little energy though dieting is a struggle. Maybe you should get your vits tested? I will in a few months time.

Jeppy profile image
Jeppy in reply to Jaydee1507

18.6? 16.8? Is that hours, sorryI do understand low energy I have many days im not as aware as you as cant pinpoint. Some days I just wake up shattered same hours of sleep etc I take same vits. Fish oil if havnt had fish, q10 or ubiquinol, I have anxiety and tummy churning some days, stiffness can be really bad Good news is today I could reach toe nails lol

Jaydee1507 profile image
Jaydee1507 in reply to Jeppy

Oh sorry yes, hours. So 18 hrs fast, 6 hrs eat what you like pretty much but be sensible. No calorie counting anyway. It woul dprobably help tummy churning as more time for the gut to do it's job. I've definitely found that.

Jeppy profile image
Jeppy in reply to Jaydee1507

I took gaba but awoke with vertigo so very offputting However energy improved generally with hrt

Jaydee1507 profile image
Jaydee1507 in reply to Jeppy

Just checking that the B vits you have are the active form?

Jeppy profile image
Jeppy in reply to Jaydee1507

Better you sprays. Do you mean methyl I look out for it thanksI do wonder if fasting you’re telling body you aren’t feeding it so it hangs on to cals🤔. Basically I do 16 or 17 hrs fast regularly and eat no sugar I have small dairy

Jaydee1507 profile image
Jaydee1507 in reply to Jeppy

I think that method means you should fast every day for the 18 hrs then you can eat reasonably what you want. Weight was falling off me when I fasted for longer, it's slowed now but at least not flipping gaining!!

It's a funny idea but it really does work. Some people swear by it which I think I'm probably one of. As your body get's used to it you don't even want to eat that much.

Jeppy profile image
Jeppy in reply to Jaydee1507

True. Tummy shrinks too with less. Pleased you lost it must feel great I feel a bit hopeless as I do put it on just like that. I eat little my friends can’t believe I’m not skinny lol

It was always a battle to keep size 14 in healthier days I wish

Jeppy profile image
Jeppy in reply to Jaydee1507

Today I fasted 20 hrs Maybe I need to stop at 6pm as sometimes it’s 7 or 8pm

Jaydee1507 profile image
Jaydee1507 in reply to Jeppy

That's amazing. Have to do it every day for minimum 16 hrs.

Jeppy profile image
Jeppy in reply to Jaydee1507

But I do. Honestly. This is why I wonder if it’s slowed me down to a snail pace lol

Jeppy profile image
Jeppy in reply to Jeppy

Bit desperate as need it off for operation. Iv considered the thing in chemist says you burn more but really don’t want to fiddle but you do wonder oh well worse at sea

Jeppy profile image
Jeppy in reply to Jaydee1507

Plus I was weak at knees today at 19 hrs then as no food around as we were out, I stopped feeling hungry. Iv had cottage cheese and fruit plus advocado

Jaydee1507 profile image
Jaydee1507 in reply to Jeppy

Oh I love avocados and they're packed with goodness.

I had a veggie tartlet,loads of salad like spinach, watercress, pulses, pepper, spring onions, tomatos. I think you're cheating yourself on food when you are eating. No calorie counting on IF. Fill up. 😛

Jeppy profile image
Jeppy in reply to Jaydee1507

Yep Pad out with rainbow Was tart pastry.

Jaydee1507 profile image
Jaydee1507 in reply to Jeppy

It was a very flimsy filo type pastry. I wouldn't go for a standard pastry case. Try and keep the carbs/gluten low if at all.

DelicateInput profile image
DelicateInput in reply to junebug7

Gluten builds up. A certain amount may be tolerable but then something tips you over the stored limit.

I was trying to cut down/lose weight but one evening I had a ready pasta dish (low calorie/low fat). I had lost a bit of weight, ie gone slim, flatter belly. However, the next day, a dress I had worn a few days earlier and had been loose round my hips actually would not fit and was far too tight. Thus, I won't be eating pasta any time soon. Bread is fine so I suppose it contains a lot less. I tried the dress on again a couple of days afterwards and it was loose again.

humanbean profile image
humanbean

I hadn't realised sausages weren't GF!

Some of them are. Tesco sells some, and so does M&S.

BeePurple profile image
BeePurple in reply to humanbean

Lots of foods that have gluten, or grains that contain gluten, that you wouldn't think. Many condiments (malt vinegar in brown sauce, soy sauce, worcestershire) and practically all processed food have either wheat or barley in them. Frozen chips, roast potatoes and parsnips too, all covered in wheat flour.Aldi sausages are mostly GF. You might find an independent butcher that will do them for you too.

Jeppy profile image
Jeppy in reply to humanbean

Aldi too do a nice one. B&M do a crunchy gf savoury crackerI found Nairn oatcakes worked ok with pate on

I guess any sugars inflames and meddles. For me anyway

I use xylex alternative it’s dear but I know where I’m up to

I can get away with unsweetened pop corn with sweetener

HornM profile image
HornM

Hi! I have a friend who notes she doesn't do well with gluten of the common variety (most of which, depending on the country you're in, is genetically modified). This same friend says she does well (at least in moderation) with Italian 00 wheat flour, which I believe is non-GMO (and possibly organic?). Perhaps you are noting a similar pattern?If you don't have the coeliac gene I dont see why it's not possible that you react to GMO wheat, and perhaps not so much to non-GMO.

Personally I'm completely GF and don't experiment with different types of gluten, but given you are, maybe get some 00 flour (or eat at a restaurant that uses it) and see if the pattern continues?

radd profile image
radd

junebug7,

Gluten comes in hundreds of known forms with research still discovering more. Forty of these are known to be more damaging than the form conventional medicine presently tests for.

When we are ‘gluten’ sensitive we tend to react to all forms of gluten even on various levels. The more severe symptoms are obvious but the less severe will still be causing some sort of inflammatory response, that if allowed to continue would eventually exceed your tolerance threshold developing into the more serious symptoms.

Wheat (gliadin), barley (hordein), rye (secalin) are commonly known to contain some form of storage protein collectively known as ‘gluten’ but in fact all grains contain some form, even corn.

Sausages are gluten free, just look for the ones without the filler cereals. I buy mine from Asda but they are readily available from other supermarkets.

.

Corn contain harmful components associated with gluten sensitivity

glutenfreesociety.org/corn-...

BeePurple profile image
BeePurple

I think intolerances can become worse or better, some people can reintroduce some elements into their diet and feel fewer ill effects. I used to just have crashes but now I bloat to the size of a balloon and spend the day on the toilet if I look at a breadcrumb.

I did read something about people with intolerances tolerating French bread from boulangeries in France. It was something to do with the production of the flour not being as industrial/intensive so it could be more to do with additives for some.

junebug7 profile image
junebug7

Brilliant responses, thanks all!

Interesting comments about the national variations in food processes, I hadn't thought about food from this country being worse/better than the processes in Italy/France. I wonder if we've just become too used to processed food in this country...

Thanks for all your advice, every bit helps to understand this crazy thing a little better.

Bertwills profile image
Bertwills

It’s a phenomenon I’ve noticed too, we used to spend weeks in France & I was able to eat croissants every morning & baguettes during the day with no ill effects at all. In fact my water weight would drop off quickly & bloating stop. I think the long prove that the bakers do changes the gluten somehow. I think also that different strains of yeast may influence my response.In the Uk I’m gluten free.,

junebug7 profile image
junebug7 in reply to Bertwills

That's it, I'm moving to France!

CoeliacMum1 profile image
CoeliacMum1

As my name suggests I’m coeliac and regarding gluten free there’s no half way house for us with this condition.Have you been tested for coeliac disease prior to elimination?

If you feel better without mostly, why have gluten?

Obviously take nutrition into account and replace lost nutrients you’re omitting by going gluten free.

Gluten isn’t just wheat, it’s barley and Rye and all in similar genus… some have problems with oats technically not gluten, but likewise proteins in oats aggravate some people too.

I do have to agree Italy is brilliant for gf/coeliacs.

As for your questions re tolerance, it’s a very individual thing, honestly it’s so weird.

I’m coeliac with no reaction… I’m an asymptomatic coeliac but due to various other health problems I was off the scales with antibodies, when these were checked it took 2.5 yrs to become negative and same time I had found Hypothyroidism (Hashimoto’s) and Pernicious Anemia (PA)

I had barely levels Vit D, B12 , low iron, ferritin and folate luckily calcium ok and no osteoporosis according to my Dexa scan.

junebug7 profile image
junebug7 in reply to CoeliacMum1

Yes I've been tested for coeliac and all clear for that. After hitting the 'right' thyroid levels and feeling somewhat better but not consistently so my Dr suggested trying an elimination diet to see if that helped.

Initially I cut out soy, dairy and gluten, but successfully reintroduced soy and dairy. I have been feeling better and the crash this week seems to confirm a food-related issue, I was confused why the pattern doesn't seem consistent.

One of my friends had similar issues and cut out soy, dairy & gluten after seeing a Dr & nutritionist (we hadn't realised we were both doing it). She was able to reintroduce them all and looked in amazing health as it had 'reset' her gut, but maybe she was one of the lucky ones!

JAmanda profile image
JAmanda

It’s easy to put down your feeling bad to the last thing you ate or took but I think the truth is probably different - as your body might be reacting to something that happened yesterday or over time as vitamin levels go down it something if your thyroid meds were not absorbed for some resin - there’s so many variables, it’s almost impossible to say this is what caused that! Except to try things frequently I guess but very hard!

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