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Discussion Starter · #1 ·
Hi, I'm new to this forum and relatively new to IBS.

I have Celiac disease and have been gluten-free for almost 8 years. At the time, my major symptoms resolved pretty quickly, stopped feeling like complete crud when I ate anything, stopped loosing weight so quickly, anxiety decreased, vitamin levels improved... as long as I stayed away from the gluten (and there's definitely a learning curve when you start out), things steadily improved. Now I am very strict with my diet, rarely eat out. I've developed intolerances to dairy (lactose and cassein) and soy, so have cut them out completely as well.
(FYI:my usual celiac symptoms tend to be diarrhea, nausea and stomach cramps, malabsorption/not digesting properly, fatigue and weakness, anxiety, feeling cruddy no matter what I eat. It usually kicks in 2 or 3 days later, and can last anywhere from a week to a month or more)

About 3 years ago I started having pains in my lower left side. Not in my stomach, but right down in my colon. I couldn't trace it to having been glutened. I did notice that eating too many beans or whole grains did make it a bit worse, but in general I felt like something other than gluten (and my other intolerances) was causing problems.

I saw a GI, who was basically useless (I knew 5x more about Celiac than he did). I had an endoscopy done, which did show some gastritis/inflamation, but given that i had Celiac, that didn't seem too strange. I stopped worrying about it.

However, over the past couple years the mystery pains didn't go away. They were occasional but more frequent. It could last anywhere from a few hours to a few days. It might be a dull ache or stabbing pain in my left side, either before, during, or after a BM. I tended to be constipated (had trouble passing stool). When I have pain in my colon, trying to pass anything is literally a pain in the ass, to the point of sometimes feeling like I could black out. For someone who's used to stomach pain, and have almost constant low-level nausea, this was NOT NORMAL.

Also, I've had mystery pain and tingling sensations, usually starting in my hands but sometimes spreading to my whole body. Out of the blue, I might have a day where my muscles just don't seem to work, where I can barely walk for the pain and weakness in my body. This is sometimes along with pain my colon/constipation/etc, but not always. Sometimes I could blame it on something I ate, but not always. Rarely could I tie it to a known glutening. It does tend to be worse before my period.

Anyway, earlier this year, I had severe pain all over my body. I couldn't work.3 days of constipation and pain, only felt better when I FINALLY managed to have a BM. I saw the doctor and had bloodwork done. Iron and B12 were a bit low (but that's normal for me). I mentioned that I'd been having IBS-like symtoms (the pain and constipation), so she referred me to a new GI. I had a colonoscopy since there is a history of gastro diseases in my family (Celiac, Chrohns, ulcerative colitis). It was clean (though getting myself cleaned out was THE WOOOOOORST! Hope I don't have to go through that again anytime soon.)

General concensus: I could have IBS as well as Celiac. That's not common, as often one is mistaken for the other, but given that I've had IBS symptoms when I haven't been near gluten, and didn't have those symptoms when I did (I got glutened a few weeks ago. No fun, but no crazy colon pain). Since the colonoscopy, I've actually been doing pretty well, so the GI isn't too concerned. But I've read that symptoms can go away for months at a time only to start up again out of the blue, so it'll be back...

This is all to say: Does anyone else out there have Celiac and IBS? How do you manage both? How do you tell the difference? What kind of additional dietary changes have you made?

For everyone else, this is all new to me! Right now I'm trying to figure out what foods might trigger IBS symptoms, but since I can't handle a full-on elimination diet, I'm doing it in stages (this is No-Nightshade-November. So far, so good).
But I know the pain will be back, and I don't know what to do when it does. It can be dehabilitating, keep me home from work and unable to do much of anything. This feels like the calm before the inevitable storm. I just hope I can make it last a while.

Any advice, info, encouragement, etc, would be welcome.

thank you!
Peg
 

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Celiac is an autoimmune condition and the Paleo Autoimmune theory believes that all grains, legumes and white potato can cause autoimmunity as well.

PaleoMum explains this clearly in her series, so this is a good starting point

http://www.thepaleomom.com/the-autoimmune-protocol/

After this you could read from the founder of the Paleo theory himself, Loren Cordain.

http://thepaleodiet.com/autoimmune-disease-and-the-paleo-diet-case-studies/

If you are genetically susceptible, you can get autoimmunity anywhere in the body. Autoimmunity can attack the pancreas (diabetes), the nerves (neuropathy), the brain (Alzheimers) etc.

All grains can cross react with wheat. You know that Celiac involves the immune system. The innate immune system recognises certain amino acid shapes of dietary lectins (such as gliadin in wheat) as being pathogenic and will mount a defence against them. The trouble is these same shapes are also in harmless tissue in our body. This is how autoimmunity occurs.

Wheat, legumes (dried beans) and white potato all breach the intestinal wall. So food particles can leaky through into the blood stream, making your leaky gut worse.

Your doctor won't tell you any of this which I think is disgusting. The science is there.

https://www.quora.com/If-wheat-legumes-white-potato-causes-auto-immunity-why-dont-doctors-warn-people-about-them

There is a lot of reading and you have a tough diet ahead of you.
 

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Discussion Starter · #3 ·
I'm pretty sure the "cross-reactivity" thing has been disproven, hasn't it? (the research was connected to a single lab that was selling the testing.) If other non-gluten proteins were causing the same immune response as gluten, then I would still have damage to my vili from eating this "cross-reative" foods, which I do not. May of the foods on that list are things that people with Celiac often have intolerances to (I can't do dairy or soy, and have trouble with many whole grains). They don't cause the same damage as gluten, but they can cause inflamation, leaky gut, neurological symtpoms, and can impede healing.

But that's beside the point.

I didn't start developing IBS symtoms until a few years after going gluten free. At first I of course assumed that it was just another Celiac symptom, but now it looks like that's not the case. Now I have to figure out not only which symptoms are which (what is caused by accidentally ingesting gluten from cross-contamination, or a small amount of soy or dairy, or if something else is aggravating my IBS symptoms). Parsing it all out is very frustrating.

I'd just like to know if there's anyone else in the same boat.
 

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Hi. This is my first ever post on here and I'm looking forward to being part of this big community.

I came to the conclusion about Celiac and IBS in a reverse manner. I had bad diarrhoea after eating a cake I'd made and went to see the doctor. He suggest I cut out wheat, which I promptly did. The effect was remarkable. I felt so much better and I had less gas etc. However, I still had other symptoms.

Just last Weds (9 Nov 2016), following a colonoscopy, the consultant has confirmed I have Gluten sensitive IBS. So whether you have Celiac or not, Gluten could play a big role in IBS.

I'm on a very steep learning curve with all this, but I knew I had problems with my gut.
 
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