Can Anyone Help Me?

[Katie O'Rourke]

Hiya. Sorry wasnt sure which section to put this under, and wondering if anyone could give me some advice as i dont know whats wrong and silly doctors are not really helping.

Basically its exactly 3 years now that I have been diagnosed as coeliac and been on the diet, and adhere to it pretty strictly. Basically when I was diagnosed i had the blood test, followed by the gastroscopy. However, I also had GERD at teh time, and also unexplained intetsinal bleeding, so they did a sigmoidoscopy as well. Basically he said that whenever I get bad diarrheoa my gut cant cope, and my blood vessels are very near teh surface after the villi being destroyed, and told me it should improve with a gluten free diet.

Anyway, 3 years later and the bleeding has just been gettign worse if anything. I always have diarrhoea, and i dotn even have any fibre in my diet so i have no idea why. i still have the bleeding problem as well. some foods in particular seem to set it off, but other times i dont know what it is. i have noticed that nuts and seeds, and dessicated coconut, as well as spicy foods, black pepper and chili are all problem causing. i had trouble if i ate over 15 grams of chocolate a day before the diet, but now i am fine with chocloate. i dotn understand. its very confusing. earlier this year the bleeding got so bad that they were going to hospitalise me, but i really dont like needles and dont trust hospitals, so tried changing my medication instead. (it may be coincidence that this happened a week after i tried oats for the first time since diagnosis but later realised they must have been contaminted with wheat anyway.) anyway at that time my gastroenterologist said he wanted me there so he could do exploratory surgery (!). i was really not keen on this and went to see my GP (normal doctor) instead. he diagnosed me with having IBS (which is often mentioned on this site is aka i dotn know what it is), and gave me mebeverine, and when this didnt work well, gave me alverine as it is stronger, and also gave me procteosedyl and peppermint oil capsules as he said this should help. my gastroenterologist failed to admit he had missed tehre was soemthing else wrogn with me apart from coeliac disease, and was just like "yeah, well IBS is even more common than coeliac disease, 10-25% of people have it". which didnt exactly fill me with confidence that he knew hwta he was doing. anyway what he wanted to do was exploratory surgery, including tying off the blood vessels which were causing the problem. though i think this is stupid - i think he only wants to do it because he wont admit there is another problem until he has seen what it is exactly, and also thsi is stpid, because surely if i accidentally eat soemthing that doesnt liek me again, surely teh bleeding will start again. i need to know what is causing it in the first place. surely he should at least test me for other intolerances causing me to have D all the time before doing surgery?

also my other problem is that it is making me very anaemic - i normally have to take the pill continuously to prevent time of the month, so as to not become mroe anaemic, as the only iron tablets which did not make me ill - Slow Fe, have now stopped being made. and supposedly youre not suppoed to take iron tablets with IBS anyway...

I dont know, any advice please...

thanks

[plantime]

I'm sorry I don't have any help to offer. Your case sounds like a very severe one to me. I will offer hugs and prayers, though. ♥♥♥

[CarlaB]

Sounds bad. I don't really have much good advice ... maybe just eat very simple foods and see if you heal that way. From what you said it sounds like the bleeding starts when you eat something your body doesn't like. So, would eating nothing but meat, fruits, veggies, rice and potatoes make it so you heal and your symptoms aren't as severe? I know a lot of people here have talked about the specific carbohydrate diet, maybe that would help. I always thought that is sounded like a good way to heal for someone who had a lot of damage.

IBS just means your bowel is irritated and they don't know why.

[Cindy Chabot]

Sorry to hear you are in distress. What I can recommend to you is to read the book Breaking the Vicious Cycle by Elaine Gottschall. It focuses on diet designed for total digestive healing. The diet is called the specific carbohydrate diet. It is gluten free and also eliminates all other grains. I have just started the diet myself. You can access a lot of information from the following website Open Original Shared Link. I hope this is helpful

[Aerin328]

Sorry you're not feeling well! Not sure what to say except to trust your gut ( ) foremost!

[rinne]

Do you have any other symptoms which don't appear to be related to intestinal issues?

And I'm sorry to hear that you are having such a difficult time.

[Guest AutumnE]

Im sorry you are going through this, you must feel like you dont know who to turn to. I also know that the nhs isnt the easiest to get a referral from I have a few friends who have dealt with it.

When was your last colonscopy done? I may be wrong but seeds and nuts scream out diverticulitis to me, quite a few of my family member's have this and one was so anemic that she was in the hospital from it because of blood loss. I wish I could help more

To add one more thing, please try and get a referral to a different gi doctor. You must have someone you trust. Also I know your fearful of hospitals but you need to make sure it isnt something more serious than they are letting on.

[nikki-uk]

Hiya. Sorry wasnt sure which section to put this under, and wondering if anyone could give me some advice as i dont know whats wrong and silly doctors are not really helping.

Basically its exactly 3 years now that I have been diagnosed as coeliac and been on the diet, and adhere to it pretty strictly. Basically when I was diagnosed i had the blood test, followed by the gastroscopy. However, I also had GERD at teh time, and also unexplained intetsinal bleeding, so they did a sigmoidoscopy as well. Basically he said that whenever I get bad diarrheoa my gut cant cope, and my blood vessels are very near teh surface after the villi being destroyed, and told me it should improve with a gluten free diet.

Anyway, 3 years later and the bleeding has just been gettign worse if anything. I always have diarrhoea, and i dotn even have any fibre in my diet so i have no idea why. i still have the bleeding problem as well. some foods in particular seem to set it off, but other times i dont know what it is. i have noticed that nuts and seeds, and dessicated coconut, as well as spicy foods, black pepper and chili are all problem causing. i had trouble if i ate over 15 grams of chocolate a day before the diet, but now i am fine with chocloate. i dotn understand. its very confusing. earlier this year the bleeding got so bad that they were going to hospitalise me, but i really dont like needles and dont trust hospitals, so tried changing my medication instead. (it may be coincidence that this happened a week after i tried oats for the first time since diagnosis but later realised they must have been contaminted with wheat anyway.) anyway at that time my gastroenterologist said he wanted me there so he could do exploratory surgery (!). i was really not keen on this and went to see my GP (normal doctor) instead. he diagnosed me with having IBS (which is often mentioned on this site is aka i dotn know what it is), and gave me mebeverine, and when this didnt work well, gave me alverine as it is stronger, and also gave me procteosedyl and peppermint oil capsules as he said this should help. my gastroenterologist failed to admit he had missed tehre was soemthing else wrogn with me apart from coeliac disease, and was just like "yeah, well IBS is even more common than coeliac disease, 10-25% of people have it". which didnt exactly fill me with confidence that he knew hwta he was doing. anyway what he wanted to do was exploratory surgery, including tying off the blood vessels which were causing the problem. though i think this is stupid - i think he only wants to do it because he wont admit there is another problem until he has seen what it is exactly, and also thsi is stpid, because surely if i accidentally eat soemthing that doesnt liek me again, surely teh bleeding will start again. i need to know what is causing it in the first place. surely he should at least test me for other intolerances causing me to have D all the time before doing surgery?

also my other problem is that it is making me very anaemic - i normally have to take the pill continuously to prevent time of the month, so as to not become mroe anaemic, as the only iron tablets which did not make me ill - Slow Fe, have now stopped being made. and supposedly youre not suppoed to take iron tablets with IBS anyway...

I dont know, any advice please...

thanks

Hi Katie,

sorry you are struggling to find out what's wrong.

Have you ever had a repeat endoscopy +biopsy to see if your villi have grown back?

IBS and all that bleeding doesn't sound right to me.

I'd have to agree with Autumn and say that diverticulitis does sound possible-do you get stomach pain and cramps too?

Sorry I can't offer any real advice,but with your symptoms it does sound as if the gastro does need to scope both ends to see what's going on in there-at the very least.

Good Luck.

[Guest nini]

I agree that diverticulitis sounds like a very real possibility. My brother in law has this and ended up having sections of his intestines completely removed because of the damage. While dietary changes will help, avoiding nuts and seeds, spicy foods, caffeine, etc... you may need surgery if there is severe pocketing. I know none of us like surgery, but sometimes it's neccesary (I'm the LAST person to ever recommend surgery so take that for what it is)...

anyway, I noticed also that you are in the UK, and I think I read that in the UK the standards for gluten-free are a little less restricted then here, so it's possible you are still getting gluten in your diet even in miniscule molecular level amounts, if so, I would seriously consider taking my diet back to the basics. If you don't make it completely from scratch yourself and know where all the ingredients come from, ie: starting with fresh fruits and veggies, plain meats and simple starches like rice and potatoes... then don't eat it. At least until you can tell if you are starting to heal.

[jenvan]

Hiya. Sorry wasnt sure which section to put this under, and wondering if anyone could give me some advice as i dont know whats wrong and silly doctors are not really helping.

Basically its exactly 3 years now that I have been diagnosed as coeliac and been on the diet, and adhere to it pretty strictly. Basically when I was diagnosed i had the blood test, followed by the gastroscopy. However, I also had GERD at teh time, and also unexplained intetsinal bleeding, so they did a sigmoidoscopy as well. Basically he said that whenever I get bad diarrheoa my gut cant cope, and my blood vessels are very near teh surface after the villi being destroyed, and told me it should improve with a gluten free diet.

Anyway, 3 years later and the bleeding has just been gettign worse if anything. I always have diarrhoea, and i dotn even have any fibre in my diet so i have no idea why. i still have the bleeding problem as well. some foods in particular seem to set it off, but other times i dont know what it is. i have noticed that nuts and seeds, and dessicated coconut, as well as spicy foods, black pepper and chili are all problem causing. i had trouble if i ate over 15 grams of chocolate a day before the diet, but now i am fine with chocloate. i dotn understand. its very confusing. earlier this year the bleeding got so bad that they were going to hospitalise me, but i really dont like needles and dont trust hospitals, so tried changing my medication instead. (it may be coincidence that this happened a week after i tried oats for the first time since diagnosis but later realised they must have been contaminted with wheat anyway.) anyway at that time my gastroenterologist said he wanted me there so he could do exploratory surgery (!). i was really not keen on this and went to see my GP (normal doctor) instead. he diagnosed me with having IBS (which is often mentioned on this site is aka i dotn know what it is), and gave me mebeverine, and when this didnt work well, gave me alverine as it is stronger, and also gave me procteosedyl and peppermint oil capsules as he said this should help. my gastroenterologist failed to admit he had missed tehre was soemthing else wrogn with me apart from coeliac disease, and was just like "yeah, well IBS is even more common than coeliac disease, 10-25% of people have it". which didnt exactly fill me with confidence that he knew hwta he was doing. anyway what he wanted to do was exploratory surgery, including tying off the blood vessels which were causing the problem. though i think this is stupid - i think he only wants to do it because he wont admit there is another problem until he has seen what it is exactly, and also thsi is stpid, because surely if i accidentally eat soemthing that doesnt liek me again, surely teh bleeding will start again. i need to know what is causing it in the first place. surely he should at least test me for other intolerances causing me to have D all the time before doing surgery?

also my other problem is that it is making me very anaemic - i normally have to take the pill continuously to prevent time of the month, so as to not become mroe anaemic, as the only iron tablets which did not make me ill - Slow Fe, have now stopped being made. and supposedly youre not suppoed to take iron tablets with IBS anyway...

I dont know, any advice please...

thanks

I was also going to mention diverticulitis, as you mentioned seeds being a main issue. Crohn's may be something else to explore, as it is associated with bleeding and several other issues, like fistulas, where food can get trapped and lead to infection, pain. Go see another doctor. Never accept an IBS "diagnosis" until ALL OTHER possiblities have been elminated. All to often we get labeled with IBS, instead of our real illness or disease. If you are having much bleeding and it does not appear to be from hemmorrhoids, I def rec you pursue evaluation with another doctor.

[Katie O'Rourke]

thanks to everyone who has replied so far, for your help and stuff , its greatly appreaciated. Carla B - I do tend to eat bland foods when it starts mainly because i become scared to eat as i get pain about 30 minutes after eating anythign substantial, so little and often is teh way to go, and usually have things like bowls of custard/rice pudding, as i find that increasing dairy intake usually helps it heal quicker, but other than that avoiding foods doesnt really help i just have to wait for it to get better on its own. i forgot to mention that when i had this goign on in march, it was bleedign for a month before it stopped. ive had it once since then about july when i ahd it for a week, and it started again last weekend, which appeared to be from having some peanut brittle and then some salsa a few days later, even though i shook most of it off the tortilla chips.

Cindy - thanks for your help i will check that out. Rinne - I have quite a few otehr symptoms, but i try and hide them if they are not bothering me greatly,and i think i can sort them out/treat them/predict them myself, as i really dont see the doctors or anything unless i need to. basically ive had the bleeding on and off for a total of nearly 8 years (since i was 15). in fact it was due tto that and the GERD gettign so bad that i finally decided to get the dr to find out what was wrong with me (and my dad is coeliac otherwise they may never have tested me for that). but basically before i was diagnosed coeliac i was havign blood sugar issues, and had initial test doen by a nurse and it was 11.1 (several horus after eating when i was about to have my lunch lol). though i only tend to notice if its low. she told me to get the dr to do full blood panel for diabetes, but i can pretty much control it myself, and carry glucose tablets in case it gets too low. she also suspected i may have start of MS and also have fluctuation in thyroid function (as i suffer from very fast pulse even though my BP is normal). (symptoms inc: fast heart/pulse rate, dizziness, muscle twitches/contractions, shaking, weakness, fatigue, bad memory, and that pretty much sums it up cos i cant remmber what else lol) apart from that though, i just dotn absorb vitamin K (so blood doesnt clot very well) and iron (so become anaemic).

autumnE - i havent actually had a colonoscopy - just a sigmoidoscopy which is the same but on a smaller scale - they dotn look at as much. sigmoidoscopy was just after the endoscopy/gastroscopy though which was 3 years ago, but i had really bad diarrheoa at the time, so he knew about the bleeding when he looked at my gut at the time. it was my GP who referred me to teh gastroenterologist, and he is the head of the department...so not sure quiet if i would be able to get a second opinion. i hate how veery tiem i go and see him though he always has a plate of biscuits on his desk. i mean its just plain mean isnt it?

Nikki - i havent had a second biopsy mainly because i hated the first so much, and i had it without any sedation at all as i am sooooo scared of needles. but i had a blood test i think 2 months after i went on the diet and a few since, which were all negative for antibodies. my dad had the second one though, but they waited til he had been on the diet for 10 years.

Nini - hope that answered your query soemwhat too - i am definitely gluten free at the moment. i can tell if ive eaten even a tiny bit as i always get the brain fog even if i dont get teh GI symptoms. I have been trying to avoid those foods - liek for example i am ok if i chew the nuts really well, but i dotn know, its very confusing really. as well as teh fact that when i saw my nutritionist she said i had to be careful not to restrict my diet too much but i dont think she realsied how badly the foods i was describing affect me. do actually cook most things from scratch - thats why i still live at hoem as me and my dad are coeliac, so it is a lot easier, and he never gets the bleeding, and he is more sensitive to gluten than me. rather unfair really....

sorry about my dodgy typign by the way but i havent been gettign a lot of sleep recently, as the bleeding tends to give me stabbing pains, which can be faint or quite bad - thats what i take the anti-spasmodics for (lots of small stabbing pains rather than one large one). my other main problem is that liek today, my stomach is giant, and i had to wear a hoodie to work to dhide the fact i look pregnant. i dont have wind - but my waist has goen from 30 inches to 45. weird....

thanks again to everyone x x x x