Has Endo caused me to have Celiac disease?

Hi all,

I've had numerous operations to remove Endo and adhesions since 2009. My last operation in November 2014 was a success. The surgeon was able to remove ever single Endo and adhesions and unstick my bowels, overies and bladder.

Since my first operation in 2009 I was told that I have IBS. So I have been avoiding too much fiber foods. I was still having issues with my bowels, bladder stomach pains so I had endoscopy tests done and blood tests done I got my results yesterday and was told I have genetic celiac disease which was dormant but due to traumatic events it triggered off the celiac disease. Does this mean that Endo and all my stress caused celiac disease? I have also been diagnosed with Carpol Tunnel on both wrists, depression. What else is am I going to get. I'm so fed up with my health. Just when I think I'm recovering and will be able to start looking for part time work I find out that I have something else and can't take another step forward. All I want to do is cry and stay in bed all day and be alone but I don't I have to carry on because of my children and hubby I don't want to stress them or worry them anymore. I lonely at times. Am fed up of being ill all the time, I just want to get better so I can get a job and move on with my life and be happy with my family, is that too much to ask?

Will it ever end.

Sweety.

12 Replies

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  • How frustrating for you to have so many different health conditions to manage! I have IBS, allergies, depression and dodgy wrists too (snap! Worst snap ever, heh) and you do reach a point where you're just thinking "what on earth else is going to go wrong?!". Regarding celiac disease, it does seem to be one of those things that people are predisposed to genetically but then requires a trigger, so I guess the endo could have set it off. Then again if it hadn't been for the endo it could have been anything else - some people who are already vulnerable to it have it set off by a bad stomach bug, stress at work, all sorts of stuff you just can't avoid. It's probably not much consolation but I bet you would have ended up with it even without the endo.

    If you don't mind me asking, are you getting any help with the depression? Some antidepressants also help with pain and IBS (I'm annoyingly sensitive to them so can't tolerate them, but I know they help a lot of people), and I've found therapy really useful too. I just know what it's like to want to hide in bed all day and it's a horrible situation to be in.

    x

  • Hi KML22,

    Thanks for replying👋 snap back😀. I'm on depression tablets but don't like taking them, they leave me feeling very dehydrated and my lips look very dry, I don't feel hungry or feel like wanting to eat while I take them. I'm on Citalopram.

    I'm always at that point what else is going to happen to me, even my hubby says that to me. It's so frustrating and annoying when the family wants to go out and I can't due to pains or I can't eat what's in the restaurants/shops. I just feel so tired, can't stop yawning throughout the day, I try to sleep in the afternoon but can't.

    I drank a couple of sips of red bull yesterday and was in so much pain and now I'm having trouble opening my bowels today.

    Now that you said it I do think Endo did trigger it off. I had Endo inside my bowels in 2009 and the surgeon had to cut part of my damaged bowel and reattach what was left together since then I have had trouble eating foods. I mostly stick to drinks throughout the day, but feel exhausted come evening due to lack of food intake.

    If you don't mind me asking do you have problems eating solid foods?

    Sweety.

  • I tried citalopram for a bit and had trouble with side effects too. If it's not helping with your mood either there are a lot of other antidepressants you might get on better with?

    Red Bull would give me cramps too - caffeine is a nightmare for IBS! I'm sorry you're in so much pain <3 I went through a patch in 2007 where I could barely eat for about six months due to pain/nausea, and being malnourished like that really wears you down. Could you maybe try supplement drinks? They're designed for people who struggle with solid food for whatever reason. You can get some prescribed by a doctor (ensure is a popular one), but you can buy others in supermarkets and pharmacies. They are generally really carefully balanced in terms of nutrients so you'd have a bit more energy if you could stomach them. I know some brands are gluten free as well because they are sometimes prescribed for people who have digestive problems due to celiac disease. I'm in the UK though so not sure what you'd have around you locally.

  • Citalopram does help with my mood, I've only taken it for a month, I just don't really like the side effects.

    I've had red bull before once and I had no problems drinking it. I can't drink ensure, it has milk init.

    I can't tolerate milk, dairy products, although I can slightly handle goats yogurt and goats cheese, I'm okay with eggs at the moment. I drink coconut milk.

    I live in the UK too.

  • oh awesome that you're UK too, that makes it easier! I'm allergic to milk so had a similar problem with supplement drinks. There are several dairy free types though (fortijuice is one, I think, never had it though), plus I used to use nesquik milkshake powder (which was gluten and dairy free when I used to buy it in 2007, would have to check now, it's still definitely fortified with vitamins though) with almond or coconut milk as a supplement drink because it was cheaper than getting a prescription, heh. It's so annoying being sensitive to so many different foods isn't it?!

    Totally off topic but I really like this sheep's cheese you can get in Sainsbury's - the brand is Parlick Fell. Half my family are allergic to cow's milk and have decided this is the best thing ever!

  • Yes it does make things easier. I've never heard of fortijuice.

    I didn't know nesquik milkshake powder was gluten and dairy free, I will check it out next time I go shopping.

    I've never tried sheep's cheese, I will definitely try it.

    Thank you.

  • Possibly; I know that I developed IBS which many of the specialists I've seen over the years believe endo was a contributing factor not least since much of it was around my bowel and intestines.

  • Hi Maria7800,

    Have you been tested for celiac disease? Do you have problems eating solid foods?

    What us women go through and how much we tolerate pain and doctors who don't believe us.

  • Hi, no I've no problem eating generally although as I said I found significant relief through changing to organic diary products (more than anything else). I was tested for numerous allergies, etc. when first diagnosed with IBS and again a few years ago but I only have IBS if that makes sense. Some doctors are simply too ignorant to believe that others know their body better than 'professionals' whilst others are more open to the fact that you understand what your body is saying and only need them for practical issues such as diagnoses and treatment.

    I've had this since I was in my teens and I'm now 42; I've spent thousands of pounds and travelled to various countries all for this condition and am resigned to the fact that in essence, it is incurable and some are lucky enough to be able to manage their symptoms better than I. It is really annoying to me when those who can and do manage their symptoms automatically think those who are suffering have some kind of failure in their own lifestyle or aren't doing everything. There's a woman I know who is 'fine' and barely has any symptoms but she also only had stage one of the condition but thinks I should eat exactly what she eats to ensure my symptoms are controlled - sorry I'm ranting now...!! hahahahahahaha

    So to answer your question, I've had IBS for about 20 years or so, with significant relief when I moved to organic diary products (but not necessarily all organic food). It's the oestrogen in the milk/cheese I found to be most affecting my condition.

  • Wow! 20 years is a long time suffering with IBS, I've had IBS for 6 years. Everyone is different, and everyone finds different things that help them. I found that if I limit my fiber intake and eat GlutenFree foods and avoid dairy I can manage the pains but not all the pains.

    You're not a failure, never think that, I think like that sometimes and my daughter reminds me that I'm just in a tough spot at the moment and I'll recover and move a step forward. Everyone feels like a failure at times when they go through tough spots through life.

  • Is it possible that you have had celiac disease the entire time and just happened to be tested now. Is this the first time you have been tested? If not I would be happy to have a diagnosis. I was misdiagnosed for yrs with IBS and finally got a celiac DX and all my symptoms went away once I stopped eating gluten. Once I was DX my family was tested and my sister also had it, yet the commen symptoms were not there for her. I hope things get better for you now when you go gluten free.

  • Hi Kmac1980,

    I have been tested in the past twice for Celiac Disease the tests came back negative. I was tested again and this time was told my blood test came back positive. The doctor said I have genetic celiac disease. I was born with it and it was dormant but was told that my first Endo operation which was stressful and very traumatic triggered it off in 2009.

    I have been gluten free for about 6 months now I have noticed the difference in my body but am still having problems eating solid foods and still having some pain. I can actually feel my bowels being irritated when I eat and feel the inflamation, I have been on liquids for a few days and I have noticed the inflamation and irritation has gone down.

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