I suspect Celiac

[deleted account] ( 7 moms have responded )

I suspect my son may have Celiac disease. BUT from what I have read, a MAJOR symptom is failure to thrive. My son is average height/weight. He gets rashes around his mouth after eating things like shredded wheat (the frosted mini ones), he is on Lactaid milk because he had constant diarrhea after he started eating regular foods, he avoids most foods, and will not even touch it or gags, he sometimes passes stool that looks like clear jelly (a symptom of intestinal distress), sometimes complains that his stomach hurts.



What would you do?



ETA: my son is almost 3 years old and we've been struggling with this same circle of symptoms for almost 2 years, continually being shrugged off by our pediatrician.

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Angie - posted on 09/16/2009

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My son has always been off the charts for weight and 98% or above in height. Once he hit the peak of his dispair, which is when we FINALLY figured out what was harming him, he did not reach "failure to thrive" but his growth was stunt. For months he gained not a lb and grew not a cm. He has been g-free for a while now and is extremely slowly begining to grow again. He is however, still not failure to thrive and within average on all charts. Symptoms are different for everyone. There is also such a thing as wheat allergy, which is different from celiacs, and could cause similar reactions.

Rebecca - posted on 08/21/2009

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First of all, not all kids with Celiac have failure to thrive issues. My children are all in above average height and weight. There are over 300 symptoms of Celiac Disease, and most people only have one or two.
As a leader in my local Celiac Kids Support Group, I should be the good one and tell you to keep feeding your child gluten and have him tested (a couple weeks for the result of the anti-body test. . . a month or so to wait for a scheduled biopsy. . . and approx. 6 weeks for those results). That's what I should tell you. . . but I can't.
You know there is a problem, you suspect a solution, (a simple solution, though not easy). Why continue feeding your son gluten if you suspect it is making him sick? You wouldn't feed him peanuts if you suspected an allergy . . . but I digress.
Try the gluten free diet for 3 weeks. If it works, INFORM your doctor. Do the research and the experiment, and report the results. How will they learn without a teacher?

Emily - posted on 08/21/2009

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Find a good pediatric gastroenterologist and if I were you I would get another pediatrician that is better for you. If you are feeling shrugged off, it may be that the pediatrician is just not the right fit for you and your family. Also, going gluten free before testing can change the test results so talk to a doctor first. I fought the doctors on that one because our son was wasting away in the hospital but they quickly got a positive diagnosis and I was glad for that and know now they were looking out for the best interest of my son. It has been a year now since his diagnosis and he is growing and doing great and because I know for sure he is celiac, we can educate ourselves about how to keep him healthier in the long run.

Sarah - posted on 08/18/2009

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Testing is simple, just a blood test to check for increased level of antibodies. If that would show an elevated level, a biopsy would be the next step; this they call the "gold-standard" for diagnosing celiac disease. Our daughter was diagnosed when she was 2 (4 1/2 now). I think it is good to have the diagnosis if you are able to find a doctor willing to pursue it with you. If not, then go GF free with him and see if it helps. It isn't necessary to be officially diagnosed to feel better if gluten is the cause of the problems. The only issue is if gluten is withheld from the diet, and then a person is tested after not eating gluten, the test may show negative for celiac, since the body starts to heal quickly. This can happen in as little as 3-4 days, I've heard. Hopefully, your pediatrician will do the bloodtest for him, and if positive, refer you to a pediatric gastroenterologist. God bless!

User - posted on 08/17/2009

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IMO it doesnt hurt to try going gluten free. Many may tell you not to start the diet until you have had him tested but my feeling was always why wait. If it works then problem solved, and your son doesnt have to suffer any longer. The treatment would be the diet anyway if you had him tested.



Our DD did not have issues until she was four, we saw huge improvements almost immediately.

Michelle - posted on 08/17/2009

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if you suspect it do all you can for a diagnosis. i probably had it all my life i was just diagnosed in April I am 35. i was knocking on deaths door. i buggered up my organs and digestive system. i always got heartburn and had trouble with elimination but the last 1.5yrs. i had horrible gut pain and achey kidneys, low thyroid constant fatigue and anemia. In spite of all that i have bounced back very well. no more anemia or low thyroid, still workin on better energy levels. I hope you find your answers after i was tested i got the rest of my family checked and 2 out of my 3 girls also have it and all of our symtoms are different. Good luck to you!!

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