This question is a bit personal, and I will try not to offend any one.

[loobylou123]

My Hubby was diagnosed about nine years ago to the point of him nearly looseing his life to organ failure throe dehydration, he has never regained the weight he once had and finds it impossible to build up muscle,we make every effort to avoid getting ' glutened ' and this question is about bowel habits, he can go from being totally normal, to having loose stools in the same day, to the point where he now has prolapse of his bowl which extremely painful, has anyone had problems with irregularity of going to the loo even tho he sticks to a Gluten Free Diet ?

[Regalbirdy]

Hi,

Has he had his thyroid checked lately? If he's a diagnosed Coeliac, then statistically speaking he has around a 13% chance of having auto-immune thyroid problems as well - which could account for some of the symptoms you speak of.

[loobylou123]

I have a feeling the blood tests that the Doctor requested included that, and they all came back clear

[Regalbirdy in reply to loobylou123]

They will probably have only tested his TSH levels but not his T4 or thyroid auto-immune response. I understand that by only testing TSH, a lot of people are sent away believing they are okay when they're actually not. It might be worth bearing in mind, so you can read up on it - just in case it's not a food intolerance issue.

[Hidden]

my boyfriend is the same minus the prolapse, he has days where he goes a lot and then doesn't go for 5 days or so, bit like my 6 month old. my boyfriend is also very lean and being 6ft5 a bit too skinny. he was diagnosed coeliac 15 yrs ago x

[Penel]

If you are eating ready made gluten free food from the supermarket perhaps this may be causing a problem? Codex wheat, and other additives like xantham gum and cellulose, can cause pain and diarrhoea for some people. I developed lactose and yeast intolerance some time after going gf, and it seems that some people develop problems with other foods along with gluten.

Have you had any advice from your doctor?

[loobylou123 in reply to Penel]

I don't buy processed food of any kind unless it is free from food, and yes he can't eat fish or seafood of any kind, he is a very fussy eater, meat and two veg man. I normally make my own cakes with GF flour etc that does contain xanthum gum, thank you for your reply, very interesting, maybe he has developed an intolerance to something else, although an absolute nightmare to find out what. His doctor has referred him to have a camera up the rear end to rule out anything, then he is refereeing him back to his original consultant that diagnosed him. He did say that he would be more prone to developing gastric cancer than a person who was tolerant to Gluten.

[Lexy in reply to loobylou123]

Hi loobylou123, sounds like you are getting some helpful suggestions here already!

Just thought I'd chip in that I found out I was extremely sensitive to xanthan gum within weeks of going gluten-free! So I make sure not to eat anything with that in it. I basically do not buy anything prepared from the 'free-from' section (except pasta, and infrequently the DS ciabatta rolls). When baking I only use gf flours that have no 'added' ingredients (I use eggs, or flaxseed/chia seed for binding agents). Have also subsequently become sensitive to coffee and yeast extract and am now also lactose-sensitive (it's over 2 years since I went gluten free). I am finding as time goes by that my body reacts to certain amounts of sugar, glucose and fructose as well... When I am in total control of all that goes into my body (and avoid all the things I know I'm sensitive to) I am regular and problem-free when going to the loo, but as soon as I eat out, or at someone else's house (even well-meaning friends), it all changes! Good luck to you and your hubby and I hope you find some answers soon!

[Hidden]

Hi loobylou123, this must be a worry for both of you so i'm sorry for you both. I also think that penel makes some very good points. And I'm very glad to see that he is seeing his consultant.

The reason that some people have issues with xanthan gum, guar gum, cellulose and psyllium husk is they are emulsifiers/binders so they are used instead of gluten to bind foods and to bind water with oil in mayonnaise etc. The problem is they are very hydroscopic so they absorb a lot of water and that makes them act as a laxative or the opposite so they constipate some people. In fact psyllium husk which is used in many gf foods is used for colonic irrigation! so it's no wonder some people react to them.

Lastly is your hubby a refractory coeliac? This a when a diagnosed coeliac does not respond to a gf diet because after 9 years gluten free you'd expect an improvement and a prolapsed bowel can be caused by malabsorption and malnutrition and it's usually non diagnosed coeliac that suffer from it.

And good luck.

Jerry

[loobylou123 in reply to Hidden]

That makes a lot of sense, thank you the Doctor has got him an appointment with the bowel man very quickly, tomorrow night so I will mention your comments about the malabsorption, it makes perfect sense, Thank You

[Penel]

I do hope the consultant can help you sort this out. There has been discussion from time to time on here about FODMAPS, which may be of some help to you in the future.

Good luck to you and your husband.

[tassie]

I was going to suggest the FODMAPS diet too as reacting to fish may mean he is sensitive to amines.

I have developed multi-food intolerances since going GF and have similar issues to your hubby. Presently on an elimination diet trying to figure out the triggers.

[sallydogsmum]

Please take care when using gf flour or eating ready made gf foods. Some people can react to them as they can be contaminated (with very small amounts of gluten and up to the amount allowed in the codex, but still it's in there!). Could you try excluding these foods for a few weeks and see if there's any improvement? Cut out things like malt vinegar, alcohol etc. Be aware that glucose-fructose can be sourced from wheat so be wary around things like jelly, sweeties and stuff like that.

CD often produces very different symptoms, some (like me) have the over reactive bowel issue, I have a friend who has pain but no diarrhoea. Some people have constipation followed by the runs, others have no bowel symptoms at all and have sinus issues, brain fog, joint pain or ataxia and/or anger issues.

CD is an autoimmune disease, often associated with another, and thyroid problems are quite prevalent. As someone else suggested, get a test done, and make sure that it's the right thyroid test - there's a link on this site about the correct tests to ask for. Also do ask to see the results (get a copy if possible) and make sure a specialist reads them.

[sallydogsmum]

A thought about the loose stools.................. have they changed? Are they still coeliac stools? Do they have mucous in them? Or blood? Are they the colour he'd expect? Not too dark? Coeliac stools have a specific look about them - my hubby has Crohns disease and his stools are as specific as mine (his smell worse than mine, and that's going some!!.) but very liquid but he's always the same, mine goes from the runs to 'normal' depending on whether I've contaminated myself. As I did yesterday by having a glass of wine (why?? why?? I know it makes me have the runs.....).

Does his bowel man ask about bowel change? Ask the specialist to ensure that the constipation/diarrhoea issue is addressed, that they're not dismissing anything or labelling everything as CD. If your husband has noticed any change, do tell the doctor.

But try to re-address his diet, look at the potential contamination issues, he may be more sensitive then you'd both realised.

Good luck to you both

[loobylou123 in reply to sallydogsmum]

You are the first person to mention mucus !!! Yes he gets a lot of mucus. His bowel habits are regular he tends to go first thing in the morning although 3 or 4 times in the space of half an hour, and then not again for the rest of the day. When he was first diagnosed his consultant told him that he was hyper sensitive to all Gluten,Wheat, Oats, Barley, Rye etc although he did say that as time goes on he should loose some of the sensitivity. i will take your comments on board when we go to see the bowel man tonight

[Penel in reply to loobylou123]

Interesting to hear that the consultant said he thought your husband would loose some of his sensitivity ... For a lot of people on here the sensitivity seems to become worse and the reactions more extreme.

[loobylou123 in reply to Penel]

Yes I agree, he said that quite often if you are diagnosed as Gluten & Wheat free over time you may just become just Gluten Free, somehow it seems like the healing process is not complete when going on the diet, although i must admit when they diagnosed him he weighed less than 6 stone, and was basically starving to death and advised that he was on the brink of organ failure due to dehydration, so it stripped his bowel completely and he ended up in a wheel chair for about three months after diagnosis. We where getting the Glutefin white mixes etc on prescription, our health authority have now reigned back on it claiming that you can purchase products and are widely available , but I have a feeling that he is still Gluten & Wheat Free not just Gluten Free and the shop bought free from food etc is only Gluten Free, I get so frustrated with Doctors that just don't understand the condition.

[Lynilou]

Good luck and try not to worry, hopefully you will get the results soon, I had a similar episode recently - not long term fortunately but enough for a quick referral to hospital-fortunately meds and diet and lifestyle change helped. I too have thyroid issues- total thyroidectomy. I also cannot tolerate large amounts of dairy and I try to avoid 'free from' products and keep to a healthy natural food diet wherever possible.

[DartmoorGuerrilla]

Hi Loobylou, you said that the only processed foods you buy are "free from" foods. I think that could be your reason right there? They are often high in those ingredients that Jerry has listed. Many people on here seem unable to tolerate them. So if he's eating a lot of free from cereals, bread and pasta that could be causing problems.

[windymillersue]

i have many other intolerances as well as gluten, I suspect something else is setting him off, and he is already sore and delicate because of the gluten- my suggestion - do a food diary for at least 2 weeks and record reactions, hopefully you will see a pattern. In particular watch out for added preservatives (natural ones too) or colourings

good luck

[windymillersue]

i have a question mark over xanthan gum...anyone else get a numb mouth after it? and yes...maybe need loo more

[Hil101]

Yes, I have. It took me a long time to identify egg as part of the problem, then dairy and grain-fed meat ('corn fed' often means wheat and barley, btw). I can't eat eggs at all (ill for days, can't think straight for ages as affects brain too). BUT I have recently bought digestive enzymes with DPP-IV in them (clinically tested stuff) and take 1 or 2 with a meal that contains dairy, meat, fish or a meal out. This has improved me more than anything else in 2 years since diagnosis. Marvellous not to be rushing to the loo! Worth a try.

[loobylou123]

All of your comments are so helpful and makes me feel that we are not alone, but what a nightmare with regards the food, looks like we need to go back to basics and start again. Trouble is he has a sweet tooth and loves his biscuits etc and a choc a holic although finally he has gone choclate free apart from the free from biscuits on the odd occasion.

[Karen77]

Hi, thought I would pipe in. I've been reading that there are lots of gluten cross-reactive foods that, while not containing gluten, your body reacts as though it were gluten. It might be useful to do a google search. Www.theplaeomom.com explains it well on her post. It may be a good idea for your hubby to keep a food journal to track everything down (including bms) and look for patterns. Also, from reading both Wheat Belly and Grain Brain, I am inclined to not eat any GF flours or food prodcuts. I know it's difficult to change your mindset and approach to food, but you might want to have your hubby follow the Paleo Autoimmune Protocol Diet (AIP), which is a whole-foods based healing diet. Www.phoenixhelix.com is a good site. If your hubby isn't eating fish or seafood! Then I'd also recommend he take fish oil. I'm not a doctor or nutritionist.

[pretender]

The Strict Gluten Free Diet I consider very misleading to everyone. Until January 2012 the GF diet ran at 200ppm per kilo of finished product which all shouted that this was safe for coeliac's, for some reason from January 2012 the diet ran at 20ppm per kilo of finished product and still coeliac's have issue's but do not blame the gluten content of the gf diet. To a minority a strict gf diet means exclusion of anything from a gluten source. The Gluten Free diet is there for those who can tolerate it and if continued ill health continues on the diet then coeliac's should try elimination of the gf diet and gradual reintroduction to confirm their tolerance, yes it does work.

[Hil101]

For me, the other way seems to be using the gluten enzyme tablets to 'mop up' the traces of gluten in 'GF' products. Has anyone else tried these?

[loobylou123 in reply to Hil101]

Where would I get these from and what are they called, maybe worth a try

[Hil101 in reply to loobylou123]

The digestive enzymes I have now with the DPP-IV in them are GlutenEase 2X. You can get them off the Internet. I take 1 or 2 just after a meal, mainly after dinner or a meal out. I can now eat some dairy again, which is such a treat. And (sorry if this is too much info) instead of semi-diarrhoea 4 times in a morning, I now almost always have normal stools just once or twice. And I rarely wake up with the discomfort I had most nights previously. I've been using them for about 8 weeks and they are a great discovery. I think it works like a washing machine; add food to stomach, add enzyme to break it down and the enzyme deals with the 'dirt' ie trace gluten from contamination etc.

[Mango1]

I would add that perhaps he could ask for a lactose intolerance test. I was given one after being gluten intolerant for about 8 years and it proved to be positive. Not having lactose has really changed my 'loo' habits.

[loobylou123]

Well after a visit to the Bowel Consultant last night he is going to have the camera up the rear end in a couple of weeks, so this may prove an instructive procedure, lets hope so

[Jacks]

Firstly the "Free From" isle is full of products designed to look like 'normal' food and in the factory where they are made they have to add a whole host of quite unpleasant additives in order to produce that effect. I couldn't eat more than one biscuit without having some discomfort later, so they are emergency foods only.

Glutafin mix contains more than just a flour - it has glucose syrup, thickener, skimmed milk powder, gum, methylcellulose. If you bake why not use a plain rice flour (Pure have some).

Methylcellulose is a laxative. It is also used to create special effects in the film industry, so probably best left for Ghostbusters.

I don't remember the exact terminology but my consultant explained that the reason we alternate soft/hard pooh (sometimes in the same session!) is because the older we are at diagnosis the more messed up our internal system is.

A lactose hydrogen breath test is very worthwhile if he's gassy with milk products.

Refractory CD is diagnosed by a process of clinical elimination tests by your consultant.

[loobylou123 in reply to Jacks]

Thank you for the info, very helpful, we are keeping a diary as to bowel habits, food and stress levels to try and find some kind of answer