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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 Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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aehills01

Tests Say Celiac, But No Symptoms

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My daughter was diagnosed with Celiac roughly 1 month ago.  She was super sick from January until recently. She worked in a bakery and we think she probably has always had celiac -- looking back. As soon as she began working around bakers flinging flour around and her making sandwiches, all heck broke loss and threw her into full blown illness. I am glad I had the presence of mind to take her in for testing. We are adjusting to this new way of life in our house and in her life as she prepares to leave home for college. The GI doctor suggested that my husband and I get tested as a follow up, since it is most commonly passed down. In my annual visit to my gynecologist a few days ago, I asked her to run the panel. I just did it because the GI doctor suggested that I should. I was fully confident that I was fine.  To my complete and utter shock, it came back positive! My Ttg was 63, which according to our lab range is definitely high. 

 

The thing is, physically I FEEL fine! I don't have many of the symptoms that I read about so many Celiac's having.  I have regular BM's like clock work. I eat healthy already. I naturally avoid cakes, cookies and bread anyway. I just don't care for those things. So I am wondering, here I am at 46, and thinking do I really need to do anything about it now? In all truthfulness though, with my daughter having just recently been diagnosed, I feel it would be hypocritical to not adhere, and preach to her that she must adhere. She is feeling 90% better after one month.

 

This past year (since August 2012) has been horrible, I had many life changes, which caused me great anxiety. Husband's job loss, one daughter moving back in after 2 years at college, mid-life emotions, another daughter preparing to leave for college, other responsibilities --yada yada... I figured these changes were what made me FEEL awful -- depressed, anxious, confused and unable to really think clearly. Now I am wondering how does all of this fit together. I am super confused.  Is it life changes and extenuating circumstances, or Celiac, and if Celiac, why now after all these years???

 

I used to weigh 115 and now I weigh 108, since March. I feel like the weight loss is d/t the stress of job loss, I looked at food and just could not eat because my tummy was tied in knots. So physically I feel ok, emotionally a little less than fine, but on the up swing since all of the above mentioned things are leveling out, so any ideas on how to approach this?

 

Thanks -- this is my first post  :D

 

 

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Yep.  I went in for a routine colonoscopy and the GI doc told me he suspected Celiac.  He ordered blood tests and six weeks later I was scoped.  No tummy issues.  Just some anemia that I've dealt with all my life.  I do have Hashimoto's Thyroiditis, but I've had that over 15 years.  

 

Needless to say I was shocked!  My husband's been gluten-free for 12 years.  Wheat didn't bother me (or so I thought)!  

 

So, it's been an easy transition to the diet because I've been living it (preparing meals for my hubby).

 

Not adhering to the diet will cause future problems.    

 

 

Get your husband to covert too (at least in the house). My daughter's doing well on the gluten-free diet.  She's gets gluten treats in her lunch, but otherwise, she's gluten free.  

 

Good Luck!

 

 

 

 

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welcome aehills01  :)

 

I'm so glad you were able to figure out what was going on with your daughter!  ok don't take this the wrong way because I am far from perfect and don't want to sound self-righteous, but as a parent you have the chance to influence your children's lives every day.  that is an awesome opportunity, and I'm guessing your daughter wouldn't mind having a partner in crime ;)  I recently heard this great story that made me think of your statement above of not wanting to seem like a hypocrite to your daughter.  I'm pasting the story from this link http://interviewangel.com/gandhis-lesson-in-creative-cooperation/

 

There was a six-year old boy living in the same Indian community as Mahatma Gandhi.

This boy had a very strong sweet tooth.  He couldn’t resist sugar.

Because he was diabetic, the sugar created painful boils all over his body.

His parents took him to the doctor, who said the boy must avoid all sweets; otherwise, the ailment would not go away.

The parents nagged the boy every day to stop eating sugar, but this was a challenge the boy wasn’t willing to overcome.

In desperation, the boy’s mother came to Gandhi and asked if he could please convince her boy not to eat sweets.

Gandhi said, “Come back in 15 days and I’ll speak to him then.”

So the mother came back after 15 days.

Gandhi took her son aside and spoke to him for a few minutes.

The boy went home and immediately gave up sweets.

The mother was puzzled.

She asked Gandhi later, “Why did you ask us to come back after 15 days? And what miracle did you perform to get my son to quit eating sweets?”

Gandhi replied that it wasn’t a miracle.

Said Gandhi, “When your boy first came to me, I too had been eating sugar.”

He had told the boy that he couldn’t ask him to do something he, Gandhi, wasn’t willing to do himself.

 

 

 

you don't have symptoms, but you have silent celiac, which means even though you don't have symptoms, gluten is damaging your body.  travel this journey together with your daughter :) Have you gotten your nutrient levels tested?  Since those with celiac are often deficient in nutrients, I would suggest the following tests:

 

Vitamin/Minerals:

Complete Blood Count (CBC)

Complete Metabolic Profile (CMP)

Vitamin B-12

Folic Acid

Vitamin A, D, E, K

Ferritin

Iron

Magnesium

Zinc

Copper

Niacin

Riboflavin

C-Reactive Protein

Good info from University of Chicago Celiac Center:

http://www.cureceliacdisease.org/archives/faq/what-common-nutrient-deficiencies-might-an-adult-experience-prior-to-diagnosis

 

let us know if you have any other questions!

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Welcome to the boards.

 

It sounds like you do have some symptoms like cognitive problems and anxiety - both really common symptoms. Fatigue and weight loss are more common symptoms. I bet you are also low in some vitamins,which P of P listed above, and that can affect your quality of life.  I wouldn't be surprised if you have some other symptoms like headaches or achy joints? What about hair thinning out slowly over the years or even premature grey hairs?

 

If you look up a comprehensive list of symptoms of celiac disease, you might be surprised to find you have a few of the non-classic symptoms...

 

I hope you will go gluten-free. Eating gluten will keep your body in a constant state of inflammation which is a bad thing if you want to avoid heart disease, cancer or triggering other autoimmune problems like thyroiditis. You will be hurting yourself, and setting a bad example for your daughter if you continue to eat gluten.  You really should stop. :( It will be hard the first few weeks, but after a few months, it really does get very easy. Honest!

 

And if you have any other children, you should have them tested too,

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My daughter was diagnosed with Celiac roughly 1 month ago.  She was super sick from January until recently. She worked in a bakery and we think she probably has always had celiac -- looking back. As soon as she began working around bakers flinging flour around and her making sandwiches, all heck broke loss and threw her into full blown illness. I am glad I had the presence of mind to take her in for testing. We are adjusting to this new way of life in our house and in her life as she prepares to leave home for college. The GI doctor suggested that my husband and I get tested as a follow up, since it is most commonly passed down. In my annual visit to my gynecologist a few days ago, I asked her to run the panel. I just did it because the GI doctor suggested that I should. I was fully confident that I was fine.  To my complete and utter shock, it came back positive! My Ttg was 63, which according to our lab range is definitely high. 

 

The thing is, physically I FEEL fine! I don't have many of the symptoms that I read about so many Celiac's having.  I have regular BM's like clock work. I eat healthy already. I naturally avoid cakes, cookies and bread anyway. I just don't care for those things. So I am wondering, here I am at 46, and thinking do I really need to do anything about it now? In all truthfulness though, with my daughter having just recently been diagnosed, I feel it would be hypocritical to not adhere, and preach to her that she must adhere. She is feeling 90% better after one month.

 

This past year (since August 2012) has been horrible, I had many life changes, which caused me great anxiety. Husband's job loss, one daughter moving back in after 2 years at college, mid-life emotions, another daughter preparing to leave for college, other responsibilities --yada yada... I figured these changes were what made me FEEL awful -- depressed, anxious, confused and unable to really think clearly. Now I am wondering how does all of this fit together. I am super confused.  Is it life changes and extenuating circumstances, or Celiac, and if Celiac, why now after all these years???

 

I used to weigh 115 and now I weigh 108, since March. I feel like the weight loss is d/t the stress of job loss, I looked at food and just could not eat because my tummy was tied in knots. So physically I feel ok, emotionally a little less than fine, but on the up swing since all of the above mentioned things are leveling out, so any ideas on how to approach this?

 

Thanks -- this is my first post  :D

 

 

welcome aehills01  :)

 

I'm so glad you were able to figure out what was going on with your daughter!  ok don't take this the wrong way because I am far from perfect and don't want to sound self-righteous, but as a parent you have the chance to influence your children's lives every day.  that is an awesome opportunity, and I'm guessing your daughter wouldn't mind having a partner in crime ;)  I recently heard this great story that made me think of your statement above of not wanting to seem like a hypocrite to your daughter.  I'm pasting the story from this link http://interviewangel.com/gandhis-lesson-in-creative-cooperation/

 

There was a six-year old boy living in the same Indian community as Mahatma Gandhi.

This boy had a very strong sweet tooth.  He couldn’t resist sugar.

Because he was diabetic, the sugar created painful boils all over his body.

His parents took him to the doctor, who said the boy must avoid all sweets; otherwise, the ailment would not go away.

The parents nagged the boy every day to stop eating sugar, but this was a challenge the boy wasn’t willing to overcome.

In desperation, the boy’s mother came to Gandhi and asked if he could please convince her boy not to eat sweets.

Gandhi said, “Come back in 15 days and I’ll speak to him then.”

So the mother came back after 15 days.

Gandhi took her son aside and spoke to him for a few minutes.

The boy went home and immediately gave up sweets.

The mother was puzzled.

She asked Gandhi later, “Why did you ask us to come back after 15 days? And what miracle did you perform to get my son to quit eating sweets?”

Gandhi replied that it wasn’t a miracle.

Said Gandhi, “When your boy first came to me, I too had been eating sugar.”

He had told the boy that he couldn’t ask him to do something he, Gandhi, wasn’t willing to do himself.

 

 

 

you don't have symptoms, but you have silent celiac, which means even though you don't have symptoms, gluten is damaging your body.  travel this journey together with your daughter :) Have you gotten your nutrient levels tested?  Since those with celiac are often deficient in nutrients, I would suggest the following tests:

 

Vitamin/Minerals:

Complete Blood Count (CBC)

Complete Metabolic Profile (CMP)

Vitamin B-12

Folic Acid

Vitamin A, D, E, K

Ferritin

Iron

Magnesium

Zinc

Copper

Niacin

Riboflavin

C-Reactive Protein

Good info from University of Chicago Celiac Center:

http://www.cureceliacdisease.org/archives/faq/what-common-nutrient-deficiencies-might-an-adult-experience-prior-to-diagnosis

 

let us know if you have any other questions!

The story was very poignant, and I don't take your comments as offensive at all, so don't worry about that.

 

I appreciate your input SO much. I do have a follow up appointment with the GI doctor for my daughter and plan to further investigate whether I should get an endoscopy. I cook gluten free at home, just to keep things more simple for all of us, so that part won't be hard. I just need to get used to the idea, that I am now included in the condition. It's funny because I did a lot of research on foods, restaurants, recipes and stores to help HER, now I need to implement it myself.

 

 I have been super thin my whole life. People always ask me "what do you do to stay so thin?" My response has always been "that's just the way I am."  Hmmmm, now there may be more to the story. It will be interesting to see how this unfolds. Thanks for your time in answering/addressing my comments.

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Welcome to the boards.

 

It sounds like you do have some symptoms like cognitive problems and anxiety - both really common symptoms. Fatigue and weight loss are more common symptoms. I bet you are also low in some vitamins,which P of P listed above, and that can affect your quality of life.  I wouldn't be surprised if you have some other symptoms like headaches or achy joints? What about hair thinning out slowly over the years or even premature grey hairs?

 

If you look up a comprehensive list of symptoms of celiac disease, you might be surprised to find you have a few of the non-classic symptoms...

 

I hope you will go gluten-free. Eating gluten will keep your body in a constant state of inflammation which is a bad thing if you want to avoid heart disease, cancer or triggering other autoimmune problems like thyroiditis. You will be hurting yourself, and setting a bad example for your daughter if you continue to eat gluten.  You really should stop. :( It will be hard the first few weeks, but after a few months, it really does get very easy. Honest!

 

And if you have any other children, you should have them tested too,

Thank you so much for your thoughts. Like I mentioned in the other response, I plan to further investigate, and for sure I will go gluten free. I have to. I want to be a good example to my daughter -- of course. But also for my own health and future. You are so kind to respond to my questions, thank you.  Do you know of a place to look for a comprehensive list of symptoms? I found one person post that she had a runny nose for 20+ years, just plain old post nasal drip, and once she stopped gluten that ended also. That is ME. I have a kleenex tucked in ever pocket of pants, jacket, bag, purse etc. because my nose ALWAYS drips. That is just how my kids know me is carrying a kleenex, so that will be interesting to see if that ends.

 

I started going grey at 29, my hair has not thinned, however. I don't have aches or joint pain, or headaches. But it will be interesting to see if the fatigue, anxiety and brain fog go away. 

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hello & welcome :)  hey,, check my s/n - is it me who has celiac??  NOPE lolz - i was in denial for probably 5 months.  indeed, i have celiac.  like you, i was wasting away!  it came to the point that i was so sick, my doc threatened hospitalization.  ain't nobody got time for that - i dragged my feet, trying to blame everything else for my ill health.  i do not know why, i guess i hate change (who doesn't), but in retrospect, i could have been feeling better for those 5 months.  you would not *believe* how many symptoms i 'didn't' have (that i didn't notice i was suffering from) until they went away!  i had a CONSTANT headache <just thought it was a part of being 40+) i just woke up one day and noticed it didn't feel like i had been crossing my eyes all day lolz.  i am not fatigued anymore (still lazy, tho, haha) my hair came 'back' etc etc etc 

 

read the newbie 101 thread, it will give you some insight and handy info.  good luck!  :)

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That is a good list, but I laughed because my only symptoms were stomach pain and bloat, C, and fatigue... No wonder I had to diagnose myself before the doctor agreed. Lol ;)

The link for 300 symptoms was on the page that P of PT gave you. http://www.cureceliacdisease.org/wp-content/uploads/2011/09/CDCFactSheets10_SymptomList.pdf

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