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New Cd Diagnoses....need Help


lauradawn

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lauradawn Explorer

Hi,

My name is Laura, and I just found out that I have Celiac through the blood test results. I am suposed to see a GI specialist. Should I look for a specialist for Celiacs?.......

Also, I am just trying to learn the secrets of the diet. I have been on it for almost a week, and am already starting to see some changes. Im a little overwhelmed right now, but just tyring to get a grip on everything. Any comments that might help would be greatly appreciated.

A couple questions that linger for me right now:

Who should I see for a Dr?

How young can a child be tested for the same disease? I am concered about my 2 year old twins.

How serious is cross contamination?


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Newbie Rookie

Hey Laura!

Welcome to the board :rolleyes: . From my experience, my family doctor sent me to a GI who deals with all types of stomach problems... and she discovered the celiac. So I'm not sure if you want to go to a specialist who only deals with celiac disease... You probably won't find many who just deal with celiac disease... If the blood tests already confirmed the disease, I would expect your GI to detect damage to your instestine when he/she performs an endoscopy. In my case, my GI deals with lots of other problems as well, and she diagnosed the celiac right off the bat with much accuracy.

When you're first learning about what you can and can't have, it will feel like a lot of information... that's because it is. But you'll pick up more and more as you read. Also, these message boards are amazing. You'll find very helpful people who can give advice, and also, they're hear to simply listen when you need to vent.

Cross contamination, as basically everyone on this board will tell you, is a very important concern. When I was first diagnosed, I asked the same thing. But with time, and some accidents, I've learned that even a crumb does damage. And I'm not sure what you feel after you eat something with gluten, but even a crumb of bread makes me ill for days. Nonetheless, whether or not you feel sick, if you have celiac and eat something with gluten, damage to your instestine will occur. So don't mix utensils from jars and butter, etc. onto your gluten-free food after others have used it on their non gluten-free bread. Wipe up your counters and be on the lookout for any ways that gluten can get into your food... for example when baking non gluten-free food, watch out for flour in the air settling onto your food and your counters etc. :unsure:

I'm pretty sure that 2 year olds can get tested for celiac. You may want to double check, but from what I've read on the boards, many people test their children.

Here is a helpful link to some gluten free foods... If you need anything, please feel free to ask. We're more than happy to help! :)

Open Original Shared Link

God bless,

Newbie

Guest aramgard

Hey Laura, Welcome. About cross contamination. I usually don't eat out much, but on Wednesday, my husband took me for lunch at a place where we often eat breakfast. I had plain burger, cottage cheese and tomatoes and I got sick about 15 hours later from cross contamination of the grill, which was used for heating up buns. Believe me it is a problem. So be very careful about where you eat out and feel better with your new diet. Shirley

mannabbe Newbie

Hi Laura,

Are there any celiac support groups in your area? That's be the best way to find a really great doc, and to get the best help for your children. Most doctors, in my experience, are pretty clueless - so you'll save time and heart ache by getting a recommendation. I'm really really happy for you that you've been diagnosed! I was diagnosed when my little girl was 4 - how wonderful that you will be able to share the best years of your life with your children. My daughter is now 7 and has been gluten-free for 2 years.

Good luck,

Laurie

wclemens Newbie

Hi Laura, welcome to the board. My grandson was diagnosed by Enterolab.com at a month or so of age, after becoming violently ill when drinking cow's milk formula. This stool sample can be ordered online, returned by mail, and can also diagnose whether your child carries the gene for Celiac, is allergic to milk and dairy, along with several other options.

When you go to that website you'll see the tests they offer. Best wishes! Welda

lovegrov Collaborator

If you're going to this GI for further celiac testing you need to continue eating gluten for accurate results.

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    • xxnonamexx
      What about digestive enzymes that I hear help? I take align 5x probiotics daily.
    • Samanthaeileen1
      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
    • Wheatwacked
      My son was diagnosed when he was weaned in 1976 after several endoscopies.  Given your two year old's symptoms and your family history and your pediatrition advocating for the dx, I would agree.  Whether an endoscopy is positive or negative is irrelevant.   That may happen even with endoscopy.  Pick your doctors with that in mind. In the end you save the potential trauma of the endoscopy for your baby.   Mine also had really nasty poop.  His doctor started him on Nutramigen Infant because at the time it was the only product that was hypo allergenic and had complete nutrition. The improvement was immediate.
    • RMJ
      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1.  Genetic testing.  Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With family history it is likely she has the genes. 2.  Try a gluten free diet and see if the symptoms go away AND the antibody levels return to normal. (This is what I would do). Endoscopies aren’t always accurate in patients as young as your daughter. Unfortunately, without an endoscopy, some doctor later in her life may question whether she really has celiac disease or not, and you’ll need to be a fierce mama bear to defend the diagnosis! Be sure you have a good written record of her current pediatrician’s diagnosis. Doing a gluten challenge for an endoscopy later in life could cause a very uncomfortable level of symptoms.   Having yourself, your husband and your son tested would be a great idea.  
    • Samanthaeileen1
      here are the lab ranges.  Normal ranges for tissue transglutaminase are: <15.0 Antibody not detected > or = 15.0 Antibody detected normal for endomysial antibody is < 1.5. So she is barely positive but still positive. 
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