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Any Help With Celiac Markers?


cherie012

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cherie012 Apprentice

Hi All~ I am mama to Mason, nearly 2, who has had an INCREDIBLY sensitive stomach since birth. He is intolerant to milk and soy, and within the past 9 weeks, he's had HORRIBLE diarrhea that hasn't gone away.

Now, he has lost weight, his stools are rancid, green, mucous filled messes. He does keep ulcerations on his bottom when we go through these bouts along with a list of other issues~ he will reflux still on occasion, . He's been anemic before ( still awaiting to see if he is again)...

Well. the ped GI ran blood tests, and he came back with 2 celiac markers~ HLA DQ2 and HLA DQ8. He will be scoped on friday for more testing.

Any info you all have is greatly appreciated. I think out of all the things that could be wrong, this one is my worst fear.. thanks so much!


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aikiducky Apprentice

Don't panic. :)

Sounds very likely that your son does have celiac disease. That's good news. It means that you have an answer for his sensitive stomach, and probably for a number of other stuff that you don't even think about now but that will clear once he's been gluten free for a while.

The beginning is the hardest, because it'll take a lot of work to find out what he can eat and what he can't, and tell all the people in his life so that they don't feed him gluten accidentally. But once you start to get into the swing of it, the diet really isn't difficult, and it's a very healthy diet. And you'll have a healthy toddler to enjoy. :) and that's it, the only thing that is needed is the diet, no surgeries, no medication, just eating healthy gluten-free food. It's really not that bad.

Pauliina

RiceGuy Collaborator

I would basically echo what aikiducky said. It's nothing to really fear, except if you hadn't found out. Just be very happy you caught it early. If only the rest of us were so fortunate.

And yes, the diet will get easier, especially with this forum, and all the wonderfully helpful people to assist you along the way. The good thing is that it takes no drugs, and you can try it no matter what the test results are. Keep in mind that gluten intolerance and Celiac disease are harder to detect in children at that age. The improvement with a gluten-free diet is the best indicator by far - for anyone.

cherie012 Apprentice

Thanks~ you both have a soothing tone to the message, and I am not quite as fearful now. I think, at this point, I would rather they find out that he does have it tomorrow instead of more uncertainty. After 9 weeks of rancid BM's 3-9 times per day I am ready for a diagnosis and a treatment plan. I think that regardless of the test results I will still trial him on the diet, but for how long? how long until results are seen? what is considered "normal"? He's NEVER had a "normal" bm ever in his life, just varying degrees of ick.

fisharefriendsnotfood Apprentice

Don't worry. Usually, in small children, results are seen within a month. He will probably be back to normal in two or three months!

-Jackie :D

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      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
    • trents
      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
    • trents
      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
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