What Are Your Symptoms Like?

[Igg postive]

Tell me what your symptoms are like. Everyone with Celiac, Coeliac or Gluten Intolerance has different symptoms. I would be very interested to hear what your symptoms are.

My symptoms are bloating, stomach pain, at times very painful where my small intestines are. I have had a sack of fluid near where my gallbladder use to be (It is gone now). I could feel it when I laid on my stomach. My joints have been painful, use to think it was because of my hypothyroidism - but from reading this could also be Celiac. I have mostly constipation with some diarrhea. I have been previously diagnosed with IBS, lactose intolerance and pre-diabetes. Many times I felt like I was falling apart.

[Igg postive]

I hope no one takes this as noisey. I would like to understand what sort of symptoms others are suffering with. This information will be also others that are new to the web site trying to decide if they might have Celiac/Gluten Intolerance.

[Lisa]

Hold tight, Igg...weekends are very slow here.

Take a walk around this site. It's full of information.

[thegreatkatsby]

I can tell you my diagnosis came as a surprise, because one of my closest friends is gluten intolerant and my symptoms have been so different!

The manifestation that resulted in diagnosis was an extremely heightened sense of smell. It was so extreme that I could smell things that no one should have to smell (I'll leave it at that), as well as grossly exaggerated other smells (perfumes, body odor, chemicals, etc). I figured it had something to do with my migraines, but couldn't figure out why everything was getting so bad. My PCP was perplexed, and sent me to a neurologist who suggested testing for gluten sensitivity. You can imagine my surprise when she told me that my blood test results were the highest ones she had ever seen as a doctor!

[symptoms/etc I believe are tied to my experience with celiac include:]

fatigue

insomnia

trouble getting up in the morning

foggy brain

anxiety

mood swings (anger, depression, and other irrational fun times)

anemia (which might be related to trouble getting up in the morning)

low vitamin D

HEADACHES (daily headaches and migraines)

neurological symptoms including: visual disturbances, light sensitivity, noise sensitivity, smell sensitivity, touch sensitivity

stiff neck and shoulders

gallbladder attacks (not confirmed, but I'm pretty confident that's what they were)

pain in lower legs (orthopedic could NOT figure out why I was in so much pain when I exercised... nothing showed up on x-rays or bone scan or during physical)

dry skin (including a lovely flaky scalp)

alcohol intolerance

attention deficit disorder

eczema

bloating

abdominal pain

gurgling stomach

diarrhea

[symptoms/etc that *might* be related to celiac:]

heat/exercise intolerance (I think this is a histamine problem that I haven't figured out yet--on zyrtec daily to deal with it)

I'm sure I'm forgetting plenty of things... but these are the ones I could think of right now. The neurological problems were so bad that they greatly outweighed the gastro symptoms... to the point that I didn't think I had any gastro symptoms. As I have now been without a major headache since the diagnosis and subsequent switch to a gluten-free diet, I have begun to really notice how many awful things are happening inside of me. I also now acknowledge that the things I chalked up to "food poisoning", "too tired", "physiological manifestation of stress", "didn't settle right", etc, were more likely celiac symptoms and not the hundreds of excuses I made up to try to explain to myself what was happening to me.

I'm still waiting for my sense of smell to back off... it has a little bit, but I'm still annoyed by it. Time will tell.

[scottyg354]

I'm not exactly diagnosed and I'm back on gluten until the end of the month getting a colonoscopy (not for Celiac Testing) and testing done to test for intolerances and malabsorption.) Symptoms I'm having been dealing with for a long time are:

GI Symptoms (Had them for about 7 years!)

Diarrhea-Constipation-Flat/Ribbony Stools (Sometimes my stools are normal)

Mild Stomach Pain (mainly on left side)

Burning/Nausea Sensation (Hard to explain, I never vomit)

Noises all over the place (throat, stomach, lower back)

Foul Gas (Not all the time but a good 3-4 days a week)

Orange and Yellow Stools

Burping

Heartburn

Other symptoms

Anxiety/Mild Depression

Night time body tremors

Mild Night Sweats

Dry Knuckles, Feet and Elbows

Skin Boils

Constant Sinus/Nasal Issues

Heart Palps

High Blood Pressure

Elevated TSH Levels (8.5 - Hypothyroid)

Fatigue

Loss of Appetite/Increase in Appetite (Alternates)

Frequent Urination

I'm not sure if I have Celiac or not, but my doc agrees with me that it could be within the realm of possibility. He was originally pushing IBS-A on me, until i told him about my stool being different colors and my gas sometimes being awfully retched (like dead animal retched), the we decided to dig deeper.

[Marie1976]

The manifestation that resulted in diagnosis was an extremely heightened sense of smell. It was so extreme that I could smell things that no one should have to smell (I'll leave it at that), as well as grossly exaggerated other smells (perfumes, body odor, chemicals, etc). I figured it had something to do with my migraines, but couldn't figure out why everything was getting so bad. My PCP was perplexed, and sent me to a neurologist who suggested testing for gluten sensitivity. You can imagine my surprise when she told me that my blood test results were the highest ones she had ever seen as a doctor!

I have a heightened sense of smell too, I always thought it was because I'm hearing impaired (I've heard people who lose one sense have other senses heightened to make up for it). Is heightened sense of smell a common symptom of celiac disease?

I have not been officially diagnosed (blood tests only; waiting for endoscopy). I've been attributing all of my symptoms to other disorders: headaches (TMJ?), diarrhea (IBS?), fatigue (anemia?), mood swings and anxiety (PMS?) but if they are all related to celiac, it would be nice if they all go away when I eliminate gluten! But maybe I'm getting my hopes up too soon.

[shopgirl]

Eep. Well, I'm only five months out so it's difficult to say exactly what ALL my symptoms are but generally: anxiety (generalized with panic attacks), depression, extreme stress, constipation, bloating, migraines, hormonal issues, acid reflux, insomnia, exhaustion, weight gain (60 pounds), keratosis pilaris, seborrhea on scalp, mild eczema, hair loss.

Honestly, I'm sure there's more but those are the biggies. There might have been others that I just didn't notice because of the magnitude of some of the other symptoms. And there's probably yet more that haven't resolved themselves yet so it's tough to evaluate them. Safe to say I was all over the map as most of the people here.

(And, hey, I just realized today is my five month anniversary. I'll have to celebrate with a gluten-free something or other.)

[nuttmegs17]

I hope no one takes this as noisey. I would like to understand what sort of symptoms others are suffering with. This information will be also others that are new to the web site trying to decide if they might have Celiac/Gluten Intolerance.

Currently at the end of my rope. In the throws of trying to get it all sorted out. Cannot get into see a GI doc until the end of the month

Early - stomach issues

Gas/Cramps/Bloating (to where I looked preggers)

Constipation

Weight Stagnation (I'm athletic and my body no longer repsonded when I took up training which was unusual)

Intense Night Sweats

Chills during the day

Later all the above BUT everything magnified

Started swelling in my arms shoulders back after eating ANYTHING - could never pinpoint what it was

super cold hands and feet

New: Facial swelling in my cheeks and around my eyes

I went gluten-free to see if it would help and also cut out lactose and soy and say decreased bloating

Went back on Gluten so I could see the GI doc and have the tests (if it's not celiac, then I want to know what the heck is going on!)

Felt odd b/c besides a small increase in gas bloating, didn't see much HOWEVER

yesterday I noticed my lips are swelling and I feel extremely foggy this morning. also have been getting the chills and hot flashes through out the day. I feel like I'm crazy.

Called my GI guy to see if there were any cancellations...want to get in ASAP!

ANyone - can't my reg doc just order a test to test for antibodies? Why do I have to wait?!

[nuttmegs17]

Also, floating stool (so if TMI) sometimes oiley

[Igg postive]

I chalked up to "food poisoning"

thegreatkatsby I had the same thoughts for years before I had my gallbladder out. I thought I had eat bad food. Then that distress was happening every day and I had a HIDA test which showed my gallbladder was functioning less than 10%. Once my gallbladder was out my surgeon said my gallbladder was really diseased for a long time.

Thanks to the insights to your symptoms. I can tell you have been thought a lot.

[Igg postive]

exhaustion, weight gain (60 pounds), keratosis pilaris, seborrhea on scalp, mild eczema, hair loss.

Shopgirl,- The exhaustion is debilitating. I contributed my exhaustion to my hypothyroidism but I wondering if it is really GD too. My weight gain is baffling too. Could it be I am not absorbing the food/vitamins correctly? My appetite is always great. Maybe it

[shopgirl]

Shopgirl,- The exhaustion is debilitating. I contributed my exhaustion to my hypothyroidism but I wondering if it is really GD too. My weight gain is baffling too. Could it be I am not absorbing the food/vitamins correctly? My appetite is always great. Maybe it

[Igg postive]

Currently at the end of my rope. In the throws of trying to get it all sorted out. Cannot get into see a GI doc until the end of the month...

Called my GI guy to see if there were any cancellations...want to get in ASAP!

ANyone - can't my reg doc just order a test to test for antibodies? Why do I have to wait?!

I can really emphasize with you about the waiting. When I realized it might be the gluten making me sick it was hard to keep eating it (so I can have the biopsy). The waiting has been hard. Many times I have questioned whether I should really wait or go on the gluten-free diet and maybe feel better. The only thing is I remembered one of the members saying that later I would be happier to know for sure what was happening with the biopsy results. Hope the wait will be worth it.

Do you have access to a good regular MD? You might look up a good GD doctor in your area. The blood test could be ordered by a MD

[Igg postive]

Scottyg354- It

[scottyg354]

Scottyg354- It’s a wonder that your doctor does not give you the Celiac blood test panel? If it came back positive they could do the endoscopy at the same time they do the colonoscopy. That would save you a lot of money.

I can commiserate with you on the burping. I have too much gas in my stomach that it pushes up against my hiatal hernia. Ouch that is pain. My doctor gave me some medicine to open up my hiatal hernia so I can belch.

Let us know what they find.

I don't know why either. I'm just going with whatever he wants right now. He's a decent doctor, hears me out and doesn't blow me off like i'm nuts so thats a good thing in itself. He wants to make sure everything in my colon is alright then he is going to have me tested for other stuff. Was concerned about the color of my bm's and the smell.

Also, as for the hiatal, I have one too many and it causes me some grief. Not to bad though, occasional GERD flare up maybe some chest tightness but thats it, doesn't really trap gas. If i get trapped gas its usually on my lower end.

[Emma-Lee]

I get really bad painful stomach pains. I almost have to crawl into a ball and it gets so bad that I cry. It is gas. This has been so terrible and has even led to several emergency visits where they could not find anything wrong (before I was diagnosed of course). I also had constipation, not diarrhea- which made me think I could not possibly have Celiac. However, I learned this is NOT true that symptoms can really very. Also joint pain, tingling finders and toes. Sharp cramps in my calves- mostly at night. Sleepiness! Like I could sleep 10 hours easy....and want more....Also a low libido and moodiness. I am SO darn glad that my doctor found me to have Celiac because it is treatable and now that I am on my new gluten free diet I feel a lot better. I accidentally got gluten yesterday- and it was back to the painful gas...but it is a learning process.... I hope this helps

[Igg postive]

I get really bad painful stomach pains.

Emma-Lee, - It does help to know you have similar symptoms. Thank you! I have been suffering from the stomach pains for a while too. Just could not put a finger on what was causing them. Thank goodness my endo figured it out. Hopefully when I start my diet I will get relief too. It is nice to know I might have an end to this symptom.

[scottyg354]

Emma-Lee, - It does help to know you have similar symptoms. Thank you! I have been suffering from the stomach pains for a while too. Just could not put a finger on what was causing them. Thank goodness my endo figured it out. Hopefully when I start my diet I will get relief too. It is nice to know I might have an end to this symptom.

I never get severe stomach pains. Well except for tonight, but apparently milk caused that. I usually got odd stomach pains that are hard to explain.

[thegreatkatsby]

I have a heightened sense of smell too, I always thought it was because I'm hearing impaired (I've heard people who lose one sense have other senses heightened to make up for it). Is heightened sense of smell a common symptom of celiac disease?

I have not been officially diagnosed (blood tests only; waiting for endoscopy). I've been attributing all of my symptoms to other disorders: headaches (TMJ?), diarrhea (IBS?), fatigue (anemia?), mood swings and anxiety (PMS?) but if they are all related to celiac, it would be nice if they all go away when I eliminate gluten! But maybe I'm getting my hopes up too soon.

I think the heightened sense of smell is a symptom of, or a form of, a migraine. The worse my migraine symptoms get, the worse my sensitivity to everything gets... but I've dealt with the light/noise sensitivities for so long that I've adapted to dealing with them. Although I have an above-average sense of smell on a GOOD day... the extreme heightened sense of smell was something I typically only got in the days leading up to a migraine, or the days recovering from a migraine. Towards the end of 2010, the extreme heightened sense of smell never went away... and it was too hard to adapt. Everything made me feel sick and gave me a headache. I could smell everyone's breath, their shampoo, their feet, the detergent on their clothes... I could even tell when women were menstruating. It got to a point where I was in tears about it, so I called my PCP which led to eventual testing for and diagnosis of celiac by a neurologist who was looking for the migraine trigger (journaling hadn't revealed any clear patterns).

So, for me at least, the connection between celiac is there, albeit as a symptom/condition of a symptom/condition of the celiac reaction. Is there a name for that? Secondary symptom? It can be confusing.

The other thing I'm noticing now that I'm gluten-free is what I suspect are gallbladder problems. I always assumed my nausea was related to the headaches and migraine symptoms, but now that those have eased up, the stomach/abdominal problems are becoming more apparent. I recently posted in another topic about my hypothesis regarding a connection between a reaction to eggs and celiac (you can check it out here if you're interested).

As a side note--this may not be relevant but I think it's worth mentioning--my brother is hearing impaired. He had not been tested for gluten sensitivity.

[nuttmegs17]

I can really emphasize with you about the waiting. When I realized it might be the gluten making me sick it was hard to keep eating it (so I can have the biopsy). The waiting has been hard. Many times I have questioned whether I should really wait or go on the gluten-free diet and maybe feel better. The only thing is I remembered one of the members saying that later I would be happier to know for sure what was happening with the biopsy results. Hope the wait will be worth it.

Do you have access to a good regular MD? You might look up a good GD doctor in your area. The blood test could be ordered by a MD

[NancyL]

I can tell you my diagnosis came as a surprise, because one of my closest friends is gluten intolerant and my symptoms have been so different!

The manifestation that resulted in diagnosis was an extremely heightened sense of smell. It was so extreme that I could smell things that no one should have to smell (I'll leave it at that), as well as grossly exaggerated other smells (perfumes, body odor, chemicals, etc). I figured it had something to do with my migraines, but couldn't figure out why everything was getting so bad. My PCP was perplexed, and sent me to a neurologist who suggested testing for gluten sensitivity. You can imagine my surprise when she told me that my blood test results were the highest ones she had ever seen as a doctor!

[symptoms/etc I believe are tied to my experience with celiac include:]

fatigue

insomnia

trouble getting up in the morning

foggy brain

anxiety

mood swings (anger, depression, and other irrational fun times)

anemia (which might be related to trouble getting up in the morning)

low vitamin D

HEADACHES (daily headaches and migraines)

neurological symptoms including: visual disturbances, light sensitivity, noise sensitivity, smell sensitivity, touch sensitivity

stiff neck and shoulders

gallbladder attacks (not confirmed, but I'm pretty confident that's what they were)

pain in lower legs (orthopedic could NOT figure out why I was in so much pain when I exercised... nothing showed up on x-rays or bone scan or during physical)

dry skin (including a lovely flaky scalp)

alcohol intolerance

attention deficit disorder

eczema

bloating

abdominal pain

gurgling stomach

diarrhea

[symptoms/etc that *might* be related to celiac:]

heat/exercise intolerance (I think this is a histamine problem that I haven't figured out yet--on zyrtec daily to deal with it)

I'm sure I'm forgetting plenty of things... but these are the ones I could think of right now. The neurological problems were so bad that they greatly outweighed the gastro symptoms... to the point that I didn't think I had any gastro symptoms. As I have now been without a major headache since the diagnosis and subsequent switch to a gluten-free diet, I have begun to really notice how many awful things are happening inside of me. I also now acknowledge that the things I chalked up to "food poisoning", "too tired", "physiological manifestation of stress", "didn't settle right", etc, were more likely celiac symptoms and not the hundreds of excuses I made up to try to explain to myself what was happening to me.

I'm still waiting for my sense of smell to back off... it has a little bit, but I'm still annoyed by it. Time will tell.

HOLY MOLY! I could have written this! Except no ADHD. I've had every procedure done that could be thought of for my daily headaches and migraines. I finally had radio frequency ablation done which burned the nerves leading to my headache trigger and have had no headaches for about a year now but the nerve is growing back and I can tell they're coming again.

But the sensitivity to smells REALLY shocked me. I smell things that no one else can smell AND the heat intolerance is terrible. I'm also a chronic insomniac, dry skin, stiff neck and shoulders (although I've had bones fused there), anxiety, mood swings, anemia (which they did a uterine ablation for), etc. Those things I hadn't even attributed to gluten.

The other things I wonder about is I'm a kidney stone factory and have too high of calcium levels.

I am untested (well no biopsy and a negative C-panel) but the reason I'm gluten-free is I had diarrhea every day for 2 years. Stomach bloating and stomach pain that caused me to double over and made me think I was having an appendicitis attack. I also have joint pains, fatigue and "brain fog" and the inability to concentrate. I used to be really smart! And it seems like my intelligence is slipping away.

[ishy]

Extreme weight gain. No matter how healthy I eat I always seem to gain weight. IBS symtoms. I have been tested for celiacs which came back negative. So I'm now being tested for gluten intolerance.

[thegreatkatsby]

Extreme weight gain. No matter how healthy I eat I always seem to gain weight. IBS symtoms. I have been tested for celiacs which came back negative. So I'm now being tested for gluten intolerance.

I'm confused about the weight gain, because I'm significantly overweight and I always thought there was something fishy about it (because even though I don't exercise regularly, i'm a very "on the go" type and don't particularly binge eat or anything that would explain rapid weight gain--plus, after 3.5 years of skating 2-3 times a week for roller derby and GAINING weight... it was confusing). I've seen theories regarding "starvation mode" and the body holding onto calories due to malnutrition... but I'd be psyched if researchers could figure out the celiac/obesity connection.

[Igg postive]

Extreme weight gain. No matter how healthy I eat I always seem to gain weight. IBS symtoms. I have been tested for celiacs which came back negative. So I'm now being tested for gluten intolerance.

The weight gain for me is discouraging too. How are they testing your for gluten intolerance?