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Waiting For Results

boho*mama

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boho*mama Apprentice
boho*mama
Posted

Hi, I'm new. I'm scared. I'm overwhelmed.

My son was just tested for Celiac yesterday, we'll get the results next week. He's got a lot of symptoms, he's 21 months and as developed (physically, emotionally and developmentally) as a 14 month old. His failure to thrive got me investigating and I wanted to talk to the dr about gluten intolerance but when the Dr saw the dry rash on his cheaks he suggested it first. If it comes back positive will we all need to be tested? My other son has eczema but no other symptoms....sorry train thought...

We are planning to go gluten free but that task seems impossible. I know it's not, I just have to learn a whole new way to cook, shop and order food at restaurants. We feel it will be best if our house is gluten-free even if the baby is the only one who needs it that way he has one place in the world that's safe and comfortable. Is tath okay? Will my other kids feel put upon by thier brother's new diet? Is gluten nutritionally important to non-celiacs?

I'm having a hard time taking it one step at a time. Every question leeds to more. Every fear opens the door to another.

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laurelfla Enthusiast
laurelfla
Posted

first of all, you have come to the right place! and props to you for getting to the bottom of what is going on with your son. i'd suggest reading all you can here and on other celiac websites to gather all the info you can while you wait for the results to come back.

no, gluten is not necessary for non-Celiacs, and Dr. Peter Green (Celiac expert) says that no one actually digests wheat that well, that humans were never meant to eat such large quantities of grains as we do. so they won't miss out on anything healthwise. if they complain or seem to not be happy with what you decide, you can always remind them they can have gluten outside the house. (i'd kill for that option!) ;)

it is completely normal to be totally overwhelmed by the lifestyle change that you might be about to take on. there are so many questions and so many things to remember. i'll be thinking about you all and praying for speedy results!

Disney323 Apprentice
Disney323
Posted

Hi Bohomama,

I'm in a similar situation. My son is 17 months and was diagnosed via bloodtest that he could possibly have Celiac Disease. My husband and I were both quite upset and didn't feel it could be as he's shown no symptoms that I thought would relate to Celiac. He is Failure to Thrive (19 lbs. at 17 months) and doesn't eat much at all. He had a biopsy (which will be the next step for you if the test comes back positive). We are awaiting results but the Dr. feels it's Celiac because he has bumps in his intestine. Meanwhile, I've startd him on Gluten Free (he couldn't be Gluten Free until the biopsy was performed) and he hasnt' shown any changes yet. It's only been a week though. I wish you the best of luck. This is a great website to come to. I am still learning and am very overwhelmed too. Take Care.

~Andrea

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      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
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      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
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      No, I've not been diagnosed as celiac.  Despite Entero Labs being relocated to Switzerland/Greece, I'll be doing another test. After eating wheat products in Greece for 4 weeks, there wasn't any reaction.  However, avoiding it here in the states.   Thanks everyone for your responses.  
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