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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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KaitlinP

Abdominal Muscle Cramps and Spasms, Help!

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Hi everyone! I am a 23 yo female and was diagnosed Celiac in January 2016 and have been gluten free since then. My IgA levels are down to 4 and my Celiac is very under control. However, I recently have been dealing with a lot of unexplainable pain and discomfort that no one can seem to explain to me and wanted to see if anyone has experienced anything similar. For about a year, I have been occasionally getting severe abdominal pain that seems to be concentrated in my rectum. It starts by feeling overall icky, crampy and sort of like I have "twinges" in my rectum. It feels like maybe I need to have a bowel movement but I dont, and if I do it doesn't help the pain. So I feel bad, and then all of a sudden I feel like I am being stabbed in my rectum. The stabbing comes and goes but causes me to like roll around on the floor it is so painful. This sometimes only happens once and is over in 20 seconds, but generally it is an all day thing and lasts like 8-10 hours. These generally have been coming 2-3 times per month one day apart. They seem to come about every four weeks (not during my period or ovulation though) and naproxen and heat helps some, so I thought it was maybe OB/GYN related (they also started shortly after I switched for BC pill to an IUD) but I have seen two OB/GYNs and both have no idea and think it is gastrointestinal, maybe gas pain of some sort that is possibly triggered by hormones related to my cycle. However my gastroenterologist is also stumped and thinks its related to my uterus cause it seems to be somewhat cyclical. Anyway they're horrible and I can't figure out what they are, they don't seem to be related to what I eat (though I should probably start tracking) or a particular time of day. Sometimes they seem to come while I am exercising, but sometimes they wake me up in the middle of the night. I should also add that I have no GI symptoms involved with these painful episodes, my bowel movements seem completely normal, no gas or anything either.

Also, the last two days, I have woken up in the middle of the night with the feeling of being bloated and crampy. Not painful per say but extremely unpleasant. Again, I'm not on my period so idk what is causing this, especially cause both times it woke me up and I am a deep sleeper. Now, for the last 30 minutes I have been having non-painful muscle spasms in my left lower abdomen. It feels like a flutter, if I put my fingers against the spasm I can feel it distinctly. Again it doesn't hurt, but feels weird and I've never had a muscle spasm there before.

If anyone has ever had any of these symptoms before or has any idea what me going on I'd be very grateful! Is it possible its related to glutening? Since I caught my Celiac really early I don't really know what my symptoms of being glutened are, the few times I know I have been I don't get diarrhea but instead extreme bloating, acid reflux, and overall feeling really crappy and anxious. I have a whole host of health issues these days that have been causing me a lot of stress (I'm in medical school and don't have time for these debilitating pains!) and it would be awesome to have some answers.

 

Thank you all,

K

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Oh how awful, and it sounds like there may be a CQ deficit among your medical helpers!, CQ being curiosity quotient. But maybe they’re researching it.

It’s very difficult for me, too, to understand when I’ve been glutened – to narrow down the culprit, or even if there is a culprit. I haven’t heard of rectal pain, but that shouldn’t mean too much, as I don’t have a lot of experience with other people’s celiac disease, just my own. (Also, you say it’s abdominal but then say rectum, so I was a little confused.) The only things I could think of as possibilities were: Ovarian cysts, UC, diverticuli, the IUD, referred pain, a cut in the anus (perianal abscess), or hemorrhoids. A quick google of women using IUDs did bring up similar experiences as yours, most often of which was attributed to nerve pain, and in one case a wandering IUD, but most likely you know yours is still there. In a comment, someone suggested the vagus nerve was to blame, but I don’t think the vagus enervates the rectum, but I’m not 100% on that. It would be helpful to know if you are having other symptoms.

Personally, and hopefully this is not tmi, but I get a left-sided lower abdominal pain/cramp occasionally (now about once a month) when I need to have a BM. Though I’m not certain what’s causing it, I tend to think it is a diverticuli.

Lastly, and you knew someone would say it, could it possibly be stress-related?

Plumbago

 

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Welcome. I remember that pain all too well. It is excrutiating.  I haven't had it since I was diagnosed, thank goodness.  Being woken in the night by abdominal pain can be a sign of glutening. My GI said that if he know that was happening I could have been diagnosed much sooner. I did tell him but he didn't listen. You say you had little symptoms prediagnosis but it isn't uncommon for symptoms to escalate with a glutening after we have been gluten free.  The only suggestion I can give is to reaccess what you are eating and where. You mention being a med student. That can lead to very busy schedules and make it hard to eat as safely as we need to eat. What is your diet like? Do you eat at a school or hospital cafe frequently? Can you start to keep a food and symptom log? Since gluten reactions can be delayed it can be hard to pinpoint what has gotten us when we have been CC'd. This may not be celiac related but a diary and symptom log may help if it is gluten sneaking in.

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Is it the rectum or do you think it's more in your tailbone? As I get intermittent tailbone pain that is excruciating a couple times a month.

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6 hours ago, ravenwoodglass said:

You say you had little symptoms prediagnosis but it isn't uncommon for symptoms to escalate with a glutening after we have been gluten free. 

I think this is an interesting observation, and definitely worth exploring!

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I also second the refered pain. I get many symptoms as my situation went decades undiagnosed despite gi and then some symptoms. I have had 20 plus years of lower back pain, left hip, and tail bone pain  connected to gluten and nutritional deficiency as a result of. It was a regular occurance while eating gluten, it improved being gluten-free 4 years, returned with a vengeance due to a restaurant error (despite knowing I was gluten-free and prediscussing,) and post gluten 2016 challenge lingers. Slowly improving.

It will go , I know but it takes time. It requires me to exercise, strengthen which detoxes the area helps facilitate healing etc, and requires b vitamins, magnesium, and vitamin d in addition to other things I very quickly get depleted of when glutened.

Its a viscious slippery slope once cc as this is an "old" symptom.

spefically I only had massive rectal pain during one of my c sections when undiagnosed- a bunch of issues occurred there. My pregnancy , labor delivery stories as someone undiagnosed are best left unsaid.   With someone actually physically pulling on my gi tract as one very ill lady and undiagnosed issues arise.

if you've not had surgery or trama to area I suggest verifying no gluten slipping in, another intolerance pop up, or nutrient deficiency are good places to start.

 I hope you get relief and comfort soon.

Good luck

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