Help!

[meme2kids]

I was diagnoised with Celiac in Feb. I had all 3 of my children tested and they were all negative.

However: 2 of them do not show any signs what so ever. My youngest however, I am at the end of my rope.

My youngest is having more and more "bathroom" issues, severe Gas and very irritable.

She sat here tonight and had a complete meltdown and we could not get through to her to even figure out what was wrong. I think it was the fact she isn't as smart a everyone else and she hates being the youngest?

She went on a camping trip with her girl scout troop and she had alot more gluten then what she is getting at home.

The house is not fully gluten-free, but most of the meals are gluten-free and I have been slowly modifing my yongest at home. but when she is out, she stuffs gluten, becuase she says she is not allergic so she can have it.

Our doctor has been againist putting the kids on gluten-free, unless there is reason.

Long story short: Will putting a children on a gluten-free diet harm them? How do you get the schools to watch what they eat if there is not a doctor's note? How do you explain to the kids event though the doctor does not say they are "Allergic", the diet may make them feel better?

[Takala]

No, it won't "harm" them, but you have to do it carefully so they realize that instead of depriving them of what they think of as "goodies," you are actually going to greater amounts of effort to get them special food so they don't feel bad. There is so much JUNK in schools (and the workplace) with people constantly bring in commercially prepared bakery goods loaded with white flour, shortening, and sugar it's a wonder that everybody isn't either diabetic or gluten intolerant.

I am wondering if she is craving gluten (which is a carbohydrate and tends to be made with a lot of sugar or corn syrup) because she is short on some nutrition because of being gluten intolerant.

You could always have her genes tested to see if she is a carrier which would predispose her or put her in the group more likely to develop celiac or gluten intolerance. (first degree relative, more likely)

You may want to wait until you have a few days where you can completely control the food chain, like a weekend or a 3 day long weekend or a school holiday, and plan ahead to have the house purged of gluten (my motto: if it is not there, you can't eat it ) filled with tasty gluten free snacking alternatives, and make sure that everything everybody eats is gluten free. Then you can keep a food diary and monitor her responses. She may also be reacting to lactose as this ability to handle milk sugars is also a sign of celiac/gluten intolerance, this may or may not go away on a gluten free diet, and you may want to start investigating now alternatives to dairy milk. (later, cheese and gluten-free yogurt may be okay. or not). For instance, there is such a thing as coconut ice cream, and many different boxed nut and rice milks, some of which are attractively flavored and sweetened. If you go somewhere, pack lunches and/or snacks that are gluten free.

After the gluten vacation, if she reverts back to being uncomfortable the next time she eats it, you can contact the doctor's office again and notify them that your food challenge shows she reacts, irregardless of the last test.

[Cara in Boston]

How old is she and which tests did she have?

My son had weird test results (2 positive, 3 negative) so they did the genetic test and the more sensitive DGP tests - even then, one DGP was negative and one was positive. Everyone was puzzled. He had an endoscopy and it was positive for celiac.

It can be hard to get a accurate blood test in children - especially if they are already eating "gluten lite" at home.

Also, you will not harm them by putting them on a gluten free diet. You may find it difficult to get people to cooperate with you (especially schools) if you do not have a diagnosis from a doctor.

Cara

[meme2kids]

She was tested about 2 months ago, once I was confirmed Celiac. All 3 kids were tested. All 3 were negative for celiac and any vit deficiencies.

Honestly, with the symptoms she has, we were shoked she was not positive.

Very small for her age, she wears the same clothes her big sister wore in Kindergarden and she is about to complete the 3rd grade. Always has bathroom issues, sever gas and colic as a baby. She is emotional and always irritable, use to have bad temper fits: now there is just emotional breakdown with tears and thumb sucking.

Her doctor okayed the diet with the following conditions:

Food diary

Weekly emails on her on emotional state

We have spoke to the doctor before about her temper and emotional roller coaster. She has dyslexia and has had a very hard time with school work. Crying jaggs before school, stomach aches and temper tampers.

Doc is worried even if the diet helps with the "phyiscal" symptoms, she wants to make sure there is nothing else going on causing the emotional issues.

I told her the doctor called an said that she may be gluten intolerate and she wants her to go gluten free. I told her this means the wheat isn't causing damage, but may be why she is has tummy issues and bathroom issues.

I took her shopping last night, we have been eating at gluten free at home and have always made it a positive experience for everyone in the house. And I will tell you she LOVES shopping for gluten free at Kroger. She was so worried about getting something wrong (since she has trouble reading, she keep getting flavor and flour backwards).Krogers has a self tags with a wheat stalk with a negative since through it, she thought it was awesome!

Her teacher is behind us and I'm with the the school for the last 3 weeks of shcool. We have been gluten free for 24 hours, her bag is packed for school already. It was funny, she refuses to eat gluten-free bread. We roasted a chicken and she is packing lots of fruit, nuts, popcorn chips to pair with the chicken.

I'll let you guys know how she does through the weekend, by Sunday she will be 5 days gluten-free.

[srall]

I understand that we trust our doctors to give us the best advice, but honestly I've found when it comes to celiac and gluten intolerance that the doctors really don't understand the disease, and the blood tests are woefully primitive. That said, I know that for kids it's easier for them to navigate the school system with a positive diagnosis, but what do you do when they test negative but are still having symptoms?

My daughter has been gluten/dairy and corn free since October 2010. I won't laundry list every symptom, but like your daughter tiny, had a lot of anxiety, full blown temper tantrums all of her life, but didn't subside even at age 7. Anyway, the short story is she has completely normal blood tests. So, I started doing elimination diets and then documented everything with pictures. She had very specific symptoms for each food. I was prepared for a fight with her pediatrician, but luckily he was so great. He called me on the phone to discuss her blood tests and then talked about how diagnosing celiac and gluten intolerance had changed over the course of his practice. He said he's seen so many cases where the blood tests are normal but the kids are still so sick, and going gluten free has healed them. He's always been pretty progressive which is why I chose him. He always talks about eating local, organic foods, vitamins, parenting decisions vs. doctor's advice. I'm so lucky to have him because I know that this is not most people's experience with doctors. He diagnosed my daughter gluten sensitive so I guess that's what we've got to work with.

In the meantime going gluten/dairy/corn free has been LIFE CHANGING. Life changing. She actually eats much healthier, and she has even moved mostly to whole foods even dropping the UDI's products because they were making her sick (corn). I really have to pay attention to her vitamins, especially vitamin B which seems to help with her anxiety. This weekend was her birthday party. I gave her an UDI's chocolate muffin and we were a little lax on the vits. Well, she was starting to throw some wicked tantrums, had diarrhea and some anxiety attacks, so I knew we had to start focusing again on her diet and vitamins. I think it's worth a try with your daughter. For your own peace of mind, and to help you with your doctor, I'd just document through pictures or a journal what you notice with your daughter. Personally if my daughter's pedi was going to give me a hard time, I was prepared to look for someone who would work with me. But like I said, there was a reason I chose this man in the first place. He's a great doctor.

Good luck with your daughter. It's hard to see them suffer. I know.

[T.H.]

My son was small for his age, lots of anger/tantrum issues, bloated belly - and also a negative test, even though his sister and I both tested positive. I put him on a gluten free diet, and the results have been pretty dramatic, emotionally speaking, once I got him off of dairy AND gluten.

But I'll be honest, I am frustrated and, frankly, pissed off at how most pediatricians react to even the mention of a parent trying a gluten free diet with their kids.

Some pediatricians may ask us what we're feeding our kids from day 1, and if they do, and we've let them have that right, then I have no issue with their concern about a change in diet. But most I've met do not do this. My ped never asked anything other than: are they eating healthy? That was it.

But when I chose to feed my kid healthy food that was different than the norm they expected? Then suddenly he wanted to get intensely involved.

Gluten is not a required nutrient, in any way. If a ped never bothered to go into detail nutritionally with me before eliminating it, there is no rational, valid reason to do so afterward, IMHO. And our experience was a great example of the hypocrisy of the reaction.

My daughter was diagnosed celiac, and the ped. didn't say one, darn word about how to eat healthy, what to do, what nutrients to eat or keep track of, nothin'. He didn't even want to test her for vitamin deficiencies. He knew I was celiac, and assumed I knew how to eat healthy, and that was all he was concerned with. But when he found out that I was trying the gluten free diet for my son with the negative test, all of a sudden he was telling me about the 'dangers' of a gluten-free diet and how I had to be really careful or my son wouldn't get enough nutrients, and that the ped should test him for vitamin deficiencies, etc...

It was unbelievable. And all simply because I'm using my own judgment and mind to make choices about my child.

Shauna

[srall]

Shauna, I agree. Yesterday when I was responding to the O.P. the first response I wrote I had to erase because it was coming across so b%$@#y. Essentially I was asking why on earth we feel like we need a doctor's permission to go gluten free? I'll just state again, my daughter is eating so much healthier. I admit I now pay very close attention to her diet, nutrients and the balance. But I did not before when she was on the "Great American Diet" that nobody else seemed concerned about, and she was unbelievably sick. All the time.

~Stacey~

[eatmeat4good]

I was a very emotional and moody little girl....and teen....and young adult...and adult....I had a horrible feeling of internal angst all my life. In my 40's I started getting all sorts of other Celiac symptoms but was only diagnosed with fibromyalgia. Gluten was neurological for me...causing a horrible internal experience...much the way it sounds like your daughter experiences. Yes, they knew I had anxiety, they told my mom to keep me busy. Then I had stomach aches...they told my mom send her to school she is just trying to get attention. I was sick as a dog most of the time, both mentally and physically.

You are doing the right thing for your little girl. Saving her a lifetime of distress.

I was fine after a few months gluten free, but oh if my mother had only known...and oh, if other mother's only knew now.

Docs are good for some things, but for gluten symptom monitoring they are of little value.

Moods and tears are good signs of neurological gluten intolerance or Celiac- even if she tests negative.

Thank god you know what to watch for!

Don't be too sure that it is something other than gluten even if the doc insists. I am very sensitive to CC and she may be too! Good luck

[Pattymom]

I have three gluten free kids, one who tolerates it fine, though she gets it so rarely out of the house only, so who knows. All three have had negative blood tests, but I finally did it anyway with much resitance from the MD. DD was/is very tiny and had stopped growing, huge tantrums, anxiety, etc. Gluten made a huge difference in the moods, though we found she also needs to be off dairy. She is still tiny however, and it's been a few years at this point. The boys get sick very quickly from gluten if they get some accidently, and they realize that it makes them sick, so they dont' want it, not longer a battle to want to eat it. I think they needed to be off long enough to really better before the reaction to eating a little gluten and feeling awful was obvious enough for them, but we did get there.

Also, at this point, I just started writing celiac disease, no gluten on all the health forms I fill out, for scouts, camps etc, and no one has ever asked for proof or blood tests. Frequently there is a space on forms for food issues, allergies, etc. that is seperate from what the MD signs, so I just write it in myself. I know that it's true, and I think since I say it so clearly, the kids believe it too.