Hi all, I've been GF for over 3 years now although I haven't been diagnosed with CD but I knew enough to realise it wasn't doing me any good. Unfortunately I still have ongoing symptoms. Went to see GP and referred to Gastro who did the genetic test which shows I'm susceptible to CD as I have the HLA DQ 8 gene. I know this is by no means conclusive.
Anyway, the Gastro has said in his letter that he'll arrange an appointment for me at their Coeliacs Clinic and I was wondering if anyone knows what I should be expecting at the Clinic
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When I first went gluten free, in 2011, I went through a detox period that seriously felt like I had the flu, but the withdrawal was the worst for my body and mind. That all lasted a month or so. It takes time for your body to acclimate itself to a different diet. My improvements were milder than I expected and I was not pleased because I had expected better improvement. It wasn't' until 2016, when I discovered that I also had the Celiac skin disorder Dermatitis Herpetiformis or DH, that I realized that I needed to go completely grain free along with the rest I mentioned and that was when I noticed a steady and drastic improvement. Many pain issues diminished, my IBS, mental state and physical exhaustion all improved. At 72 years of age, I can honestly state that I have better health, more energy and require less sleep that most people 20-25 years younger than me. So, it's definitely working.
Thanks for the reply Catryna. I'm hoping I'm similar to you. I went gluten free 3 years ago. Then I had a bad reaction to either soya milk or chocolate around 2 years ago. Saw a dietitian around 12 months ago who said I needed more fibre and to get some oats down me. I think this was a really big mistake. Anyway for 18 months now I've just been reacting to more and more food and drink. Around 3 months ago the backs of my hands bacame hot, red irritated and with spots which looked like Dermatitis Herpetiformis. So, I'm thinking this can't be, I'm not eating gluten. I have read up quite a lot on the condition as we all do and thought maybe I'm eating something which mimics the gluten and tricks the immune system. So, I kicked the dairy and the oats into touch and the hands started to clear up. They improved quite a lot but have never been quite right so just before I posted I decided to remove the rest of the grains and that's where I am right now. I still react to some things but they're more like allergy/intolerance reactions. So what I'm hoping now is that whatever damage I have down below has given me a leaky gut, which I've been working on repairing it but been unable to because I kept throwing petrol on the fire by continuously eating grains. So, off the grains now, hope to repair the gut and reintroduce some foodstuffs and look forward to my coeliacs clinic, whatever that is.😀
If you are also suffering from DH, which is the skin manifestation of Celiac you are much better off going completely grain free as I did. Other things can exacerbate DH beside gluten or grains. Some are commercial dairy, soy, yeast/molds, and shellfish and iodine. Iodine can be as bad or worse than being glutened. Also, topicals are notorious for including wheat products along with vitamin E sourced from wheat germ. I came across this a number of years ago and it has been extremely helpful.
WHEAT NAMES IN HAIR PRODUCTS
Buying only gluten-free shampoo and other hair care products could save you from several "mystery glutenings" a year ... or more, depending on how sensitive you are to trace gluten.
Unfortunately, hair product manufacturers regard gluten grain ingredients as healthy for your hair, and therefore use them frequently and liberally in shampoo and conditioner. Gluten also appears in hair spray, mousse, and other styling products, since its "glue" properties help hold your hair in place.
There are literally thousands of hair care products on the market today. To help you determine which ones might be safe (and which ones to avoid), I've provided a list of manufacturers that make reliably gluten-free products, plus a list of common ingredients that indicate gluten in shampoo and other products.
Brands That Offer Gluten-Free Hair Products
Fortunately, there's a nice mix of brands that now make gluten-free hair care products, including some budget brands and some more expensive lines.
The following brands of hair care products offer gluten-free shampoo and conditioner:
• Acure. Acure's entire hair care line is gluten-free, including five shampoos and even a dry shampoo (plus the accompanying conditioners). Acure is also sulfate-free, paraben-free, cruelty-free and vegan. If you can't find it locally, it's available online at Amazon.
• Avalon Organics. This all-natural line of hair care products offers one shampoo that's certified gluten-free: its Gluten-Free Cucumber Shampoo. Avalon Organics also offers Gluten-Free Cucumber Conditioner to pair with the shampoo. The hair care line is vegan and cruelty-free. It's readily available online if your stores don't carry it.
• Desert Essence. The company makes six shampoos that are labeled gluten-free: Green Apple and Ginger, Fragrance-Free, Red Raspberry, Lemon Tea Tree, Italian Red Grape, and Coconut. It also makes conditioners to pair with each of those. The products are vegetarian, and Desert Essence doesn't test on animals.
• Dove. Dove, which makes tons of personal care products, is a Unilever brand, which means it will clearly disclose any gluten-containing ingredients. Many of Dove's shampoos and conditioners are gluten-free. They're also reasonably priced and available everywhere.
• Jason. Not everything Jason sells is gluten-free, but the brand's Gluten-Free Daily Shampoo and Gluten-Free Daily Conditioner meet the standard (as do the other seven products in the brand's certified gluten-free line). Look for the bright green labels — the gluten-free line is available on Amazon if your local store doesn't carry it. Jason's products aren't tested on animals.
• Kirkland Signature. This Costco brand includes a Professional Salon Formula Moisture Shampoo, and it's labeled gluten-free and vegan.
• Paul Mitchell. Several of this brand's shampoo and conditioner products are considered gluten-free, including Forever Blonde shampoo (but not conditioner), Spring-Loaded Frizz-Fighting Shampoo and conditioner, and Baby Don't Cry Shampoo. To check a specific Paul Mitchell product, you need to visit the brand's website and look in the "details" section for that product. Paul Mitchell is also cruelty-free.
• Pravana. All of Pravana's Nevo hair care products are labeled gluten-free (the line uses hydrolyzed quinoa and soy protein). They're also vegan. Look for Pravana at hair care salons (including Ulta stores).
• Suave. Like Dove, Suave is a Unilever brand, so any gluten-containing ingredients would be disclosed in the ingredients list ... but most or all are gluten-free. Suave is available everywhere and offers some kid-friendly shampoo/conditioner/body wash combinations.
Ingredients That Mean Gluten In Shampoo and Other Products
If you see one or more of the following terms in the ingredients list, it means the shampoo or other hair care product contains ingredients made from wheat, barley or rye. I've also included ingredients that indicate oats, since many of us need to avoid them, as well.
Vegetable protein (may contain wheat, barley, rye and/or oats)
Wheat germ oil
The absence of any of these ingredient names doesn't necessarily mean the product is gluten-free — there are numerous other chemicals (some with very difficult-to-pronounce names) that can be derived from wheat, barley, rye or oats. Gluten-based ingredients can also hide behind catch-all ingredient names such as "fragrance," and the components of these may be a closely-guarded trade secret.
Choosing A Gluten-Free Shampoo and Conditioner
What if your favorite brand isn't listed above, and you're not sure you can trust the ingredients list? Try calling the manufacturer to ask if it's gluten-free or not. People seem to have mixed luck getting information from personal product manufacturers about gluten ingredients, although this problem is beginning to resolve as awareness of continues to rise.
Quite. They sent me a link via Doctify to do a review, so I obviously marked them down at 1 star I think it was and then commented as required, didn't labour the point though, just more or less said "not for me". Had an email from them a week later asking me to get in touch with them. I think I may just do that seeing I paid £150 for initial consultation and then 4/5 follow ups at £90, doubt they'll offer a refund though.😀
Never heard of a coeliac clinic before, so no idea what happens in one. If it's just a dietician appointment, then remain open-minded as NHS poor across the board for understanding subtle issues of coeliac including gluten free food not being free of gluten. Common theme on here with people struggling and seems that the codex 20ppm does not work for everyone, so you may need to cut out commercial gluten free food. Many ingredients in gluten free foods come from wheat source but don't have to be labelled generally if they are deemed so processed as no gluten remaining, but may still be an issue for you, e.g. maltodextrin, dextrose, glucose, fructose, etc. Also cross contamination at home or in eating out is big issue. Beyond that, coeliac messes up gut biome so you may have too much of the wrong bacteria (look up SIBO) or H-pylori, another kind fo bacteria that is not good for gut. Beyond that any other food intolerances that are common for coeliacs, mainly dairy products. As CATRYNA49 mentions - all grains may be an issue for you, and many with coeliac can not tolerate oats at all. You may go around the houses if you focus only on the gluten aspect of coeliac, as it's a bigger picture sometimes with other balances being thrown out with gut health.
I've been GF for 3 years Ben. Kicked dairy and Oats in mid October 2021 and still having issues so I'm looking at binning the rest of the grains now. The processed foods I eat are not too many these days anyway. The Gluten aspect of the diet I'm convinced is well controlled now, there's something else going on.
A lot of proper experts in coeliac out there stating GF is only one part of the story, and it's a whole gut repair programme that's needed. Unfortunately too many of us learn the long and hard way as to why those GF cornflakes with barley malt extract and Coeliac UK's lovely little logo on them might be causing issues. It's just crazy that so many are left floundering for want of proper advice.
I think that's spot on to be honest. Plus the cows milk protein and the avenin in oats and as Catrina says all the other grains which I'm coming round to think lies at the heart of my problems. So, unfortunately as you say, I reckon I'm left with a damaged gut which I've been trying to repair whilst still feeding the "Fire" if you know what I mean. So it's a grain free regime for me and then go again with the gut repair programme.The Coeliacs Clinic I mentioned is where I'm being sent to. Just wondered if anyone else had any experience. If I turn up and they just tell me not to eat gluten anymore i'll be a tad annoyed.😂
Do let us know what happens there. I'm intrigued now!! We could all probably collectively start our own coeliac clinic with our collective hard won knowledge.
I haven't forgot mate, about the Coeliacs Clinic that is, still waiting for an appointment. I did ring the hospital though and asked what was happening with me. Gastro secretary says I should have been contacted by now although I am on the pathway for a Gastroscopy she reckons. I did ask her about the Clinic which is presided over a dedicated nurse who has plenty of experience in the field. But, as of yet, i'm still waiting.
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