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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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

18M Old - With Genetics Against Her
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GottaSki    459

Awesome advise!!

 

She's a stubborn one, so whatever foods I do end up having to remove from her diet will be quite the battle, but will be done for her own health. 

 

If it turns out to be gluten related, my concern is more about my husband's understanding and the amount of safeguards that will need to be in place to allow the house to still have gluten.  They often enjoy their 'snack' time together, which I've managed to switch them to popcorn or nuts, but when I'm not there I have a suspicion that its more cookies and chips. ha.

 

****

She ate minimal yesterday, refusing even her almond milk.

At most she ate 4 pieces of pineapple bits (daycare) and they counted 8 saltines.

 

No more diarrhea or signs of reflux during the day and she survived the night without another blowout as well.

 

 

It is tough to transition, but you will be amazed how many foods are gluten free naturally.  Honestly, I think the transition is going to be harder on you and Dad -- kids adapt quickly, just don't say "you can't eat that" too many times -- stick with substitution and distraction.  Little girls love to learn the rules of anyone's special needs -- by the time she is three, she'll be teaching her classmates why the food they are eating can be harmful to her.

 

PS...that she craves saltines and other glutenous foods is common in celiac disease -- processed comfort foods are a great comfort to our brains, not our digestive systems -- they are a want, not a need.  Your family will find lots of new comfort foods that will sooth both brain and body -- ours did :)

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Aprilelayne    3

I'm good, I've long had to eat differently than the rest of the family when I grew up, and I've been carb-free (minimal) and gluten light for over a year already.

 

Ironically the little one already knows she gets different things than us.  She will point to the milk and call it 'daddy's milk' (cow) versus 'my milk' (almond) and will shake her finger at the strawberries in the fridge.  I have separate plastic bins for her snacks versus my son's...not for gluten purposes but for them to identify who gets what (fruit gummies for the older one, dried apple chips for the little one, etc)

 

My husband is who will struggle the most, his arabic culture and diet is rather bread-centric. Couscous, semolina cakes, french baguettes....daily carb and gluten heaven.lol.

 

He is finally recognizing that she is not like our son, and now that the daycare has chimed in with how drastic her stuff is, it might be clicking for him that its not normal.  He will supportive of my pursuit for answers, but his inclusion to dr appts and/or nutritionists will be required for him to really grasp the lifestyle change (if necessary.)

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Aprilelayne    3

Rough night for the little one.

 

No vomit or diarrhea thankfully, but she was up all night whimpering and crying out spells that were followed up with significant gas passing.  I can only presume that the whimpering is from the gas pains :(

It would come in waves about every 20minutes.  At one point my husband brought her to the living room and sat with her reclined on his chest and patted her through to help pass it.

 

We were stuck at a car dealership for the evening, and exhausted my snack rations while there. She ended up eating quite a few townhouse crackers.

 

Ultimately I've got to be pushy on Friday with the gastro.

We need to get moving on this, whatever it is, that is interfering with her daily life. She's eating something that her body does not like!

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Aprilelayne    3

Fridays' appt with gastro:

 

After waiting again over an hour to see the doctor, she visited with us and we discussed whats been going on.

She's assuming this past month's vomit and severe diarrhea was a bug of some sort, so she focused on the rest of her history in the four months since we left.

 

She's confident its not celiac because of her weight gain, she's in the 95% for height and weight.

That in addition to her negative IgA? from September.

 

However she obviously has allergens or something exccessive that brings her IgE up so high.  Since we've already eliminated dairy, soy, and strawberries from prior to our going to the gastro, there has to be something else.

 

She did admit that instead of celiac, she may have an actual 'allergy' to wheat or another component of bread products (yeast?)

So she is running the RAST allergy testing to see if anything can be related to her high IgE.

 

I gather that an 'allergy' instead of the AI of celiac would be treated the same, basically avoidance of the allergen as much as possible (gluten free diet) maybe with more or less restrictions?

 

Running an updated CBC and Vitamin D to see if they have improved from her vitamins.

 

I'm to call this week for the results and information on her RAST findings.

 

If we identify anything and eliminate it, evaluate for 2months and at that point if no changes or improvements to her bowels or reflux, she will do the scope.

 

 

 

I have to admit I'm considering changing docs. Not that I have a good or negative feeling about this gastro, but mostly because of how the office is run.  Three visits there, every one of them has had me waiting a solid hour after our appt time, and its just a lot of sitting and waiting.  Our appt on Friday was at 11am (the earliest of the day due her to surgery schedule) so we got there at 10:40.  We did not see the gastro herself until 12:40.  Visited with her, granted she does not rush us and takes her time to get info! Was sent upstairs for the labwork and left for the day at 2:10.

I have to take a full day off of work for each of these visits.  I will do it for my daughter's sake if I knew she was getting the best attention and care possible for whatever we are dealing with, but it really chaps my hide that they can run a business this way.

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ravenwoodglass    1,214

What would get to me the most is her wanting your child to suffer for another 2 months before she will do an endo. You and your little one have been suffering for so long now. I hope you can get answer's soon and that the testing for celiac takes place soon. Then you can give her a trial on the diet and see if that gives her some relief.

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Aprilelayne    3

Waiting on the faxed full report, but just got off the phone with the gastro.

 

RAST allergy testing gave us two surprises.

peanuts

soybeans

 

So it was a good that we switched from soy to almond back in October.

The peanut is a nominal class 1, so she states its likely a false positive and not to worry about it.  I of course will pay more attention the next time she has some to see, but I'm confident she's okay.

 

The only surprising thing was that her VitaminD was even lower than before despite the increased supplements. 

Told to bump her up to 800units and we will retest in 2months when we do followup.

 

Not really anything to cause or explain her lack of regular stools and severe bloating.

 

The gastro yet again reminded me that she's nutritionally healthy, meaning her weight.

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ravenwoodglass    1,214

The low vitamin D is no surprise if she is celiac or gluten intolerant.

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Aprilelayne    3

Got the report, nothing to report other  than the peanuts and soy findings.

 

It makes sense, as a whole her symptoms can be noted as an allergic reaction to something.

 

I've been online and started reading labels in the pantry last night because much like gluten/wheat, soy is in sooo many things.  Luckily it is one of the top 8 allergens so its labelled clearly on packaging, but I started paying attention to where it falls on the ingredients rather than just its inclusion to see the concentration or abundance of it in certain products. Wow.

 

I'm not done though, I'm calling the pediatrician to refer us to an allergist for consult on management of the allergy and/or other testing. 

 

Basically I need more info to figure out what I need to do for daycare in addition to our own home.

 

ETA - message w/ pediatrician already.

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frieze    113

Waiting on the faxed full report, but just got off the phone with the gastro.

 

RAST allergy testing gave us two surprises.

peanuts

soybeans

 

So it was a good that we switched from soy to almond back in October.

The peanut is a nominal class 1, so she states its likely a false positive and not to worry about it.  I of course will pay more attention the next time she has some to see, but I'm confident she's okay.

 

The only surprising thing was that her VitaminD was even lower than before despite the increased supplements. 

Told to bump her up to 800units and we will retest in 2months when we do followup.

 

Not really anything to cause or explain her lack of regular stools and severe bloating.

 

The gastro yet again reminded me that she's nutritionally healthy, meaning her weight.

I know she is a wee one, but that level of D supplementation is on the low side.   can you get her outside with skin exposed at least 20' a day?

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Aprilelayne    3

I know she is a wee one, but that level of D supplementation is on the low side.   can you get her outside with skin exposed at least 20' a day?

 

I've purchased a 1000u supplement that was strongly recommended by a couple friends who have little ones with allergies and celiac.

 

Ironically, we live in South Texas and the temps are in the upper 70s and 80s already, so she is getting outside for an hour at least everyday while at school. Then we do our outdoor walks every evening as well while the sun is still out.  That is why her low in September was surprising since at that time she is outdoors for 2hours a day while its summer.

It going lower during the winter makes sense due to the less sunlight, but she doesn't like it as low as it is (19?)

 

 

We are now assigned to an allergist/immunologist? Which should help with her asthma plan as well as give us better guidance on the allergy front. 

 

eta: Allergist appointment set for April 24th. Some 7wks away. Obviously on the cancellation list though.

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Aprilelayne    3

Just notes to keep tabs of things in one place in prep for the allergist/immunologist appt on 4/24.

 

 

3/13 - peaches at lunch.  Rash around mouth that spread to bottom half of face within 30 minutes.

3/17 - vomit morning wakeup again.  liquid green stools. 24hours  == doubled up dose of zantac

3/18 - liquid lime green stools

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nvsmom    332

Don't let the doctor assume she is right that celiacs can't be big. I am certain that I've had celiac since at least my early elementary school years due to the symptoms I had, and I was a really tall kid. I stopped growing when I was in grade 6 at age 12 when I hit 5'8" and 135lbs... I was taller than my teacher nevermind the other 700 students in the school.  My dad played pro football and was a big guy so genetics can fight celiac's tendancy to keep people small.... I just wonder how tall I might have grown if I hadn't stopped at such a young age!

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GottaSki    459

Celiacs come in ALL SHAPES AND SIZES - period.

 

I don't mean to yell, just get frustrated because I had obvious celiac symptoms since I was a toddler -- but they were not "classic" symptoms.

 

Hoping off my soap box....

 

Soy can be very tough to get completely rid of -- like gluten it hides in many, many processed foods.  Yes, it is declared more than gluten as it is one of the top allergens - but it will still take some time to learn all the hidden sources.  Once you have removed it all -- if her symptoms do not resolve I would re-visit the gluten issue if it were one of my kids.

 

Very glad to hear you at least have some results --- here is hoping she is feeling much better very soon :)

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Aprilelayne    3

I personally have not taken celiac off the table yet.

I suspect the immunologist will run the IgG and another RAST.

Because soy and gluten both are in everything I've resorted to mostly gluten lite dinners, at least removing the soy.

I can't get pushy with daycare until I get an action plan and official allergy statement. She doesn't eat much of their food, but their snacks are my concern.

Today was saltines and soy butter.

So she ate a crap load of saltines. Course now I need to Google their nutritional info for soy content.

The label reading is making me cross eyed already.

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GottaSki    459

Hang in there Mom - you are awesome.  Wish the road to diagnosing our kids was much easier.

 

Big HUG :)

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We were told me eldest could not possibly have any issue with gluten because she was following her growth curve, she wasnaround the 25 th percentile for height and weight, both her dad and I are on the shorter side so they said no issue, gluten free she grew 3 inches in 3 months! And hit the 50 th percentile.

Growing doesn't mean damage isn't being done. And as for the allergies, my daughter had anaphylactic allergies to milk and eggs, gluten free they disappeared. If she gets glutened she'll get hives from milk. Our allergist said her immune system was so taxed with the gluten reactions, it just basically freaked out.

I'd try gluten free as a trial, and I am sure her allergies will ease a little.

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Psyche    2

I am catching up.

 

Sunlight has done nothing to help K's Vit D deficiency. He works outside often (has the 'scientist tan') and his numbers have kept going down.

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Screening out soy is worse, IMO, than gluten. When my son was an infant he seemed to have issues with milk and soy formulas so I dropped both from my diet.

Painful.

I feel for you, but I'm glad you're getting somewhere.

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Aprilelayne    3

Screening out soy is worse, IMO, than gluten. When my son was an infant he seemed to have issues with milk and soy formulas so I dropped both from my diet.

 

Thank you!!

 

My mother and husband both were like 'oh thats great, soy is an easy fix, no more soy milk.' Neither of them realized that I switched her off of soy six months ago.

 

To prove my point I told them both to blindly go and grab any box from the pantry.

Husband's random item had a 'contains wheat, soy, and milk'

Mother's random item had 'contains: soy, wheat'

 

Neither of them had any idea how prominent soy is in any packaged food item.  I myself didn't realize until the last two grocery trips when I started really reading labels on everything.

 

We eat whole foods and clean for dinner, but snacks and treats are typically available in the pantry.

 

anyone realize that even the gummy fruit snacks have soy leticin? ugh.

 

I ended up making some gluten-free, DF muffins for the house for everyone snack on or have for breakfast.

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Psyche    2

Soy is obnoxiously everywhere. I have not trusted fast food meat for years when I heard they started adding it to their 'beef'. My mother is incredibly allergic to soy (and a host of other things) so I have always been very cautious about soy.


I can definitely see how snacks would be a problem.

 

K is so overwhelmed by labels. We ended up putting some apps on our phones to help him figure things out.

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Thank you!!

My mother and husband both were like 'oh thats great, soy is an easy fix, no more soy milk.' Neither of them realized that I switched her off of soy six months ago.

To prove my point I told them both to blindly go and grab any box from the pantry.

Husband's random item had a 'contains wheat, soy, and milk'

Mother's random item had 'contains: soy, wheat'

Neither of them had any idea how prominent soy is in any packaged food item. I myself didn't realize until the last two grocery trips when I started really reading labels on everything.

We eat whole foods and clean for dinner, but snacks and treats are typically available in the pantry.

anyone realize that even the gummy fruit snacks have soy leticin? ugh.

I ended up making some gluten-free, DF muffins for the house for everyone snack on or have for breakfast.

Yep. I finally gave up buying packaged stuff at that point. I did find some cookies that were sf/df...of course they weren't gluten-free but that wasn't an issue at the time. There are so many more options now in the specialty market; however, mainstream foods are still a nightmare (I notice soy all the time when I screen for gluten).

Ironically I found French baguettes that were sf/df...that was my treat. If I'd only known....rolling my eyes.

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Aprilelayne    3

Its so ironic, I did WW for several years and gravitate towards food items with 'added fiber' and 'protein' type bars, but come to find out that the added protein is typically added soy!!?

 

I guess my baking and cooking skills will be back in full use! Luckily I enjoy baking and experimenting.

 

Hubs didn't comment on a carb-free dinner last night. ha.He looked around the table, but didn't ask.

I normally would have made biscuits or rolls to go with the fish and vegetables, but last night we all ate the same foods.

Grilled trout, mashed potatoes and sauteed peppers and mushrooms.

 

He ended up making himself some popcorn after dinner for a snack since he wasn't full.

 

Its a good first step for him.

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Its so ironic, I did WW for several years and gravitate towards food items with 'added fiber' and 'protein' type bars, but come to find out that the added protein is typically added soy!!?

I guess my baking and cooking skills will be back in full use! Luckily I enjoy baking and experimenting.

Hubs didn't comment on a carb-free dinner last night. ha.He looked around the table, but didn't ask.

I normally would have made biscuits or rolls to go with the fish and vegetables, but last night we all ate the same foods.

Grilled trout, mashed potatoes and sauteed peppers and mushrooms.

He ended up making himself some popcorn after dinner for a snack since he wasn't full.

Its a good first step for him.

We didn't always have bread at dinner - because I was (still am) picky about my bread. It needs to be very good to go on my table; however, I did feel like there was "empty space" at special events or when my FIL came to dinner.

We got over it.

And mashed potatoes are pretty carby, tell him to have two helpings. Or not...he'll get used to it :).

You'll probably find a substitute you're ok with. Off the top I don't know of a soy free ready made bread/roll; however, Living Without magazine has tons of recipes and each is highly customizable. You'd have luck picking a roll recipe and making a bunch up, freezing, and baking a few per meal.

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Aprilelayne    3

Weekend notes:

Most of the weekend was related to asthma complications and a low-grade fever. Lots of coughing.

 

Her movements were foul. But in the potty, when she's rushing she will use the baby potty as its quicker to get on than to use the stool to get onto the toilet.  So I had the pleasure of having to clean it out.

 

Since Thursday, with the low-grade fever, she's having four-five movements a day...not watery but her normal mush.

I joked with the hubs that she is like a 'sick cat' the way it looks and smells :(

 

Her reflux has been worse again, she is now asking for it in the early evenings before her 2nd dose of the day.  I may need to inquire if her dose needs to be increased or to try a different med.

 

On a positive note, I have to thank my stars she has an awesome grandmother (my mom.)  We visited this weekend and found a basket of food items that she bought while making the effort. She found soy free graham crackers and soy free cookies in individual  packets for her daycare to keep on hand.  very sweet effort! Plus she realizes how prominent soy is in things.

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