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radman

How Strict Do We Need To Be?

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Osteoporosis runs in my family. When my doctor gets back from holidays he is doing a full medical including bone density because of this disease. As he is a new doctor and the doctors I have had in the last 25 years, have never done a medical and it was pulling teeth just to get them to run blood tests.


Rusla

Asthma-1969

wheat/ dairy allergies, lactose/casein intolerance-1980

Multiple food, environmental allergies

allergic to all antibiotics except sulpha

Rheumitoid arthritis,Migraine headaches,TMJ- 1975

fibromyalgia-1995

egg allergy-1997

msg allergy,gall bladder surgery-1972

Skin Biopsy positive DH-Dec.1 2005, confirmed celiac disease

gluten-free totally since Nov. 28, 2005

Hashimoto's Hypothyroidism- 2005

Pernicious Anemia 1999 (still anemic on and off.)

Osteoporosis Aug. 2006

Creative people need maids.

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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?

I had a bone density scan last summer (while I was waiting to get in for my biopsy and still eating normally) and it was normal. Interesting, since my sister was dx with celiac disease based on the fact she broke her hip last winter (at age 37) and her surgeon told her her bones were s**t.


LORI

Dx celiac disease Aug 25/05, ate KFC that night and gluten-free ever since

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That's one of the perplexing aspects of my case. With chronic malabsorption and chronic anemia, one of the first things the GI ordered was a bone density test for me, fully expecting to find osteoporosis (especially with my having been diagnosed with spinal stenosis at such an early age). To everyone's surprise, my results showed my bones to be stronger than steel! The only thing that they can contribute it to is the fact from the day I was born, I guzzles milk till I put my mom in the poorhouse! She used to tease me that she needed to get a cow to keep in the backyard. Even to this day, I consume a large quantity of milk. They figured that the amount of I plyed into my system was enough that even with my malabsorption issues, I was still getting plenty of calcium. I of course chalk it up to the fact that I come from strong stock! All members of my family are very tall, very big boned, very solidly built. I am 5'9" and the shortest in my family.

Karen


Karen

positive bloodwork, positive biopsy

Celiac, collagenous colitis, hypothyroidism

endometriosis (at age 20)

spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.

Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs

Rhiannon 8 yrs

Daniel & Connor 6 yr twin boys......

"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."

Orison Swett Marden

Laughter is the shortest distance between two people.

-- Victor Borge

"An optimist laughs to forget. A pessimist forgets to laugh."

Tom Nansbury

"Doctor to patient: I have good news and bad news. The good news is that you are not a hypochondriac."

Unknown

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My dr didn't reccomend a bone scan, but after all, I'm only 22.

Another symptom from glutening I forgot is sweating and flu-like aches.


Alright, don't worry even if things end up a bit too heavy

We'll all float on, alright

Well we'll float on good news is on the way...

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Guest Robbin

Each decade has gotten gradually worse( with the most severe starting in Nov. last year).

Starting in childhood: Bone pain, rashes, eczema, hayfever, ear infections, asthma, scoliosis, frequent stomach upset/vomiting, diarrhea, headaches, anemia, canker sores

Young adult:fibrocystic breast disease, infertility, worsening allergies, weight gain alternating with weight loss, chronic diarrhea, difficult pregnancy, fibromyalgia, severe migraines, mental fog, numbness in hands and face, very soft nails, hypoglycemia, elevated liver enzymes, elevated (?) anticardiolipid, low potassium levels, anemia, burning stomach pain, inflammed esophagus (that was the dx back then), ulcers, chronic sore throats, night sweats, unexplained fevers.

30 to now age 45): endometriosis, arthritis in spine, hysterectomy,tooth loss, severe vision loss, balance coordination problems, severe pain in both feet with heel spurs, hair loss, and of course the severe stomach pains and D--undigested food, foul, floating, burning and bloody, (sorry to be so graphic, but since we're sharing :) constant severe fatigue, brain fog to the point I would forget my own address and phone number. (once drove to a house down the street thinking I was home.)

Doctors have been asking me for 25 years if I am depressed and want to give me antidepressants. I tried them once and slept even more and DID feel depressed! I tell them every time that yes, I am depressed that I am always sick, but I am not crazy, not clinically depressed, do not want to die, and want to get on with my life! I have been blaming all my problems on the ever-present fibromyalgia, untill my son got really sick and I went searching for answers and found my own health saved, too.

After going gluten free and casein free, I am so happy to say that for the first time in my life, I do not itch anywhere! AND NO BIG D!!! (unless accidental) I was dx by enterolab, and was encouraged (finally) by my dr. to stay gluten-free (duh) :)

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Hmmm...let's see. Here are some things which I now link to gluten consumption....they disappeared fairy quickly after eliminating gluten, and re-appeared when I ate it after being gluten free:

Muscle & joint aches, especially neck & shoulders

nausea

bloating/gas/stomach pain

heartburn type pain

asthma/chronic coughing

high BP

high cholesterol

not overweight, but about 20 lbs too heavy which nothing would budge

dizziness, light-headed at times

fatigue (but trouble sleeping at night)

occasional D, with near-D most of the time. Several times per day.

Osteopenia diagnosed at 45 or so

No calories in teeth, but somewhat fragile teeth (have broken/split a couple of times)

Easy bruising....I'd get terrible, huge, dark bruises from almost nothing!

I'm not short, though, so the height thing didn't affect me!


CAROLE

-------------

Enterolab 1/2006

IgA & tTg Positive

DQ2-0201 (celiac) and DQ1-0604 (gluten)

Casein IgA positive

Mom has 2 celiac genes

Both kids have a celiac gene.

Lots of celiac disease in my family, both sides.

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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?

How could I have forgotten that! They first noticed osteoporosis 5 years ago when I was 45, 2 years before diagnosis. After my last scan 2 years ago they wanted me to start taking fosamax? I think that was what it was but not sure cause I refused to take it. Any meds given me, preceliac diagnosis, and there were lots, didn't do much good for anything and I can not trust local doctors to not prescribe something with gluten. My last trip to the ER I had torn ligaments in my ankle and wanted to make sure the snap I heard on injury was not a bone, the doctor handed me a script for pain pills, I asked him if they were gluten-free and his response was 'I think so", when I told him I needed to know for sure he just repeated well I 'think' they are. I got to lay in bed for 2 days taking baby asprin. I am very sorry to say I don't have much trust in the doctors in my little city. I do weight bearing excercises and eat calcium rich foods, and pray.

After rereading my earlier part of this post I realized I sounded like a major doctoraphobic, I should add that I have seen some great doctors, and some very close by in another county. Unfortunately I was pegged as a hypochondriac in my little home town. One of the biggest mistakes I made after diagnosis was to change all my doctors, I would not do this again as they think I just went Dr. hunting somewhere else. In a way this wasn't fair to other undiagnosed celiacs these doctors might see. Oh well what do they say about hindsight?


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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That's one of the perplexing aspects of my case. With chronic malabsorption and chronic anemia, one of the first things the GI ordered was a bone density test for me, fully expecting to find osteoporosis (especially with my having been diagnosed with spinal stenosis at such an early age). To everyone's surprise, my results showed my bones to be stronger than steel! The only thing that they can contribute it to is the fact from the day I was born, I guzzles milk till I put my mom in the poorhouse! She used to tease me that she needed to get a cow to keep in the backyard. Even to this day, I consume a large quantity of milk. They figured that the amount of I plyed into my system was enough that even with my malabsorption issues, I was still getting plenty of calcium. I of course chalk it up to the fact that I come from strong stock! All members of my family are very tall, very big boned, very solidly built. I am 5'9" and the shortest in my family.

Karen

Karen,

Have you ever looked up the connection between chronic anemia and dairy? http://www.healthychild.com/database/milk_...r_children_.htm The link I've provided is from a children's health page but explains how dairy can induce anemia and cause gastrointestinal bleeding.

Just a thought. I guess that I am so used to dealing with the symptoms of food allergies/intolerances of all sorts that your comment on drinking lots of milk made me wonder. I know eliminating dairy helped my dh's borderline anemia as well as my sister's.


Vicky

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Karen,

Have you ever looked up the connection between chronic anemia and dairy? http://www.healthychild.com/database/milk_...r_children_.htm The link I've provided is from a children's health page but explains how dairy can induce anemia and cause gastrointestinal bleeding.

VERY Intresting since I have chronic anemai too... hmmm


- Vincent -

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It is very interesting..... I am looking more into it!

Thanks!

Karen


Karen

positive bloodwork, positive biopsy

Celiac, collagenous colitis, hypothyroidism

endometriosis (at age 20)

spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.

Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs

Rhiannon 8 yrs

Daniel & Connor 6 yr twin boys......

"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."

Orison Swett Marden

Laughter is the shortest distance between two people.

-- Victor Borge

"An optimist laughs to forget. A pessimist forgets to laugh."

Tom Nansbury

"Doctor to patient: I have good news and bad news. The good news is that you are not a hypochondriac."

Unknown

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:blink: GOING BONKERS HERE..BEEN SEARCHING ON THIS SITE FOR 1/2 HR..WHERE IS THE ORIGINAL POST OF WHERE RADMAN SUGGESTED LISTING ALL SYMPTOMS SO HE CAN COMPLILE IT???? :ph34r::blink::o:unsure: SINCE MOST OF MY SUPTOMS ARE THE SAME AS MOST OTHERS WITH A FEW OTHERS...I'D LIKE TO DO A COPY AND PASTE..YOU ALL KNOW MY STRENTH IN SPELLING :ph34r:

CAN SOMEONE CLUE ME IN WHERE THAT POST FIRST APPEARED...?

THANKS FRIENDS

JUDY IN PHILLY


Judy in Southern CA

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I'll just list things that have gone away or improved since I went gluten-free, since I have never been officially diagnosed.

Dental enamel problems/dozens of cavities as a child (NONE in the past 10 years)

Psoriatic Arthritis

Psoriasis (improved, not gone)

Excema (improved, not gone)

Rosacea

Excessive gas

Alternating D and C

Loud, gurgling stomach

Debilitating intestinal cramps (only get now when glutened)

Brain Fog to the max

Blurred vision

Nephrotic Syndrome (in remission for past 2 years)

Editing here. Almost forgot:

Tonisillitis so many times I got them out at age 23

Thyroid problems - been on Armour Thyroid for 10 years


Liz

Started Specific Carbohydrate Diet on 8-16-09 because son was diagnosed with Ulcerative Colitis and want to give him moral support.

Diagnosed with Minimal Change Nephrotic Syndrome in 2003. Discovered that going completely gluten-free put me in remission.

I would have despaired unless I had believed that I would see the goodness of the Lord in the land of the living. Psalms 27:13

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:blink: GOING BONKERS HERE..BEEN SEARCHING ON THIS SITE FOR 1/2 HR..WHERE IS THE ORIGINAL POST OF WHERE RADMAN SUGGESTED LISTING ALL SYMPTOMS SO HE CAN COMPLILE IT???? :ph34r::blink::o:unsure: SINCE MOST OF MY SUPTOMS ARE THE SAME AS MOST OTHERS WITH A FEW OTHERS...I'D LIKE TO DO A COPY AND PASTE..YOU ALL KNOW MY STRENTH IN SPELLING :ph34r:

CAN SOMEONE CLUE ME IN WHERE THAT POST FIRST APPEARED...?

THANKS FRIENDS

JUDY IN PHILLY

Burried in this thread. Just reply with it here. :)


- Vincent -

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Like Chelse, my symptoms started (or became more severe, who knows) after an awful case of mono ....

severe, urgent, awful D

painful stomach cramping

stomach gurgling

heartburn

total brain fog/decreased concentration

dramatic weight loss....seeing my ribs was scary

fatigue/weak

sleeping all the time

headaches

arthritic/bone pain (felt like I could feel the inside of my bones)

muscle pain

skin very tender....everything on me hurt

anemia

depression

decreased sex drive (haha, maybe that's why I was depressed---I was a newlywed!)

shorter, lighter periods (worried they were going to stop at one point)

very emotional, crying, etc

overall, i looked "sickly"

Needless to say, going gluten-free gave me my life back :D

And, I'm so lucky, that if a single bread crumb (or something tiny through cross contamination) gets in my system.........most of my symptoms return, some within 10-15 minutes :)

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Ok here's my symptoms-

Tonsils radiated in late 1940's to help with tonsillitis..HA It killed the thyroid too

hypothyroidism since 3rd grade and on synthroid since.

Battled my weight all these years..obesity was my second name. sure i've lost 70# 3 times but then kept coming back...

1968 goiter was removed from thyroid due to radiation treatment.

hyogycemia after surgery

1973 dx'd with McClune Albrights syndrome. multiple bone breaks and myxomas forming at the site of the breaks..fibrous dysplasia of the bones discovered.

discovered broken left femer that had healed and producded tumors on the bone. that's when all the surgeries for tumors started and esp allergic reactions to meds 10 surgeries to take the myxomas tumors out in various places on the body, mostly legs and arms.

Dx'd with IBS in 1976 HA :lol:

many ITU's treated with antibotics (now allergic to all antibo but doxy)

1997 dx'd with Fibromyalgia..have been swimming weekly even since then..

broken right foot while riding my bike

dx'd with OA in knees and hips

tested for cushings and pagents disease..?? inconclusive ..bone biopisy ..inconclusive..first total body bone scan lost but 3 move over the years show the fibrous dysplasia in the bones is everywhere and has increased.

still more surgeries to remove yet 5 more tumors

1998 dx'd with Mazenbraud symdrome as an additon to the Albright's

DEXA bone desity test was at the top of the chart..noticed others saying this too (go figure)

1999 using a cane to get around because of balance and hip pain.

endcrinologist, rhumatiligist, internist recommened i go on SSD applied once and got within a yr.

2000 hip replacement

durning these past years the IBS got terrible...tried to do part time work but couldn't because of the

Explosive uncontrolled dirhea.

gurgeling, horrid stomach pains with chills. bloated stomach and swelling in joints. muscular pain and joint

pain increased to using 2 canes but still kept swimming..

dyxleia and brain fog increased terriblely..still can't spell with a ding dong...please for give this is getting tiresome..

quit doctoring for 3 years and just stayed in the house except to try to garden. husband doing all shopping and we didn't do much for fear of accidental D while traveling --just gave it up..-

balance and walking and falling problems--kept dropping things and still do

eye sight is progressivly getting worse. just ch'kd for retianopothy. seems ok and f/b in jaw and face tumors not pressing on optic nerves.

many dental issues..before hip rep..it all started..loss of tooth enamal, 3 root canal, 3 teeth pulled.

June of this year after 5 weeks of explosive uncontroled D keeping me home bound--went to internist of 25 years and he asked for celiac panel it was done incorrectly and results inconclusive..

been on the gluten-free df sf diet for 9 months....

:rolleyes::) joint/muscle pain almost gone, cane gone, stools normal, hair not falling out. skin still dry but trying to find lotion and think i have...

Even with all the 'other issues' it's the explosive, foul smelling uncontrolled D that was the last straw..

of course with all there other issues and then the D---came the depression that all with chronic pain have. years in therapy while trying to work 40 hrs a week, raise a child and keep a home running...the therapy helped me cope...still wondering about the total picture and how or if this all fits together????

THIS ALL BEING SAID I feel so blessed to get this dx.. :) I now have a 'tool and plan' to get my health and life back. on the gluten-free diet..i've lost 45#'s and it has been so much easier... :)

I thank you all on the forum for your constant support and information as I 'walk this new path' on lifes journey.

judy in philly (PS please over look sp as this is as good as it gets)


Judy in Southern CA

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I like the following article about refractory:

https://www.celiac.com/st_prod.html?p_prodi...-47104083536.c8

Karen, that was a very good article. Thanks for posting the link. I am sorry that you are having such severe problems with this.

The article certainly reinforces the title of this topic in that it shows that small amounts of gluten can still be causing damage -- at least for someone with this condition, and I assume the implication is that it is the same for all gluten intolerants. Since I have a mild case of gluten intolerance, I am still trying to come to terms with how strict I need to be. I've not yet accepted for myself the personal care products and crumbs from the toaster line of thinking, but that may just be because I have not yet read enough and still have much to learn. (Also because I don't yet react to miniscule amounts. When that becomes the case, I'm sure one accepts and adapts rather quickly!)

Another thing the article reinforces is good follow-up care. It is exactly because of this that I feel strongly about pursuing diagnosis and getting buy-in from my doctors -- because I want good follow-up care. My mother had colon cancer and her father died from intestinal cancer; my mom has osteoporosis, and her mother had an extremely rough time with this to the point of being bedridden and in constant pain. THanks to the advances in medical science, I have the opportunity to try to avoid these conditions, and I think I may have found the clue - at least one condition that leads up to cancer and osteoporosis.

I believe there was another thread started by Radman that asked why have the endoscopy if you have self-diagnosed either Celiac's or gluten intolerance and will just go on the gluten-free diet. In my mind, the reason for me is because I want my doctors to accept and know that I have either Celiac's or gluten intolerance and provide the appropriate follow-up care! I don't know that I necessarily have to have an endoscopy, just that I want my doctor to accept that I am at least gluten intolerant, and that gluten intolerance leads to Celiac's disease if left untreated, and to know that there are a number of things for which I should be monitored - such as nutritional deficiencies, bone density, thyroid issues and other GI problems.


Gluten intolerant and egg intolerant

Gluten/egg free since 11/2005 :-)

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I like that article too!A positive spin on refractory celiac disease if you like :unsure:

My husband has had a dx of refractory celiac disease as well,but interestingly enough the big 'D' is rarely a problem unless glutened.

It is quite amazing how all coeliacs are different in their recovery rates.

Regarding the continued flattened villi, I do believe that you can have non-responsive villi but still not be refractory, just my opinion though.... There are plenty of people out there that the damage is so extensive that they just are not going to heal but are not refractory in every sense of the word, I believe I am one of those people.....

Confused? I sure am! ;)B)

Karen

This quote from Karen sums up how I feel about hubbies dx.The point of no return-well so it would seem.


It's not enough that we do our best; sometimes we have to do what's required - Sir Winston Churchill

Nikki

Son diagnosed with Coeliac Disease Oct 2006 by biopsy (at age 13yrs)

black_cat.gif

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This is the most informative, useful thread I think I have ever read here. Thanks to all of you.

About 15 months or so ago I did enterolab, which showed gluten intolerance and malabsorption. My doctor has done the blood tests twice, which also indicated gluten intolerance. I never had any "typical" GI symptoms like my Mom. I did the testing because her enterolab results showed gluten intolerance. She had I often complained about being tired and having brainfog.

At first I just didn't eat anything obvious with gluten, but didn't worry about cross-contamination or most sauces/spices/etc in restaurant food. Last August I started having migraines, which I have never had before. I've noticed that I usually get these after eating questionable food at a restaurant. A couple of months ago I ate chinese food that I knew had soy sauce in it. (I had been avoiding soy sauce.) I had the worst brain fog ever. I noticed people were honking more than usual, I think it might have been at me! I also had very bad gas and indigestion. I have also noticed that sometimes now I have D shortly after eating in a restaurant.

I'm now trying to be even more careful. I almost always take my lunch to work and rarely eat out. Thank you to everyone who has posted on this thread. It's helped me learn a lot more about myself.

Martha Ann

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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.

Symptoms as a result of ingesting gluten:

Burning pain at breastbone that extends around the right & through to back (no gallbladder issues) (not same as reflux).

Tenderness and inflammation under the bra line and waist line. (Tight-fitting clothing is uncomfortable.)

Gnawing pain (same location) as if a small animal has sunk it's teeth into my stomach and twisted and won't let go, or as if I am constantly being punched in the stomach.

Sick liver feeling with nausea if touched.

Swollen, inflamed intestines and GI tract. Sore to the touch. Cannot lie on stomach.

Excessive gas and burping.

Sweating & hot flashes.

Borborygmi (lower intestines).

Urgent, explosive loose, light colored, burning bowels, but not watery diarrhea.

Burning, itching, tingling sensation in lips, mouth and throat all the way down through intestinal tract.

Coughing and excessive mucous.

Tachycardia.

Odd, stabbing pains in various large muscle locations (thighs, arms) (Not sure what this is - I imagine that large protein complexes have leaked out into the body proper and have run amuck! - hey - what do I know?)

Symptoms I feel are result of gluten intolerance, or which I feel may be linked, but which I cannot yet directly trace to gluten ingestion:

Brain fog, noticeable memory loss, difficulty thinking

Hypo thryroid.

Aemia, low carnitine.

Anxiety, depression.

Weight gain.

Constant hunger.

Acid Reflux.


Gluten intolerant and egg intolerant

Gluten/egg free since 11/2005 :-)

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OK, here is the very unscientific symptom survey (VUSS) :)

I tallyed up the symptoms of a total of 20 of us (n=20), any symptom by only one person and no others was dropped, and infants/children were not included since the symptoms are quite different. Also one or two of us who clearly had multiple associated complicating illnesses were not included because it was impossible to tease out the celiac symptoms from the other illnesses.

I grouped them in categories that make sense to me. Here they are:

GI

Diarrhea 16 80%

Foul Stools 6 30

Gas/Bloating 13 65

Borborygmi 7 35

Constipation 6 30

Cramping/abd pain 10 50

Nausea/Vomitting 10 50

GERD/heartburn 10 50

anorexia 2 10

Malapsorption/Nutritional

Osteopenia/porosis 4 20

Dental 6 30

Anemia 6 30

Pernicious Anemia 2 10

Weight Loss 4 20

Weight Gain 5 25

Autoimmune

peripheral neuropathy/face numb 6 30

thyroid (Hashi/Graves) 2 10

ataxia 4 20

DH (dermatitis herpetiformis) 3 15

Unclear

Brainfog 14 70

fatigue/weakness 10 50

migraines 3 15

Bone Pain/Gen Pain/neck,hip 14 70

Depression/anxiety 11 55

itchy skin 3 15

joint pain 3 15

mood swings 2 10

insomnia 3 15

mouth ulcers 2 10

Hypertension 4 20

palpitations/tachycardia 2 10

allergies 2 10

hypoglycemia 2 10

asthma 2 10

The most common are: Diarrhea, brainfog, and generalized pain, and gas/bloating. The frequency of brainfog suprised me. Perhaps it is the exorphin issue mentioned by gfp.

In some cases I took the liberty of categorizing elaborately described symptoms into their closest category.

Some symptoms were probably underreported (eg. foul stools, many probably just included this with their complaints of diarrhea).

Some symptoms are so general/common/or vague that it is hard to know whether they are related to the celiac specifically, as a byproduct of being generally ill, or unrelated at all (eg. depression,mood swings,). Some symptoms sound like they may be a variant process like a true allergy to gluten or wheat (eg. tingling around mouth, asthma/bronchospasm, tachycardia). Others are very common and clearly related to celiac but difficult to explain (eg. brain fog).

Finally, I think it is likely that the message board self-selects for more severe cases of celiac (ie. it is more likely that people with severe problems would frequent the board for info and support than someone with less severe symptoms).

Despite all of these limitations, I hope it is useful to look at the varied nature of problems we are all experiencing.

sorry, the cutting and pasting didn't work too well.

The first number is the number of reports of the symptom, the second is the percentage of people with that symptom

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Wow Radman! Thanks for doing that!

The constipation is bang on - I have read several studies showing 30% of celiacs present with constipation, not diarrhea......

Alot of us also seem to be walking zombies with the brain fog, eh? LOL! :lol:

Karen


Karen

positive bloodwork, positive biopsy

Celiac, collagenous colitis, hypothyroidism

endometriosis (at age 20)

spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.

Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs

Rhiannon 8 yrs

Daniel & Connor 6 yr twin boys......

"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."

Orison Swett Marden

Laughter is the shortest distance between two people.

-- Victor Borge

"An optimist laughs to forget. A pessimist forgets to laugh."

Tom Nansbury

"Doctor to patient: I have good news and bad news. The good news is that you are not a hypochondriac."

Unknown

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Very interesting.... Would be interesting to continue this, as I'm sure some people would add on to the list with symptoms they forgot.

Just to comment about the mouth tingling, burning, itching symptom. I get that and was concerned that it might be a true allergy and didn't want to wind up in ER gasping for air, so I had allergy testing done a couple of weeks ago. Tested for over 80 foods with no reactions. When I went in I told them egg, wheat, gluten and honey were bothering me, so I'm sure they tested for that. It wasn't an IgE allergy.

It is weird. I get it even when eating gluten-free foods - seems to be anything with any kind of grains and even nuts and spices. It's strange.


Gluten intolerant and egg intolerant

Gluten/egg free since 11/2005 :-)

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To RADMAN:

We have a couple of things in common: I live in Fredericksburg VA too! I, too, am currently on a path of self-diagnosis (for DH presentation). And I come from a medical family - many many many doctors in my family. So, I did my research at a Medical Library and took it to my Dr who went along with me until the bloodwork (3 tests) were negative - after being relatively gluten-free for 3 months. Finally got biopsy (done by an ALLERGIST) and results not back yet. Awaiting with great anticipation. The Dr. was practicing his newly learned biopsy skills - did 2 for practice and he did ok. Had the whole staff watch.

You can email me offline and I can tell you results of my visiting numerous doctors in Fredericksburg. and Richmond (MCV) and Woodbridge. I don't think I can tell from your posts, are you male or female?

I'm a "she". I have the worst, most ugly, itchiest, horrific RASH EVERYWHERE! Dapsone worked for a few months and then failed, but I'm still taking anyway just in case it starts working again.

I've been gluten-free for the most part. I cheated bigtime on a trip to Hawaii (and paid for it dearly). I don't worry too much about oats cross contamination, and I eat rice and corn and oat cereals with "malt flavoring".....

I looked at conditioners/shampoos and lotions, etc tonight and found wheat in one conditioner (Yves Rocher) and one shampoo/condit - Herbal Essence. But, I'm not yet worried about them.

Considering I'm being more gluten-free and taking more Dapsone and rash is getting worse, I'm really worried that celiac disease/DH isn't my problem and my own diagnosis is wrong. :o But I have the history to support it: 4 yrs ago after I had had gas/bloat/dia/const/smelly stuff for about 10 years I finally read book about IBS and decided to increase my "fiber" (read Whole Wheat) intake by about 1000%. Then I started with the awful rash, but the stomach got better (at least no gas, no smell, no bloat). Hmmmmm. I'm French Canadian, adopted, with no known Blood relatives and my daughter (22 yrs old) has bad stomach problems and gets hit or miss rash!!!!!!!!!!!!!!!!!!!!!! I may get the Enterolab tests.....(might be the best dx tool yet!).

I crave bread, pastry, cake, cookies, toast, waffles, pancakes and IHOP in CENTRAL PARK!~!!!!!!!!!!!!!

So, email me (I think you can do that here) and I'll tell you my Dr. experiences here in Fredericksburg. I am a great supporter of the Medical profession and I am not angry or bitter or upset about what's happened to me - no profession is perfect or clairvoyant! But I AM frustrated with my awful and itchy skin.

Franceen franceenpgeorge@aol.com


Franceen

Diagnosed DH by Allergist via gluten-free Diet Success

Gluten-free since Dec 2005

Gluten-free works so why keep getting tests?

Neg skin biopsy & Neg bloodwork after gluten-free for 3 months

No Endoscopy - need to eat gluten for good test & won't do it

No other Allergies or major ailments!

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:blink: GOING BONKERS HERE..BEEN SEARCHING ON THIS SITE FOR 1/2 HR..WHERE IS THE ORIGINAL POST OF WHERE RADMAN SUGGESTED LISTING ALL SYMPTOMS SO HE CAN COMPLILE IT???? :ph34r::blink::o:unsure: SINCE MOST OF MY SUPTOMS ARE THE SAME AS MOST OTHERS WITH A FEW OTHERS...I'D LIKE TO DO A COPY AND PASTE..YOU ALL KNOW MY STRENTH IN SPELLING :ph34r:

CAN SOMEONE CLUE ME IN WHERE THAT POST FIRST APPEARED...?

THANKS FRIENDS

JUDY IN PHILLY

I can't find the original either:

I'll list the ONE symptom I have and what led me to go to Dr's and do research:

EXTREME Rash (bullous) with clear/minimal bloody fluid. Easily excoriated, crusting, continuing to itch until about the 4th scab scratched off. Mostly bilateral.

Areas I have had rash: Major amount of rash - forearms, front of lower leg, ankles, lower back external genital area.

Lesser amount of rash: back of lower leg, thighs front and back, upper back, midriff, underarms, upper outer arms, back of hands top outside of fingers.

Minor amount of rash: belly, underside of upper arms, inside ear canal, buttocks, palms, top of feet.

NO rash: scalp, face, neck, breasts, bottom of feet.

Are there any parts of the anatomy left?


Franceen

Diagnosed DH by Allergist via gluten-free Diet Success

Gluten-free since Dec 2005

Gluten-free works so why keep getting tests?

Neg skin biopsy & Neg bloodwork after gluten-free for 3 months

No Endoscopy - need to eat gluten for good test & won't do it

No other Allergies or major ailments!

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To RADMAN:

We have a couple of things in common: I live in Fredericksburg VA too! I, too, am currently on a path of self-diagnosis (for DH presentation). And I come from a medical family - many many many doctors in my family. So, I did my research at a Medical Library and took it to my Dr who went along with me until the bloodwork (3 tests) were negative - after being relatively gluten-free for 3 months. Finally got biopsy (done by an ALLERGIST) and results not back yet. Awaiting with great anticipation. The Dr. was practicing his newly learned biopsy skills - did 2 for practice and he did ok. Had the whole staff watch.

You can email me offline and I can tell you results of my visiting numerous doctors in Fredericksburg. and Richmond (MCV) and Woodbridge. I don't think I can tell from your posts, are you male or female?

I'm a "she". I have the worst, most ugly, itchiest, horrific RASH EVERYWHERE! Dapsone worked for a few months and then failed, but I'm still taking anyway just in case it starts working again.

I've been gluten-free for the most part. I cheated bigtime on a trip to Hawaii (and paid for it dearly). I don't worry too much about oats cross contamination, and I eat rice and corn and oat cereals with "malt flavoring".....

I looked at conditioners/shampoos and lotions, etc tonight and found wheat in one conditioner (Yves Rocher) and one shampoo/condit - Herbal Essence. But, I'm not yet worried about them.

Considering I'm being more gluten-free and taking more Dapsone and rash is getting worse, I'm really worried that celiac disease/DH isn't my problem and my own diagnosis is wrong. :o But I have the history to support it: 4 yrs ago after I had had gas/bloat/dia/const/smelly stuff for about 10 years I finally read book about IBS and decided to increase my "fiber" (read Whole Wheat) intake by about 1000%. Then I started with the awful rash, but the stomach got better (at least no gas, no smell, no bloat). Hmmmmm. I'm French Canadian, adopted, with no known Blood relatives and my daughter (22 yrs old) has bad stomach problems and gets hit or miss rash!!!!!!!!!!!!!!!!!!!!!! I may get the Enterolab tests.....(might be the best dx tool yet!).

I crave bread, pastry, cake, cookies, toast, waffles, pancakes and IHOP in CENTRAL PARK!~!!!!!!!!!!!!!

So, email me (I think you can do that here) and I'll tell you my Dr. experiences here in Fredericksburg. I am a great supporter of the Medical profession and I am not angry or bitter or upset about what's happened to me - no profession is perfect or clairvoyant! But I AM frustrated with my awful and itchy skin.

Franceen franceenpgeorge@aol.com

Hi, Franceen,

I don't know if my experience will be any help to you. I self-diagnosed after an awful itchy burny oozing blistering skin rash on both arms. My doctor disagreed with me, and gave me a 10-day course of prednisone, which coincided with my going really gluten-free AND also being careful of skin lotions, detergent, soap , shampoo etc. Before I read about celiac, I was soaking my itchy rash in oatmeal baths and using lotion with wheat germ oil--that probably exacerbated it. A bowl of oatmeal (before I read about oats possibly being a problem) preceded a slight return of the rash. At any rate, the rash did eventually fade after several weeks.

Gluten-free Pantry has a fantastic pancake mix--I just made it today for the first time (I used buttermilk instead of the plain milk called for) and it was so good, my kids clamored for thirds (and I didn't tell them it was gluten-free). Really, every bit as good as the scratch pancakes I used to make! Darned expensive, though--there's gotta be a way to to make it more cheaply.

Also, after 3 weeks of being really gluten-free,. I really and truly stopped craving bread, pasta, and cookies. (Good thing I can still eat chocolate!) I did, however, develop a totally new craving for popcorn and Fritos. I'm not too happy about this, as I never ate salty food before, and I can't imagine that it's any good for me. Oh, well.

Welcome to the board, and good luck!

Radman--thank you so much for your work with our symptoms--very interesting. I wonder if it would be worth doing a survey on this board from the other end--how many adults here were fed soy formula as babies, how many were fed cow's-milk-based formula, and was anybody breastfed? Also, it seems like several here are adopted--is there a larger percentage of adoptees among celiacs than in the general population, or am I putting together things that don't really go together?

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