Fed up

I have been diagnosed coeliac for 8 months...the digestive problems are slightly better but overall I have hardly improved...if anything I have got worse. I have less energy than ever and cannot concentrate on anything. I have also developed alcohol intolerance and severe PMS. My blood tests have all come back fine and the doctor says I'm still 'healing'. A private doctor has sent me for tests for candida and leaky gut.

Has anyone else found the gluten free diet hasn't helped?! How long will it take for my gut to heal?

6 Replies

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  • Hi Becky, It can be a slow process before a coeliac begins to feel better so I am sorry that you are going through it. The healing process often takes longer for those of us who have had the disease for a while before being diagnosed. As it is a whole new life style going gluten free can be very overwhelming. The longer that we begin to avoid gluten the more things we seem to find it in. We all tend to learn the guidelines of best practice over a period of time and sometimes it can be painful and unpleasant learning everything. Most people will advise that it can be helpful to begin a food diary and write down everything that passes into your mouth both solids and liquids to track if some days are better than others.

    Alcohol is a funny thing as most things do contain gluten. Beers have malt (barley), wine, sherry and port often have gluten/starch plugs to keep the barrels air-tight. Some drinks use gluten to help clear the drink.

    The gut will take quite a while to fully heal and it varies from person to person as the damage may be small but in the higher levels of the small intestine, in which case the healing may only take a year. If the damage is further down towards the large intestine it may take a while longer as there are more villi in the lower part of the intestine.

    I would say that if you can avoid the following: wheat, wheat starch, maltodextrin (wheat sugar), Codex wheat starch, barley, any food that has malt unless it clearly states that the malt is from molasses only, rye, oats - even pure oats and this will give you a greater chance of healing swiftly. Your energy levels should probably increase as the healing takes place.

    Good luck and I hope that you feel better quite soon.

  • Hi Becky,

    I really feel for you. When we first cut out gluten, alleviating our most acute symptoms can be such a relief and we think it's all going to improvement from that point onwards. But the chronic symptoms such as fatigue often take much longer to heal, because like Lynxcat said the damage to our intestines needs time to heal.

    There are many reasons why gluten intolerance leads to such symptoms as fatigue, PMS and brain fog (all of which I suffered from severely so I know how you feel!). But there are also some things you can do help your body heal. To be honest, it needs your help and without some extra care from you, you likely will not regain your best health.

    Your digestion and ability to absorb nutrients from food has been severely compromised by the damage to your intestines. Give it a break to choosing easy-to-digest, anti-inflammatory, nutrient-rich, healing foods - so many of us switch straight to gluten-free alternatives for bread/pasta but these are placing a similar burden on our exhausted bodies.

    I agree with Lynxcat that keeping a food and drink diary is a good idea. I would say it is essential. It can not only help you pinpoint any links to your symptoms and foods you have eaten, but also makes you very mindful of the foods you are (and are not) eating. It's one of the most powerful tools I use with my clients and I would recommend it to anyone going through your experience.

    Please bear in mind, it is often not enough to eliminate gluten for your body to get back to healthy. You need to heal the damage, and take on that responsibility yourself because there is not a drug that can do it for you.

    Love and veggies,

    Andrea

  • Thanks guys! This is so helpful and reassuring. I will try the food diary.

  • Hi. lime you i had multiple problems. the PMT needs control and management asap. i went to a womens clinic had a mirena coil and low dose patch. it tranaformed my life. stay gluten free and find a way yo balance your hormones. have 4 hourly meals and take a power nap if you can. Thee is no single answer. A coolection of strategies will help.

  • Becky the best advice is others inspirational stories - so read this:

    glutenfreeguerrillas.health...

    FYI - ask your Dr whether you could have endometriosis? The Endometriosis society has recently released research linking Chron's and Colitis to Endo and there have also been links in the past linking it with Coeliac Disease. It's not always gluten that is the cause of all problems.

  • All the above advice sounds good. Just adding my experience: was in exactly the same position as you; the only change I made was cutting out oats (was already on GF oats) and I still didn't have the miracle healing some people get, but I felt much better and am still gradually improving 3 months on. Good luck.

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