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mflanders

Blood Test Results Are Negative?

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I recently had all my kids tested for celiac, as it runs in my family. I have celiac, as does my mom and one sister. All of us are biopsy confirmed. I had my kids tested at the University of Chicago celiac program free screening. I thought the oldest might be positive because he has constant belly aches, esplosive bowel movements, frequent bowel movements and loose ones. He is very gassy. He has headaches and mood swings. He cries a lot, seems to be when he is hungry. He has dark circles under his eyes. He also still wets the bed, which may or may not be related. He is 11. He seems "addicted" to gluten. He has been so sick that he asked to try the gluten free diet before the results came in. He was only on it for about 4 days before the results came in, so we did not see to much in the way of improvement, but he did not complain about stomach aches quite as much. Once he found out he was negative, he ate some crackers and immediately got sick. He has asked to go back on the gluten free diet, but keeps changing his mind because it is such a strict diet and he does not feel he "has" to be. If it is not celiac, where do I start? Do I go to ped GI? An allergist? someone to deal with his headaches? a therapist, because it is mental? We tried his regular doctor who said to limit milk and gave him previcid and an allergy med, neither of which has helped. I am at my wits end and need help. Any advice will be appreciated.

Missy

Confirmed celiac

Mother of 3 boys

All negative for celiac per bloodwork

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My first thought is did your son have a Total IgA Serum done in his coeliac blood panel?

If you suffer from a condition called IgA deficiency you don't produce enough of a certain antibody and it can give you a 'False Negative' on bloods for celiac disease.

That said my husband also had negative bloods for celiac disease (no IgA deficiency though) but biopsies showed he did in fact have celiac disease.

I think there's 2 ways you can go from here;

Insist on seeing a GI paediatrician with a view to biopsy your son,

or

Have him go gluten-free anyway as his symptoms are so much better gluten-free.

There are many number of parents on this board whose children didn't get an 'official' diagnosis - but whose health has improved dramatically by going gluten-free.

A positive reaction to going gluten-free is in itself a valuable diagnostic tool

It really is a personal choice - but if you feel that your son would maybe have trouble sticking to the diet without a 'diagnosis' then I would persue the paed/biopsy route.

Good Luck :)


It's not enough that we do our best; sometimes we have to do what's required - Sir Winston Churchill

Nikki

Son diagnosed with Coeliac Disease Oct 2006 by biopsy (at age 13yrs)

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Guest nini

the tests in kids are unfortunately not that reliable despite what the medical communtity claims. He is most likely Gluten Intolerant and that is just a precursor to Celiac. With such a strong genetic predisposition and albiet limited positive dietary response, I'd say it's a given that he has to be off gluten for life. I think it's awful that the medical community is so set in their ways that if the tests are "negative" they don't think it's possible to have it. Too many people in my local support group and on this board have had repeated negative tests only to continue to get sicker until they FINALLY got a positive dx after they were so sick they'd aquired other related autoimmune disorders as well.

My daughter's test was negative, but I tested positive and her symptoms were just like mine as a baby, and with her pediatrician's support we tried the diet. The ped. recommended at least 3 weeks, but if the child is older it may take longer. After ONE week I had a totally different child and today she is a very happy healthy six year old and she LOVES the gluten-free diet.

I would suggest getting the pediatrician on board to supervise an extended gluten-free trial period and if he really starts to improve the pediatrician can dx gluten intolerance which basically is the same thing as celiac only no proven damage YET. And the treatment is the same. gluten-free diet for life.

Also, yes, he very well may need to eliminate dairy for a while as well, maybe even permanently.

Good luck with it all, kids can be stubborn, I hope you can convince him to stick to the diet. You may have to eliminate all gluten from the house and send lunches for a while...

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Hi, It sounds like your son would definitely be better off gluten free with or without a diagnosis, seeing as he gets so sick when he takes any, especially considering the family history. I cant offer much advice as I am only learning about this whole process myself at the moment, but I can empathise with your frustration with the bloodworks. My son has a lot of symptoms of celiac but mostly mood swings and unbearable crying episodes that can go on and on and on... he is also lactose intolerant however his bloodwork came back negative and his ped basically said, oh its negative so he definitely doesnt have celiac then... which made me so mad as he ignored the fact that all the symptoms remain. My husband, who has a long list of symptoms, is currently awaiting his results from bloodwork done recently. If my husband tests positive for celiac then I will absolutley take it as a given that my son is celiac too. In fact either way we are going to go gluten free as of Monday. (I live in rural area and will have to make special trip to nearest gluten free stockists) A positive reaction to the diet will also be enough for me, regardless of diagnosis. Only problem is convincing our respective families as I suspect they think I am a bit neurotic about this whole thing... a diagnosis would be nice but dietary response will have to be diagnosis enough! (hopefully)

Good luck with your son. This is a great board for helpful information and kind folk who really do care!

liz

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My daughter is 10 and still wets the bed. :( We think my 8 year old has Celiac, but since the doctors didn't know the proper tests to run, my only diagnosis is positive dietary response and a double copy of DQ2. Now my daughter is popping TUMS left and right, wetting the bed, have bone/joint pain and has bad allergies. I'm going to get her in to the doctor this week. I know it stinks. I don't want to make my daughter go through an unneccessary diet if it's not right for her. I also follow the gluten free diet. It's definitely has helped me. I had terrible GERD and indigestion all the time. Now, I'm so much happier. I'm going to take my daughter to the doctor hopefully next week. Good luck and please PM me on the bedwetting. :)

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Guest nini
I don't want to make my daughter go through an unneccessary diet if it's not right for her. I also follow the gluten free diet. It's definitely has helped me

if it helps her then it's not an unneccessary diet. the testing in kids is so unreliable and positive dietary response would tell you pretty quickly if it helps your children or not. If it doesn't help after say minimum 1 month, then don't keep her on the diet

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thanks for the advice. :)

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mflanders- Your son sounds exactly like my son. I thought for sure that he'd test positive and was completely shocked when all his tests were negative. The pediatrician told us to try out the gluten-free diet anyway and we've seen good results. But he wasn't cooperative at first. He kept saying, "But the tests were negative - I'm fine!" And then he'd feel yucky, get emotional and have a bad day at school hen he had gluten. We had him tested by Enterolab and even that was negative, but I KNEW he had a problem.

I finally convinced him to try it without cheating and now he's on board. His behavior, emotional stability and gas, etc. are all WAY better now. I figured I'd rather he NOT get so sick that he has horrible health problems later in life - I want to prevent him from getting as sick as I did.

Why not give the diet a try? If he starts feeling a lot better, he'll probably come around. If he doesn't feel better, than you can try something else.


Liz

Started Specific Carbohydrate Diet on 8-16-09 because son was diagnosed with Ulcerative Colitis and want to give him moral support.

Diagnosed with Minimal Change Nephrotic Syndrome in 2003. Discovered that going completely gluten-free put me in remission.

I would have despaired unless I had believed that I would see the goodness of the Lord in the land of the living. Psalms 27:13

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