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What Test To Have Done First?
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4 posts in this topic

My son has been gluten free for 3 years. This was on the recommendation from an occupational therapist. His stomach improved immediately. He used to vomit quite a few times during the year (non viral), and the rash on his elbows and knees disappeared. Since that time I feel I have done a lot of research on celiac, and wish I knew to have him tested before ever going gluten free, but at the time I just didn't know.

Fast forward to this year. In January I started letting him have food at birthday parties and whenever they brought special snacks into school for birthdays, fun Fridays etc. he seemed to do well, so we started eating out once a week and letting him have whatever he wanted. Now in the past 2 weeks I started giving him gluten everyday. My husband and I decided to have him tested for celiac. Now I am trying to figure out which dr to go to. I read that the internal biopsy can be done as early as 2 weeks on a gluten challenge. Blood tests need a lot longer time on gluten.. And can easily give a false negative. But what about dh biopsies? He has active lesions on his elbows that have returned because of the gluten. Can he be tested now?

Where do you recommend I start. I have the name of a pediatric GI (who does a lot of work with celiac kids), do I see his pediatrician first for a blood test, or try seeing a dermatologist to have the rash diagnosed?

The rash looks like it's getting worse and I've been keeping an eye on his knees. I feel like it's only a matter of time before his knees break out too.

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The general rule for a dh biopsy is to have been actively eating gluten for 2 months --- same as for blood panel but with dh, we tend to test false neg. on the blood work 60% of the time. The biopsy for dh has to be taken from clear skin ADJACENT to a fresh lesion NOT ON IT. The patient can't have had oral or topical steroids for 2 months prior.

 

If the Ped has experience with celiac you might start there but has he had experience with celiacs presenting with dh???? It's a different ball game. If the Ped will do a endoscopy but again, those with dh tend to have patchier damage so he may miss it. And I wouldn't count on the 2 weeks rule. The study I read was a very small study group. The problem is, if tested & it comes up negative then docs shut the door on the possibility of celiac disease. 

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I don't understand if someone is intollerant to gluten shall he be forever ?

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I don't understand if someone is intollerant to gluten shall he be forever ?

 

If you have Celiac Disease - It is forever.

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    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
    • I like your plan Cara, I may have to include it in my sons.    Poor little guy is still very very sick. I think he is resisting and cheating, despite having the support of two other siblings and a 100% gluten-free home. 
    • Despite it being a nightmare, I did wait for my kids to get biopsies. At one point I had one severely ill child gluten-free and two more waiting having to eat it. It was worth the wait though and I think long term a biopsy may be worthwhile, especially for school. I have already had issues with schools and camps so having a firm diagnosis has been helpful. 
    • Knowing that the reaction to gluten in celiacs is an uncalled for immune system reaction, I was thinking of how a cure would be possible. Maybe a medicine that somehow turns off the immune system. The only thing that i've heard do that... HIV.  obviously that's way worse than celiac. Just some food for thought.
    • Well, you can probably get an apple or something.  You might be able to get someone to boil you some eggs.  But be careful of things like nuts that should be naturally gluten free.  They have almost always been soaked in a flavor solution that usually containes caramel coloring, "soy" (wheat) sauce and other aditives.  If I am really hungry and must eat in a Chinese restaurant, I order plain white rice and steamed vegetables.  But even so, you must monitor it carefully.  The rice sometimes has other substances added to give it a better texture, and very often the vegetables have in fact had "just a little bit" of soy sauce added.  To be fair, celiac disease is hardly ever found in East Asians, so understandably people are not tuned it to it.  Also, culturally, with the exception of fruits, it is generally thought that the flavor of foods needs to be enhanced, so it is had to find anything natural even in the "western" gorceries. Even in the western restaurants, be careful.  Fish and meat and often vegetables are usually pre-marinated. I will not even attempt to address the issue of cross-comtamination, since that is a whole higher order of things. I do know what I am talking about; I have celiac and have worked here for nearly 7 years.  
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