Continuing Symptons

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I was diagnosed with full blown, severe Celiac Disease 2 months ago. Since I had been quite ill, it was a relief to get answers. So, believe me when iI say iI follow the restrictions (sad about the beer, gluten free isn't the same). However, I'm still having the "bathroom" thing and yesterday had the severe stomach pain that feels like appendicitis, on the wrong side!! I'm a bit confused. Help!!!

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  • Posted

    I am gluten intolerant, not celiac, but for me the horrible gut symptoms were the first to clear, taking about a week or two to disappear. In celiac the damage can become severe, over time, and it takes some years for the intestines to recover from the damage and inflammation. Perhaps this is the cause of your pain - lingering damage that will take time to heal.

    Another possiblilty is that you are not being careful enough. It's an awful thing to have to restrict because gluten is in most prepared foods, many sauces, and if you are a vegetarian or frequently eat vegetarian, your veggie protein sources are cut by about 2/3rds. You need to get into the habit of reading all food labels and ingredient lists carefully, sorry to say. You also need to be very careful when eating out.

    Finally, maybe it isn't related. If you keep getting pain in that area, ask your doc about doing a barium enema to see if there is a growth or diverticulosis there.

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  • Posted

    Sorry to hear you are still getting symptoms. I don't have a diagnosis but it's strongly suspected (due to family history and symptoms) and I'm just about to start a gluten diet for testing (scared).

    What I can offer is...if you're only 2 months into being fully gluten free then it could still be early days in terms of repairing the damage to your body. So unfortunately symtpoms may persist for a while until your body can repair. 

    However, there may also be other factors. As Kristal9 has suggested- you may still be getting some gluten in your diet so this would have to be really looked at. I know it's such a pain but really, the more careful you are, the better. Have you checked any supplements/vitamins you might take? It's so easy to get caught out- I am so careful but got caught out last week with rum- I thought dark rum was fine but this was a spiced rum I had and apparently the flavour can include barely. They don't need to label alcoholic drinks so it's best to avoid if you're not sure. I'm also very suspicious of 'gluten free' foods particualrly things like beer- many actually are still made from gluten containing ingredients but just have low levels (less than 20 parts per million). I personally wouldn't take this chance but it might be worth removing foods like this to see if it helps. Also, are you eating oats? Some coeliacs still react even to gluten free oats as the gluten in them can be quite similar. So you could try cutting out oats for a while (or try gluten free oats first if you haven't tried that).

    The other factor may be other food intollerances. I've been gluten free for 9 months and continued with some digestive problems until I also eliminated dairy. Apparently because the digestive system has been damaged from the gluten, it may also be unable to tollerate dairy. This can just be temporary though, until the body repairs.

    I completely understand that it's very difficult to adjust to a gluten free lifestyle. But my advice is to eat as nutritiously as possible with your gluten free diet and don't fill your body with all the processed gluten free packaged foods. Your body has been poisoned for years and if you eat unprocessed, natural, whole foods, you are giving your body the tools it needs to repair. 

    Good luck!

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    • Posted

      ***sorry I meant the PROTEIN in oats can be similar to the protein in gluten***
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  • Posted

    Katherine it is ok, don't panic! I went back to my doc today, my second visit after being diagnosed. He said it only takes 3 months to recuperate the damage done to small bowel, the things that look like trees in a forest will grow back that quickly!!!! When i think i was born with this disease,genetic, that is such a positive thing! I am now 60 so a long time of not getting all the nutrients my body has needed over those years and i am still standing. If you go onto the Celiac site of your country, eg i go to ceoliac australia [we spell it differently} the info is simple to understand and follow re diet. i am taking vit D,{important for calicium in bones] b12 spray under the tongue [which is necessary for the immune system] supplements. my doc will check me monthly with blood test to make sure these levels are increasing. Once the little "trees" regrow my body can then be back to normal and able to extract the nutrients needed. There is plenty of food out there and most supermarkets stack many gluten free products. You are not alone!
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  • Posted

    I can't really offer much more than the other posters but when I was diagnosed in 1998 I had been ill for a long time and weighed only just over 7 stone. My GP said it could take 6 months or longer to feel completely back to normal . I was actually great and putting on weight after 3 months , but I suppose it varies with everybody depending how much damage was done b/f you had a diagnosis. Good luck.
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  • Posted

    You might find it helpful to join Coeliac UK.  The organisation has a database of gluten-free foods as well as a lot of other information, recipes and so on.  Available also is a smart phone app which allows the user to scan the bar code of a product to find out if it is guten free.  Not having a smart phone, I haven't actually tried this but since it is free to members it is certainly worth a try.

    As others have noted, gluten appears in some very unexpected places so it is very necessary to look at the list of ingredients!

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