New - looking for an easy-to-follow plan to start investigating

[GoingthruTreacle]

Hi, I'm female age 43 in UK. I've only just this year come to realisation that I may be sensitive to gluten or wheat. I would appreciate being pointed in direction to the starting line of investigating!

Since a toddler I was an unwell child. Life, especially when younger, was miserable cycles of: Week 1: very high temperature/aching body/flu-like/sore glands/sore throat/mouth ulcers. Week 2: recovering, feeling weak. Week 3: not too bad. Week 4: feel like "the start of something" and over and over. I was told I had M.E. when I was a Teen, but over the years I've dumped that diagnosis as it wasn't helpful.

In more recent years, I've experienced episodes of neurological symptoms but I don't think it's related to the above.

Never had problems with my digestion/gut/tummy, except being more prone to a slow sluggish digestion/constipation.

Never had any noticeable immediate reactions to any food.

Earlier this year, I decided to cut out anything processed from my diet. For about 2-3 months I ate brown rice, loads of vegetables, plain porridge oats, eggs, almond milk, distilled water. I started to feel amazing - very vibrant. When I tried 'normal' food again when staying at my mum's over my birthday- a few days later i gradually started to feel flu-ey and got mouth ulcers.

Now my daughter is back from University, it is harder to stick to a personal eating plan. I eat all sorts of things now. I am a bit clueless on how to really pin down the exact thing to avoid.

I'm kind of just flitting around diet and not really having a plan what I'm doing with it. Just need to be pointed in the right direction please. I'd really appreciate not to receive an overwhelming ton of links and books - just a simple first few steps to start would be amazing - Thank you!!

[Hidden]

Hi, big difference between gluten and wheat sensitive, and having actual coeliac. Coeliac is an automimmune condition that effects mulitiple aspects of health and body.

First port of call, if you suspect coeliac, get tested before you cut out gluten as the test needs damage in the body to work - both the blood test, and the bowel biopsy. The blood test is less accurate than the NHS would admit or be aware of, and false negatives are common, so if you have all the coeliac symptoms but negative blood test, still push for the biopsy.

If all tests show negative for coeliac, you may still have non-coeliac gluten intolerance which can be as impactful, so worth looking that up as well.

Beyond that - there are allergy tests for wheat allergy, so worth having that done. If not allergic you can still be wheat intolerant which doesn't have any actual test, so it's a 'cut it out and see how you go' approach.

Other things that cause issues - dairy products, lectins, fodmaps, etc.

But the first port of call, realistically, if you suspect coeliac, is to get tested for coeliac, and then move forward from that point.

[redmama2]

I had the same issues growing up before discovering I had Coeliac. Constant not feeling well in general and I always get mouth ulcers after eating gluten. I found out a lot of these symptoms were also caused by me being vitamin deficient as undiagnosed/untreated Coeliac can make it hard to absorb vitamins. Seeing a doctor to get tested for it would be a good first step. I’d also recommend taking a multivitamin to see if that helps too. Like Benjamin123 said, keep eating normally before you get the blood test or it could show up a false negative. Then to confirm you’ll probably need a biopsy (required for insurance to accept the diagnosis in the US, not sure how it is there). If you rule out Coeliac your doctor can tell you how best to continue testing for sensitivities/allergies. Good luck!

[Aitjk]

I am not diagnosed as coeliac, but my mother was. By keeping a food diary and results each day I discovered a pattern narrowing it down to bread, flour, any items with gluten . I have now gone strictly gluten free and symptoms have subsided. Be careful with the details in ingredients like malt vinegar in sauces etc. good luck.

[GoingthruTreacle]

Thank you for replies.

Many apologies, I misunderstood group, I thought this was for any type of gluten/wheat intolerances/sensitivity. I don't believe I am coeliac I've never had any acute fast reactions to any food and never tummy issues. I did also have negative antibody blood tests a few years ago when I was very unwell when I had a range of tests.

I will add my 2018 results here for info if that helps?

Food Diary - I've done a food diary a number of times but because my body seems to work like a very slow 'creeping up' on me type of thing it is almost impossible to even decide which day I started to feel worse or better and kinda impossible then to pinpoint a day, let alone a meal or which contained the offending item!

I was wondering if there a good approved type of exclusion approach and a specific set of steps onwards to move on from it.. I guess whatever I do will have to be really slow if i don't have noticeable reactions to food.

blood test result

[redmama2 in reply to GoingthruTreacle]

They recommend only cutting out one food/ingredient at a time for 2-3 weeks and note any changes in symptoms. Then add it back in to your diet and see if the symptoms get worse. It’s a slow process but if you cut out multiple things at a time then you won’t know which one is causing the reaction. That’s what my doctor told me to do. I’ve also seen kits advertised where you send in a DNA sample or something and they tell you which foods you might be sensitive to. I’m not sure how/if it works but might be worth a shot so you know where to start at least? Everlywell is the brand I think.

[Hidden in reply to GoingthruTreacle]

I think we all rushed in with the coeliac angle, but the group is for all angles of gluten intolerance, coeliac, non-coeliac, those who aren't sure, etc. Don't let us scare you off with the coeliac focus!

[Researchfan in reply to GoingthruTreacle]

Hi.

Assuming you were eating gluten containing foods when you were tested; the only way to know if gluten or wheat is a problem for you is to trial a week or two without it. Similar to what others have replied to you.

If it’s non-coeliac gluten/wheat sensitivity should see improvement in any symptoms with an elimination diet. Then reintroduce on day one something plain wheat (no additives)(maybe sourdough bread or plain cereal/wheat biscuits etc.). If no effects, day two same or increase to two portions. If no effects day three, same or increase portion. You get the idea.

Elimination and reintroduction diet is the only sure way to know. But keep it simple. Don’t change anything else and don’t introduce any new foods to replace the wheat ones just eat more of what you’re already familiar with to not lose weight if that’s an issue. It takes time and be strict.

If you have no obvious reactions/symptoms after three days of reintroduction. You have two choices. Either you figured wheats not the issue and go back to your normal diet. Or repeat the elimination diet again for a week or two to be certain. Then reintroduce over three days again gradually increasing portions to be certain of your tolerance.

Be warned, it can be a rabbit hole journey trying to figure out any food sensitivities. But reactions can take upto three days is the medical rule - so once you realise this, elimination reintro diets and food diaries can become very informative! (I speak from experience.)

[GoingthruTreacle in reply to Researchfan]

Thank you for reply, yes I can imagine this is going to take a while. I have googled elimination diets but was hoping for recommendations of structured approaches of exactly what to eat from those with real experience. The person below has provided one link which I will check out.

I think I would certainly have to tweak the approach you have mentioned as I don't believe I will have a noticeable reaction after 3 days, my body doesn't react that fast, i think its more of a creep-up accumulative effect, so maybe I'll need to double the length of time for each item.

I'm still a bit vague on exactly what to eliminate - would you also agree with the suggestion below please?

Thank you!

[Researchfan in reply to GoingthruTreacle]

I hear you. Everyone’s diet that’s gluten free is different. Depending on your likes dislikes other food allergies or intolerances.

Given what you’ve said I wonder re histamine intolerance. Histamine sensitivity can affect any organ system and is very much a cumulative reaction. Dr Janice Joneja an authority on this and her work and books have helped me immensely. There’s loads of free info on a low histamine elimination diet on the foods matter.com website. It’s very structured on what to eat and avoid for 2 weeks. It will only take that long to see any improvement if it’s histamine the culprit. Links below.

foodsmatter.com/allergy_int...

histamine-sensitivity.com/

I also recently found this Failsafe diet failsafediet.com/the-rpah-e...

If it’s additives to foods that’s an issue this diet information may help.

Yes agree with Penel re autoimmune protocol. But before removing foods you really should see your GP if you suspect an autoimmune condition for further testing? Your 2018 tests don’t suggest Coeliac but it is a good place to start and maybe get retested before removing gluten as the blood test result is only accurate with gluten significant in the diet, and coeliac can start at any age.

It’s complicated and there is a lot of scientific literature but Gluten sensitivity is on a spectrum - autoimmune coeliac (screen antibodies igA); wheat allergy (IgE antibodies); non-coeliac gluten/wheat sensitivity (doesn’t cause an immune response, tested with elimination diet. An intolerance similar to lactose intolerance. The reintroduction phase finds your tolerance level).

Dairy can be a big culprit with delayed reactions too.

I also found this gluten contamination elimination diet immensely helpful to know about. Alessio Fasano an authority on coeliac disease and gluten intolerance. It’s a very structured strict gluten free diet for a month for people not improving on a normal gluten free diet.

Tables 3 and 4 specific on what to eat and reintroduce.

ncbi.nlm.nih.gov/pmc/articl...

Keep us updated.

[GoingthruTreacle in reply to Researchfan]

Thank you very much for all this extra detail it is most appreciated.

I've had a read of the histimine information, this one doesn't seem to apply to me, I did not associate with any of the listed signs, so think I can safely cross that one off. The additives diet is interesting but I definitely have a strong sense that I would need to be eliminating gluten/wheat and possibly, dairy as part of my trialling. So, I think I will be best to try either the strict diet that you just linked or the autoimmune diet.

To be honest, I am no longer interested in the assistance of doctors and blood tests etc. so I won't worry about getting tested first [by the way, I did have a negative test for Autoimmune conditions]. I haven't gone into my background too much on the group but I'm absolutely 'over-n-done' with doctors/hospitals. I finally came to a realisation after a long, long road - where I realised that the only person that will help me, is me. I made a good start with diet in the early half of this year, but due to lack of knowledge, and then my daughter came back to live with me - diet slipped back to easier ways before I actually discovered anything useful. I now feel more armed with some advice to start again and to take notice of my body, but more scientifically this time.

I will certainly come back and tell if discover anything- I can't guarantee how long that will take!

[Penel]

Perhaps you have answered yourself? If cutting out processed foods helps you feel better, it may be that the additives in processed foods are the problem (or part of the problem). Emulsifiers, gums, cellulose can all cause problems for some people.

Don’t consider processed foods as being ‘normal’! There is more and more information now on how bad they are for our health.

If you think a more structured approach would help, you could have a look at the Autoimmune protocol. The idea is to cut out all the common potential problem foods and then introduce them back in one at a time. It’s not the easiest of diets to follow, but if you feel you health is suffering, it may be worth a try.

healthline.com/nutrition/ai...

[GoingthruTreacle in reply to Penel]

thanks I'm definitely looking for a structured approach. I appreciate the link as I've obviously googled these sorts of diets but was hoping for advice from people with real life experience.

When i say processed food that was an extremely simplistic description, I actually went much further than that - i was literally only consuming: porridge oats with almond milk, eggs, fruit, nuts, potatoes, brown rice, loads of vegetables.

That is because I had absolutely no idea what I was doing but wanted to just cut out anything that wasn't a real food and I also cut out dairy and meat for good measure. But obviously that is not sustainable to only eat those things... and I'm sure they were not even the correct foods to eat anyway!

[penelope2]

There are alot of suggestions here to follow, all good. I have NCGS non coeliac gluten sensitivity which most health professionals dont believe in. If they don't see a positive coeliac test then its a non-starter. Also most hospital labs are not sensitive or sophisticated enough to pick this up.

Symptoms usually would take 2 - 3 days to come out! I went privately and found a nutritional therapist who was very knowledgeable about gluten and what it can do to the body. See BANT.

Tests showed up dairy and rice! It was a cross reactive foods test as i had been gf for several months. Not only these foods identified but ones you should only consume in small amounts.

I saw positive results quickly with none of the stress of an elimination diet. When you have battled for years and your health is very poor it is well worth the expense.

Good luck

[GoingthruTreacle in reply to penelope2]

Thank you very much for this, I'd never heard of either BANT or the cross reactive foods test before so that was very interesting to look up. I'm so glad you found something that worked well.

I’d still been procrastinating about an elimination diet for the past couple weeks! I did actually start one yesterday and I’ve already done some of it wrong - but I think I've now googled-through some of my confusions!

It would be sooo much easier if a nutritionist/ or a blood test could tell me the things to avoid. I am not confident I am going to figure much out myself. Unfortunately, financially getting help/tests is out of the question, I am living a bare existence on extremely limited funds so my elimination diet was even trickier to plan as it has to be only standard, cheaply available produce. However, hopefully I will soon start to feel better again and then begin to find out at least the worse culprit/s. I just need to be really aware when I get to the introducing stage.

Hope you continue to get positive results, and thank you for the info.