What Are Your Most Common Symptoms?

[Chantalle]

The diarrhea has to be the most intrusive of the symptoms I get. However, the opposite has been common for me for years. Bloating and gas is second in the most annoying dept. When I get pain, which for years I believed to be from IBS, (and still could be) that's pretty bad. I also get a sick feeling in my head, headaches and a kind of spacey feeling, especially after I eat.

Were any of you ever diagnosed with depression? I was, but there was a very, very good reason for it at the time so hard to say it is related.

Just wanted to get an idea about what the normal symptoms are; or general symptoms across the board I guess.

Chantalle

[angel-jd1]

Someone (Mariane I think) Used to have a very comprehensive list of symptoms. She has posted it on the old board. I sure wish it could be posted again...it was quite a list and really a great one!!

-Jessica

[lovegrov]

There are tons of different symptoms. While we hear and talk a lot about the diarrhea, the most common one for adults is fatigue. I never had the diarrhea myself but was severely anemic.

richard

[celiacfreeman]

irritability

forgetfulness

anemia

under eye circles

poor night vision

frequent urination

no dreaming

weakness

[celiacfreeman]

irritabilty

under eye circle

waking up to go to the potty

no dreams

poor night vision

tired

kind of weak

These were all normal to me, so I didn't realize they were symptoms

until I went a few weeks without wheat. My biopsy show no villi.

When I was told I had this strange thing called Celiac Sprue

I said " BUT I FEEL OKAY NOW" well now, after 120 day with no wheat

I feel 20 years younger, I obviously was not feeling okay, but had no comparsion.

Told I look 10-15 years younger by serveral people hurray hurray hurray

[Chantalle]

Celiacfreeman - I fogot about fatigue. I have that most of the time...

It was nice to read your response and hear about how you thought you were "normal". The neighbor that suggested I check into whether I have celiac was talking to me about normal when it occurred to me that I probably don't know what "normal" is. Normal to me IS feeling like this all the time - which is not feeling good at all. How could this take me so long to really think about? I don't know if I have celiac yet - I'll get my blood test results tomorrow - but I do know that I must have something wrong. I've NEVER complained about it until now (well, once maybe - and it didn't go well as far as the reaction from my doctor at the time). I've been living this way for 39 yrs. - maybe that's why...

I'm hard pressed to really, really know if I have felt normal. I think about it and I would likely have to say that there are times when I have felt pretty well. The bowel disorder was always present however. One thing sticks in my mind - camping with the family (as a child) and 3 solid weeks with extreme diarrhea and nobody else with even a bit of it. It was blamed on the water we were using - hmmm. Can only one person have Beaver Fever and about 10 others not get it? That was only one incident.

Well, thanks for your response. Interesting to compare with others to see the similarities.

Chantalle

[Chantalle]

meant to post to you separately but new to this and screwed up!

[GinEva]

Hi everyone, kinda new to this message board, but not to being a Celiac!

I didn't realize how many different things that I considered "normal" for myself. And now with your list, I'm realizing just how many ways eating wheat was affecting me!

My mom thought it was just a childhood condition, and if I survived, that I would be OK. Since I only have one (older) half-sister (Mom's first marrage) and she has just gotten back into my life (having left the family when I was only 6 yrs old) I am only now finding out how sickly I was as a baby.

I know that I had a prescription for iron tablets, and remember that I was weak and tired. My sis confirmed that they did say I was a Celiac, but also born with an incomplete stomach lining. Couldn't have whole milk till I was about 6 yrs old. So I missed out on getting enough calcum for my bones. Was so alergic to just about everyting that I had to get shots twice a week. (And for you with kids, get them the shots, it helped alot!) It's funny, but the clearest memory I have as a little kid was sitting in the bathroom, with belly pains, rocking side to side, with my feet on a stool, hoping that the diarrhea would just stop. (Never been able to say this to AnyBody!! Who would understand?....But you guys do!)

I can relate to what Chantalle said about summer vacations! How come I was the one who came down with some kinda fever while my parents were OK?

Well, since I found this website, about a month ago, and stopped eating wheat, I've noticed changes, good changes about my body: my gas isn't constant, the big blouting belly is shrinking, the tiredness after eating isn't happening....got energy instead! Whow! Plus, I don't feel fuzzy headed, but clear, after eating, too. Add to that that I don't have to go to the bathroom several times a day at work, or about 4 times after getting home that evening. Not retaining a lot of excess water. Yea, and you can add dreams to that check list too! I can remember them when I wake up. (the last one I had, not all of them).

I could go on thru you check list and say, yep, had that, and that, and that. But my biggest concern right now is getting my bones tested cause my knees are popping and creaking, and I see that osterperosis is on the list at this website! My right shoulder has been painful on and off since last winter. Don't want to get old this way when I retire in about 5 years. I want to be able to live and enjoy it, finally! So glad I found this place, with all of you to talk to! I might just make it, to enjoy it. Thanks for letting me talk!

[Guest LisaB]

Chantalle,

Yes, depression is a symptom, there is an article around here somewhere about it, I'll try to find the link and post it...anyway, I had never been free of it until just recently after being gluten free for several months. But I didn't even notice it really unless I was going through something stressful or as I got older I began to get severally depressed in the winter (SAD), but I remember turning to someone about 5 years ago and I said "I haven't been happy even one day of my life." I happen to be very good at faking it, repressing it, not thinking about it, so I was actually suprised when that came out of my mouth. Besides, like you mentioned, it is hard to know what "normal" is and often depression lays around your life in such a way that it just dulls everything and you don't really pin point it, but then when something horrible happens (I am sorry for whatever you are going through by the way ) you don't have the emotional/mental strength to draw from because you use it to get thru everyday and don't even know it.

I personally take Trace Minerals Electrolyte Stamina packets (I get them www.totaldiscountvitamins.com because they have a great price on them, but you can get them at most healthfood stores) which are high in b vitamins and include trace minerals which help depression, not to mention the added energy. And the really good thing is that it is taken in liquid for so you don't have to worry about not absorbing. I talk about them all over the place, but they really are great! Digestive enzymes really, really help as well. I was taken them before going gluten free and they kept me going even then. They help you get all the nutrition out of your food, aid in rebuilding your immune system and much more. I use NOW Plant Enzymes (NOW always labels gluten free on there supplements if they are). Anyway, hope this helps, take care and we are all here to talk to when you need help!

[kalo]

Well I might as well give a brief history. Constipated from birth SEVERELY up until 20 years ago when I came down with IBS and since then I've been to you know where and back with the intestines. Weeks doubled over in tears wondering what I had done or eaten to cause such agony. I've found things that help but not completely and it comes back ever so often or I get constipated again. Sick ALL The time growing up. Living on penecillan and other medications and missing no less than one month of school every year. Fibromyalgia started in 6th grade with RLS (though I didn't know it then). By the time I was a teenager I was sleeping 10 hours a night, taking a 2 hour nap in the afternoon and very lethargic. My mother kept taking me into the clinic telling them I was anemic and they'd better fix me. None was ever found and they told her to quit wasting her time and theirs. Left home at 18 and some days I would be so fatigued I would call in to work sick and literally sleep ALL day. Married in Dec of 71 and my already below normal temp would drop to 96 and I would be achy and fatigued. Could not stay awake and would sleep for weeks, dragging my self to church and trying to fix meals, clean house etc. Many other things over the years, illness, dizzeness and light headedness, muscle weakness and fatigue, and severe tiredness. First full blown sinsus infection when we moved into a new apartment. Didn't know that's what it was so it wasn't treated. After that I would drag myself out of bed and collaspe on the couch. That's when my intestines went wild. I was told I was a female and it was stress. Doctor after doctor told me "Congratulations on your clean bill of health. Smile you'll feel beter". I also at that time went from having hay fever 24/7 nine months out of the year to having sinus pressure and pain throughout the face and my body became a litteral barometer. At that time I GAVE UP on doctors and started searching on my own (that was my FULL TIME job). Finally found one I like and have done all sorts of things since then. Nothing worked (including my thyroid treatment which I really thought would have after all I learned about thyroid). I also totaled my car in 95 and a year later is when the fibro went balistic. Only last week did my doctor mention celiac disease which suprised me as I thought I knew about it. My father had chron's disease. I've since searched and WOW! I will be very suprised if I don't have it. I also had a diagnosis of candida from Great Smokey Mountains lab. My body is acidic but my intestines are alkaline. All of my doctors sick patients have an acidic stomache. Waiting for my blood test results as well as the test from enterolabs so that I can take it. Talk about symptoms. I'm currently going to an allergist as well. Hugs, Carol B

[kalo]

Correction. All of my doctors patients have an acidic BODY not stomache. I should ALWAYS reread what I write. LOL Hugs, Carol B

[celiac3270]

My symptoms included:

1. Bloating/gas

2. Diarrhea

3. Cramping in my stomach (the worst symptom for me) sometimes accompanied with vomiting.

[angel-jd1]

Ok I finally had some time to go back to the old board and look for that list, found it and here it is:

From Fernandofamily on the old board: 9-7-2003

here is a list of symptoms associated with celiac disease that I put together to give to my doctor. I would like to know how many of the symptoms any of you have ( or had in the past if you a gluten-free now). I have 32 symptoms off this list, many of which taken separately could have been something else, but when you look at them together you can tell there is something really wrong! If you have anything to add to this list that would be great. Most of this was compiled from the aafp.org and celiac.com websites info on celiac symptoms.

List of symptoms associated with Celiac Disease (also known as Celiac Sprue and Gluten Intolerance):

Lassitude (a term describing a feeling of tiredness, weakness or exhaustion)

Inanition (exhaustion, as from lack of nourishment)

Depression

Fatigue (often chronic)

Irritability

Fuzzy-mindedness after gluten ingestion

Dental enamel defects (lots of dental cavities due to weak enamel)

General malnutrition with or without weightloss

Any problem associated with vitamin deficiencies

Diarrhea

Constipation

Lactose intolerance

Flatulence

Anorexia

Nausea

Vomiting

Burning sensation in the throat

Abdominal pain and bloating

Borborygmi (audible bowel sounds)

Abdominal distention

Steatorrhea (fatty stools that float rather than sink)

Foul smelling stools

Bulky, greasy stools

Anemia (iron deficiency)

Hemorrhagic diathesis (bleeding disorder)

Osteoporosis/osteopenia (bone loss or thinning)

Bone pain (especially nocturnal)

White flecks on fingernails

Short stature (due to slow growth)

Arthritis

Rheumatoid arthritis

Arthralgia (pain in the joints)

Tetany (spasms and twitching of the muscles)

Parasthesia (abnormal or impaired skin sensation including burning, prickling, itching, or tingling)

Amenorrhea (absence of menstrual bleeding)

Delayed puberty

Infertility

Impotence

Cheilosis (inflammation, cracking and dryness of the lips)

*Angular cheilosis (specifically cracking in the corners of the lips)

Glossitis (swollen tongue)

Stomatitis (any form of inflammation or ulceration of the mouth, such as mouth ulcers, cold sores, thrush, etc.)

Purpura (purple or red spots on your skin caused by bleeding under the skin, more common in elderly)

Follicular hyperkeratosis (corns, calluses, plantar warts, psoriasis, nail fungus)

Atopic dermatitis (a tendency towards allergies and a predisposition to various allergic reactions)

*Scaly dermatitis (inflammation of the skin, includes dandruff and topical allergic reactions)

Hyperpigmented dermatitis (can't find the definition, must have something to do with the color of the rash?)

Alopecia areata (loss or absence of hair, leaving the skin looking and feeling normal)

Edema (accumulation of serum-like fluid in the body tissues)

Ascites (accumulation of fluid in the peritoneal cavity-the space between the abdominal wall and the organs)

Selective IgA deficiency

Seizures, with or without occipital calcification

Hepatitis (inflammation of the liver, may be acute or chronic)

Dermatitis herpetiformis (skin rash characterized as intensely itchy skin eruptions like red bumps and blisters. Burning, stinging and itching is very bad. It appears in groups around the body, most often on the head, elbows, knees, and buttocks, much like the lesions of Herpes which is why the name is herpetiformis-meaning "like herpes". Must be diagnosed by a doctor. Only occurs in celiac patients.)

Liver disease

Xerophthalmia (an eye disorder which causes the conjunctiva and cornea to become abnormally dry)

Night blindness (inability to see well in dim light)

Thyroid disease

Unexplained neuropathic illnesses, including ataxia and peripheral neuropathy

*Peripheral neuropathy (disease, inflammation and damage to the peripheral nerves, which connect the central nervous system to the sense organs, muscles, glands, and internal organs. Damage to sensory nerves may cause numbness, tingling, sensations of cold, or pain, often starting at the hands or feet and moving toward the body center. Damage to the nerves of the autonomic nervous system may lead to blurred vision, impaired or absent sweating, headaches, episodes of faintness associated with falls in blood pressure, disturbance of gastric, intestinal, bladder or sexual functioning, including incontinence and impotence. In some cases there is no obvious or detectable cause)

*Ataxia (incoordination and clumsiness, affecting balance and gait, limb or eye movements and/or speech, making one appear as if they were drunk)

Dementia

Diabetes mellitus type 1

Sjogren's syndrome (eyes, mouth, and vagina become extremely dry)

Collagen disorders

Down syndrome

IgA neuropathy

Fibrosing alveolitis of the lung (body produces antibodies against its own lung tissue, creates a dry cough and breathing difficulty upon exertion)

Hyposplenism, with atrophy of the spleen (underactive spleen)

Pancreatitis (inflammation of the pancreas)

Lymphoma (any group of cancers in which the cells of the lymphoid tissue multiply unchecked)

Leukopenia (abnormal decrease in white blood cells, often reducing immune system function)

Coagulopathy (blood clotting disorder)

Thrombocytosis (low blood platelets/damaged platelets, causing large amounts of bruises due to uncontrolled bleeding under the skin)

Melanosis (black or brown discoloration of the colon, usually due to chronic constipation)

Erythema nodosum (red-purple swellings on the legs and sometimes arms, with fever and joint pain)

In children:

Failure to thrive

Irritability

Paleness

Fretfulness

Inability to concentrate

Emotional withdrawal or excessive dependence

Nausea

Pale, malodorous, bulky stools

Frequent, foamy diarrhea

Wasted buttocks

Anorexia

Malnutrition:

*With protuberant abdomen (with or without painful bloating)

*Muscle wasting of buttocks, thighs, and proximal arms

*With or without diarrhea

(as well as any number of the above diseases and disorders)

Additional information:

Reactions to ingestion of gluten can be immediate, or delayed for days, weeks or even months.

The amazing thing about celiac disease is that no two individuals who have it seem to have the same set of symptoms or reactions. A person might have several of the symptoms listed above, a few of them, one, or none. There are even cases in which obesity turned out to be a symptom of celiac disease.

Here is my reply from the old board:

I have 33 of the symptoms,I am not sure about some of them, they would require further testing which I have not done such as bone density.

    I began my struggle at age 3 with atopic dermatitis. The Dr's told my mom I had dry skin and to put some lotion on it. Here I am at age 24 and FINALLY diagnosed!! We have been doing extensive testing since approximately age 16. It is amazing how much doctors sometimes miss. I agree with you that Celiac is a very individualized disease. I think that is what makes it especially hard to diagnosed without the blood panels and scopes. However, that is no excuse for a doctor to miss it for YEARS which is par for the course in most of us.

    Nice job putting together your list. Best Wishes!!

-Jessica

.

[Chantalle]

Angel - thank you so much for putting up that list. I can't believe how many active symptoms there actually are - and also the fact that somebody can be sick with celiac and not have what most doctors believe to be the "classic" symptoms. With my doctor it's the fact I'm not "wasting". I fall into many of those symptoms - the one that surprised me was the muscle one - my lower left leg has been "numb" for more than 2 years (although I DO have herniated discs so this really could be the culprit) plus the fact that I experienced tingling and pain in my elbows, swelling, etc. in my forearms and hands. Went for a test at the hospital with a neurologist and he said I didn't have carpal tunnel syndrome - but it was so bad. I seemed to resolve it through wearing wrist things at night.

Anyway, thanks again - I'm going to order the test from Enterolab.

Chantalle

[dana-g]

I also had headaches of one kind or another almost every day before I went gluten-free. I almost never get one now! It is truly a miracle, and I hope I never see my neurologist or the inside of an MRI machine again for as long as I live...

From "Wheat Free, Worry Free": "A study published in the journal "Neurology" in 2001 found that when celiacs adhered to a gluten-free diet, the number of debilitating headaches they suffered was dramatically reduced...gluten somehow triggers an inflammatory response in the white matter if the cerebrum, resulting in headaches. " Don't I know it!

[gf4life]

When I posted that list of symptoms on the old board it was from my own research. It is by no means a complete list. When a major study was concluded last year, February 2003, it was said that they found over 250 symptoms and related diseases associated with Celiac Disease. They will not release a printed copy of that list. (Believe me I tried to get one!) Their reasoning is that it is already outdated. Another comprehensive list of symptoms and related diseases is in the book Dangerous Grains by James Braly and Ron Hoggan. Excellent book. I recommend it for anyone wanting to find out more information about how gluten damages the body and causes other illnesses.

Thank you Jessica for moving a copy of my post from the old board.

God bless,

Mariann

[khyricat]

Thanks for the list guys, I am now more certain then ever that the blood test that I took earlier this week will come back positive.. I already started the gluten free thing today- went grocery shopping for supplies and such.. I wasn't doing much gluten prior to this point... but some. I had been told years ago that I had Crohns disease like my mom.. but celiac makes more sense as a diagnosis when you combine all my symptoms.. I am glad I took the time to do the research and my new doc insisted on the test when she said some of my current symptoms are more like IBS then crohns.. she was going to look at the test results from when they found the lesions again to see if they are consistant with celiac, and call me next week once the blood test comes back. If I start gluten free before she tells me to could that cause a problem for later test results?

I have had tummy issues for more then 10 years but I've also had issues with many other things on that list.. I am going to print it out tomorrow and count the actual number of things on it that fit me. It also sounds a lot like some of my husbands problems, so I am going to urge him to either join me gluten free or be tested.

Amie in MI. who just found this board earlier today while at work.

[gf4life]

HI Amie, Welcome to the board!

Yes, it could mess up future test results if you start the gluten free diet now. You might want to wait until your blood test results come in and see if your doctor wants to run anymore tests.

God bless,

Mariann

[khyricat]

thanks for the information. I am going to start cutting back the gluten but not go gluten free.. just eating less of the bad things.

Amie

[celiac3270]

That is a good list. Thank you, Jessica, for retrieving the list...thank you Mariann for researching it in the first place. It is much longer and more comprehensive than any others that I've read.

-celiac3270

[celiac3270]

Hi, I found this list under another section, and felt that it might be helpful to those browsing this section of the forum, as well. Jessica retrieved it from the old board where Mariann (gf4life, or back then, fernandofamily) researched and posted it. Because it mentioned other problems associated with celiac disease, I thought it might be helpful here.

From Fernandofamily on the old board: 9-7-2003

here is a list of symptoms associated with celiac disease that I put together to give to my doctor. I would like to know how many of the symptoms any of you have ( or had in the past if you a gluten-free now). I have 32 symptoms off this list, many of which taken separately could have been something else, but when you look at them together you can tell there is something really wrong! If you have anything to add to this list that would be great. Most of this was compiled from the aafp.org and celiac.com websites info on celiac symptoms.

List of symptoms associated with Celiac Disease (also known as Celiac Sprue and Gluten Intolerance):

Lassitude (a term describing a feeling of tiredness, weakness or exhaustion)

Inanition (exhaustion, as from lack of nourishment)

Depression

Fatigue (often chronic)

Irritability

Fuzzy-mindedness after gluten ingestion

Dental enamel defects (lots of dental cavities due to weak enamel)

General malnutrition with or without weightloss

Any problem associated with vitamin deficiencies

Diarrhea

Constipation

Lactose intolerance

Flatulence

Anorexia

Nausea

Vomiting

Burning sensation in the throat

Abdominal pain and bloating

Borborygmi (audible bowel sounds)

Abdominal distention

Steatorrhea (fatty stools that float rather than sink)

Foul smelling stools

Bulky, greasy stools

Anemia (iron deficiency)

Hemorrhagic diathesis (bleeding disorder)

Osteoporosis/osteopenia (bone loss or thinning)

Bone pain (especially nocturnal)

White flecks on fingernails

Short stature (due to slow growth)

Arthritis

Rheumatoid arthritis

Arthralgia (pain in the joints)

Tetany (spasms and twitching of the muscles)

Parasthesia (abnormal or impaired skin sensation including burning, prickling, itching, or tingling)

Amenorrhea (absence of menstrual bleeding)

Delayed puberty

Infertility

Impotence

Cheilosis (inflammation, cracking and dryness of the lips)

*Angular cheilosis (specifically cracking in the corners of the lips)

Glossitis (swollen tongue)

Stomatitis (any form of inflammation or ulceration of the mouth, such as mouth ulcers, cold sores, thrush, etc.)

Purpura (purple or red spots on your skin caused by bleeding under the skin, more common in elderly)

Follicular hyperkeratosis (corns, calluses, plantar warts, psoriasis, nail fungus)

Atopic dermatitis (a tendency towards allergies and a predisposition to various allergic reactions)

*Scaly dermatitis (inflammation of the skin, includes dandruff and topical allergic reactions)

Hyperpigmented dermatitis (can't find the definition, must have something to do with the color of the rash?)

Alopecia areata (loss or absence of hair, leaving the skin looking and feeling normal)

Edema (accumulation of serum-like fluid in the body tissues)

Ascites (accumulation of fluid in the peritoneal cavity-the space between the abdominal wall and the organs)

Selective IgA deficiency

Seizures, with or without occipital calcification

Hepatitis (inflammation of the liver, may be acute or chronic)

Dermatitis herpetiformis (skin rash characterized as intensely itchy skin eruptions like red bumps and blisters. Burning, stinging and itching is very bad. It appears in groups around the body, most often on the head, elbows, knees, and buttocks, much like the lesions of Herpes which is why the name is herpetiformis-meaning "like herpes". Must be diagnosed by a doctor. Only occurs in celiac patients.)

Liver disease

Xerophthalmia (an eye disorder which causes the conjunctiva and cornea to become abnormally dry)

Night blindness (inability to see well in dim light)

Thyroid disease

Unexplained neuropathic illnesses, including ataxia and peripheral neuropathy

*Peripheral neuropathy (disease, inflammation and damage to the peripheral nerves, which connect the central nervous system to the sense organs, muscles, glands, and internal organs. Damage to sensory nerves may cause numbness, tingling, sensations of cold, or pain, often starting at the hands or feet and moving toward the body center. Damage to the nerves of the autonomic nervous system may lead to blurred vision, impaired or absent sweating, headaches, episodes of faintness associated with falls in blood pressure, disturbance of gastric, intestinal, bladder or sexual functioning, including incontinence and impotence. In some cases there is no obvious or detectable cause)

*Ataxia (incoordination and clumsiness, affecting balance and gait, limb or eye movements and/or speech, making one appear as if they were drunk)

Dementia

Diabetes mellitus type 1

Sjogren's syndrome (eyes, mouth, and vagina become extremely dry)

Collagen disorders

Down syndrome

IgA neuropathy

Fibrosing alveolitis of the lung (body produces antibodies against its own lung tissue, creates a dry cough and breathing difficulty upon exertion)

Hyposplenism, with atrophy of the spleen (underactive spleen)

Pancreatitis (inflammation of the pancreas)

Lymphoma (any group of cancers in which the cells of the lymphoid tissue multiply unchecked)

Leukopenia (abnormal decrease in white blood cells, often reducing immune system function)

Coagulopathy (blood clotting disorder)

Thrombocytosis (low blood platelets/damaged platelets, causing large amounts of bruises due to uncontrolled bleeding under the skin)

Melanosis (black or brown discoloration of the colon, usually due to chronic constipation)

Erythema nodosum (red-purple swellings on the legs and sometimes arms, with fever and joint pain)

In children:

Failure to thrive

Irritability

Paleness

Fretfulness

Inability to concentrate

Emotional withdrawal or excessive dependence

Nausea

Pale, malodorous, bulky stools

Frequent, foamy diarrhea

Wasted buttocks

Anorexia

Malnutrition:

*With protuberant abdomen (with or without painful bloating)

*Muscle wasting of buttocks, thighs, and proximal arms

*With or without diarrhea

(as well as any number of the above diseases and disorders)

Additional information:

Reactions to ingestion of gluten can be immediate, or delayed for days, weeks or even months.

The amazing thing about celiac disease is that no two individuals who have it seem to have the same set of symptoms or reactions. A person might have several of the symptoms listed above, a few of them, one, or none. There are even cases in which obesity turned out to be a symptom of celiac disease.

Thank you, again, to both...this is a more complete list then I've found anywhere else.