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What Would You Do?
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We are 3 weeks in to going gluten free here. Did it all the wrong way...but to make a long story short- there is NO way I want to put my kids back on gluten now for testing. But, my 5 year old has had a rash for 2 years on his bottom. It bleeds sometimes. Looks like zits. It completely went away after 3 days gluten-free. I tested him 2 days ago and gave him goldfish. the rash was back and bleeding the next morning! 30 hours later after no gluten. it is completely gone!! Now, how do I go about getting him tested for celiac without giving him gluten for months???

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You can't? He'd have to be on it for a several weeks (i've heard anywhere from 2-6 weeks, longer the better) just for the testing to come back accurately. The only test that does not require this is the genetics test but generally that alone is not enough for a diagnosis.

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Even for the skin biopsy he has to be eating a full gluten diet. You could try giving him gluten for a week & get the dh biopsy & if it's neg. you can be pretty sure it was false neg. but there's the off chance that it will be positive.

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although if you had a sympathetic doctor, the genetics test and your own observations may be enough for a diagnosis?? Ahh, I don't know. It really is a dilemma. But if it was me, I probably would continue the gluten. It's such a lifestyle change and particularly hard with children. I personally would need the formal diagnosis behind me. BUT that is only me. I guess it depends somewhat on how you feel like you will go later on.

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I would just go with your gut and the positive results he has had. You don't need an official diagnosis to eat a certain way. I'm glad that your kids are doing better! Thats the most important part.

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    • Hi lolobaggins, Yes, it is not unusual to have symptoms that come and go after going gluten-free.  Edema (swelling) can also be a symptom of an allergic reaction.  Fatigue is not fun but remember your body is trying to heal a major organ, your gut.  So some rest might be a good idea.  The immune system response is going to keep going for several weeks to several months.  Each little bit of gluten kicks the immune response off again and extends the healing time.  So it's helpful to be very careful with your diet. Meats, vegetable, and nuts are good foods to eat at the beginning.  And whole foods rather than processed foods.  Dairy is often a problem until the villi are healed.  After a few weeks if things are going well you can try to add one new food a week and see how things go.  But take it slow and easy.  The fewer foods/ingredients we are eating the easier it is to identify problem foods. Welcome to the forum!
    • Welcome to the club that you never wanted to join!  (I plagiarized that from someone else here but can't recall who so I can't give credit to them.) Anyway, there is a steep learning curve to being gluten free.  It takes time to learn to read labels.  It takes time to heal (like months to YEARS).  Symptoms can wax or wane.  You just have to keep moving forward.  Give yourself time to heal and do not worry about the gym right now.  It will come back later, I promise (from a gal who cycles, swims, and runs).   Read our Newbie 101 section pinned at the top of the "Coping" section.  It contains valuable tips about cross contamination and hidden sources of gluten.  Read, read, read, the internet from reliable sources (not crazy bloggers).   You will feel better soon.  
    • Ha!    That happens to me all the time!!!!!  It drives me crazy!
    • "Accidentally marked them soy free".  Are you kidding?  That's fraud!  Consumer Reports just issued a huge report this month on supplements.   Yes, everyone thinks they are all "natural" and therefore safe.  Doctors and nurses recommend them all the time, but they can do a lot of damage.  Anyone can start making them in their bathroom and there's literally no regulation.   Geez, it is safer to buy food products (no gluten ingredients listed) from companies like Kraft and ConAgra because they are regulated more!  http://www.consumerreports.org/cro/magazine/2016/09/index.htm What about the probiotics?  Columbia University tested about 20 of them and found that over half had gluten in them.....enough to make celiacs  remain sick. https://www.sciencedaily.com/releases/2015/05/150515083232.htm Think twice about taking supplements.  Make sure you really medically need supplements.  I prefer certified gluten-free if I need to take them and I take nothing right now because all my labs are okay!  You have been on the gluten-free bandwagon for many years (member here for years).  Your doctors should be looking at other things that might be making you sick still.  Something is wrong!   That's my two cents!    
    • Hi Schlafentzug, The usual diagnosis process is a blood test for antibodies first, followed up by an endoscopy to check for gut damage.  You have to eat gluten for 12 weeks before the blood tests. It sounds like your brother may have celiac disease also.  His gut lining villi were damaged by something, and villi flattening  is a common celiac disease indicator.  Being shorter than other family members is also a common indicator. The excessive gas is probably from bad digestion.  The gut damage interferes with proper digestion and some enzymes aren't made.  Lactase is made by the villi in the gut. You should definitely get tested and before going gluten-free IMHO.
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