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New, I Need Advice

krisb

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krisb Contributor
krisb
Posted

My son is 8. He is little for his age, 10% for weight, and has severe allergies. He is allergic to a lot of foods and also get allergy shots. He has a history of slow growth, fatigue, belly pain, skin rashes ect. He was failure to thrive in his first year and fell off the charts. Now I had brought him to the Dr. because he is always tired and doesn't look good. He had blood work done for the third time. It showed that his iron was normal but his hemoglobin was low and his one thyroid test was low. Between his allergist and his Pediatricain they don't seem to be too concerned. I pushed for them to do the celiac test because he has all the symptoms. The allergist said that the tests came back high suggesting a positive for celiac. He still made me feel stupid for even condidering the fact that he can have celiacs and said he will rule it out with another blood test. we are waiting results on that one. I talked to his pediatricain today and asked him what his thought were on it and he said he thinks he has celiacs. But that was it. He didn't offer any advice. I asked if he should go to a GI Dr. and he said not to worry about it that he will be fine on his new diet. He wasn't concerned at all and that was the end of it. Now what do i do? Do I see a GI Dr. for him? What kind of Dr. treats Celiacs. He has so many food allergies to begin with that it's so hard to feed him. I'm very upset about this. I'm also upset that neither of his Dr.'s are very supportive about it. His allergist made me feel stupid and I don't even know what his diagnoses is and his Ped. says it's celiacs and walks away. Now what? I am convinced that my son has celiacs, it just fits everything. he has so many of the symptoms. I started the diet tonight I just don't know where to go from here.

Thanks,

Kris

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Carriefaith Enthusiast
Carriefaith
Posted

To be honest, a lot of doctors don't know very much about celiac and leave us on our own (like in your case). They just say start the gluten free diet and that's it. The best info on the gluten-free diet (from by experience) can be found on the internet, in books, and on this website. I would highly suggest going to the bookstore and buying some books on celiac and the gluten-free diet and some recipe books. Feel free to ask questions here on the website :)

KaitiUSA Enthusiast
KaitiUSA
Posted

Doctors are not really up on things when it comes to celiac. Also, celiac is not an allergy so if your allergist did allergy testing then it would not show celiac. Celiac has a separate panel that needs to be done. Also, if the celiac panel was done, which tests were they? Was it the full panel?

Celiac can't be treated by doctors. Only thing you can do is go gluten free and that keeps it under control.

Dietitians, nutritionists, and doctors know nothing about it. Your best bet is to research yourself and this site is a great place to come to for info and support.

krisb Contributor
krisb
Posted
  • Author

Doctors are not really up on things when it comes to celiac. Also, celiac is not an allergy so if your allergist did allergy testing then it would not show celiac. Celiac has a separate panel that needs to be done. Also, if the celiac panel was done, which tests were they? Was it the full panel?

KaitiUSA Enthusiast
KaitiUSA
Posted
His pediatricain did a blood test, I don't know what one, and it came back positive. The allergist got the results and said he didn't like the test that was run so he was running a different one to rule out a false positive. He has 2 Dr.'s working on this and it seems like neither one of them have an idea. The positive was enough for one Dr. but the other Dr. is so determined to rule it out. Even with all the symptoms.

Do you know which tests were run? If you don't I would find out and post them.

Forget the doctor trying to rule it out...he obviously knows nothing about celiac. I would change doctors. I had a doctor spending more time convincing me it was all in my head then actually figuring out what the problem really was.

Carriefaith Enthusiast
Carriefaith
Posted
The allergist got the results and said he didn't like the test that was run so he was running a different one to rule out a false positive.

A very slightly elevated blood test can still be accurate in detecting celiac disease. My grandmother had a mildly elevated tissue transglutamase blood test and she had villi damage in her intestine. Meaning that the blood test was highly specific for the disease.

Guest Lucy
Guest Lucy
Posted

Call the allergist you saw, ask to speak to his nurse and ask her EXACTLY what tests were run, and what they are going to run. Tell them you don't feel like you have enough infor. Then call your pediatrician and do the same thing. You have to tell a Dr when they are doing a bad job, or they don't know.

Second don't be afraid of them. They are just people. Even if they act holier than thou, they are not. I used to be afraid, but since my SIL and COUSIN and Best friend have become Dr.'s I realize they are just like me. I ask questions, and don't let them back out of the room until you are satisfied. You are paying them. They work for YOU!!!!!!!!!

Then when you get the answers you want. Find another pediatrician. Good luck. IT can be overwhelming. We are here to help.

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    • Mari
      My only proof

      By Mari · Posted

      Years  ago a friend and I drove north into Canada hoping to find a ski resort open in late spring,We were in my VW and found a small ski area near a small town and started up this gravelled road up a mountain. We  got about halfway up and got stuck in the mud. We tried everything we could think of but an hour later we were still stuck. Finally a pickup came down the road, laughed at our situation, then pulled the VW free of the mud. We followed him back to the ski area where where he started up the rope ski lift and we had an enjoyable hour of skiing and gave us a shot of aquavit  before we left.It was a great rescue.  In some ways this reminds me of your situation. You are waiting for a rescue and you have chosen medical practitioners to do it now or as soon as possible. As you have found out the med. experts have not learned how to help you. You face years of continuing to feel horrible, frustrated searching for your rescuer to save you. You can break away from from this pattern of thinking and you have begun breaking  away by using some herbs and supplements from doTerra. Now you can start trying some of the suggestions thatother Celiacs have written to your original posts.  You live with other people who eat gluten foods. Cross contamination is very possible. Are you sure that their food is completely separate from their food. It  is not only the gluten grains you need to avoid (wheat, barley, rye) but possibly oats, cows milk also. Whenever you fall back into that angry and frustrated way of thinking get up and walk around for a whild. You will learn ways to break that way of thinking about your problems.  Best wishes for your future. May you enjpy a better life.  
    • marion wheaton
      Are Lindt chocolate balls gluten free?

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      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
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    • knitty kitty
      My only proof

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