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      Frequently Asked Questions About Celiac Disease   09/30/2015

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

Odd Happenings That May Have Got Us Diagnosed Sooner:
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14 posts in this topic

I went 30 years undiagnosed.  My family had no records of Celiac.  I had mostly fatigue and bloating.  I had not much diarreah and from 20 years or, so was not terribly thin. 

 

.I had several odd things occur over my 30 years that may have indicated a severe problem, but they were dismissed. My list:

 

 

 

Low iron if not supplemented continuously (Since high school)

 

The dentist noted the enamel gone off my teeth (at about 20Years)

 

Failure to absorb water during ultrasound testing in pregnancy.

 

The dentist thought bone mass was low (at about 25 years) He contacted the MD.  She said to take "Tums"

 

Failure to absorb glucola for blood sugar test.

 

Extreme digestion issues in pregancy.

 

Fogginess and fatigue: 

 

High blood pressure and problematic blood pressure curve.  Blood pressure plummeting when standing.

 

Failure to absorb nutrients.

 

Frequent urination/trace of blood in urine

 

Cyst on ovary.  (No consideration of cause)

 

Body and feet swelling

 

 

 

I think this list is even stranger:  Tests that were negative.

 

Good score on Blood counts.

 

Urine tests normal.

 

Does anyone else have an odd happenings list?  What tests showed normal results while you suffured?

 

Diana

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My daughter tested negative for everything under the sun, despite having diarrhea 20+ times a day, no fat on limbs but huge belly, thinning hair, nails not growing, horrific rashes that didn't respond to treatment, odd behavior

Our original diagnosis was reflux, and to cut out juice (which she never ever drank) and dairy ( which she had an anaphylactic reaction to so I would have known if she was getting any!)

She got to the point she was lying on the look all day crying, not eating, sleeping our growing, bt all her bloodiest were negative fr everything from parasites, celiac, diabetes, etc

Ct out gluten.......by magic she is all better

Our pediatrician said celac can affect yor gut, our blood is not your gut, don't believe blood tests blindly...........which is why he is still or doctor!

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Its IBS or its just stress... yahuh.... suuuuuure.... <_<

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I had the low amniotic fluid during pregnancy too. I wish my dentist hadn't passed off my complaints of canker sores as hormonal. Although I take most of the blame because I'm notorious for avoiding doctors so until I was dealing with daily nausea I didn't discuss my annoying symptoms with doctors earlier... Even then I had to ask for the celiac testing as I was told reflux, gall bladder, IBS... I am hoping as awareness increases fewer people have to suffer with these symptoms for years.

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If I could have only put the pieces of the puzzle together....years for me....

Neck pain & headaches

Joint pain

Bad stomach cramps and gas, sometimes doubled over after eating pasta and breads, especially pizza and Chinese food

Bloating immediately after eating (Dx'd as IBS-C)

Hardly had periods

Insomnia

Anxiety

Sweating then chills for no reason

Constipation with bouts of D

Blood work showed low vit D, B12 and iron

Was dx'd Hypo thyroid 2 years ago and with meds never got better

Wish I knew about celiac long ago.

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After a doctor visit the office staff called and said they were worried about my cholesterol levels.  They said my tests showed my HDL / LDL was way off and the LDL was too high.

 

A few days later they called back and said oops, we goofed.  Actually my cholesterol was great, they had read the test results wrong.  They said my cholesterol ratio was one of the best they had ever seen, like an athlete. Probably it was good due to malabsorption.

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After a doctor visit the office staff called and said they were worried about my cholesterol levels.  They said my tests showed my HDL / LDL was way off and the LDL was too high.

 

A few days later they called back and said oops, we goofed.  Actually my cholesterol was great, they had read the test results wrong.  They said my cholesterol ratio was one of the best they had ever seen, like an athlete. Probably it was good due to malabsorption.

Wow!  I know of a few people who would go for malabsorption cholesterol!  Anything to get the bad numbers down!  I like the way you said this with humor.  Atleast, I took it humorously.  It freaks me out that I heard this thin lady say that she was unusually low on cholersterol test last summer.  She mentioned that she was not cautious in any way.  I wonder who she was and if mal-absorption was her friend.

 

Diana

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(You know, I never believed in cholestorol. I mean, I know there IS such a thing, but I never believed it did what they said it did as far as heart disease. They are now finding out that it doesn't. Studies have shown that people with LOW cholestorol are just as likely to have a heart attack as those with high. They now think that it is INFLAMMATION that causes "hardening of the arteries" rather than high cholesterol, and they are finally coming around to realize that eating fat is not as bad for a person as eating lots of carbs.)

 

Anyway, back on topic - I wish I hadn't been in denial for so long. I have no one to blame but myself. I knew that with Mom having it, my odds of having it were higher than the average person. I blamed my bathroom issues on alcohol. I blamed my rashes on contact dermatitis. I never put all the symptoms together and admitted I had a problem because I didn't WANT to have to learn to cook. I didn't want to give up bread. I didn't want to endure the funny looks and unkind comments that my Mom got from people.

 

It was only when my psoriasis got so bad it hurt both to walk and to play my guitar that I bit the bullet. Too bad I waited so long. I think I could have saved myself a lot of damage and seconary intolerances.

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Me too.  Doctors should be required to pass continuing education exams to continue to practice.  Some of them only know what they learned in medical school and things change.

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Yep, things do change.  Some of the celiac centers sponsor conferences on celiac disease.  I suppose a patient could suggest their doctor go to one.

 

Another thing that was a clue I missed is lactose intolerance.  I developed lactose intolerance years before finding out I had celiac disease.  It's probably one of the most common early signs that people miss.  And doctors miss also.  It wouldn't hurt for doctors to test their patients with lactose intolerance for celiac disease.

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I had the usual gut pain as a kid (before my teens). Firstly noticed lactose intolerance during my teens, then sores all over my back and chest in my early 20s. Noticed a Soy intollerance in my mid twenties, Rye bread started to hit me hard at age 27. Pretty much lost all breads and digestion at age 36 and had a bloated gut the size of ET's and started to get immune system errors soon afterwards. Just after the bloating I was back to my normal 6 pack, I'm a lean guy so that bloating was ODD.

 

My cholesterol, blood pressure and pulse has always been athlete standard. But then again so has been my malabsorption  :P I've always been underweight and I don't think grew to my full potential in height either (I ended up average but I'm sure that wasn't my potential given how thin my bone structure ended up). I had very sore knees during my teens and again in my 30s to the point of struggling to walk the second time (they are perfect now).

 

I agree lactose intolerance is the first notable sign of celiac. I reacted to lactose more painfully and more than a decade before reactions to gluten showed up but at the same time I'm sure the gluten caused the lactose... I have friends with kids that are struggling from lactose intolerance now before they are 10 years old. One of the mothers is troubled by milk AND wheat and none of them will listen to my advice to stop eating gluten before it's too late. Also know a girl in her early 20s also struggling with considerable gut problems but again.. wont listen (yet)

 

So many people just dismiss gut pain as nothing and sores as acne. no one should have either.. Find the cause.

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I developed lactose intolerance too.  That was considered normal.  Stop eating cheese then, dummy.

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The thing that kills me is my parents and doctor are the ones who dropped all the balls. As a small child I got the same treatment all kids did back then, after eating I was told to go outside and play. I would then promptly poop my pants. Every time. I was berated over and over, repeatedly, multiple times a day, about what a horrible person I was because I couldn't just use the bathroom like a normal human being. I also wet the bed well past the age that I should have, and got the same treatment for it. The only person who treated me with any love and kindness about these incidents was my Grammy. If at any point my parents had considered that this was a medical problem and not a behavior problem and my doctor wasn't a moron (which is a whole other issue) maybe I could have been diagnosed as a child.

 

I also thing dentists should be educated about celiac. If any of the dentists I had ever seen were educated about how celiac can ravage a person's mouth, they may have been able to refer me to ask my doctor to be tested.

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Hi

I don't consider these points for missed diagnoses but the posts above reminded me of a few things re: pregnancy.

I weighed a stone less when I had my son - that is a stone less that pre-pregnant weight, so had lost weight in pregnancy.

I only breastfed for 6 weeks because it drained me so and made me lose more weight. I think I have read somewhere that celiacs tend to only breastfeed for a short length of time - don't know if this is true but it was with me.

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    • Good advice Ennis!  I would add baking and freezing some gluten-free cupcakes to have on hand, so that she is never left out.  Be sure to read our Newbie 101 tips under the coping section of the forum.  Cross contamination is a big issue,  If the house is not gluten free, make sure everyone is in board with kitchen procedures.   Hopefully, your GI talked about the fact that this AI issue is genetic.   Get tested (and your TD1 child).  TD1 is strongly linked to celiac disease.  About 10% of TD1's develop celiac disease and vice versa.  Get tested even if you do not display any symptoms.    http://www.cureceliacdisease.org/screening/ https://celiac.org/celiac-disease/understanding-celiac-disease-2/diagnosing-celiac-disease/
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