Celiac and IBS…: Hi everyone. I talked... - Gluten Free Guerr...

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Celiac and IBS…

Saba82 profile image
26 Replies

Hi everyone.

I talked to my doctor regarding my frequent bowel movements after being on Gf diet for 3 months and he said it’s stress related IBS. If I eat just plain rice with meat or chicken stool is much better. Yesterday I had 2 oranges 1 apple and avocado and this morning my stool was so bad. Doctor said just cut veggies and fruits for now cause it irritates IBS. He wants me to start my SSR Lexapro as soon as possible. Did anyone developed IBS after celiac diagnose?

Thank you

Saba

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Saba82
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26 Replies
nomorebeer profile image
nomorebeer

I was diagnosed with Coeliac Disease in 2011 and after experiencing similar symptoms, I was told the that I also have stress related IBS.I'm in the process of cutting certain foods out to see if I can pinpoint what might be making it worse, and like you, I've found that fruit definitely irritates my stomach.

Trouble is, cutting out even more food that might irritate my IBS along with gluten containing foods, hardly leaves me much to eat, and therefore makes me even more stressed which in turn irritates my IBS.

Penel profile image
Penel in reply to nomorebeer

Have you looked at the low Fodmaps diet? It might be helpful?

eliz45 profile image
eliz45 in reply to nomorebeer

It truly is a pain, and takes so much time and effort constantly trying to figure out what to eat each day. One thing I do is to cook something and then freeze portions for another meal or two. Another thing I do is drink a smoothie for one meal. Just keep track of what is in it in case it causes a problem.

Saba82 profile image
Saba82 in reply to nomorebeer

I’m the same

Penel profile image
Penel

Hopefully the medication will help with your anxiety and help calm down your IBS.

Stress makes my IBS worse but it is kept under control by following a low FODMAPS diet, which eliminates possible problem fruits and vegetables, and then advises how to reintroduce them slowly.

monashfodmap.com/about-fodm...

I found a cookery book that suggests daily meal plans, it’s been very helpful in helping me modify meals.

Saba82 profile image
Saba82 in reply to Penel

Hi:). What is the book name?

Penel profile image
Penel in reply to Saba82

Hi Saba

The book is The Complete Low Fodmap Diet by Dr Sue Shepherd and Dr Peter Gibson.

I don’t follow their suggestion on breakfast cereal and gf bread, I make my own granola and have lactose free yoghurt. And I simplify a lot of the recipes.

Perhaps check with you doctor that it’s ok for you?

eliz45 profile image
eliz45

Hi. I was diagnosed with IBS over ten years ago. And then celiac later. And now microscopic colitis. First, it might very well be stress related. I do think stress plays a huge part in it. When I was diagnosed with celiac, I went gluten free. But for a very long time I still had diarrhea. You really have to be careful of everything you eat. No more licking envelopes. Every pill must be checked for gluten. I just Google it and ask if what I want to buy is gluten free. No sharing toasters or colanders, or wooden cutting boards etc. It is a real pain but must be done. So you might still be getting gluten. Have you had a colonoscopy? Did they do a biopsy for microscopic colitis?

It is an inflammation of the colon. Lots of people have it but it is often not tested for. That would be another cause of urgent, watery diarrhea.

You could have had diarrhea because of the avocado. Maybe your gut has troubles with fats, even healthy ones. You lose a lot of your ability to digest stuff as you grow older. Citrus can cause problems, too.

IBS is not an actual disease. If you get tested for all other possible diseases, and they find nothing, then you get a diagnosis of IBS. So there are tons of people with all sorts of symptoms but they are all labelled IBS-C or IBS-D.

I am guessing your doctor has not tested you for other things that can cause diarrhea. Most of them don't. And I don't know about your SSRI, but it lists diarrhea as a possible side effect.

I hope this is just a simple case of having eaten some hidden gluten. Meanwhile, I would look up some of the bland foods recommended for IBS and stick to them for awhile. If you must eat fruits and veggies, cook them and smush them really small. And try to keep track of what things you ate and when. Sometimes a reaction is delayed.

This could be a long journey of discovery, or maybe you will have a quick fix. I hope you find something simple.

Saba82 profile image
Saba82 in reply to eliz45

I’ve had endoscopy and colonoscopy 4 months ago. The reason was occult blood in my stool. So after the procedure doctor said colon is clear you have gastrities and a little bit redness in your small intestine. He said anyways he took couple of biopsies and let me know. So 3 days later he emailed me nothing to worry about ,he knew I was extremely anxious. On my appointment he said I have mild celiac disease. The day I got my diagnose I had a flight to London,so was there for 3 months. Before diagnose I haven’t had daily diarrheas. I’ve had upset stomach and stomach related issues because I was struggling with chronic gastrities since I was 16.But about a year ago I’ve had mild pain under my right rib took antacids and it got better. What I’ve also noticed during the past year,gurgling in my stomach,undigested food in my stool and also diarrhea after eating outside,not all the time and also anemia all of the sudden.Still was related everything to gastrities. The problem is thy before diet I had 1 bowel movement a day now it’s like my mind set up for 3 and they are not complete and it’s either solid or fluffy floating. The first 3 month of GF it was once a day in London. Spoke to my doctor 3 days ago he said it happens because you changed your diet and since I’m extremely anxious it makes it even worse. So I had my mom cancer diagnose last year in March and was taking medication to control my anxiety and now my celiac disease ,so for the last 4 months not even a second that I wouldn’t think about my diagnose. I feel so much pressure on my chest. My brain is nor relaxing. My panic attack won’t let me go. I was chubby before diagnose cause I was eating a lot,after gf diet I lost weight. The symptoms of hand tingling,headache,muscle pain,feet pain,neck pain everything has been improved,almost gone. My blood work has been improved as well. The only thing that I developed after 3 month on gf diet frequent bowel movements and feeling of not emptying my bowel. Will have SIBO breath test next Friday and regardless of the test results doctor wants me to take xifaxan and also Lexapro for my nerve system. He said sometimes you need to choose what is more beneficial regarding taking SSRI,he said right now the amount of stress and anxiety you have harming you more than anything else and we need to take it under control. I asked him again about my results,he said no colitis’s,no chrons disease . He said pathalogiat report was mild celiac even early stage something like that. Marsh 3 a score,partial atrophy of the villi. I’m exhausted mentally I want to be like old me:( . Interesting thing is that my celiac antibody was negative but biopsy and genetic panel was positive so doctor said it consistent with celiac disease. Sorry for such a long reply

Histamine intolerance is worth checking out. Citrus fruit and avocados are desperately high in histamine. I would never tell anyone not to take recommended medication, but it concerns me that a doctor is so keen to push you to take antidepressants in respect of a gut condition when he is not a gastro specialist. I'm seeing a lot of red flags and hearing a lot of alarm bells here. Is it worth asking for a different doctors opinion or seeking input from a functional gut clinic? B vitamin deficiency can led to anxiety issues, and that is common with coeliac. I personally would hold out for the SIBO test before going down the anti-depressant route - you only have one more week until that. I agree with what eliz45 states about IBS. I was repeatedly told by a gastro I had IBS until I demanded a SIBO test (they had never even heard of it). Ended up having to get it done privately, and then had to fight to get the antibiotics. Lots of random health issues disappeared after that including bad heart palpitations. You have a different system in US in terms of health insurance and many doctors just seem to be frontline sales reps for drugs companies. The big issue for coeliac is drugs companies can't make any money out of it, and this can argueably be one/if not thee reason doctors are so poorly informed about it and don't bother testing properly.

Saba82 profile image
Saba82 in reply to

Hi Benjamin. All my doctors,primary gastro and psychiatrist wants me to take antidepressants . My anxiety to the point that I can’t function. For example before coming back to US I’ve heard that my sister friend has thyroid cancer. The moment my sister told I started panicking because I do have some cystic nodules on my thyroid. I was shaking and telling her that I might have it as well and I developed thyroid pain,my neck lymph nodes was aching. She said oh my god stop if you don’t have anything. You’ve been monitoring your thyroid for 10 years now. When I came back to US I still had that problem. The day that I had ultrasound they had to give Xanax cause I was so panicking I felt like I’m gonna have heart attack. After they checked doctor said nodules are the same size,nothing has been changed you just need to check it once a year. After that my thyroid pain disappeared . I also told my doctor I might have Hashimoto cause a lot of people with celiac have it. We checked for that as well and all thyroid function and antibodies were normal.He said you can’t assume it. He said Saba I’ve been knowing you for 10 years now you have to start Lexapro.My primary doctor said do you even realize what are you doing to yourself. So imagine how bad it is.my B12 was normal,it was 450. The fact that there is no medication for that scares me a lot and makes me even more anxious. I did look up at celiacdrug for Lexapro it says gluten free,but you never know

in reply to Saba82

Sounds like you are in good hands then, and getting the correct advice. My mistake as I have a really poor opinion of doctors at this stage. I hope this approach helps for you.

eliz45 profile image
eliz45

Wow! Okay, so I doubt I will be able to give you peace of mind, but I can share a few more things that could help. First, it is great that you don't have colitis, because it is not pleasant and hard to completely cure for good. Urgent watery diarrhea.

Also, it sounds like you have a good doctor who is being thorough and really trying to help you.

Mild celiac is good because even though you will always have the disease, you have not done much damage to your intestines. So you are likely to be able to heal any damage done. So that is another good one.

The pain under your rib could very well have been gas from your troubled intestines. I know I get all sorts of pains in all sorts of places and it is just the food moving along my intestines and bubbling up annoying gas. And you fixed that so that is good.

Same thing with the gurglings and the changes in stool forms.

Floating feces usually means you ate fat that did not digest. So that is not horrible.

I have taken Xifaxan several times. It did not work for me, but it has worked for lots of people. And Xifaxin is used if you have SIBO, so if you take it you could possibly cure your SIBO, if you find out that you have that. So that is a good decision.

I had the breath test, and tested positive for SIBO. It is a very easy boring test. Just bring something to do.

I am so sorry to hear that your mom has cancer. I do know how that feels, and I know how panicked you can be when everything seems so out of control and you have all of these unknowns and sadness to deal with. I went through several years of terrible loss of 5 siblings, so what I can tell you for sure, is that you can get through this. Your anxiety is causing your symptoms to be even worse than they are, and I am guessing you are exceedingly hyperanxious and worrying about every little change in how you feel. You are sort of supervigilant. I recognize it all from my own journey through these difficulties. But you can get yourself calmed down and you can figure out the steps you wish to take to get you healthy again. I think your doctor is right that you need to destress first. You seem to be in agony about all of the issues. If you get control of your anxiety, and your thinking, you wil be able to do all that you need to move foreward and figure out your path to good health. It is not easy, but you can do it. You can't go back, and that is sad, but you can get well, one step at a time. You could try the drug, see if it helps, or learn deep breathing, do meditation, go to acupuncture, exercise, do yoga, do affirmations, find things to do to lift you up and make you laugh. Research it. There are lots of ways to decrease anxiety. But the drug might give you the fastest relief, if even for just a while. I took Xanax for awhile. If you can get some control, then you can look into nondrug relief. Good luck and just hang in there.

Saba82 profile image
Saba82 in reply to eliz45

Thank you. My gastro is such a nice person. Imagine in US emailing doctor everyday about your worries and responds to your email every single time. 3 days ago I was so panicking I emailed him at 9 pm he responded right away,you are fine nothing life threatening and serious and he FaceTimed me next morning I was crying and he said please start Lexapro. Eliz,do you think that pathologist would check for every other possibilities?

eliz45 profile image
eliz45 in reply to Saba82

You mean did the pathologist check for everything possible? Yes, I think your doctor is covering all the bases and so was the pathologist. I think your stress is a huge, huge factor, and if you get it under control, your whole body will calm down and then you will be able to see how much stress has played a role in your problems. Then you will see more clearly if anything more has to be done. Stay away from gluten and work on learning how to deal with your stress. That needs your attention first.

Saba82 profile image
Saba82 in reply to eliz45

Yes, I know… how do you feel 10 years after diagnose? Do you know your marsh score?

eliz45 profile image
eliz45 in reply to Saba82

No, I do not know what my Marsh score is. In fact I did not know what it was until I just looked it up. No one has ever said anything about it. How I feel is sort of complicated. I am 76 and never had any real issues with diarrhea until about age 57 maybe. So then I was diagnosed with IBS and left to flounder. But in around 2015 my GP did the blood test for celiac and it was positive. Then I went to a GI and had all the routine tests and colonoscopy and endoscopy. I had tiny ulcers, and gastric inflammation and so on. So I took the Rifaxamin and it did not work. So now I am 76 and decided to try for one last time to get help. So I went to a new GI and had all the tests again of course. This time there was lots of inflammation but my small intestine (celiac) was supposedly okay now. I had the hydrogen breath test which came back positive so supposedly I have SIBO. Took the rifaximin again and it did not work again. But the biopsy showed microscopic colitis. So I am taking a steroid, Budesonide, every day, and I am on an anti-inflammatory diet.

So how do I feel? Well, I think that if I just had celiac I would be so happy.-Gluten free living can become easy after a while. The SIBO might be gone. But the microscopic colitis has been devastating and I am almost house bound. It is very easy to have "accidents" in your own home, in your bed, etc. It is very unpredictable, and although Immodium does stop it eventually, you can't predict when. I have lost maybe 20 pounds. But right now I have started to maybe have some relief through the anti-inflammatory diet, the FODMAP diet, and the Budesonide. If you just have celiac, you will work it out and things will improve a great deal. Make sure to eat a very healthy diet and of course check for gluten everywhere.

Saba82 profile image
Saba82 in reply to eliz45

I’m so sorry that you had to deal with so much health issues but glad that you feel a lil bit better. Since I remember myself I’ve always had gastrities,everyone in our family does. I’m 39.But also as you said I’m hyper anxious as well,so it makes everything worse. For the last 2 years I gained weight cause I was eating so much ,still want to eat but control myself. I lost 10 pounds which is good. I need time to figure out what to eat what not cause I have 2 problems gastrities and celiac. I was more neurological symptoms rather than GI. Anyways it’s been 3 months for me hopefully it will get better by 6 months or a year:)Thank you

eliz45 profile image
eliz45 in reply to Saba82

I think you will do very well. Anxiety is a huge issue but you are young and smart and motivated. You will find that you can eat very well without gluten. Try Against the Grain bread. It is delicious. When you become less anxious, your gastritis will probably get much better. Everything is connected. Good luck!

Saba82 profile image
Saba82 in reply to eliz45

Thank you :)

Saba82 profile image
Saba82 in reply to eliz45

I’ve had the SIBO test in London 2 months ago and Methane was elevated. But I did it at home not sure if I was doing right so decided to have repeat one in the center of SIBO test

Regalbirdy profile image
Regalbirdy

Hi Sorry to hear of your ongoing problems. Unfortunately it’s an all too common occurrence to have to figure out additional dietary adjustments.

As Penel says, check out the FODMAPS info, which in part is about reducing the amount of high fructose foods consumed.

My guts calmed down such a lot when I went low-carb.

Good luck figuring things out. It may take time, but hopefully it’ll be well worth it.

Saba82 profile image
Saba82 in reply to Regalbirdy

Hi. What was your Marsh score?

Regalbirdy profile image
Regalbirdy in reply to Saba82

The hospital I went to in 2012 didn’t use the Marsh scale as a diagnosis tool (which is not too unusual in the UK). However my ttg readings were so high they were literally off the charts. It’s a while ago now, however I think I recall that the hospital stopped measuring their test results at 185 - and they didn’t know how far beyond that I actually was. To put this into perspective, a normal/negative result for that hospital was below 10.

Saba82 profile image
Saba82 in reply to Regalbirdy

My antibodies were negative. They confirmed it with positive biopsy and genetic panel…

Froggypam71 profile image
Froggypam71

I have had IBS all my adult life, been Coeliac for 15 years and had a Rectocele for about 10 years. Recently my Dr has prescribed Amitryptilene to calm my gut. Of course that has made me a bit constipated and so it is a constant balancing act with my diet to increase the fibre and not start urgency again.

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