Newly Diagnosed - Recovery Time

I am newly diagnosed Celiac. I was wheat free for about 10 years, but after continued GI problems I finally had blood tests and tested positive for Celiac's. I have been gluten free for 2 months. Initially I felt great, I don't need as much sleep, I feel more alert and have fewer headaches. I am still occasionally having recurring GI problems even when I am certain I have not eaten gluten.

My question is did other people go through the same thing? Also I would be interested to hear how long it took people to feel like they were fully 'recovered'?

4 Replies

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  • Hi NewlyGF, I recognise exactly what you're saying. I too had an initial flurry of feeling great, which then was followed by a longer period of fluctuating feeling 'ok-ish' and then not feeling so good at all. Personally I have found cutting out caffeine, eating a lot more fresh and raw food (salads, fruits, vegetables) has made a huge difference. I avoid processed items and free-from items from supermarkets. Any baked goods I have I make myself. I am also very active (run and cycle regularly/daily depending on life schedule!). I am extremely careful as to the amount and type of dairy I eat/drink. It was all just trial and error. Just because these things work for me - and maybe for some others - doesn't necessarily mean it will for you, but it may be worth a try. Perhaps try cutting out or limiting one item and see if you feel any benefit, or if you feel brave try cutting back/out a lot and then slowly reintroduce certain items to see if you get a bad reaction?? I went gf back in December and it's only in the last month or two I have started feel more consistently 'good' and most other symptoms are completely gone or so low-level as to be almost unnoticable... Good luck!! :)

  • Having Type 1 diabetes and being diagnosed with CD just over a year ago I totally agree with Lexy's comments. Good luck and all best wishes - it is hard work but hopefully worth it in the end. I got to a point when I wanted to go back to before CD diagnosis because having had diabetes for 60 I knew how to cope perfectly well before the diagnosis.

  • I was diagnosed because I was very anaemic and after years of wondering what was making me ill I felt a sense of relief after the initial shock of diagnosis passed. I was diagnosed in the middle of October and over Christmas it was very cold and frosty and I was fixing something outside and I suddenly had this warm sensation inside and felt a great sense of well being and I knew that I had responded to my diet.

    After the novelty of feeling better passed I felt quite apprehensive that this was it I had to avoid many things and it's like a grieving period I also felt why me it's not fair. This the psychological side of being diagnosed which all or most coeliac have to deal with in one way or another. So don't give yourself a hard time if you have any emotions like this, it's natural.

    And I hope that you feel good soon.

  • NewlyGF Your experience is very common. The thing to remember is that coeliac disease actually effects every cell in the body from the brain to the skin. So one persons symptoms maybe different to another. As a general rule of thumb it take on average a year for your villi to grow back on a GF diet. However, for some people it can take 3 yrs or longer depending on the damage at diagnosis. Bear in mind that once the villi grow back they then need time to get back to working at their optimum level - again this can take time.

    As our GFG Nutritionist regularly tells me when I moan and groan about my ongoing ailments coeliac disease is inflammation in the body. Removing the gluten just removes the petrol that was fanning the flames of the inflammation.

    The next steps after diagnosis are all about eating the best, freshest foods possible to give your body the best building blocks to repair itself. Combined with boosting your vitamin and mineral levels that have been low due to the damage in the villi and not absorbing them properly e.g. Vitamin D, Iron, Ferritin, calcium. Yet ones that are often forgotten are vitamin and magnesium. Most coeliacs are very low in these and they can cause skin problems to cramps. Magnesium is important to reduce cramps and help process calcium effectively. Sadly most dietitians at hospital just focus on boosting calcium and forget about magnesium.

    "Individuals with chronic malabsorptive problems such as Crohn's disease, gluten sensitive enteropathy, regional enteritis, and intestinal surgery may lose magnesium through diarrhea and fat malabsorption [22]. Individuals with these conditions may need supplemental magnesium."

    see ods.od.nih.gov/factsheets/M...

    Getting enough rest is also an important part of recovery. It's all too easy to forget that coeliac disease is an auto-immune condition and so giving your body the time to rest and recoup is important.

    Small amounts of gluten can often enter a coeliac's strict GF diet - from eating out or from other partners who eat gluten at home. Not all coeliacs will experience stomach cramps or bowel problems due to this. Instead some may experience flares of old conditions they had before diagnosis i.e. recurrent thrush, rosacea, extreme stomach bloating (with no pain), constipation, headaches, croaky voice etc. So it's important to listen to your body for clues and try and learn from them. Some of these old symptoms reoccurring may actually be due to a deficiency vs being glutened e.g. night cramps in legs - is often a sign of low magnesium - which maybe a problem as this often isn't tested for in regular coeliac check ups.

    All in all you're not alone and we just have to keep muddling on with our journey to better health. It takes willpower, patience and determination - yet gradually we all start to feel better.

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