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Gene tests were used as exclusionary tools before. Now, we know other genes are associated with celiac. People on here are living proof! So the tests are questionable anyway. More research needs to be done.

Celiac can "trigger" any time in life. If someone is "neg" on biopsy or blood work in 2011, they may be "POS" in 2013 or 2016....

Consuming gluten is what determines this--but by then, how many OTHER health problems have developed? You simply cannot fathom what I have been through--as have so many others on this site--because of LONG unDXed gluten intolerance.

As for the Celiac vs. NCGI controversy about malabsorption/villi damage, there are loads of people who are NOT Dxed as celiacs and they have had extra-intestinal symptoms nonetheless. This is where the concept of a leaky gut comes into play. These people were deathly ill, had eczema, psoriasis, brain fog, anxiety, vitamin deficiencies and various other complications. Coincidence? Hardly.

Leading celiac researchers, like Dr. Fasano have already proven gluten sensitivity causes many symptoms in the body--just like celiac does.

If you want the menu/shopping list --and lists of safe/unsafe ingredients-- I can post it here or in a personal message. Let me know.

waffles? My husband liked the Van's frozen waffles, but since I cannot have soy flour, I did not taste them. I did have some at a gluten-free cafe though and they were AWESOME!! Recipes abound on the internet.

This change in lifestyle is not that difficult once you learn the ropes.

I do not trust doctors anymore. Well, maybe one--my new celiac-savvy GI. :)

They kept me ill for most of my life because the protocol for diagnosing celiac is just plain wrong. I knew in my heart what it was and I was RIGHT! I went from 3 years of starving, weak, in agonizing pain, out- of- my head with gluten stupor and feeling like death would be easier---to getting my life back!!!. I have gained some weight and my arms and legs work again. I sleep more than the 2 hours a night I got for over a year. I am not living under a cloud if inexplicable anxiety anymore. Dozens of symptoms slowly, gradually disappearing, though I have plenty more to go. I even had to push for proper follow up testing!! WE have to be our own best advocates!! The AMA just does NOT GET IT!! Sorry for the rant, but I am really upset about your kiddo and I wish someone had told me what this was when I was 12. My life would have been so different. One simple food protein. geesh! <_<

I am better now. Why? No medications, no magic bullet....just this: NO GLUTEN!! :)

That is really interesting about the leaky gut thing. When my DD went in for suspected appendicitis they dxd her with LYMPHOCYTIC ENTERITIS. They could see it on the CT scan. Isn't that associated with leaky gut? I believe it is also associated with Celiacs but I need to do some more searches on that.

We would love to get her off epilepsy meds since her EEGs are normal but she has seizures every year or so. I think they are gluten related since they are occipital which the GI confirmed is related to Celiac disease.

I want to thank all of you again for your support and sharing your stories with me. But most of all for your concern.

I would LOVE ANY ADVICE and RECIPES on gluten free cooking or products. We will be starting her gluten free regardless of her dxd or lack thereof.

Thank you once again!

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Oh, that's nothing....here, check this out:

http://sites.google.com/site/jccglutenfree/

That was super helpful. I forwarded to my husband and mother. I am so on board. Gluten free diet is in her future. Very soon.

Oh and I may be confused on the lymphocytic enteritis. It was something similar to that. What they saw was swollen lymph nodes near her appendicitis which explained the pain she was having.

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That is really interesting about the leaky gut thing. When my DD went in for suspected appendicitis they dxd her with LYMPHOCYTIC ENTERITIS. They could see it on the CT scan. Isn't that associated with leaky gut? I believe it is also associated with Celiacs but I need to do some more searches on that.

We would love to get her off epilepsy meds since her EEGs are normal but she has seizures every year or so. I think they are gluten related since they are occipital which the GI confirmed is related to Celiac disease.

I want to thank all of you again for your support and sharing your stories with me. But most of all for your concern.

I would LOVE ANY ADVICE and RECIPES on gluten free cooking or products. We will be starting her gluten free regardless of her dxd or lack thereof.

Thank you once again!

The more you tell me about her symptoms, the more I cringe.

And yes, seizures are a symptom.

Please look at this:

http://glutenfreeworks.com/gluten-disorders/celiac-disease/symptom-guide/

and get yourself a copy of "Gluten Free Living for Dummies" by Danna Korn. Written by a Mom of a celiac and extremely helpful for newbies.


"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif

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oops accidentally posted twice and then tried to delete the post only to have a -1 in red show up. Oops newbie mistake.

I fixed it for you. :)

That's how you vote a post "UP" as being helpful. :)


"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif

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She had this which is probably not associated: MESENTERIC LYMPHADENITIS not enteritis.

maybe not, but hon, any INFLAMMATION in the body is caused by something.


"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif

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oops accidentally posted twice and then tried to delete the post only to have a -1 in red show up. Oops newbie mistake.

And I saw a -1 on the post and hit the + key, so now it has a 0. Maybe my newbie mistake too!


Gluten-free since the end of October 2011

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And I saw a -1 on the post and hit the + key, so now it has a 0. Maybe my newbie mistake too!

ha ha that's okay, hun. I fixed it and put it back to neutral --but now, your vote up has given her a ONE! She deserves a "Thumb's up" for all the hard work she is doing. :)


"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif

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Okay, Mom.... here you go. is your printer ready? :lol:

This info was compiled for a friend with celiac disease and my family and is a starting point for information about celiac/gluten intolerance. Let me know if I can help further.

For info:

http://celiacdisease.about.com/od/symptomsofceliacdisease/a/celiacsymptoms.htm

http://www.celiacdisease.net/symptoms

Dietary concerns –LISTS OF safe and unsafe gluten free foods:

https://www.celiac.com/articles/181/1/Safe-Gluten-Free-Food-List-Safe-Ingredients/Page1.html

https://www.celiac.com/articles.html/unsafe-gluten-free-food-list-unsafe-ingredients-r182/

Good book: Living Gluten Free for Dummies--Danna Korn

A quick “get-started” menu for gluten-free eating follows:

FLUIDS: Drink 1/2 your body weight daily in filtered H2O every day. A must! Celiacs are dehydrated from malabsorption. Plus, it helps cleanse toxins from body tissues and organs and keep the bowels running smoothly. Gluten is an invasive toxin.

AVOID sugary sodas and caffeinated drinks like coffee for now. They wreak havoc on the gut.

AVOID DAIRY for a few months if you can. Lactase, which is the enzyme that breaks down the sugar lactose, is produced in the tips of the villi. When the villi get blunted in celiac disease, sometimes the ability to digest lactose is decreased and you can become “lactose intolerant.” This may cause bloating, stomach cramps, diarrhea, etc. After you go gluten-free, the villi will heal and most people are able to tolerate dairy foods again.

PROBIOTICS are a must. A good one is CULTURELLE.

Celiacs/leaky guts have an unbalanced amount of gut flora.

Read why:

http://www.thefooddoc.com/probiotic_facts

“Irritable Bowel” is not a diagnosis but a list of symptoms affecting the large intestine. All the digestive issues like acid reflux and heartburn, excess gas, camping, diarrhea and constipation will disappear or diminish on a gluten free diet.

SUGAR--too much makes me hyper, so I use stevia, honey, pure maple syrup (not Bottled pancake syrup—they may contain gluten!)

Earth balance soy-free is a good choice if you cannot have butter. You need some good essential fatty acids: Safflower oil, sunflower oil, olive oil, coconut oil.

A while foods diet is best for healing. Realistically, this may be difficult for a kiddo on the run, so I have included gluten-free products to use if you want variety or for packing lunches. Look under PARENTS OF children with CELIAC forum for more helpful advice.

Breakfasts:

Erewhon crispy brown rice cereal or gluten-free Kellogg's RICE KRISPIES, gluten-free CHEX corn or gluten-free CHEX Rice cereal, gluten-free CHEX honey-nut or gluten-free CHEX Cinnamon

Add: rice milk, almond milk or coconut milk and add berries or sliced banana.

CERTIFIED gluten -free oatmeal w/cinnamon (glutenfreeda brand, Bob's Red Mill )

Eggs and bacon or sausage with gluten-free toast or bagel (Kinnikinnick, Udi's or homemade)

Cream of buckwheat --it's good!! (no worries--Buckwheat is not from the wheat family)

Amaranth pancakes w/pure maple syrup (bottled syrups can contain gluten)

gluten-free packaged pancake/waffle mixes (Pamela's brand is good)

Van's frozen waffles.

I personally avoid soy because of the affect it has on hormones (thyroid, estrogen) so watch how much soy flour she gets in gluten-free foods.

FRUITS and VEGGIES—eat plenty of these.

Snack ideas that are safe and handy :)

Cozy Shack Rice Pudding cups (in the dairy section)

All natural applesauce cups

gluten-free cookies or muffins (Bake them or buy them.)

Pamela's Baking Mix is versatile and good for cookies, baked goods.

Bagel with cream cheese and jam . Udi's are pretty good (frozen section)

Pamela's makes a very good brownie mix too!

Chobani Yogurt

Lundberg rice cakes or sliced apples and celery sticks with natural peanut butter smeared on

Glutino crackers with cheese or peanut butter

BOAR's Head brand pepperoni, salami, all their cold cuts and cheeses

Planter's peanuts, almonds, cashews.

SUNMAID raisins, prunes. Craisins by Ocean Spray. (some raisins and dried fruits are dusted with flour to keep them from sticking but these brands are safe.)

smoothies- made with coconut milk, fruit, yogurt, etc

Potato chips----like Cape Cod or Kettle Brand or Utz

Indiana Popcorn--comes in all flavors--the kettle corn is delicious

Glutino brand pretzels—they come in all flavors even chocolate -coated

Coconut milk ice cream (Turtle Mountain So Decadent brand is very good)

Ice Cream, if dairy is not a problem for you.

Organic Corn chips w/salsa, hummus, or Wholly Guacamole

Sunflower , pumpkin or flaxseeds

Candy—Hershey's kisses or bars, regular size Reese's cups, Snickers, York peppermint patty, Butterfinger and M &Ms plain and peanut. Ghirardelli squares.

Make some Chex mix with gluten-free chex cereals

gluten-free Rice Krispies treats (recipes are online)

Check the labels of all packaged products-- if they were made with wheat or malt gluten, they will state so on the package.

LUNCH and DINNER:

Leftovers from last night's dinner make an easy lunch

Some Progresso soups are gluten-free. Check the label!

A sandwich with gluten free bread—UDIs and Canyon Bakehouse are decent packaged breads, rolls and bagels, but homemade is the way to go.

I have a simple recipe for white sandwich bread that is delicious if you want it.

A big salad with tons of veggies and grilled chicken or shrimp and Hard-boiled eggs/ with gluten-free or homemade vinegrette dressing. A list of gluten free salad dressings is available online. Marzettis, and most of WishBone and Ken's are okay.

Homemade vegetable minestrone ,chicken soup, stews, black bean or white bean chili (gluten-free stock)

chicken or bean nachos (can use corn tortillas)

red beans and rice

almost all mexican food is safe (just no flour tortillas!)

pasta and sauce w/meatballs (brown rice or corn pasta TINKYADA BRAND rice pasta is delicious! Cook 13 minutes exactly) and use gluten-free breadcrumbs (just crumble some gluten-free bread and season)

meatloaf (beef or ground turkey) baked potato or yams, green veggie of some kind

Other proteins: roasted or grilled chicken, turkey, pork, beef, salmon, talapia, scallops, lamb, some sausages are safe, bacon (Check labels)

Vegetarian chili--homemade.

I eat a variety of veggies..whatever looks fresh at the super market or farmer's market or stands...steamed, grilled--- or roasted root veggies in stock.

Sweet potatoes—baked at 350 degrees in a pan for 45-50 mins.--are yummy

Potatoes—roasted, grilled, whipped with milk

Fritattas with veggies and salad

Stuffed peppers—with ground turkey, beef or lamb and rice

ANY recipe can be altered--just use gluten-free breadcrumbs, or rice pasta ---use any flour made from amaranth, corn, bean, etc...just NO WHEAT, RYE OR BARLEY or cross -contaminated OATS. Quaker oats are Cced!!. Bob's Red Mill are not.

Cross-contamination is the bane of our existence. A package stating a product is “Gluten-free “ does not always guarantee it was processed and manufactured and packaged in a dedicated facility. I used dedicated facilities if I use gluten-free products. (This is just my personal preference as I react quickly to a small amount of gluten.)

Some DEDICATED gluten-free facilities are:

Bob's Red Mill

1-2-3 Meredith's Marvelous

Authentic Foods

Pamela's

Cause You're Special

Udi's

The Cravings Place

Andean Dream

Kinnikinnick

Organic Nectars

Orgran

Foods by George

gluten-free FULL FLAVOR Gravy

Prana Bar

Enjoy Life

EnergG

Gillian's

They make all kinds of ready made mixes and flours to make it easy to start baking.

That should get you started.

Best wishes!


"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif

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I am a crying mess right now. Thank you for your kindness and all of the information. I heard about Dana Korn's book through my friend. Anyway, my printer is going crazy and I am creating a binder.

I really think gluten is her nemesis and I can't wait to get her started on a gluten free diet. I am pretty upset at how many symptoms my doctor didn't even ask about before she made the "she doesn't have celiac" decision. Well at least she granted the gene test.

Thanks for fixing all my silly newbie mistakes on this thread.

off to read through my tears. I want her well.

Thank you!

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I am a crying mess right now. Thank you for your kindness and all of the information. I heard about Dana Korn's book through my friend. Anyway, my printer is going crazy and I am creating a binder.

I really think gluten is her nemesis and I can't wait to get her started on a gluten free diet. I am pretty upset at how many symptoms my doctor didn't even ask about before she made the "she doesn't have celiac" decision. Well at least she granted the gene test.

Thanks for fixing all my silly newbie mistakes on this thread.

off to read through my tears. I want her well.

Thank you!

HOLD ON!

If you want a "REAL" diagnosis from biopsy??--she needs to be CONSUMING GLUTEN!!!! Once you take gluten out of the diet, you start the healing process of the villi and the antibodies start to go down and the biopsy results could be affected, rendering a false negative.

Wait to see if the doc will do it--press for it to be done ASAP. Then, there will be no worrying "if you should have done it" or not? Unless of course, you do not want to put her through it?

It's your call, Mom and Dad.

Even if the biopsy is NEG, you should still go gluten-free and see how she does. That's my two cents :)

In the meantime, get her started on probiotics. IMHO

Please keep me posted!!! ;) Irish


"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif

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HOLD ON!

If you want a "REAL" diagnosis from biopsy??--she needs to be CONSUMING GLUTEN!!!! Once you take gluten out of the diet, you start the healing process of the villi and the antibodies start to go down and the biopsy results could be affected, rendering a false negative.

Wait to see if the doc will do it. Then, there will be no worrying "if you should have done it" or not? Unless of course, you do not want to put her through it.

It's your call, Mom and Dad.

Even if the biopsy is NEG, you should still go gluten-free and see how she does. That's my two cents :)

In the meantime, get her started on probiotics. IMHO

Yes, we are definitely waiting to see if she is gene positive. If she is, I can get her biopsied soon and then go gluten-free. So I am just poisoning her daily with gluten until I get that result (and maybe a biopsy). I would like the diagnosis if there is one. However, just like you said, if she is gene negative, she is going gluten free anyway. Both my husband and I are on board with GFD for at least 3 months to see what positive changes it will bring.

Thanks!

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Yes, we are definitely waiting to see if she is gene positive. If she is, I can get her biopsied soon and then go gluten-free. So I am just poisoning her daily with gluten until I get that result (and maybe a biopsy). I would like the diagnosis if there is one. However, just like you said, if she is gene negative, she is going gluten free anyway. Both my husband and I are on board with GFD for at least 3 months to see what positive changes it will bring.

Thanks!

Sounds like you have a good plan, hun! Some folks on here will say just go gluten-free and forget the test and some will say wait and see what the results say. I usually say "go with your gut instinct" (pun intended ;) ) because you know best.

Awfully glad your hubs is on board, too. Makes your work easier.

As for you, Mom? She is one lucky kiddo to have you fighting for her! :)

ok, you have some reading to do...LOL....keep me posted and if I can help further, I will certainly try.


"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif

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Sounds like you have a good plan, hun! Some folks on here will say just go gluten-free and forget the test and some will say wait and see what the results say. I usually say "go with your gut instinct" (pun intended ;) ) because you know best.

Awfully glad your hubs is on board, too. Makes your work easier.

As for you, Mom? She is one lucky kiddo to have you fighting for her! :)

ok, you have some reading to do...LOL....keep me posted and if I can help further, I will certainly try.

Oh you make me cry. I am blaming myself for all the years I thought she was a hypochondriac with so many aches and pains. Always asking myself why she couldn't be happy and normal. Ugh. Funny, my Celiac neighbor kept telling me she should be tested. I am anxious to move on and get her healthy.

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Your daughter sounds a lot like mine minus the siezures. She was always getting "sick" and the school starting saying "maybe it's nerves." When I knew it wasn't. She had her appendix out at 11 and that's what I'm curious about. What did the scan show about your dr's appendix? My daughter had a dull ache on her side for a week...kept being sent home from the doctors' office. Then one day she woke up and was nauseas so I went straight to the ER...she had vomiting and D and her blood count was elevated at that point. CT scan showed fluid around her appendix and they said she needed it out...though the surgeon told me after they removed it that it wasn't all that imflamed but the lymphositic fluid surrounding her appendix was often present in people who have celiac disease. We did the celiac panel back then and it was negative...though I was never told her IgA antigliadin was elevated. Now at 18 we are back to testing again...blood was negative but she's having an endoscopy in a couple weeks as she's just not feeling well...and we know it's gluten related. Oh and how old is your daughter again? 12 or 13 and they are considering her to have delayed menses? My daughter was almost 16 by the time she started her period...definitely later than most.

Anyway, I'm really curious about the appendix thing. Currently my 17 yr old is being watched for appendicitis....she is presenting with the same exact symptoms as my other daughter had when she was 11...same kind of pain...and I'm told as I was back then that "she just is full of lots of poop...and that's causing her constant pain." Um...no I don't think so...LOL

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Your daughter sounds a lot like mine minus the siezures. She was always getting "sick" and the school starting saying "maybe it's nerves." When I knew it wasn't. She had her appendix out at 11 and that's what I'm curious about. What did the scan show about your dr's appendix? My daughter had a dull ache on her side for a week...kept being sent home from the doctors' office. Then one day she woke up and was nauseas so I went straight to the ER...she had vomiting and D and her blood count was elevated at that point. CT scan showed fluid around her appendix and they said she needed it out...though the surgeon told me after they removed it that it wasn't all that imflamed but the lymphositic fluid surrounding her appendix was often present in people who have celiac disease. We did the celiac panel back then and it was negative...though I was never told her IgA antigliadin was elevated. Now at 18 we are back to testing again...blood was negative but she's having an endoscopy in a couple weeks as she's just not feeling well...and we know it's gluten related. Oh and how old is your daughter again? 12 or 13 and they are considering her to have delayed menses? My daughter was almost 16 by the time she started her period...definitely later than most.

Anyway, I'm really curious about the appendix thing. Currently my 17 yr old is being watched for appendicitis....she is presenting with the same exact symptoms as my other daughter had when she was 11...same kind of pain...and I'm told as I was back then that "she just is full of lots of poop...and that's causing her constant pain." Um...no I don't think so...LOL

Wow, sounds familiar. The appendix CT scan showed swollen lymph nodes and fluid behind her appendix. They were able to pinpoint that. Her blood work work was normal and she was afebrile. Funny, we got the "lots of poop" thing too. They said they could see it backed up.

My 12 year old is not really consider late for her menses but late in blooming. She is a good 6-12 inches shorter than all her peers (3rd percentile for height) and she is teeny tiny as far as weight. She looks like a 4th grader.

As you probably read our blood panel for celiac was negative but her serum IgA was low so it really isn't valid. We are being gene tested and then if positive hopefully a biopsy.

Both your daughters sound wheat intolerant or celiac but I am brand spanking new here! Others may be able to advise better than I. I would ask to have both girls blood panel redone. Do you have celiac in your family?

Let's keep tabs on each other. We should get our celiac gene results this Friday.

Kristi

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Yeah, I believe all my kids are intolerant or celiac. Their dad was having digestive issues pretty bad for 17 yrs or so. Finally went gluten free 2 yrs ago and his issues cleared right up. My niece has celiac. Lots of other autoimmune disorders in my family.

My kids have always been on the little side too. My 17 yr old was always 10% or below the charts in weight...and height. I thought for sure she was going to be no taller than 5 ft tall...I remember her dr asking me when she was a toddler how tall my husband was because she was so tiny...I'm 5'8 and my husband is 6'0. However, there were short statured people on boths sides of our family so I just left it at that. Now my 12 yr old has always been at the bottom of the charts too...and he's the one that got me going on getting 3 out of the 4 right now tested. He was having muscle pain every day...and the wonderful ladies on the forum encouraged me to get him tested...or at least I asked if anyone's kid had muscle pain at his age and lots said yes! So my sons 10 and 12 get endoscopies next friday. I get mine on Monday and my 18 yr old daughter gets hers the following week. Next up I'm sure is my 17 yr old...at the same age my son and other daughter were having lots of issues she was too...joint pain and stiffness, ADHD, and lots of anxiety. That went away though as she entered highschool pretty much so I thought she was just going through some phase. Well, now I think she too has a problem with gluten...so like I said looks like a family trait for us!!

Yes...keep in touch. Good luck with your testing.

PS. My friends daughter gets siezures from gluten. Once they figured that out she was able to get off her meds for them. I believe she tested positive for celiac. They then got Mom/Dad and son tested ..all celiac too!

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Ladies,

A few more thoughts.

The "backed up poop"? That's from chronic constipation. (been there/done that :rolleyes: ) That alone causes toxicity in a body and creates irritability. Get them on some probiotics (like Culturelle) and have them drink LOTS OF WATER. No sugary sodas for a week. Skip cheese and ice cream. These foods can cause constipation. The water will hydrate them and get things moving. ;) It's crazy how much we all know about poop and bowel movements on here, :lol: but the truth is, I know what works because I learned all I could about why my entire GI tract was burning and malfunctioning for so long.

The standard thinking has always been that diarrhea is a celiac symptom, but CURRENT information says both D and C can occur. Not everyone is thin and wasted away either. There are no more "typical symptoms" it seems. Or there are no symptoms at all. This is why it is so difficult to get a DX.

Delayed menarche and early menopause, fertility issues, miscarriages--all of these are related to gluten intolerance and/or celiac (and various other disorders) Celiac does not cause everything, of course, but it may explain some things.

http://www.usc.edu/student-affairs/Health_Center/adolhealth/content/b1.html

I had multiple miscarriages, failed fertility treatments and work-ups done for 6 years and never did carry to term. They know NOW to check for Celiac, but back in the 90's, sadly, they did not. If I knew THEN what I know now, and had been DXed earlier in my life, I may have been able to have children.

These are just some of the many symptoms I had and never knew it was because of celiac. I am not the only one. Once I was DXed and my Mom started reading the materials I sent her, she told me she did not start menses until she was nearly 17. She also had an early menopause. She said she had stomach trouble as a kid and leg pains. Her mom told her they were "growing pains". I said "Ma, that's the same thing you told me!" :rolleyes:

She feels bad I have this disease, thinking she and my Dad both "gave me the genes" and did not realize my illnesses and various problems were related to this, but really, HOW COULD ANYONE know? If the medical community at large does not truly understand this disease, how can the rest of us?? The leading doctor/researcher is from Italy--Dr. Alessio Fasano-- and he wondered "where are all the American Celiacs?" because it is so under-diagnosed in this country.

http://delightglutenfree.com/celiac-facts-from-alessio-fasano-md

It was only through research that I learned so much and put ALL of my health history together that I was able to figure it out. Dozens of doctors--and alternative practitioners, too--missed it. I was very angry about that, the years I lost crippled with pain in a gluten-headed fog, the THOUSANDS of dollars we spent searching for answers and mourning the fact that I never had children because of this thing. I could be angry and resentful for the rest of my life or I can get well and help others with the same health issues. I even wrote to the many doctors I saw and told THEM what I have and that they missed the boat. I make it my mission to educate others about gluten. It's poison. And I "see celiacs" everywhere I go. I have two more people in my life feeling so much better off gluten and I am glad I was such a "pest". :lol: I feel like "a celiac whisperer"...

This is what you can do. Once your daughter is on the road, you and she can pay it forward. 97% of celiacs do not know they have it. People have "IBS" and "GERD" or anxiety and depression and they do not realize it could just be what they are EATING causing all that misery.

Do NOT blame yourself for not seeing it sooner. Be kind to yourself. There is absolutely no way for you to have known. You know NOW and you are doing everything in your power to get her started on healing and having a long and happy life. :)

That's why I said she is a lucky girl-- because she is. :)


"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif

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Ladies,

A few more thoughts.

The "backed up poop"? That's from chronic constipation. (been there/done that :rolleyes: ) That alone causes toxicity in a body and creates irritability. Get them on some probiotics (like Culturelle) and have them drink LOTS OF WATER. No sugary sodas for a week. Skip cheese and ice cream. These foods can cause constipation. The water will hydrate them and get things moving. ;) It's crazy how much we all know about poop and bowel movements on here, :lol: but the truth is, I know what works because I learned all I could about why my entire GI tract was burning and malfunctioning for so long.

The standard thinking has always been that diarrhea is a celiac symptom, but CURRENT information says both D and C can occur. Not everyone is thin and wasted away either. There are no more "typical symptoms" it seems. Or there are no symptoms at all. This is why it is so difficult to get a DX.

Delayed menarche and early menopause, fertility issues, miscarriages--all of these are related to gluten intolerance and/or celiac (and various other disorders) Celiac does not cause everything, of course, but it may explain some things.

http://www.usc.edu/student-affairs/Health_Center/adolhealth/content/b1.html

I had multiple miscarriages, failed fertility treatments and work-ups done for 6 years and never did carry to term. They know NOW to check for Celiac, but back in the 90's, sadly, they did not. If I knew THEN what I know now, and had been DXed earlier in my life, I may have been able to have children.

These are just some of the many symptoms I had and never knew it was because of celiac. I am not the only one. Once I was DXed and my Mom started reading the materials I sent her, she told me she did not start menses until she was nearly 17. She also had an early menopause. She said she had stomach trouble as a kid and leg pains. Her mom told her they were "growing pains". I said "Ma, that's the same thing you told me!" :rolleyes:

She feels bad I have this disease, thinking she and my Dad both "gave me the genes" and did not realize my illnesses and various problems were related to this, but really, HOW COULD ANYONE know? If the medical community at large does not truly understand this disease, how can the rest of us?? The leading doctor/researcher is from Italy--Dr. Alessio Fasano-- and he wondered "where are all the American Celiacs?" because it is so under-diagnosed in this country.

http://delightglutenfree.com/celiac-facts-from-alessio-fasano-md

It was only through research that I learned so much and put ALL of my health history together that I was able to figure it out. Dozens of doctors--and alternative practitioners, too--missed it. I was very angry about that, the years I lost crippled with pain in a gluten-headed fog, the THOUSANDS of dollars we spent searching for answers and mourning the fact that I never had children because of this thing. I could be angry and resentful for the rest of my life or I can get well and help others with the same health issues. I even wrote to the many doctors I saw and told THEM what I have and that they missed the boat. I make it my mission to educate others about gluten. It's poison. And I "see celiacs" everywhere I go. I have two more people in my life feeling so much better off gluten and I am glad I was such a "pest". :lol: I feel like "a celiac whisperer"...

This is what you can do. Once your daughter is on the road, you and she can pay it forward. 97% of celiacs do not know they have it. People have "IBS" and "GERD" or anxiety and depression and they do not realize it could just be what they are EATING causing all that misery.

Do NOT blame yourself for not seeing it sooner. Be kind to yourself. There is absolutely no way for you to have known. You know NOW and you are doing everything in your power to get her started on healing and having a long and happy life. :)

That's why I said she is a lucky girl-- because she is. :)

Irish, you are like a God send to me. Thank you! I am so sorry about the miscarriages and infertility. That is horrible. There really are no appropriate words. it makes me wonder about all the unexplained infertility. I had five miscarriages and secondary infertility. I can only imagine a small part of your grief.

Thank you again for all of your help! Hopefully tomorrow we get some answers. Either way...GFD is in our future.

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Irish, you are like a God send to me. Thank you! I am so sorry about the miscarriages and infertility. That is horrible. There really are no appropriate words. it makes me wonder about all the unexplained infertility. I had five miscarriages and secondary infertility. I can only imagine a small part of your grief.

Thank you again for all of your help! Hopefully tomorrow we get some answers. Either way...GFD is in our future.

Well, Momma...seems like you've got a gluten issue yourself, hon.

You're very welcome. Wish I could do more.

Please do not hesitate to ask for help. I'll do my best or point you to the one who will know the answer. These people are the most generous, knowledgeable and supportive bunch I know. ;)

Hang in there!!


"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif

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Well, Momma...seems like you've got a gluten issue yourself, hon.

You're very welcome. Wish I could do more.

Please do not hesitate to ask for help. I'll do my best or point you to the one who will know the answer. These people are the most generous, knowledgeable and supportive bunch I know. ;)

Hang in there!!

I have suspected gluten in myself for a long time. Soooooo guess what? My sister did this genotyping thing for her entire family and the results are online. They do the HLA DQ typing and even go to alpha and beta level. She had markers for Celiac (meaning they are consider new theories on Celiac Disease). Here is the info from the online results:

q28 near LPPMarker:rs9851967

This SNP is located near a gene called LPP, which encodes a protein involved in cell adhesion and is expressed in very high amounts in the small intestine. However, very little is known about its potential role in the development of celiac disease.

Multiple studies have identified this SNP to be associated with celiac disease in populations with European ancestry. This SNP has not been studied in populations with Asian or African ancestry.

However, her husband is positive for the gene for Celiac. So coupled with this gene and the marker, their son is high risk for Celiac. I am not sure what the marker means but if I have it and my husband passed his gene (sister positive), she may be gene positive too.

Yes, I am making myself crazy!

lol, thanks for listening. I think things will become clearer over the next few days as I get my SILs results and get Jordan's, hopefully tomorrow.

Kristi

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I have suspected gluten in myself for a long time. Soooooo guess what? My sister did this genotyping thing for her entire family and the results are online. They do the HLA DQ typing and even go to alpha and beta level. She had markers for Celiac (meaning they are consider new theories on Celiac Disease). Here is the info from the online results:

q28 near LPPMarker:rs9851967

This SNP is located near a gene called LPP, which encodes a protein involved in cell adhesion and is expressed in very high amounts in the small intestine. However, very little is known about its potential role in the development of celiac disease.

Multiple studies have identified this SNP to be associated with celiac disease in populations with European ancestry. This SNP has not been studied in populations with Asian or African ancestry.

However, her husband is positive for the gene for Celiac. So coupled with this gene and the marker, their son is high risk for Celiac. I am not sure what the marker means but if I have it and my husband passed his gene (sister positive), she may be gene positive too.

Yes, I am making myself crazy!

lol, thanks for listening. I think things will become clearer over the next few days as I get my SILs results and get Jordan's, hopefully tomorrow.

Kristi

This is very interesting!

You sound like me--starting to look at all your symptoms, collecting data and seeing how all the pieces of the puzzle start to come together. I was a mystery wrapped in an enigma for sooooo long and now, it ALL makes sense. From the gall bladder disease to the insomnia to the reproductive problems to the 90lb. loss to the chronic horrible pain I developed. It's mind-blowing. :o sometimes.

BTW, with an aunt with celiac, your daughter now has a VALID REASON for being biopsied. Tell your doctor and do not take no for an answer. ;)

Just remember, sometimes kids do not have ENOUGH villi damage YET.

This is the frustrating part of "testing" for celiac.

You and your husband could also have genetic testing done. Do you have other children? Do them, too. I had mine done through Enterolab and then, for whatever reason, my new GI had me do it again through stool while he checked or other Inflammatory diseases like Crohn's. (just covering his bases, I guess? It was the same result, of course.) Crohn's is in my family as are many other autoimmune diseases. Big CLUES there.

Again, regardless of the genetic markers and test results, gluten may still be the culprit. I think you already know it is. I know you are filled with nervous energy right now...but try to relax. Whatever the result, you have made your decision. :)

Take care. Hang in there!

Hey, is your printer still on ? :)

Bring this to the doctor who said your daughter's symtpoms were not celiac symptoms....especially read the section under CHILDHOOD...epilepsy, malaise, anxiety, etc....sounding familiar?? This article is from 1998--but even so, the symptoms were RIGHT THERE!!Imagine if just one of them read a medical journal from this century once and while?? <_<

http://www.aafp.org/afp/1998/0301/p1023.html


"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif

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This is very interesting!

You sound like me--starting to look at all your symptoms, collecting data and seeing how all the pieces of the puzzle start to come together. I was a mystery wrapped in an enigma for sooooo long and now, it ALL makes sense. From the gall bladder disease to the insomnia to the reproductive problems to the 90lb. loss to the chronic horrible pain I developed. It's mind-blowing. :o sometimes.

BTW, with an aunt with celiac, your daughter now has a VALID REASON for being biopsied. Tell your doctor and do not take no for an answer. ;)

Just remember, sometimes kids do not have ENOUGH villi damage YET.

This is the frustrating part of "testing" for celiac.

You and your husband could also have genetic testing done. Do you have other children? Do them, too. I had mine done through Enterolab and then, for whatever reason, my new GI had me do it again through stool while he checked or other Inflammatory diseases like Crohn's. (just covering his bases, I guess? It was the same result, of course.) Crohn's is in my family as are many other autoimmune diseases. Big CLUES there.

Again, regardless of the genetic markers and test results, gluten may still be the culprit. I think you already know it is. I know you are filled with nervous energy right now...but try to relax. Whatever the result, you have made your decision. :)

Take care. Hang in there!

Hey, is your printer still on ? :)

Bring this to the doctor who said your daughter's symtpoms were not celiac symptoms....especially read the section under CHILDHOOD...epilepsy, malaise, anxiety, etc....sounding familiar?? This article is from 1998--but even so, the symptoms were RIGHT THERE!!Imagine if just one of them read a medical journal from this century once and while?? <_<

http://www.aafp.org/afp/1998/0301/p1023.html

Great article! Especially in regard to epilepsy.

So my SIL sent me her paperwork. Her Celiac Panel was not positive. her AGA IgA was 1.41 and less than 1.99 is considered normal. However, the doc said it was slightly positive (maybe compared to what she has seen in her practice) and her IgE was higher than normal suggestive of Chronic Fatigue. She told she saw a genetic component to the gluten intolerance (the AGA IgA I guess) and along with the IgE recommended a gluten free diet. So that put a crimp in my sails.

But either way, Celiac or Gluten Intolerance, I think my daughter needs a gluten free diet.

One more day of waiting, hopefully!

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The gene test won't be ready until next week, mid week.

I am seriously considering making her gluten free now and saying the hell with it. I am so ticked off. They lost her blood the first time so we had to redraw.

How does a lab lose blood? :rolleyes: for pete's sake! geesh.

Sorry you are still waiting. I am not surprised. If you are like me, I find that lab test results, waiting for insurance approval, etc....all of these things are always delayed...sigh... the medical system... :rolleyes:

Hang in there!


"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif

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