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shanluts

Test Negative But Symptoms.....

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I have celiac. My 5yo dd has severe eczema (that sometimes looks like DH, complete with a blister the other night). She complains of stomach pains frequently. She is small but no pot belly. She went gluten-free for a week and I swear she was a much calmer, better behaved, more focused little girl. (I know you ask why I dont just keep her gluten-free....well it is difficult with her school w/o a diagnosis) She does not have A.D.D she BUT is 90 to nothing from the moment her head leaves the pillow. She will be repeating kindergarten and the teacher is confused as what her problem is. She says she could just be "young", she barely made the cut off. My dd will look at a number and then turn around to write it and writes it backwards (18 becomes 81 in 1 second). This could be developmental BUT she is kinda like that at home. She asked me for something and then I tell her and she will ask again in 5 minutes. Anyway, so many examples so little time LOL.

Could she still be reacting to gluten even if she is not celiac? I do know that the dr did also do some genetic testing. All she said when she called was that she does not have celiac disease.

I am thinking of making her gluten-free over spring break and then maybe gluten light (meaning school provided snacks will have gluten).

Thank you for your help

Shannon

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I would get a copy of the blood work you had done and post it on here. Sometimes Drs say no she doesn't have celiac but the tests could have some elavated markers. Also the blood tests are not 100% effective at showing positive. she could still have it or just be gluten intolerant. Even if someone has not progressed to celiac disease, they can still be gluten intolerant. Either way, No gluten at all. If she is gluten intolerant, I would not allow any gluten. Why? It will damage her over time leading to problems that you may not connect with the gluten. I didn't eat wheat at all and did betterl. I never connected that the problems I still had were from other sources of gluten. I still was suffering pretty bad.

Good luck. I encourage you to try the diet and see how it goes. You thought she did better after one week. I would try it for longer. Let us know how it goes


gluten . . . Kiss my grits!

pork and beef free- 1994

wheat free or wheat light- 2003

gluten free- January 2008

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I have celiac. My 5yo dd has severe eczema (that sometimes looks like DH, complete with a blister the other night). She complains of stomach pains frequently. She is small but no pot belly. She went gluten-free for a week and I swear she was a much calmer, better behaved, more focused little girl. (I know you ask why I dont just keep her gluten-free....well it is difficult with her school w/o a diagnosis) She does not have A.D.D she BUT is 90 to nothing from the moment her head leaves the pillow. She will be repeating kindergarten and the teacher is confused as what her problem is. She says she could just be "young", she barely made the cut off. My dd will look at a number and then turn around to write it and writes it backwards (18 becomes 81 in 1 second). This could be developmental BUT she is kinda like that at home. She asked me for something and then I tell her and she will ask again in 5 minutes. Anyway, so many examples so little time LOL.

Could she still be reacting to gluten even if she is not celiac? I do know that the dr did also do some genetic testing. All she said when she called was that she does not have celiac disease.

I am thinking of making her gluten-free over spring break and then maybe gluten light (meaning school provided snacks will have gluten).

Thank you for your help

Shannon

Hi Shannon,

I don't know much about celiac symptoms in kids so I can't offer any help here. However, what caught my attention was when you said that your dd will turn 18 into 81. I was wondering if by any chance your dd is left-handed? Because this really reminded me of my sister when she was that age. She's left-handed and she was diagnosed with a mild form of dyslexia. It was explained to me at that time (it's been 15 years so I don't remember it exactly) that dyslexic kids (expecially the "lefty" ones) somehow make these mistakes a lot, such as the switch numbers around, have problems with small b's and d's, write the letter E facing the opposite way, etc. So I'm wondering if you've noticed any of these as well.

If so I would highly recommend taking your dd to a specialist. I grew up in Europe so my parents took my sis to a place called something like "pedagogic-psychological help center". I'm sure they have places like that here int he US. They have specialists that are very good at working with kids and also showing the parents what kind of stuff to practice with their kids, how to help with homework, etc.

As I said, my sis was only a mild case. My mom basically worked with her every day for the first two years of elementary school, covering what they learned in school that day, showing her graphic examples so that my sister could comprehend the info better, etc. But it was all worth it, her dyslexia went away and she never even had to attend a special school. She's always been a good/average student and now she's in college, getting good grades.

I'm not suggesting that your dd is dyslexic but I think it might be worth looking into. A lot of times these things can be "fixed" with just some extra work while the kids are young and they would never have to feel the consequences as the grow up.

But, your dd just might be gluten sensitive, I just wanted to share my experience.


gluten-free since 9/30/09

positive gene test 8/11/09

endoscopy 9/30/09 (awaiting results)

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I believe it's too early for a dyslexia type of evaluation. Lots and I mean lots of kids mix their number, write them backwards, etc when they are first learning to read and write. It's a bit early for ADD also. When my son was 5 and would have been eligible for kindergarten, the preschool director recommended another year of preschool (it was officially a private kindergarten). I asked about ADD and her response was that it typically shows up around 2nd grade. In hindsight, I think it's because so many 5 year olds are all over the place, you can't tell if it's maturity or ADD.

Now, that being said, there are people on the board that have noticed improved behavior in their children on a gluten free diet. To give it a good trial, you need more than a week and it needs to be truly gluten free.

I would talk to your doctor, tell him/her that you thought you noticed an improvement after just one week of gluten free. That even though she came back negative for the celiac testing, that you are suspecting gluten intolerance and ask for a note (for the school) so that you can try an honest to goodness trial (I would recommend 3 to 6 months). To get the doctor's buy in on the whole trial diet thing, ask for input on things that you can keep track of so you can tell if the diet makes a difference. You may need to journal for a month of not gluten free to show how often she complains of her stomach. Take a weekly picture of her excema. Get starting weights and heights. And if you can come up with some way to evaluate her behaviour, add that, perhaps you can get some sort of daily/weekly evaluation from her teacher. In my opinion, you will need to document before and after gluten free in order to really show a difference and come up with adequate proof for your doctor.


Janet

Experience is what you get when you didn't get what you wanted.

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Gluten sensitivity is a definite possibility. You do not have to be a celiac in order to have serious adverse reactions to gluten. Few people can properly digest it.

My dd also tested negative and since going gluten-free, things have improved dramatically. Her doctors have no problem writing us a note for school considering the positive changes that have occurred. They figure that as long as I'm willing to take this on, the least they can do is support me. ;) We deal with GI issues, canker sores, hyperactivity, poor concentration, restlessness, irritability and a plethora of other symptoms when dd gets exposed to even trace amounts of gluten.

I would highly recommend that you discuss all of the symptoms with your child's doctor and let them know you will be doing a trial of the diet. Then follow up with the results of the trial and let them know if and what symptoms resolved with the trial. I would also tell the school the same thing and explain to them that they are not to feed your child anything that has not been approved by you. That means you will provide food and snacks. There is no other way to accurately assess the situation unless you are thorough with this. Gluten-light just won't cut it. My dd tested negative for celiac disease, yet ONE crumb will give her troubles all day, sometimes several days. If you want a true answer, don't stack the deck to give you another false negative. There's no point in doing all of the work to be gluten-free and blow it over a bag of cheez-its handed out at the school.

Good luck! And let us know if we can help.


Vicky

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Celiac testing is also notoriously unrealiable, especially in little kids. All of my tests were negative, but based on my genetics (DQ2) and obvious dietary and overall response to the diet, my doctor was comfortable diagnosing me with celiac. He didn't want to make me go back on gluten for the endo, thank God. If gluten-free works, go for it. If you need a doctor's note, keep searching until you find a doctor that will write one. Based on your family history, I would be shocked if there wasn't something gluten related going on.


Gluten Free since 10/07

Mildly Lactose Intolerant, slight intestinal symptoms after eating milk products, but easily corrected with lactase enzyme

Endometriosis- DX'd 5/07

Gluten Antibodies- "negative"...don't know exact numbers, am highly suspicious...

DXed celiac 12-19-07 via genetics/elimination diet- DQ2 allele

Brother with Celiac, aspergers...his tests were all negative (he didn't have genetics done), including endoscopy, but he definitely is at the least gluten intolerant...highly suspect my mother has it as well- she has hyperthyroid, fibromyalgia, hemochromatosis, and now colon cancer, and she has been weak and exhausted and just generally sick. She's going to get tested.

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Celiac testing is also notoriously unrealiable, especially in little kids. All of my tests were negative, but based on my genetics (DQ2) and obvious dietary and overall response to the diet, my doctor was comfortable diagnosing me with celiac. He didn't want to make me go back on gluten for the endo, thank God. If gluten-free works, go for it. If you need a doctor's note, keep searching until you find a doctor that will write one. Based on your family history, I would be shocked if there wasn't something gluten related going on.

HAK1031, I am curious about your testing, especially the gene test. Is that something that can be done through a regular lab (and thus covered by insurance)? Did your gastroenterologist prescribe this test? My bloodwork and endo were negative but I responded well to the diet so I'm curious if I could still have celiac...


gluten-free since 9/30/09

positive gene test 8/11/09

endoscopy 9/30/09 (awaiting results)

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Janet, I believe that dyslexia actually can be diagnosed at this age. My sister was diagnosed at the age of 6 and because of the early diagnosis she was able to get over it. But I agree with your that it might be too early for other diagnoses such as ADD. I hate to see so many parents putting their children on medication instead of just giving them the care and attention every kid needs. Of course, I don't want to generalize, but I have seen kids like these. What they really needed was an attentive parent and not medication. (Shannon, don't take this personal, I'm not talking about you now but generally about what I've seen).

Shannon, I didn't want to make my post sound like your dd is definitely dyslexic, it was just a thought. If she's responding well to a gluten-free diet what about trying to find a doctor who would give you a diagnosis just because of a positive dietary response? It might be a hard thing to do but reading these boards I came across a few people who were diagnosed that way. That way you'd have the diagnosis for your dd's school.

Good luck!


gluten-free since 9/30/09

positive gene test 8/11/09

endoscopy 9/30/09 (awaiting results)

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Sandi-

Yes, my GI prescribed the test through prometheus- however, we had a big battle with the insurance company to make them cover it. Also its results alone are not enough for a diagnosis, as something like 30% of people carry a celiac gene, but if you have symptoms, it can help confirm your suspicions. You could also be plain old gluten intolerant, the symptoms in that case are just as bad as celiac.


Gluten Free since 10/07

Mildly Lactose Intolerant, slight intestinal symptoms after eating milk products, but easily corrected with lactase enzyme

Endometriosis- DX'd 5/07

Gluten Antibodies- "negative"...don't know exact numbers, am highly suspicious...

DXed celiac 12-19-07 via genetics/elimination diet- DQ2 allele

Brother with Celiac, aspergers...his tests were all negative (he didn't have genetics done), including endoscopy, but he definitely is at the least gluten intolerant...highly suspect my mother has it as well- she has hyperthyroid, fibromyalgia, hemochromatosis, and now colon cancer, and she has been weak and exhausted and just generally sick. She's going to get tested.

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Thank you all for the responses. I will write a longer response myself tomarrow. I was glutened tonight. Just wanted you all to know I was reading them and appreicate it. I am too sick to type or think.

Shannon

Oh no, I hope you feel better soon! :(


gluten-free since 9/30/09

positive gene test 8/11/09

endoscopy 9/30/09 (awaiting results)

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HAK1031, thanks for the explanation! I think I'm more likely to be just "plain intolerant" so it wouldn't show up anyway. ;)


gluten-free since 9/30/09

positive gene test 8/11/09

endoscopy 9/30/09 (awaiting results)

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Thank you all. I spoke to my daughters teacher regarding dyslexia. She believes that it is too early to tell. I do know that it is common to reverse numbers and letters when you are learning them. I am going to wait a little longer on this and continue to work with her nightly. We are also going to switch her to a public school next year. The private school does not have the recourses to provide intervention....if there is a problem. We may be trading one issue for another...BUT at least I wont be paying for it. :)

I am planning to make her gluten-free in a couple of weeks. After our vacation is over. I will try it for a month or so and see if there is any improvement in her skin and attention span.

Does anyone know if people with DH ALL test positive for celiac or is DH a totally different thing?

You all are so helpful. I have been struggling a lot personally with my celiac disease. I do not know what I would do without you all.

Shannon

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If you have DH you have celiac.

Also, if you have a gluten intolerance gene DQ1 or DQ3 (& a couple others I think) one is more likely to have dyslexia, & other neurological problems - most all are cleared up on the gluten-free diet...

when my dyslexic dil that has at least one DQ1 gene (two of her children are double DQ1) was gluten-free for about 4 months her dyslexia got a whole lot better. then she got off the diet & could not even find her way out of the parking lot...

You can also google dyslexia & get a test that shows letters & numbers on different color backgrounds. It is very itneresting to watch a person with dyslexia look at those & pick out their favoite background color - it makes the letters appear to them as we see them on plain white - they can read them without the letters jumping all over the place.

The problems with schools is that they "label" a child. Once dyslexic not always dyslexic...

If a person tends to dyslexia they are usually extra bright - or so I think...

As far as being gluten-free at school, the school only needs your instructions as to what your child can or cannot eat. There are no laws that says you have to prove your child needs a Kosher, peanut free, milk free, sugar free, beef free, gluten free or any other type diet. The parent has the ultimate say in what the child eats. Now if you want them to pay for special food, you might need a 504 plan, but if you are sending food & instructions that your child is not to be fed anything else...

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I teach kindergarten and I have several in my class this year who write there numbers backwards in the exact same way. They can ask me "how do you write 24?". And I will respond first you write 2 and then a 4 but when I look at what they have written it will say 42. I wouldn't be that concerned about that but her other symptoms sound like they could be gluten. As far as needing to stay back, we have a handful every year that need to repeat kindergarten. Kindergarten is not what it was when we were growing up. They are expected to count to 100 by 5's and 10's. In my school they are even counting by 2's to 30. They are expected to be able to read sentences as well as write them. Kindergarten is like the old first grade from back when. In my experience, some can handle it well, most can do enough, but the rest struggle through it because they are still so little. If she understands the simple concepts like letter recognition, number recognition and so on then she is just a little behind and will hopefully catch up with an extra year of kindergarten. Don't worry yet, but trying the gluten free diet can't hurt, it can only help.

Nicole

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