How many of you still feel ill on a GF diet?

I.e. blood tests 0 for gluten anti-bodies but you still experience bone aches, spasms, skin problems, hormonal issues, extreme bloating (no pain), problems digesting certain foods like chickpeas & salads, tiredness?

Have you been back to your Dr for further tests? Have you found ways to improve your health yourself?

14 Replies

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  • Hi Fiona

    I am still feeling unwell and my back is covered in irritating spots as i write this. I have been strictly GF since March 2011. I was so pleased when i found out I had CD and DH as I thought I would start to feel better. My antibody levels were normal the last time they were checked so I assume the diet is working. I was told that I didnt have any deficencies in vitamins,iron etc. depite my stomach lining being moderately to severly damaged. The last two weeks i have not been well and have thought about asking my GP to refer me to a specialist, although I dont know what specialist I would need to see. I have to say I have been very down about it lately as sometimes my symptoms are no better now than before I found out I had cd and was eating bread etc. After reading the post recently I know I am not the only one who is still having issues

  • Hi Fiona ...I have been eating gluten free for more than 5 years. I prepared dinner tonight from scratch. There was no gluten, lactose or grains. I made Chicken Cacciatore..my own recipe (http://foodchallenges.ca/chicken-cacciatore/), baked potatoes with chives and steamed broccoli. I drank water. Here I am, 8 hours later, suffering with stomach pain, gas, bloating, and nausea. There was no possibility of cross contamination and I don't have a virus. I find it very frustrating! There is absolutely nothing wrong with my digestive tract ... it's been checked and re-checked. I am completley healed and healthy. So why do I still suffer?

  • Hi Liana, many people have issues with stomach cramps after eating broccoli I'd check this out:

    livestrong.com/article/3493...

  • Hi Liana, I agree with Jerry below. From my own experience I know broccoli and chickpeas and brussel sprouts all make me bloat like I'm 6 mths pregnant and give me a painful stomach. Many of these veg/ beans ferment in the stomach and can cause excessive gas. Whilst you may not have official 'fodmap' problems - most coeliacs never regain great enzymes in their stomachs like other non coeliacs. So perhaps monitoring what happens in after eating some foods is useful in avoiding triggers?

  • Hey guys you might not want to hear this but I think it's important to consider that the doctor and NHS ideas of normal vitamin levels are not always what we feel best at and are not really optimal - they're quite happy when your levels sit bottom range so perhaps ask for a print out of your results next time and have them checked on here or with a professional nutritionist preferably someone who comes highly recommended -just ask around at local health stores etc. I also don't do great on just gluten free and i have to watch sugar/yeast/dairy.

    The Specific Carborhydrate Diet and The GAPS diet are aimed at people with gut problems as serious as coeliac and crohns disease and are not entirely benefiting from just cutting out gluten. I know how you are all feeling and it's not fun hearing that you may have to watch more foods but you may not have to follow such a strict diet forever. Sometime coffee and other grains can be a trigger for inflammation.

    Hope that helps x

  • Hi Laura I have wondered exactly this, when I rang the immunologist up in January after being on Dapsone for a month, I asked him about my blood tests and he replied yes all fine, then he went on to mumble something about my red blood cells not being quite right, I then asked whether this could be due to the dapsone and he said yes probably. I saw another consultant in June and he said that they didnt need to check the bloods again. I find it quiet strange that although I have never had the severe stomach issues that some have with CD, I was told that my stomach was moderately to severely damaged yet all my bloods have been done and no definiencies at all. I have never asked to see any of the results and only found out that my villi were severlely damaged when I mentioned that as I wasnt feeling any better would it be better to stop GF and the consultant showed me the letter he had received from the gastro dept. thanks for your help

  • Good points Laura.

    Given that coeliacs are often so malnourished it stands to reason that even if we pep our levels up to what is 'low' under NHS guidelines and classed as ok we'll still often need more & we'll use them up a lot quicker than other non coeliacs (just as someone with dehydrated skin will lap up and absorb moisturiser very quickly).

    There are also a number of nutritionists and researchers who think that we could be cross reacting to other inflammatory foods e.g.

    - dairy (casein & lactose)

    - sesame

    - caffeine

    - and of course 'gluten'

    So it's always worth exploring these with good health professionals.

  • As I think I have mentioned before a Swedish study has proven that introducing milk into the guts of coeliacs produced a "coeliac-like reaction". Not enough research in this area currently.

  • Well I'm sorry that you are still feeling unwell Fiona. After diagnosis I felt better really quickly but being a single dad reverted to prescription bread and the occasional bowl of malted cereals which were classed as gf in those days and I became ill again so I think that UK coeliac are allowed to eat to much gluten and wonder how much better coeliac who are struggling with their health would feel if they avoided malted cereals codex wheat and possibly oats.

    And what have you got to lose if you are still not feeling good to avoid these allowed levels of gluten for a couple of months?

    If a UK coeliac went to Australia and told some Australian coeliac that they were on a strict gluten free diet and ate codex wheat, oats and barley, they would not understand why.

    That's my 2p's worth.

  • Hi Jerry thank you for the advice it is much appreciated. I am really pleased that you felt so much better on the GF diet, that is how i expected to feel. I gave up the codex wheat starch bread the first month of receiving my prescriptions, since then I have been eating Glutafin long life bread and rolls. Did you have any issues with this type of bread?

    I have read your other blogs etc and know you make your own bread so I might try this although I dont mind the long life stuff as long as its not causing the issues.

    I have always enjoyed toast, scones ect for breakfast with lots of tea and therefore would miss my GF bread if i stopped eating it, however if I have to then I will do.

    I dont have any of the cereals that CUK say are ok to eat but still contain the malt extract, or the various gravies such as bisto best that they also say are ok.

    I do enjoy the odd glass of wine (red mainly) and have read on here that some wines have small amounts of gluten despite CUK saying that they dont and I then went to the Australian coeliac society website and they agree with the Uk and say wine should be fine.

    I have tried keeping a diary for many months and so far havent figured exactly what causes my issues which tend to be headaches, DH and generally feeling tired and no energy, I also get mild stomach problems as although I have mentioned wine I dont drink it every day and can get the symptoms without drinking it. Maybe one day the penny will drop, if it carries on I will ask to see a specialist and try ascertain why I still feel unwell. Thanks again for the advice you and the other volunteers provide, you obvioulsy give up a lot of time helping others

  • Hi Tomoxon, If your villi has not recovered it's worth investigating whether it's refractory coeliac: cuh.org.uk/resources/pdf/pa...

    As for the Glutafin long life bread if it is a wheat free one then it is codex wheat free and should be fine.

    Some coeliac do not absorb fats well and this then can act like a laxative and I really like those mushroom pates they are organic free of gluten but the palm oil is like a super laxative for me, so what you could do is make a list of the foods that you eat regularly and ask on here whether other coeliac have issues with them.

    Also most people get upset stomachs and head aches sometimes and just because we are coeliac does not mean that it's because of gluten.

    Lastly just because I feel healthy I find support and glean info from other coeliac on GFG so to me it is a two way thing from which I benefit. And I hope you get your diet/health sorted soon.

  • Hi all

    Have been following the g/f diet for nearly 6 months now and have not found it plain sailing. Before being diagnosed did not have bowel trouble or tummy pains now I seem to suffer on a daily basis. Initially the bloating vanished I was thrilled but now it is back with a vengeance.

    I saw the nhs dietitian 2 weeks ago and explained how ropey I was feeling having seen the GP 4 weeks previously. He had advised me to reduce the fibre in my diet which had helped a bit with the spasm pains. The dietitian advised me to cut out resistant starches from my diet which actually involves cutting out a lot of things which are good for you which goes against some of the principles of healthy eating. Also to cut out things like dried pasta, polenta, pasta salads and risotto. These things were helping me make the diet a bit more interesting and I was enjoying experimenting.

    I am so disappointed that I feel like this but some of your comments on things like deficiency of enzymes really make sense the thing is are we doomed to be like this or can these things be corrected. We can never get help with this from the NHS and I don't really understand what to do.

    I find it so complicated to find things to eat that don't make my waist expand from a size 8 to a 16.

    Brassicas, salad and pickles were on my list of things not to eat on a low irritant diet (given by the dietitian).

    Sorry for my rant but I'm struggling at the moment.

    Jan

  • Hi Jan, well poor you, now you say what you have to avoid but you do not say what you do eat so maybe if you expanded on that others on GFG could help. For instance you might be eating breakfast cereals with low levels of malt you might be lactose intolerant as many coeliac are and many coeliac are lactose intolerant before their villi recovers as lactate the enzyme that breaks down lactose is produced at the tips of the villi so if your villi is still recovering.

    I've been diagnosed 18 years and I missed many foods so I decided to make gluten free versions of all the foods that I missed and when people visit me they are really surprised that I am on a restrictive diet. So for me it was looking at what I can eat rather than dwelling on the past. And even tho' I deal with my diet well I wish that I could eat anything.

    I would consider an elimination diet and keeping a food diary to see if you can find out what's what. If you want to have a rant you carry on and get it out of your system. And I hope that you feel well soon.

  • Hi Jan - Jerry's advice is well worth following.

    It sounds as if the dietitian is keen for you to avoid complex starches, sugars etc that are classed as the 'FODMAP' diet. Research in Australia and in Kings college London discovered that doing so helped people with IBS/ IBD issues. You can search FODMAP in this forum (see tags and search) for links where we've discussed this before.

    I like you would be concerned that your dietitian appears to have told you to avoid what we normally class as a healthy diet - often coeliacs need higher levels of fibre than the majority as our diet is often low in traditional wheat based grains etc. So do discuss healthy alternatives with your dietitian.

    In terms of your problems - all stomach pain should be investigated - discuss this with your GP following doing a food dairy to see if there's any pattern with certain foods causing this. As Jerry says do check there is no hidden gluten (malt etc) in your current diet.

    Re bloating I also have this problem. By trial and error I realised I reacted poorly to artificial sweetners that were in my calci-chew tablets so I now have yearly vitamin D injections to boost my levels back to the normal range. Watch out for: Sorbitol, Aspartame. See if there is any pattern in the bloating and these. For example some painkillers also contain these and may be further aggravating your problems.

    Also due to our GF diet it can be easy to have an imbalance of good bacteria in our bowels. So consider eating pro and pre biotics (eg bananas). Don't buy the tacky fruit flavoured ones as they are full of sugars. Instead get some good GF supplements. If the problems continue discuss SIBO with your GP ibs.about.com/od/symptomsof...

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