Advice For A Newbie

[Hellytheelephant]

Hello Guerillas😊

I am not yet 'officially' coeliac,as I had a negative blood test and I'm too sick to eat gluten to re- do it.

I have been GF-ish for some years,but not strict enough, apparently!My Gp has asked me to do strict gf for the next month to see if things improve,and I am on the waiting list for an ultrasound

I have several other chronic conditions I am living with including chronic pain, but the pain with this is really bad, and my system feels hypersensitive and sore

Can anyone recommend anything forI could eat/drink to soothe and help the soreness?

many thanks.

Helly.

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Hellytheelephant

[Kernowkris]

Hi, I was sick a few weeks ago. All I can suggest is cut out any lactose, even if you weren’t lactose intolerant beforehand. Eat bland, no spicy food. Vegan coconut “yogurt “ feels like it soothes. Only time will allow the villi to heal.

[Hellytheelephant in reply to Kernowkris]

Thank you! I have been wondering about dairy....so that gives me an answer.

[Kernowkris in reply to Hellytheelephant]

I read that the tips of the villi produce lactase and deal with lactose. If gluten has wiped out the tops then it stands to reason that you may have a temporary lactose intolerance.I kept away from it for two weeks and I am now back on limited dairy . I can’t live without real cheese!

[BabsyWabsy in reply to Kernowkris]

Luckily, proper cheese, not the fresh kind, has very limited amounts of lactose because the bacterial culture used to make it, has utilised any lactose.

[Narwhal10]

hi Helly

Welcome here, sorry to read your story, chronic pain is rubbish. Going strictly gluten free means changing kitchen equipment, chopping boards, toasters, saucepans. It may be worth going Paleo for a couple of weeks (minus nuts) - up to you. So, meat, fish vegetables and fruit.

To heal the digestive tract - bone broth and collagen are a recommend.

Best wishes

🐳

[Hellytheelephant in reply to Narwhal10]

Thank you, that's really helpful.

[Researchfan]

Hi 👋 .

I agree with other replies re plain food and lactofree dairy - maybe try strict dairy free for 2 to 4 weeks afterwords to see if any improvement in symptoms, but trying to cut too much out at once can be counterproductive as you need to make sure your nutritional needs are being met, and can distinguish which foods are an issue for you, so strict gluten free and lactofree may be best to begin. Ideally you’d have help from a dietician?

Best to avoid commercial gluten free products initially as they tend to be higher in sugar, pro-inflammatory veg/seed oils and additives, as well as possible trace gluten contamination (label gluten free means it has to be less than 20 parts per million gluten contained, as you probably already know, but some people are still sensitive to this).

Maybe avoid tomatoes, potatoes and peppers (nightshade vegetables). They can be problematic for some people if sensitive to them. Same with high histamine foods such as spinach, tomatoes, spices, aged meats and mature cheeses, tuna, egg whites, yeast risen breads, fermented foods and pickles. Dr Janice Joneja an authority on a low histamine diet. Histamine intolerance is usually worth looking into once all other conditions have been ruled out. It’s a great masquerader.

Have you heard of UK based Dr Sarah Myhill? She has a website and books with lots of information and guidance on how to treat ME/chronic fatigue syndrome and many other health conditions. She advocates a high fat paleo ketogenic diet (low carb, grains free, dairy free way of eating). Her website came to mind when I read your post.

Hope that’s helpful.

[Beautifullybroken38 in reply to Researchfan]

I have noticed since going gf that I am having a hard time eating home canned tomato juice and home canned salsa. It causes terrible bloating and pain and gas. Regular store bought things seem to be ok. Any thoughts?

[Researchfan in reply to Beautifullybroken38]

Hi ginger38.

Wonder if might have something to do with the ripeness of the tomatoes? Or maybe just the fructose content?

Tomatoes contain histamine and the riper the fruit the higher the histamine content generally. Green tomatoes generally low histamine. I can only guess that possibly commercial products are made from not overly ripe tomatoes.

Tomatoes generally high in fructose too (a FODMAP and can definitely be a cause of bloating and gas).

Then there’s the ‘lectins’ in tomato skin and seeds (which should ideally be discarded like Italian cooks do), as antinutrients that can be irritating and cause digestive issues.

Hope they’re helpful thoughts.

[Hellytheelephant]

Thank you so much for all the info. I have been ill for a long while with other things, but I'm starting from scratch with Gluten.

[Hidden]

You might possibly find removing all gluten totally may resolve a lot of the other issues, including the chronic pain. If the pain you specifically refer to here is gut pain, then removal of the gluten will help that resolve. All roads lead to Rome and the removal of gluten may be the solution you need, rather than any other ones. From experience, if I get glutened, nothing resolves the pain until the reaction has settled. As a word of advice - the coeliac blood test is woeful, and returns a lot of false negatives, and the reliance on that is a poor one for GPs/gastros. You may benefit from requesting an endoscopy as well.

[Hellytheelephant]

Thank you for that- I didn't realise before joining this group, that the blood test wasn't 100%! It's a pity my GP doesn't know that. I am on the wait list for ultrasound, and endoscopy won't be offred unless they find something.I have pain throughout my body- neuropathic, muscle and joint.

Does anyone know if caffeine makes things worse when you have a flare-up?