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Hi all,

It's been a while. Things have been ok in the gluten department, but over the past couple years I've been developing distinct IBS symptoms: bad pain in my lower left side (from a dull ache to stabbing pain), pain in colon when trying to BM, constipation (generally), occassional blood in stool, and sometimes overall body pain that can come out of nowhere and make me barely able to move for several hours to a couple days. This sometimes happens when I can trace it back to a possible glutening, but often comes out of nowhere, and tends to get worse the week before my period.

So, a couple months ago I had once of these instances of horrible all-over body pain that sent me to my doctor (lasted for 2 days until I finally was able to have a BM). Bloodwork showed somewhat low iron and B12, so have been trying to supplement more (B12 has helped with the nerve pain/aches/fibromyalgia-ish symptoms). My GP also referred me to a GI, who recommended I get a colonoscopy to rule out anything like IBD, ulcers, etc.

I had the colonoscopy yesterday (the prep was HORRIBLE! I was up half the night trying to get down as much as I could. Thankfully worked well enough to do the procedure). Got knocked out (best part!), and when I woke up I did have so really really bad cramping from the air they push through your bowels. Super painful (somehow managed to get home under my own power, but it took a few hours to go away). When the GI came to give me the results, I said I was having painful cramping, and he says "well, that's normal for someone with IBS." That's what I thought it would be, and he seems to agree. My colon was normal otherwise. I'm booking a follow-up to discuss what this means.

My real question is: can you have Celiac AND IBS? It would explain the mystery aches, my seemingly increasing food intolerances, the killer pain, constipation, etc. When I get glutened, it's more likely to be bloating, the big D, anxiety, general tiredness, brain fog, etc.
It seems to generally thought to be one or the other, but does anyone here have both? 
Also, any tips for managing your IBS (I know, is different for everyone), what to ask the GI when I see him next, etc.

In the meantime, I'm upping my probiotics and digestive enzymes, taking all my vitamins, increasing soluble fibre, and am going to try to cut out nightshades completely for a while (emphasis on "try") since I've noticed they bother me. Not looking forward to another bumpy road of figuring out what works and what doesn't, but at least I have a better idea of what's going on.

Any information or advice appreciated.

Thanks!

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Yes, you can have both celiac & IBS. There are a handful of diet approaches for IBS. One being FODMAP. However; most think you have to avoid all high FODMAP foods forever, which is not the case. There is a reintroduction phase, but it is very specific. I recommend seeing a dietitian that specializes in GI nutrition, which should include knowledge of IBS. I hope this helps. I heard a statistic the other day that for every 6 people we walk past, 1 has IBS. A very large number!

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Fibromyalgia is also worth considering.  IBS often goes hand in hand with fibromyalgia, the way celiac and thyroid disease are connected.  Ten years ago, fibromyalgia was thought to be strictly psychosomatic, but now doctors are realizing that's not true, that it as real as lupus, ms, celiac, and any other autoimmune disease.  Oh, and a lot of fibromyalgia sufferers find that avoiding gluten helps to minimize their symptoms.

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Hi Pegleg

My gastroenterologist here in the UK said to me that he thought my lower left abdominal pain was IBS, possibly related to dairy.  I had all sorts of tests - ultrasounds, gynaecolgical, and finally a sigmoidoscopy. All appeared to be fine.  My specialist then told me to just buy lactofree products i.e. dairy products with the lactose removed. That didn't work. Then I tried three weeks of absolutely no milk at all and I found that it was dairy that was causing the pain and my IBS.

The pain was so bad at times I felt that there had to be something really serious going on - but thankfully it was just one food. All the best with your quest to find out your trigger.

 

 

 

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I am sorry that you are ill!  First, did they take biopsies to see if you have healed from celiac disease?  Symptoms for celiac disease  can change.  Second, did they rule out other AI issues, like Crohn's?  My niece was scoped from both ends.  All kinds of tests.  All negative.  A pill cam finally caught her Crohn's (she also did not present with typical symptoms).    Not saying that you have Crohn's or Fibromyalgia but I would not accept an IBS diagnosis.  

 

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Hi Peggy,

I don't have an answer, but am having some similar struggles myself.  I'm so frustrated and just wanted you to know that you are not alone!  I hope you get something figured out soon.  Please report back on nightshade elimination as that is what I'm considering trying....I'm really sad at the thought.

((((Hugs))))

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Thanks, everyone.

Yes, I know IBS is kind of a catch-all, or diagnosis of exclusion, but it does fit the bill. I have been, and am continuing to be, extra careful about possible gluten cc. I did get a bad glutening earlier this year while on vacation, which floored me for about a month and probably triggered some of the bad IBS symptoms I had at the time.  It's always a possibility that mystery glutenings or lingering damage are triggering IBS-like symptoms, but I'm actually better at avoiding gluten than I used to be, and the IBS symptoms have gotten worse over the past few years.

The colonoscopy I just had was to rule out Crohn's, ulcers, etc. The scope didn't pick anything up, and honestly my symptoms don't match. Not sure if I want to have another endoscopy to have them poke around in my stomach and not see anything.

I suspect that fibromyalgia might also be part of it (the random days when I ache all over and can hardly move). Only recently did I learn that fibro and IBS are often connected. LIGHTBULB!

I also don't eat dairy or soy, avoid eggs, can't eat more than a handful of beans/legumes at once, whole grains are hard to digest, too many nightshades usually trigger joint pain/neuro symptoms, etc etc. I don't want to have to do a full-blown FODMAPs diet, but will if it comes to that.

I still have to see the GI again. IBS or not, hopefully we can figure out some ways to manage the symptoms and deal with the pain when I have it. It's not so much about having a diagnosis as acknowledging that it could be something separate from the Celiac Disease and that I have to do much more than just not eat gluten. Also, if there are any drugs that will help the pain when my gut decides to go into stabby spasms, that would be nice.

I've actually been feeling ok the past few weeks (aside from the colonoscopy horror), and ok so far since the scope ( maybe having your colon flushed out is a good reset button), so doing my best to keep it that way.

Anyway, will update when I know more. Keep adding suggestions if you have anything.

Thank you!
Peggy

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Hi Peggy,

I'm so glad that you've shared where you're at...it's helped me.  I too was glutened on vacation...mine was in early June.  The terrible symptoms have long resolved, but by looking at my food and symptom diary I can see that it's been since that time that I've had my current issues.  

Like you, I am soy free.  I was dairy free for a while, but with my kidney stone issue earlier this year I had to add in more calcium.  I also can't do beans, oats, broccoli, cauliflower, cabbage and no whole grains other than rice.  Sigh...

I've been considering either fodmaps, eliminating nightshades, eliminating dairy or something like it.

I will be really curious to see what you end up doing and how it works.  It's so frustrating, isn't it?

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After almost 4 yrs gluten-free, I still have severe abdominal bloating, pain all over and spots of increased inflammation periodically.  We are soy free, dairy free and gluten free in our house.  Husband's lifelong IBS got dramatically better when he went gluten-free with me and then dairy, chocolate, coffee and soy free eventually.  I have Sjogren's disease as well... which is so much more than just dry mouth and eyes.... at least in my case.  When you have 1 autoimmune disease it's pretty common to have at least 1 more.  We just have to keep being detectives to figure it all out.  Doctor's don't believe all the symptoms we present with and can't put all of it together often.  Decreasing pain is the name of the game, ultimately.  Keep Pluggin' along!

Debbie

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Pegleg84,

To answer your question about IBS and Celiac disease it not well understood that their is a continuum of disease often.  ONE can lead to the other in time.

Co-morbidity is hard to prove but new search is noting it does happen more than doctor's realize.

See this link from Celiac.com https://www.celiac.com/articles/24058/1/Large-Number-of-Irritable-Bowel-Syndrome-Patients-Sensitive-to-Gluten/Page1.html

where they say Large numbers (84%) of IBS patients are sensitive to gluten.

Quoting "The doctor’s admit as much saying this IBS diagnosis “may delay “an effective and well-targeted treatment in (IBS) gluten sensitive patients”

The Celiac Posterboy blog summarizes these findings https://celiacposterboy.wordpress.com/2015/09/22/many-ibs-patients-found-to-be-sensitive-to-gluten/         

You might also want to lay off your dietary fibers for a while because the main ingredient in Metamucil is known to cause many of the symptoms you describe with your IBS diagnosis.

See this drugs. com link to see the side effects of Pysllium husks.

https://www.drugs.com/cdi/metamucil.html

While it might be counter intuitive at first to scale back your dietary fibers it can be helpful to do a diet elimination of possible IBS triggers when there is any doubt for a month at a time to see if "hidden" dietary triggers might be the cause and you might be doing more harm than good despite your best efforts.

A month off of your fibers then reintroduction in your diet should be enough to tell if any of your symptom's improve in that time.

** This is not medical advice and should not be considered such. Results may vary. Always consult your doctor before making any changes to your medical regimen.

Good luck on your journey,

Posterboy,

 

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The GI suggested I try supplementing fibre to help the constipation (GI thought that might be the problem at the time). I got some psyllium husks, but haven't been very diligent in taking it. kept at it for a couple weeks and while I did notice things were moving better, definitely no improvement in other symptoms (dropped off taking it cause I'm lazy). I did read that added fibre might not be good for IBS symptoms (I can't handle too much naturally high-fibre foods anyway). I might give it another shot and see what happens, then I'll at least have something to report back to the GI (it helped, or, it caused more pain).

I have been better at taking my probiotics and digestive enzymes, though, and so far so good.

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UPDATE: ARGH!
So, I've been doing pretty well the past month or so, which is a good sign since it's been a stressful fall. Last weekend we were at a camping retreat thing, catered by the camp staff. They did their best to take care of the gluten-adverse, but I probably should have pushed for greater caution, since the gluten-free items were in the buffet next to wheaty stuff, something I normally avoid, and BAM! I don't know whose crumb ended up in my foods but definitely some glutening symptoms the past week. Nothing serious, but fatigue, bloating, nausea, stomach issues, bad digestion, irritability, etc (but, notably, no pain).  Of course, it was also the week before my fun lady time, when I've noticed my GI symptoms tend to be worse, and now, for the first time in over a month, some definite IBS-like symtoms (ie: BM pain).

SO, up comes the question again: are my IBS-syptoms just part of my Celiac disease, or is it a separate thing that can be triggered by a glutening? SO CONFUSING!

In any case, I see the GI on Friday, so we will discuss. I don't want to rule out IBS on top of everything else, because non-gluteny things definitely make it worse (whole grains, beans, etc), but it's probably pretty closely related.

Oh, and I did not get back to using the fibre. BUT I have been trying to take my probiotics and digestive enzymes more regularly, which seems to be helping, though I've slacked off recently and that could be making a difference. We shall see.


 

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Update #2 - Saw the GI last week. He thinks that it's most likely IBS on top of the Celiac, but didn't seem too concerned because my symptoms haven't been too severe, and I've actually felt better in the past few months. It'll be back, though. Just a matter of time.

In the meantime, I'll be reading up and figuring out what else to cut out of my diet. Saw my GP today and she was actually more helpful, suggesting probiotics and trying some version of the low FODMAPs diet (I'm feeling that out a bit at a time). Also have to keep up on my iron and B12 supplementation (got really low back when I had that horrible body pain/fibromyalgia/whatever it was incident).

So, aside from emotional breakdowns due to world events, we're doing ok. I've been sticking to my no-nightshade-novermber challenge, but getting really excited to wolf down some potatoes in a few weeks.

(also, anyone know a good IBS forum?)
Thanks for the help and advice and encouragement, always.

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Did your GI order a celiac antibodies test?  That might really determine if you are still in a flare-up.  Last summer, I got glutened (have no clue as to the source).  Went to my GI over four weeks later and my DGP IgA was off the charts.  I continued to feel really bad (vomiting, passing out, hives, rashes, swelling, stomach pain, the works....) for a total of three months, became lactose intolerant during those three months and lost weight.  Everything stablized and I started to gain weight at six months.  

So, how can your doctor just assume anything without some physical proof?  All celiacs should be tested annually per the leading celiac researchers and the American and British GI Associations.  

 

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Hm, it's always possible, and I'll consider that the next time (hopefully not for a while!)  I have a flare up of IBS-symtoms (PAIN!).  Problem is also that I don't have a baseline because my bloodwork was negative before I went gluten-free (long story. don't want to get into it), not sure if anything would show up.

In any case, I'm not entirely convinced that the IBS symtoms are caused by separate triggers, or if they could be another symptom of getting glutened. Parsing it all out is going to be a long slow process, it looks like.

Also, glad you're feeling better! That sounds horrible! A friend of mine (also celiac) went through something similar recently, got her endoscopy redone and everything and was still off the charts. Not sure how great her diet was though, but she seems to be improving.

 

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celiac disease or NCGI has been called a chameleon by Dr. Fasano because the symptoms change and vary from person to person.  My glutening last summer occurred days before my vacation.  I suspect two "gluten free" products, but I will never know.  I do want to point out that my symptoms were so different from when I was diagnosed (anemia and no GI symptoms) which is why I followed-up with my GI.  He suspected SIBO, but my antibodies test revealed a gluten exposure. 

I have been providing gluten-free meals to my hubby for 15 years (three of those for me too).  I know that even a seasoned celiac can make mistakes or get exposure from cross contamination.  It happens and way more than we would like to see based on continued damage even on a "gluten-free" diet.  (Most recent is 20% of kids are not healing which shocked researchers).   I am sharing this because you might be getting exposed to gluten despite your best attempts to avoid it.  

What is also did not know about myself is that an exposure can make me sick for three months.  Yes, three months starting with some severe symptoms with anxiety, neurological, and food intolerances lasting the longest.  No wonder I have become OCD about gluten!  So, Maybe you simply need more time to heal.

i hope you feel better soon.  

 

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Irritable bowel syndrome is distinct from irritable bowel disease which usually includes ulcerative colitis and Crohns. Yes, you can have both celiac disease and IBS.

I occasionally have left-sided pain that is relieved upon a BM, and I occasionally also have D (once a month maybe, if that), and have recently written about it on these boards. I’m thinking that the diarrhea I do have may be a result of IBS. Here's why: it seems the more I’m sitting at home, ie on the weekends, sitting and eating, the greater the frequency of stools, and the fattier they get with each BM. Whereas, during the week, I eat (less), get up and go to work, don’t eat as much while I am at work and don’t have BMs, and if I do, they are not fatty - and I do not have D. All of which is to say that I think it's possible that the fattiness is caused by the increased transit time of IBS, leading to more water in the stool,  less time for the fat and water to be absorbed.

Now, what is causing the IBS? (First of all, the medical line is, no one knows.) I am fairly certain I am not getting glutened. However, on the weekends, I will eat a high fiber, high protein meal followed by hours of sitting, consuming coffee with milk and sugar. I think the problem or the issue lies in what I am consuming. I tend to think the culprit is the milk. (The coffee is not always caffeinated.)

FWIW, I've read that most floating stools are not caused by an increased fat content - not to say the floating stool is free of fat, but from what I'm reading, the cause for floating is gas.

On 9/17/2016 at 5:45 AM, cristiana said:

My specialist then told me to just buy lactofree products i.e. dairy products with the lactose removed. That didn't work.

Lactose free products don't really do it for me either....why not??

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Pegleg84,

This is from another post but I wasn't sure how to quote it. From another thread from my answer docs are clueless

"I agree with GFinDC.  Find you some BetaineHCL capsules.

I suggest starting with 3 or 4 capsules at a time.  Some people need as many as 6 at a time but you can usually count down to one if you have a "warm sensation" in the area of your stomach after you get used to the sensation you will know what to expect.  If it gives you heartburn bump it up another capsule or two.  If it burns like someone is putting out a cigarette in your stomach reduce the amount or eat something.  If it goes away when you eat more food you have reached the upper limit of good/healthy acid level.

People usually don't have to take them forever just for a while until they stomach is able to produce it's own acid again.

All the stress you have had could of made you low or already aggravated the condition and made it worse.

See this link from Dr. Dana Myatt or search for "Gastric Function Test" and she explains how to self test for low stomach acid....

https://www.drmyattswellnessclub.com/GastricAcidFunction.htm

It involves taking BetaineHCL capsules.

Quoting Dr. Myatt she says

"You can perform a gastric acid self-test at home using some betain HCL capsules taken with meals. If digestion improves - bingo! You’re hydrochloric acid deficient. If you did not have any digestive complaints but you don't feel anything with added HCL, it is highly likely that you have a stomach acid deficiency and would benefit from taking betain HCL with meals.

This issue of low stomach acid is central to so many diseases that I recommend a gastric acid self-test to EVERYONE over age 50 and anyone under age 50 who has any medical complaint related to nutrient deficiency."

See her page again on low gastric function https://www.drmyattswellnessclub.com/GastricAcidFunction.htm

and notice some of the diseases associates with low gastric function aka low stomach acid.

If you get a burning sensation between meals (that goes way when you eat something) cut back on the number of betaineHCL you are taking because you have over done it and your stomach acid is too high.

Otherwise it is certainly worth a try. 

**** this is not medical advice but it did help some of the GI problems I was having.

I don't take BetaineHCL now but I did for a while and many of my GI problems are now better.

And I hope it helps you  and you will let us know if it does."

It is me again.

To answer plumbago thought about floating stools.   It is not from fats in the stool though you sometimes hear this misnomer it from excess gas that lifts the stool out of the water.

The celiac posterboy summarizes why this so in his post https://celiacposterboy.wordpress.com/2016/02/07/put-your-gi-symptoms-in-remission-do-you-burp-the-north-south-process-of-digestion/

Jennifer Scribner at the Bodywisdom site also has a lot of good information about why this happens.

Taking BetaineHCL capsules should cause your stool to sink to the bottom of the bowl a sign of completed digestion.  See above to learn how to take BetaineHCL for improved digestion.

I hope this is helpful.

Posterboy,

 

 

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21 hours ago, plumbago said:

Lactose free products don't really do it for me either....why not??

Interesting plumbago - I wonder too.  When I first tried giving up milk things really improved so I then thought I'd buy some lactofree milk, as I did miss it.  TMI but it literally worked like a laxative, and very quickly!  I can't help wondering there must be something else in milk.  Or do you think they don't quite remove all the lactose?  Maybe they are allowed to say it is lactofree if it is under a certain level.  I'd love an answer on this one, too.

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26 minutes ago, cristiana said:

Interesting plumbago - I wonder too.  When I first tried giving up milk things really improved so I then thought I'd buy some lactofree milk, as I did miss it.  TMI but it literally worked like a laxative, and very quickly!  I can't help wondering there must be something else in milk.  Or do you think they don't quite remove all the lactose?  Maybe they are allowed to say it is lactofree if it is under a certain level.  I'd love an answer on this one, too.

Celiacs are often lactose intolerant when first diagnosed.  This may resolve if you are not genetically pre-disposed to being lactose intolerant (bing chunk of world population).  You can also have issues with milk proteins, like casein.  Nothing to do but avoid it.  There is no casein free milk product.  ?

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23 minutes ago, cyclinglady said:

Celiacs are often lactose intolerant when first diagnosed.  This may resolve if you are not genetically pre-disposed to being lactose intolerant (bing chunk of world population).  You can also have issues with milk proteins, like casein.  Nothing to do but avoid it.  There is no casein free milk product.  ?

Good point. I ought to say that I am back to milk now, but not every day - so I think it was to do with blunted villi and recovery that was causing symptoms.  I can get away with drinking so much - then I get bloating and mild pain, so I give it a miss for a while then go back to it.  But I think gradually it is ceasing to be a problem.  That said, I never had a problem with hard cheeses  like cheddar, even when I was at my worst, so I'm wondering, apart from casein and lactose could there be anything else?

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11 minutes ago, cristiana said:

Good point. I ought to say that I am back to milk now, but not every day - so I think it was to do with blunted villi and recovery that was causing symptoms.  I can get away with drinking so much - then I get bloating and mild pain, so I give it a miss for a while then go back to it.  But I think gradually it is ceasing to be a problem.  That said, I never had a problem with hard cheeses  like cheddar, even when I was at my worst, so I'm wondering, apart from casein and lactose could there be anything else?

Old age!  ?. Or you can blame zonulin (protein gatekeepers/permability) that may contribute to inolerances.  

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4 hours ago, cyclinglady said:

Celiacs are often lactose intolerant when first diagnosed.  This may resolve if you are not genetically pre-disposed to being lactose intolerant (bing chunk of world population).  You can also have issues with milk proteins, like casein.  Nothing to do but avoid it.  There is no casein free milk product.  ?

Yes it could be casein. For me, I also think it has to do with the sugar in milk, which is considerable.

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4 hours ago, cyclinglady said:

Old age!  ?. Or you can blame zonulin (protein gatekeepers/permability) that may contribute to inolerances.  

Is zonulin triggered by milk? I thought it was mainly gliadin.

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