How Strict Do We Need To Be?

[VydorScope]

My son (presently 2 1/2 years old, DX'd at 18months):

Behavoral relapses

Deveopment relaspes and delays

5-8 bouts of the D , daily

Extreme pain in admobinal area, inlcuding tenderness

Stools cause BLOODY diaper rash, very bad

Inablitly to sleep.

Acid Reflux including blood in spit.

Weight loss, and body shrinkage with extended exposure.

All confirmed to happen with exposure to gluten. Malabostion is unknown, but likly. It was very very very very very scary till we learned of celiac disease. Talking holding a child, bearly over a year old in my arms at 2 am who is screaming and writing in pain with no known cause or treatment.

[key]

Symptoms before going gluten free:

Bone pain

Bruising-alot

excessive gas (my husband was very happy to have me not eating gluten)

heartburn

Diarrhea, alternating with constipation

nausea

stomach aches

severe bloating

mild depression and anxiety(this was not severe at all, but noticed it got better once gluten free)

mild anemia

decreased appetite (never could eat by the end of the day)

mild weight loss

fatigue

Also I had two kids with birth defects. Not 100% sure if it is related, but i feel it may be related to undiagnosed celiac for years. My symptoms weren't always there, but the nausea, excessive gas, fatigue and stomach aches that would come and go were there for years. Also was anemic in high school and they thought I had leukemia for awhile, but I didn't.

Monica

[Canadian Karen]

I forgot to mention a few, depression, bloating and really loud sounds in my stomach (I forget the medical name for it). My stomach sounds like a thunderstorm every day!

Now, all of these are me on a day to day basis - gluten-free. If you were looking for what happens to me when I consume gluten, that's a whole different story!!!

Karen

[jerseyangel]

Urgent diarrhea

Cramping

Nausea

Severa anemia--Lightheadness/fainting

Neck/hip pain

Anxiety/depression

Brain fog/problems with concentration

Tingling/numbness--face, left arm, lower legs and feet

Weight loss--regained on gluten free diet

Gas/stomach rumbling

Since 7 months gluten-free--reflux, severe enough to cause bronchial spasms (diagnosed by allergist)

[aikiducky]

In order of symptoms I mind the most:

Irritability/depression

Fatigue

Brain fog, inability to concentrate or remember things

Balance and coordination problems

Bloating

Very foul gas

Equally foul loose frequent stools for a couple days, followed by a couple weeks constipation

Itchy scalp & shoulders

Acid reflux (sometimes)

Nausea (mild)

This is with minuscule cross contamination. I don't know what would happen if I ate gluteny food on purpose!

If I only had the GI symptoms, I might be tempted to cheat sometimes. But I HATE the way I feel in my head when I've been glutened.

Pauliina

[Nancym]

Gas, cramping, not exactly diarrhea, but running to poo 3-7 times a day, sometimes diarrhea. Feeling excessively sleepy and dull-witted after eating gluten, feeling too "cold". In fact, I thought my thyroid meds needed adjusting because I had a lot of hypothyroid like symptoms. Then there is my list of related autoimmune diseases: vitillago, ezcema, ankylosing spondylitis, and Graves disease... so far. :\

Some of that also seems to be related to a milk intolerance too.

[Rusla]

Nasty smelly urgent D multiple times a day

Gas

Acid Reflux

Brain Fog,

Depression,

Scalp lesions

Dermatitis Herpetiformis

Burning stomach and abdominal pain

Kidney pain

Pernicious Anemia and persistant anemia

Constantly itchy in specific places.

Malabsorbtion

Extreme weight gain

Tingling feet and hands

Hip and back pain

Swollen hands and joints.

Nausea

[Lisa]

Acid D

Stabbing pain in Small Intest

Immediate discharge after eating - undigested

malabnorbtion

loss of padding on feet and rear- end

weight loss

fatique

loss of balance and coordination

anxiety

depression

memory loss

As above before dx - 8 months gluten free - 90% gone

[nettiebeads]

When cross contaminated I used to have severe D within 20 to 24 hours (I was never a "fast reacter") but now it's constipation that lasts for two to three weeks but everything else stayed the same:

Chronic, dibilitating fatigue

brain fog

general flu-like achiness

depression

[shayesmom]

Today I've been wondering about the various symptoms and problems attributed here to celiac. Since I have had only GI symptoms, I was surprised to learn about all the other associated problems, such as gluten ataxia, for example.

So how about a list of problems associated with celiac for each of us, but please try to be very selective and include (succinctly) just the problems you feel absolutely sure are related to your celiac and gluten ingestion.

Mine are simple, so I'll start:

Low Grade Intermittent Diarrhea

Gas

Foul stools/malapsorption

Borborygmi (hyperactive stomach growling)

Mine are simple also:

- Seemingly random bouts of diarrhea that would be "triggered" within 10 minutes of beginning a meal

- Chronic fatigue and depression, although discouraging, they weren't bad enough to prompt a medical visit

- Unexplained weight GAIN. No matter how little I ate, the weight kept piling on. I lost 18 pounds in 3 weeks simply by limiting gluten.

- Brain fog

- Severe bone pain, especially in feet and back

- Mood swings

- Insomnia

My daughter's symptoms:

- Unexplained weight loss as an infant (looking back it started when I introduced baby cereals)

- Extreme hyperactivity

- Inability to focus on anything for more than 30 seconds

- Poor sleep habits at night and very short naps

- Loose, foamy stools 7-10 times per day (pedi told me this was "normal" )

- Bloated belly

- Good general mood, but easily provoked into tantrums

- Loving new foods and then completely refusing them when offered again. Turns out, her "picky" eating habits were her way of trying to communicate that those foods caused her pain.

Dd's problems were complicated in that other food allergies were present. She is also sensitive to dairy, soy, egg whites, food colorings, artificial sweeteners, preservatives and food additives. So far, only the eggs and limited amounts of soy seem to be coming back on-line for us. That's okay though. We're doing well with it!

[Canadian Karen]

Along with all that I have listed above that happens on a regular basis, the list below describes how I feel when I get accidentally glutened:

- "locking" of shoulders/neck in the centre of my back.

- I see "flashing light" in the corner of my eyes.

- I see "flashes of things" i.e. something that looks like a bug crawling across the floor but thre is nothing there.

- My eyes puff out and I get dry skin patches on my face.

- Numbness, coldness in fingers.

- Burning/tingling of lips and tongue and a funny taste in my mouth.

- Numb feeling on face (cheeks, around the mouth)

- Stiff jaw (kind of like locking.)

- A "shooting" feeling down my arms and legs.

- Abdominal pain, unbelieveable gas, feels like poison going through my whole body

- Tenderness, rawnesss under breasts, reaching to the back area.

- I feel unstable, upset, crying, jumpy, nervous.....

Quite often, the only little bit of relief I get is laying on the floor in different posturial positions until I work some of the gas out of my system.....

I also have a problem in the morning when I wake up that it takes a good 1 - 2 hours before I can move around properly - I feel incredibly stiff. Quite often I wake with a stiff neck too.

I have noticed that my palpitations that used to be quite severe have greatly diminished the longer I was on the gluten-free diet. But were they ever scary! It felt like my heart was skipping beats and thumping out of my chest!

I affectionately refer to these episodes as "flares"

Karen

[Babs83]

Thanks folks, and I do respect your wisdom of experience.

However, I don't for a minute believe that a celiac is a celiac is a celiac. Classical celiac occurs in children with severe malnutrition, bloated abdomens, profuse watery diarrhea with dehydration, even death.

Man, I could eat a loaf of bread a day and never come close to that type of reaction (in fact I have done that before). Actually, I believe the problem with under-diagnosing of celiac is due to the highly variable symptoms and severity for person to person.

I don't think exposure to gluten is causally related to other autoimmune diseases. These are likely due to genetic susceptibility to autoimmune problems, of which celiac is one. These genes travel in clusters and no doubt many individuals with celiac have the genes causing susceptiblity to these other autoimmune problems (thyroiditis, rheumatoid arthritis, etc.). However, I am 42 years old and have been exposed to gluten virtually every day, and I have absolutely no other autoimmune problems. At my age it is highly unlikely that I ever will.

Let's think about the medical problems associated with untreated or poorly treated:

Osteoporosis: This is my number one concern. I beleive I may already have some degree of this. It is a very serious problem. Studies have shown that there is a 10-20% increase in bone density in the first year or two on gluten free diet. As concerned as I am, thought, I suspect occasional slip ups will have very little impact (at least for my level of reaction). Osteo is caused by long term calcium deficiency, not occasional diminished absortpion.

Other Nutrient Deficiencies: Haven't researched this yet, but I don't have any problems I would relate to other nutrient deficiencies (eg. anemia, fatigue, skin problems, etc.). Besides, just like the above, this would be a long term issue.

Damage to Instestine: Hmm, don't like the sound of this, but everything I've read says it is completely reversible. Still...

Cancer: the real issue hear is small intestinal lymphoma. As I've said this extremely rare, and I'm only minimally concerned about this. Now, if one was a frequent cheater, or denied the diet altogether, that is a different story. It is chronic inflammation that leads to the malignancy.

These are the main issues. Given my level of reaction, I don't think I need to be too rigid. I avoid bread, pasta, etc. But I'll simply take the bun of the burger or the croutons off the salad myself.

This is my own non-expert assessment based on my own level of intolerance, I am not suggesting others do this, just wondering what types of assessments others are making for themselves.

By the way, trust and respect your doctor if he/she seems competent, but don't consider their advice etched in stone in most cases. The knowledge about what is ok and not ok for celiacs is just beginning to be studied. Hopefully more answers will be forthcoming from properly conducting clinical research. In the meantime there is a lot of judgement involved.

My brother has been glutin free for years, whenever he eats anything with gluten in it his body goes into shock. His chest become real tight and he has trouble breathing, has to go to the emergency room for a shot. Now he carries an epi-pen.

[Judyin Philly]

I affectionately refer to these episodes as "flares"

SOMETIMES YOUR POSTS TAKE MY 'BREATH' AWAY...

I WISH THE 'FLARES' COULD BE BANISHED BY THE DE-GLUTEN GODS...

HUGS AND LOVE TO YA FRIEND.

JUDY

[penguin]

Before dx:

This all started after having a SEVERE case of mono...

- Foul, light colored (like squash) D nearly every day

- Equally foul gas

- pyloric spasms (feels like I'm digesting glass, or my stomach is trying to eat itself)

- Cramping

- Mouth ulcers

- Brain fog (thought I had ADD)

- Anemia

- Elevated platelets

- Occasional vomiting (more than your average person, for sure)

- Reflux

- Gastritis

- Fatigue

- Charley horses (not necessarily related, they're hereditary)

It sucked.

Now, when I get glutened:

Within 10 minutes:

- Face goes numb

- Feel "stoned" and not in a good way

- Can't focus long enough to bring fork to mouth

- Depression

Within an hour:

- Stomach cramping

- Sometimes D

- Food comes out undigested

[Jnkmnky]

Hello... new to topic.

I am neg for sensitivity and celiac disease. HOWEVER, I was dx with endometriosis after a year and a bit of mind blowing pain. I went gluten-free and that next month was pain free! Some non-commited gluten-free eating left me sure that the only way to go was 100% gluten-free to be rid of that pain. Then there was the incident with the french bread... Ok, I had a few bites. Next thing you know, I can relate to ChelsE's fork to the mouth and stoned *not in a good way* comments. Not even funny when you're a single parent with three kids. *husband is in Bahrain for TWO years.

Ok. a little gluten. Must have had some last week when we went out to dinner. I wasn't really strict with the sauces. Figured it wouldn't kill me. I had BRAIN FOG that should have had me playing in traffic with all the "pretty cars"... I was doped to the max, couldn't remember my own kid's names without an EFFORT! AND JOINT PAIN for nearly a week. OMG!!!! Never again. You want to have a little every now and then, be my guest. Have my portion. I want to live a fog free, pain free life.

[ravenwoodglass]

Good morning all,

Karen: yes, the article you linked is a good one. It also emphasizes the abnormal IEL's as a major factor in refractory celiac, just like Fasano's article. It also discusses the same treatments- elemental diet, immunosuppressive agents, and possible chemotherapy. There are other potential treatments that come to mind as well, particularly the newer antibody therapies for lymphoma such as rituxan. There is hope in all of this.

Several have asked why I haven't had formal diagnostics, such as antibodies/genetic testing/endoscopy. There are 3 answers. First and foremost, I have had resolution of virtually all of my symptoms as soon as I started the diet. Second, I do plan on using enterolab for confirmation, I just haven't been in a big hurry because of the above. Third, I am a man and a doctor and therefore a terrible patient.

By the way, several have also commented about me being more likely to be believed about my self-diagnosis because of the MD. This is probably true, but I miss the point. Who cares about being beleived or not? I suspected celiac, went on the diet, got dramatically better, end of story. Believe or not believe doesn't seem relevant.

Today I've been wondering about the various symptoms and problems attributed here to celiac. Since I have had only GI symptoms, I was surprised to learn about all the other associated problems, such as gluten ataxia, for example.

So how about a list of problems associated with celiac for each of us, but please try to be very selective and include (succinctly) just the problems you feel absolutely sure are related to your celiac and gluten ingestion.

Mine are simple, so I'll start:

Low Grade Intermittent Diarrhea

Gas

Foul stools/malapsorption

Borborygmi (hyperactive stomach growling)

Borborygmi - age of onset about 6 or 7

Gas- 6

tooth enamel defects birth

growth stunting

brain fog

depressive episodes with menses 11 on

D and an adult- 35 (ibs, diverticulosis)

Severe C- as a child from early memory to 20's , impacted 1 time

Ataxia -10 This became very bad after Diarrhea GI symptoms hit at 35

Migraines 10

dermatitis herpeformis all extremities 6 - 20 misdiagnosed as poison ivy even in winter

adult acne 20 - 45 severe (DH)

joint and muscle pain 6 on stabbing and intermittant till 30's

edema and bloating 30's

PMDD 30's

PPD 30's

fibro diagnosis 37

arthritis 37

periphreal neuropathy 37 my neuro told me it was cause I drank to much one year - at 16!!

incontinence 40

menopause at 44

pernicious anemia 44

I have given you a list of the various things that I know were directly related to the celiac. The main reason I can attribute them to gluten is because they are all symptoms that have for the most part resolved. As with most of us there are recognizable triggers for each excaberation of symptoms, I was impaled as a young child and had to remove myself from the spike, at age 10 I had surgery for club feet on both legs, and then I became sicker after the birth of each child. My DS was triggered very young also as has many more symptoms than my DD.

[Fiddle-Faddle]

GERD starting at age 15, increasing in severity until last year, when I went on Nexium (had been on Tums, Pepcid, Zantac, Prilosec,) (Was diagnosed with hiatal hernia in 1993. Had endoscopies in 1997 and 2005. No Barrett's Esophagus, but did have esophageal ulcers both times.

Hashimoto's thyroiditis diagnosed in 1989--have been onlevoxyl, levothroid, or synthroid ever since

DH-type itching, burning, blistering, oozing rash (never officially diagnosed--it was all over both arms, but not on extremities) January of 2006

Went gluten-free in January, 2006. Immediately dropped 10 pounds (a good thing as I still weigh 160)and noticed that gasand occasional stomach pains cleared up--had not noticed them til they went away.

I have always had rosy cheeks, but now seem to have a very mild facial rash that up close looks like it could be rosacea or lupus (let's hope not). It has not changed since going gluten-free.

[VydorScope]

Am I the onlyone that gets high BP when glutened? Talking 142/98 type ranges... 110/70 or so is non-gluten bp. Its so far been repeatable every time.

[Rusla]

Am I the onlyone that gets high BP when glutened? Talking 142/98 type ranges... 110/70 or so is non-gluten bp. Its so far been repeatable every time.

Now that you mention it my bp went up in the last 8 years where it never had before. Then when I had my teeth done in March and it was back down. Maybe there is a correlation.

[ianm]

Severe brain fog, I go into an almost zombie-like state when glutened.

Severe fatigue, I used to sleep 12-18 hours a day and it still wasn't enough.

Weight gain, used to be obese.

Bloating.

Not a lot of real severe gut issues though.

[judy05]

Severe brain fog, I go into an almost zombie-like state when glutened.

Severe fatigue, I used to sleep 12-18 hours a day and it still wasn't enough.

Weight gain, used to be obese.

Bloating.

Not a lot of real severe gut issues though.

This is a list of symptoms which got better or disappeared when on gluten-free diet

burning, itchy eyes, sometimes with stabbing pains, had eyes checked -OK

spasms in the shoulder and neck with a feeling of a knife stabbing me

sharp pain going down right leg

sharp pains on top of both feet

numbness in fingers, left hand

migraines, seeing different blocks of color in field of vision, migraines were very scary, I didn't think the flashing lights would go away, felt slightly confused and "out of it" for a while

brain fog, felt like a gray cloud was surrounding me ( I never told anyone about this, they thought I was a hypochondriac as it was)

palpitations, heart racing. was hospitalized when I got tachycardia at work, they took me out of a nursing home in an ambulance, pulse was 150 but normal sinus rhythm.

allergies, frequent sinus infections ( these have completely disappeared ) had been taking allergy shots for 20 years.

autoimmune thyroid disease, thyroid was destroying itself

hypoglycemia, Has gone away, now have slight hyperglycemia

Insomnia which I still have, taking small dose of zoloft and klonipin

high blood pressure, is finally well controlled with medicine and diet and exercise

constipation/diarrhea controlled by fiber pills

nausea, pain on right side after consuming gluten. All gallbladder studies were normal.

Itchy scalp until i stopped using Nexxus, now use Garnier Fructis

Dental problems all my life, many cavities, root canals, several teeth were capped because of lack of enamel

Get severely glutened in dentist chair, dentist has to check any new products. Said he has several Celiac patients but I am the only one who reacts to topical anesthetics.

Acid reflux, Barrett's Esophagus

All of these symptoms and I don't have Celiac, but definitely gluten intolerant!

[Rusla]

I don't know how I managed to forget the extreme tooth loss in the last five years.

[VydorScope]

I don't know how I managed to forget the extreme tooth loss in the last five years.

Good point I have tons of cavitis, and fillings. I literly lost count around 20 or so. But I can not CONFIRM that to gluten like I can with my sons list, or BP. So I did not mention it.

[radman]

Hi everyone,

I plan on tabulating all of this when I get a minute.

Interesting no one has mentioned osteopenia or osteoporosis (unless I missed it scanning the posts).

Has everyone had the recommended DEXA scan to test bone density?

[VydorScope]

Hi everyone,

I plan on tabulating all of this when I get a minute.

Interesting no one has mentioned osteopenia or osteoporosis (unless I missed it scanning the posts).

Has everyone had the recommended DEXA scan to test bone density?

My bone scans show loss, but again I can not PROVE that it was from celiac disease. There is no other cuase found of course, but since I can not estiablish a repeatable relationship, like I can with my BP, I did not list it. At age 30, I show signifigant bone loss. So of course I want to blame celiac disease, but I can only say "probalbly" .