I've been a coeliac for 3 years and I'm having a terrible time over the past months
The toilet sees me more than my family grrrrr.
I've had a colonoscopy and all clear- however I'm on the toilet between 8-10 times a day and I'm so down and depressed. I've spoken to my doctor AGAIN and I've been given co codamal for pain. The most embarrassing episode was in sainsburys supermarket with my husband and we'll if your imagination can go this far. We'll my trousers needed bining. I'm 30 and feel like a 70 year old woman. Can anybody help me with personal independence questions please? Xxxxxx
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Gemz1983
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I'm a little unclear if you're saying that you are already on PIP or would like to try to claim PIP?
However I can tell you that if my family have any benefit issues (I have 2 brothers with disabilities and who claim DLA) we seek advice from a website called Benefits and Work benefitsandwork.co.uk (many other equally good websites are available!). I also found it very good when I made an application for ESA. To get the full benefit of the 'how to claim' guides you do have to subscribe but we have always found it worth the money.
You say you are still getting a lot of GI issues. It's always worth considering that maybe you could have other intolerances besides gluten. I have CD but I also have an intolerance to milk and soya. It took me ages to workout why I was still having GI problems when I was completely gluten-free. Don't underestimate the value of a food diary and don't rule out the obvious!
If you're having issues with depression (which is understandable) also ensure that your B12 and vitamin D levels are well into the healthy range by asking your GP for blood tests. Don't be fobbed off with the "they're a little bit low but don't worry" line, as I was at first. I say all this because you mention are on the toilet so much and it could be affecting the absorption of essential vitamins into your body. A deficiency in the 2 above will make you feel pretty crappy and are thought to be linked to depression. On this I speak from personal experience!
Sorry I used to work with people on benefits, so sometimes forget that not everybody knows the abbreviations.
ESA - Employment Support Allowance. It's what you claim if you are jobless and not well enough to claim Jobseekers Allowance (JSA). Your eligibility is then assessed and those that do not meet the criteria get returned onto JSA. Anyone wanting to claim ESA needs a sick note from their GP for the first 13 weeks or until their assessment – whichever comes first.
DLA – Disability Living Allowance. Many people are still on this benefit. It is not open to new claimants because it is in the process of being replaced by PIP. It's split into two parts similar to PIP - Mobility and Daily Living Skills.
If you do decide that you would be eligible, then whatever you do; do not just tick the boxes and answer the questions on the form. You need to add loads of extra info. The form is badly designed - especially for people who's eligibility maybe borderline (it's almost sneaky - if you fail to give them enough information/evidence they can legitimately refuse your application!). If in doubt get expert advice. I'm not sure but I think citizens advice may be able to give support in many areas of the country.
The evidence i have is prescriptions i.e Listerol for my anxiety and co codemol for pain. plus the gluten free food i eat. What more evidence would you think of more that would support my app? I have a letter from my dietician. But i cant get 1 off my doc as the pip ask for them themselves now.
How you word things on all big DWP forms (such as PIP) is often crucial to the outcome.
It's worth remembering that you get assessed on the help you need, not what you actually currently receive.
You have to put an argument together that details how the various health conditions you have affect you. It's not having the various conditions that count, but how they prevent you from living a normal life - ie how debilitating you find them.
Because of the website I've already mentioned above, I was confident enough to do my own forms. It takes you through each question step-by-step.
I'm not exactly sure how long it took me to put my ESA form together but I think it was about 10 hours! It was because I was a borderline case. The depression was very hard to document and prove because there was very little physical evidence for them to go on (I had declined antidepressants, preferring more natural remedies).
My other recommendation would be to run away anyone who thinks that they can do a PIP form in 30 minutes!
You can go on the DWP website to get the decision makers bible for health claims. Many health conditions are just put into one group because of the lack of medical knowledge and information. It is little known or understood that Coeliac Disease is not bog standard textbook and many suffer differently than others which affects their day to day living. To a decision maker its bog standard, sorry ! Even at Tribunal level you may have a condition that the Medical member is not qualified to comment so again you loose, sorry. (been there many times) One doctors opinion being "all a Coeliac has to do is read labels".
In my experience the depression made it worse and it took me a huge amount of effort mentally to be able to achieve what I needed to.
However in my case it was worth it, because 22 weeks on I have still got ESA payments being made to me. Yay! Being off JSA is really supporting my long-term recovery. My GPs have been really good and supportive in regards to issuing ongoing sicknotes.
It may be worth talking again to your GP. Please don't give up too soon! Look around the Internet for the qualifying criteria for PIP. it would be a shame if you were eligible and didn't claim.
Going back to a health point of view, have you considered that the bacteria in your guts might be out of balance? Too many of the unhealthy microbes could be contribuing to your difficult situation. It's just a thought...
I wonder if it's the rice or something in the Free From ingredients? I often spend too much time on the loo after rice. Experimentation suggests it's not the curry spices, because the same dish served with banana instead of rice is fine. Also I feel much better when I avoid the readymade cereals and stick with porridge. My bowels seem to be happier when I avoid GF bread, too, though I've never suffered with it the way you are. Maybe it's grains generally and nothing to do with dairy, tomatoes etc? Sound like you don't have much option but food diary... Good luck.
Hi Gemz, you sound very much like I felt 18 months ago before I was diagnosed with lactose intolerance. I have been gf for quite a long time, but was still having the horrible bouts of sitting on the loo half the night. For me, cutting out lactose has really helped. I also find that free from foods on the whole with all their additives do not agree with me. Where possible I only eat freshly prepared foods. Good luck
Might I suggest an elimination diet by checking ingredients rather than the GF symbol. Todays bread products have moved away from derivatives to using Hydroxypropylmethylcellulose which I react to differently than derivatives.
JUVELA BRAN FLAKES (aka fibre flakes) - they're incredibly laxative and are designed for coeliacs who end up constipated on a GF diet as are all the high fibre breads and crackers. They are also hard on the gut (literally!).
You might be simply having too much roughage, so eggs might make a better breakfast.
I do not think you will get PIP payments for being just a Coeliac, I had an assessment for PIP which took over two and a half months to get a result. Because I also have a formaldehyde allergy and current ingredients in the GF diet trigger my allergy I can cook a meal and require very little help from another person so get no points on this condition. Even though going outside my home environment causes health issues no points, but gained points for other issues and get low mobility. Hope this helps, Coeliac's will get nothing from the benefit system
I agree it won't help as the "easy" (hah!) answer is that a GF diet fixes it, also your medical evidence (colonoscopy) is against you, therefore you're back to identifying whatever else it is that's causing your symptoms. Playing devil's advocate, an assessor will say: well, going to the loo 8 or 10 times a day isn't a disabling factor, it's only once an hour at most and an employer has to accommodate that. Remember their objective is not to help you but to keep the claims as low as possible
By the way I think the cocodamol is not the greatest help in your situation, (1) does it include any wheat based excipients? and (2) if you have a damaged gut you don't want anything that's potentially going to interfere with your bowel function. You may be in a vicious circle of the treatment causing the symptoms, or at least exacerbating them, same as daily long-term use of some headache remedies has a possible side effect of... headaches. If you can face 3-4 weeks without pain relief and add more fat to your diet, you may find your need reduces somewhat? Just a suggestion.
It's a horrible situation you're in, all the very best of luck with finding out what is causing it.
"answer is that a GF diet fixes that", a belief that Healthcare Professionals also have and is not the case for all Coeliac's and is detrimental to those that the diet does not fix which makes them loose out, which is bad marketing on behalf of coeliac's. I am one of several in that position. Bowel and bladder actions are taken into account for DLA & PIP assessments but does not gain enough points alone to warrant any payment.
I'm not saying it's right, simply that is the reality of the assessment.
Also if ALL you have is CD then a GF diet is the fix; it's those with co-morbidities that have ongoing issues not addressed in the longer term by eliminating gluten, therefore strictly speaking it is correct that it is not CD per se that is causing the issues!
That's bullshit what you are saying pretender if you need a special diet the dwp have to provide the money for it if your not working. if you don't stick up for yourself you don't get the help you require.
Hi Gemz1983, I agree that coeliac need to avoid gluten for their villi to recover and to regain their health. However a small minority are refractory coeliac and they have special needs. As does Pretender with a formaldehyde allergy. We as coeliac also have differing levels of sensitivity, so it comes down to what works for us within the framework of a gf diet.
I also wonder how many other coeliac take codeine based painkillers daily? they usually cause constipation and because they contain an opiate, can cause the 'runs' when someone stops taking them but they are classed as gluten free. So it is best to gradually wean your self off these rather than stop suddenly.
I also agree with the other comment by DG as I am also a great believer in treating our bodies holistically, eg: treat the cause and not the symptom but this is easier said than done.
I think that it could be very beneficial for you to see a nutritionist and discuss an elimination diet as your life is very difficult and like the others I feel for you. Also as one of our new members this year you are in good company so you just ask away.
I wish you all the best,
Jerry.
PS, I do not claim any benefits so I can't help with that one.
Hi, reading through this...I picked up on you going to the loo so often. A while back I went through a terrible time. I really though that I had been very badly gluttened. On closely examining my diet, all was fine, no CC, so i then looked at what was different. I had run out of my prescription bread....well, after a few more weeks of trying stuff and eliminating stuff, in between my long periods in the bathroom, I realised that if I ate anything with psyllium husk in I would have severe stomach cramps and the runs. It took about 3 weeks without it for me to feel well.. Might be worth checking yout bread.
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