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goldyjlox

Still Not Sold On The Negative Test Results....

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So both my kids were tested for Celiac and they both came back Negative...I have read that test results on children as young as mine (3.5 years and 13 months) can be inconclusive. How true is this dio you think?? I tested negative my first bloodtest, but then a few years later I tested positive and of course my biopsy was positive. My kids doctor said to test again in a few years if there is not any problems.

I am not worried about my son, who is my youngest and he has not had to much gluten as of yet anyways. but my daughter is worrying me. The biggest red flag for me is her bowel movements, she has always been constipated and she is on a medication to soften her stool and we went on it for a month and it worked really well, and then I took her off it with her doctors advice and within two days she was having hard stools again. So I put her back on the powder and now her stool is Huge....and that was my problem. She hardly eats anything, meal times are a battle to get any food in her. She is super irratable and has been for the past few months, clingy..always asking for daddy. But she sleeps well, plays well is super active. She could gain some weight though, she has always been skinny. Sometimes she eats gluten and she seems different, almost like she has gotten "drugged" by it...if that makes any sense, maybe she doesnt feel well afterwards. I keep asking her how here belly feels but she never says that it bothers her but maybe she doesnt understand how her body is suppost to feel. My regular GP thinks that she is alright and that most children her age dont want to eat and that she looks healthy. I dont agree, she used to eat really well as a toddler, around my sons age. I have been slowly decreasing her gluten intake, and some days not giving her any gluten at all and on those days she seems more perky sort of speak.

Also, yesterday my mother had a positive blood test for Celiac, now this makes me more cautious of my children and I feel that I need to do something more. I am going to go back to our doctor and talk to him about her possibly having Celiac. My specialist said that the chances of my kids becoming Celiac are high and that at least one of them will end up with it. This also maybe normal stuff for a child her age but I feel that it is Celiac....

What do you all think. I know that I have posted before about my kids and alot of you said to go Gluten Free, I am definately going to try removing gluten and see how she feels...I am getting alot of grief from my MIL about all of this and I am wondering how you delt with the "Grandparents"....These are my kids and I will do whats best for them but my MIL is the "flour queen" and its dangerous, not only for me but for my kids.

Thanks for letting me rant!!!


1 negative Bloodtest.

2 positive Bloodtests.(years later)

Positive Biopsy 08/13/07

Gluten Free since 08/23/07

Jess (31)

Daughter (03/23/04) Negative bloodwork (10/22/07)

Son (09/14/06) Negative bloodwork (10/22/07)

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Grandparents.......a never ending problem. I had Enterolab done and amazingly my mother didn't question it. My MIL is clear across the country so that's not a problem. Another thing (if you have extra funds) is to find a holistic doctor to run an ELISA test. Make sure to test for IgG (delayed reaction) food intolerances. That is how I found out about my problem with gluten. We've also had something called ASYRA done.....it's alternative testing.

With celiac on your side of the family I would say your daughter is celiac and that the testing isn't picking it up. I don't know if you need an official diagnosis for school (when the time comes) but she really sounds like she needs to go gluten free. The gluten could be causing constipation. If gluten free doesn't help there then also going dairy free would help.

What about gene testing? If she has a celiac gene, family history and positive dietary response some doctors would be willing to say she's celiac.

My children went through being picky.....I don't remember what age that all started though. My youngest is almost 2 years old and he's copying his siblings if they don't eat something. My firstborn was always picky, my second born has become picky, he's 5. I would suspect your daughters pickyness, in part (if not in full), is from not feeling well. Gluten is like a drug, so no surprise in that area.

I wanted to add that testing is highly unreliable in children so young.


Andrea

Enterolab positive results only June 06:
Me HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0301; Serologic equivalent: HLA-DQ 2,3 (subtype 2, 7)
Husband HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0302; Serologic equivalent: HLA-DQ 2,3 (subtype 2,8)



The whole family has been soy free since February, gluten free since June 2006.

The whole family went back to a gluten diet October 2011.  We never had official testing done and I decided to give gluten a go again.  At this point I've decided to work on making some gluten free things again, though healthwise everyone seems to be fine.  The decision to add gluten back in was also made based on other things I'd read about the 2nd sequence of genes.  It is my belief that we had a gluten intolerance, but thanks to things I've learned here, I know more what to keep an eye on.  If you have a confirmed case of celiac, please don't go back to gluten, it's a lifelong lifestyle change.

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I keep asking her how here belly feels but she never says that it bothers her but maybe she doesnt understand how her body is suppost to feel. My regular GP thinks that she is alright and that most children her age dont want to eat and that she looks healthy. I dont agree, she used to eat really well as a toddler, around my sons age. I have been slowly decreasing her gluten intake, and some days not giving her any gluten at all and on those days she seems more perky sort of speak.

I say that you should trust your mother's instinct. You will be the one to pick up the subtle changes that occur when she first begins to present with symptoms. My dd hit a point (age 9 at the time), after a year or so of very subtle symptoms, when she seemed to tip over some threshhold and started getting worse very quickly. If celiac disease had been on my radar at that point, perhaps I could have caught it before she got so sick. In our family, my dd was the first....and now several of us (adults) are figuring out that we have gluten problems. You actually have the family history to indicate, right of the bat, that your dd is highly likely to have celiac disease. That, coupled with the fact that you see her being perkier without gluten, seems pretty solid to me. What would be the harm in taking her fully gluten-free? You'd probably get an answer from that. I will hold a positive dietary response up against a blood test any day. After all, the proof *is* in the pudding (response to diet.)

As far as grandparents go....I had to get "tough" with my in-laws. I just told them that gluten-free was the way we did things now, and that they were not, EVER, under any circumstances, to give my dd (and now my ds - he's gluten-free now too) any food that I hadn't approved. I had to be that harsh because they were questioning her diagnosis and the need to be completely gluten-free ("a little won't hurt, right?") It was uncomfortable at first - they didn't like being confronted - but they've adapted and are starting to come around. It probably helped that their youngest son (my b-i-l) was just diagnosed with celiac disease. They can't deny that celiac disease is in the family now.

My mom has always been supportive, and in fact, is now realizing that she probably has a gluten intolerance or celiac disease - she's chronically anemic, has Graves disease, severe reflux and possible RA. I'm encouraging her to get tested.

So....go with your instinct on this. YOU know your dd and what is normal for her. A blood test and a Dr's visit that lasts a half-hour CANNOT replace that.

Good luck!

Rhonda

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I also had a super picky consitpated kid. Terrible poop battles that lasted for years. Clingy, tummy aches, refusing to poop for days on end, etc. Medication helped, but she was on really high dosages. Eventually I ended up removing all dairy from her diet and the constipation is gone. My guess is she has severe lactose intolerance. After a few months of 100% dairy/casein free she was a new kid. And of course she challenged the issue and ate TONS of pizza one day (gluten is not currently her issue, but I am beginning to wonder). Well, the constipation came right back. Fortunatley it proved her problem with dairy to her. Now she does not beg for dairy, she drinks non-dairy milks. If she is going to have pizza- a rare treat- she takes a lactaid first. No more poop problems at all. So I highly recommend making your child 100% dairy/casein free. BTW, the picky kid feature has never left! Occassionally she tries something new, btu it is rare!

My younger child has all the symptoms of Celiacs. Finally managed to get her biopsied. Inconclusive results, but she has the gene. (I have Celiacs). Dairy is a major problem for this child from birth. She is now 100% dairy/casein free. That helped some. Then, a vast majority of people on here recommended making her gluten-free. It took a while, but I finally listened. She is now 100% gluten-free/CF and doing OUTSTANDING! She has grown, gained weight, no more diarrhea, no more rash, and a huge improvement in behavior.

Personally I am all for testing for Celiacs. I do not want to wonder later if the diet really helped or was it soemthing else. But as many of us know, getting a diagnosis is really hard at times. My pediatrician did not believe that there was anything wrong with my 2 yr old who was dropping in percentages and still in 12 mth old clothes at 2yrs old. Now he sees her growing and agrees that the diet is doing something for her. In a few months she will get her 3 yr old check up and I expect the Dr to agree that the positive diet changes equal a diagnosis of Celiacs for this child.

As for Grandparents issues, unless the relative lives nearby, I wouldn't even bother explaining it to her until a few months have passed. A little education and a little proof go a long way for relatives who think you are nuts. Keep a list of changes in your kids when they go dairy free or gluten free. Keep a weight and growth chart - measure them and record it on a specific day every month. Keep a reaction log. This will all become the proof you need that gluten and dairy cause problems for your child. After you have all that info, you can explain everything to the grandparents and explain the rules regarding your childs diet and how that impacts your relative. Keep in mind that they will not agree or understand very easily, but eventually they will come around. I have battled family about food allergies and celiacs for years. It takes a while but eventually the stuborn people realize that the diet is not that hard and the kids are thriving.

Good luck! Just keep doing what is best for your kids. :)

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