Celiac And Ibs?

[NewNicole]

I was diagnosed 3 years ago with Celiac. The diet has improved my life but not fixed everything? My GI doctor ran another blood panel and performed another endoscopy with both coming out negative. So the diet has healed my intestines. However I am having major bloating to the point of people asking if I'm having twins. I have a very flat stomach and the severe bloating is very noticeable. Many drs have even run pregnancy test because they were convinced it was that. I believe my intestines are blocked but my GI says its IBS. He believes I have both Celiac and IBS. Does anyone else have this? It doesn't act like IBS in the fact that its not relieved with a bowel movement and have severe pain with the bloating. I have tried the elimination diet so I know it's not another food causing problems. Could it be IBS and does anyone have any ideas if I should try a different type of dr or where I can go for help. Thanks.

Nicole

[shadowicewolf]

IBS is a symptom of something.

 

How long did you do an elimination diet for? Do you keep a food log?

[NewNicole]

I only eat plan chicken...and I mean plain...plain potato and a couple vegetables. I have researched all the possible food issues and have really taken that off the plate. It doesn't matter what I eat. I can drink water and you can see the swelling as I drink. It only takes a few minutes from each sip for it to swell.

[lexibrowning]

I have a similar issue to what you are describing. My stomach hasn't been flat in over a year now because everything I eat seems to make me bloat. My doctor says that things like raw vegetables can cause IBS to act up (and thus making us bloat) as well as many other types of foods. IBS is different for everyone so really you will have to figure it out through trial and error.

I'm sorry you are struggling so much with this. I understand your pain.

[shadowicewolf]

I only eat plan chicken...and I mean plain...plain potato and a couple vegetables. I have researched all the possible food issues and have really taken that off the plate. It doesn't matter what I eat. I can drink water and you can see the swelling as I drink. It only takes a few minutes from each sip for it to swell.

have you had your thyroid checked?

[cyclinglady]

Several gastros diagnosed me with IBS.  Turned out that I had developed many food intolerances and issues with Candida after being on broad spectrum antibiotics for two years!!!!  Lots of probiotics, identifying the intolerances by using a food journal/allergy testing and doing a four day rotational diet. 

 

Gee, I have issues with pork, a friend with beef and another with poultry, including turkey and chicken.  So, consuming plain chicken might not be good for you at all!  What veggies are your eating?  I tested high for garlic (the entire onion family) and celery too!

 

Honestly, IBS is such a cop out.  One gastro followed up with me a year later (wanted me to be in a drug study).  Shocked that I was well (I had found a medical doctor who always tried to find the root cause of illness.

 

Bummer that I have celiac disease now, but that's life!

[NateJ]

This sounds very similar to my symptoms.

As of yet I haven't found anything lately that doesn't upset me.

How long has this lasted?

[NewNicole]

Shadowicewolf, I was thinking thyroid also. I have other symptoms that play into the thyroid, but I can't get the GI to listen. He insists no. My TSH is fluctuating but its not to the point that they will treat it.....Lexi and Nate, in this case misery doesn't love company. I'm sorry you guys seem to be having similar problems. My stomach is flat when I don't eat for a day or so. Once I start eating it bloats. I believe the food isn't moving through. I'm convinced a portion of the intestine is damaged, but I have no way of proving it. Plus I have no idea what test I can ask for to prove my theory. I'm also thinking it could be vitamin D. But again, my Dr. says no. Should I go to a different type of Dr? ....Cyclinglady, I have tried journaling to see if I could find a culprit, but I can't find anything that doesn't do it.how does the four day rotational diet work? That's one thing I could try.

[dani nero]

IBS can cause pain even when you're not having bowel movements. Some people get IBS because acids make their way into their large intestines which irritates them, and the intestines can hurt throughout the day and cause all types of pain. Buscopan will stop the intestines from being irritated and manage the pain considerably. If the pain stops after taking buscopan then it really could be IBS. 

It would be a good idea to find out because most docs won't do anything for you if it's IBS.. and if it turns out to be something else that isn't being addressed then it might be a problem. 

[NateJ]

a colonoscopy and/or endoscopy might work to find a damaged area if there is one.

I had numerous before I was diagnosed and would laugh when they told me the results. "yes sir your intestines are really inflamed, but we have no idea why."

The bloating and pain is hard to manage but I think I mentioned in another post that starving myself does work.

I some how manage with Imodium and pepto to at least make it to work each day, but its really not a good quality way to live.

I would ask for scopes, the prep is horrible but at least it could rule out any other problems you might have.

[shadowicewolf]

What about a leaky gut? I've heard of others on here having that issue.

[NewNicole]

Nate, that is a terrible existence. Most of my big issues went away when I went gluten-free. The bloating is more annoying than anything else. Although sometimes I do get what feels like back labor. I'm pretty sure it's because of constipation though. The Dr. prescribed a medicine that is suppose to work if its IBS but it was not helpful. And he won't do a colonoscopy. He says its a waste of time. Shadowicewolf, I'm not sure what leaky gut is. Is that something the GI would know or is that an alternative medicine issue?

[dani nero]

I'm also curious about leaky gut. I tried reading about it and didn't understand very well. Can someone simplify it?

[NateJ]

that's the most frustrating part for me. I felt so good after going gluten free in Mar of 2011. I had a social life and was doing great at work. Even got a new better job.

Now i'm back to where I was. sick all the time and stressed out loosing weight.

I could start a whole other thread about the quality of health care and doctors in general but i'm sure most everyone here has experienced what I have, trying to find decent care.

I've heard of leaky gut, but don't know exactly what it is. All the digestive disorders scare the heck out of me, and WebMD is like a bad horror movie. everything is cancer, everything. You have a headache, oh that must be cancer. I try to stay off that site as much as possible, just to look up drugs.

[NewNicole]

Nate, I know that story all too well. The medical field is a nightmare to try and navigate. I have learned so much over the last few years. As a child you are told a doctor will help you feel better and that is just not the case. I think most of them want to but they don't have the time and they need to just push you off to the next person. I've learned that the ER will not fix it. They can't diagnose you. Their job is make you live long enough to get to the next Dr. And the GP can only tell you which type of Dr. to go to. A few of my friends are doctors and even with friends in the field it's impossible to navigate, I am my own advocate. I learn as much as I can so I can understand exactly what my Dr. is telling me. And even with all that knowledge and help I am still sitting here looking like I'm pregnant with twins and no explanations. What I do know is that if you are losing weight you need to be worried about cancer. That is a very very common symptom. Although Crohns can also mimic those symptoms. If you are anemic and have weight loss you need to get help. That is a sign of bleeding. But I can also tell you I watched my father in law die from stomach cancer and although I had more pain than he did we shared very similar symptoms and I'm not dying. So you never know. I recommend looking on mayo clinic .com and really researching possibilities. It's reliable and easy to understand. Also the Merck Manual has everything but sometimes it's hard to understand. Then do what I've done here..ask others. I talk to everyone. I believe if we talk to each other at some point we will hit someone who has found the answers . Good luck. Hope it gets better for you

[NateJ]

Nate, I know that story all too well. The medical field is a nightmare to try and navigate. I have learned so much over the last few years. As a child you are told a doctor will help you feel better and that is just not the case. I think most of them want to but they don't have the time and they need to just push you off to the next person. I've learned that the ER will not fix it. They can't diagnose you. Their job is make you live long enough to get to the next Dr. And the GP can only tell you which type of Dr. to go to. A few of my friends are doctors and even with friends in the field it's impossible to navigate, I am my own advocate. I learn as much as I can so I can understand exactly what my Dr. is telling me. And even with all that knowledge and help I am still sitting here looking like I'm pregnant with twins and no explanations. What I do know is that if you are losing weight you need to be worried about cancer. That is a very very common symptom. Although Crohns can also mimic those symptoms. If you are anemic and have weight loss you need to get help. That is a sign of bleeding. But I can also tell you I watched my father in law die from stomach cancer and although I had more pain than he did we shared very similar symptoms and I'm not dying. So you never know. I recommend looking on mayo clinic .com and really researching possibilities. It's reliable and easy to understand. Also the Merck Manual has everything but sometimes it's hard to understand. Then do what I've done here..ask others. I talk to everyone. I believe if we talk to each other at some point we will hit someone who has found the answers . Good luck. Hope it gets better for you

Its a necessary evil sometimes. I've learned to avoid the ER at all costs because of what you have just said and the wait times are usually beyond insane with the horde of people that have no insurance that just have the flu or a cold virus.

I know i'm not anemic. never have been and I just had blood work done about 3 weeks ago that showed everything normal.

I have struggled with weight loss my whole life, so its more a chronic issue that my dr. says is from Celiac, which kind of makes sense to me from what I've read and understand what it does to my gut.

I have an apt Tues for a CT with contrast to check my gut and kidneys (always have had stones) then a GI apt on Aug 1 with a new one I've never seen. My old GI had no availability until Nov. So apparently i'm not the only one with this problem

So I feel like i'm doing the right things. I'm also eating fodmaps, taking my meds for BP and reflux, and I plan to stop coffee this week.

And I'll take all the luck I can get. I appreciate that. I hope it gets better for you too. Its nice to know there are people out there that understand what this is like and the toll it takes on a person.

I'm off to check out that website.

Thank you

[turningleaf]

Have either of you been tested for Crohns? I was just confirmed positive for Celiac and the doc mentioned that specific antibodies for Crohns are also elevated.  I didn't want to believe...still don't want to consider it....  I thought it was ridiculous to think of having celiac and crohns, but as I have continued reading, apparently it's not that uncommon.  I also have thyroid and adrenal issues.  I hope you both get answers soon.

[NateJ]

what would testing for Crohn's include?

I've had blood work and scopes in the past as weel as xrays and scans. but no one has every said that's what it is.

[turningleaf]

I'm still learning, but believe it's similar to celiac.  I wasn't looking for Crohns (don't feel like I have symptoms of it), but my doctor included something on my blood work that showed antibodies, similar to the celiac test, but these are specific to Crohns.  I believe it takes a scope/biopsy to confirm.  Are these new symptoms since your last scope?  I keep researching...it seems that one gets misdiagnosed as the other from time to time, and on the rare occasion confirm both diseases.