Gluten Free
Ok, so maybe gluten free is a misnomer. Since taking my 3 year old to the doctor two weeks ago we’ve been severely limiting his gluten intake. The results have been good. The foul, peel the paint off the walls, smelling diarrhea and puking his guts out are gone. He no longer complains constantly that his belly hurts and , “Mommy, can I please have some medicine? (gripe water)” So the diet change would tell me he’s got a gluten issue of some sort. Whether it’s celiac disease or just an intolerance, we’re not sure yet.
Why aren’t we sure yet? We’re still waiting on the blood allergy tests. Yes, it was TWO WEEKS ago today that he had the blood drawn. Yes I’ve reported to the doctor that eliminating the gluten has made a difference, and when we add it back in the symptoms reappear. She still wants to wait on the bloodwork. THEN she will decide IF he needs a referral to a specialist. Once that happens, she will put in for a referral. It will then take Tricare TWO WEEKS to send us a paper saying this is the specialist you may call to get an appointment. Then, the specialist has about THIRTY DAYS to fit us into their schedule. Per my previous experiences. I’ve heard some specialists can take longer due to there not being as many and they have a higher demand of patients.
If I had not had the intelligence that when the doctor said she possibly suspected celiac disease to at least try to eliminate gluten, I’d STILL have a child puking and pooping everywhere during what is going to amount to about at least a TWO MONTH wait to get some concrete answers.
This is also a catch 22 situation. If we do get sent to a specialist, the tests they run to determine if he has celiac disease or not form what I’ve read will require him to have been eating gluten to be accurate. So I had to make a choice. I had to either wait it out and just let the system move at its molasses pace while my child suffered, or do what I could to make him feel better now. What would you choose? The only thing I can hope for is to get a doctor that will take into account that I had to do what was best for my child, and not wait on this slow managed care system.
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wait it out. in his lifetime this will be but a blip and you’ll never have to wonder about his diagnosis or wish you’d have done it. he is young and trainable to the diet. it’s much harder to train an older child (mine’s oppositional); heck, even adults “cheat” – which blows my mind and is SAD (usually it hurts too much to cheat, but there are some whose symptoms go ino remission for YEARS but eventually come back)! he may go off the diet at some point because he doesn’t believe he has a proper celiac diagnosis, and this will compromise his health even if he’s symptom free*. others in the family need to be tested (symptoms or not) if he is positive – would they test if he didn’t have a “gold standard” diagnosis? i wouldn’t, however, bother with an endoscopy (the other half of the “gold standard”)… but that’s just me. doctors like it, but it’s up to you. i tested my kid who has constipation and she was negative to both blood and endoscopy. she was positive to gluten, soy, and casein antibodies in the enterolab.com stool test (i also tested genes – she has one from each parent: me and sero-negative father (her paternal grandmother was celiac). this cost about $550). the test might come faster, but is likely not covered by Tricare.
*http://www.bit.ly/StormyJobe – was an unnecessary victim of wrong doctor advice. he ate gluten and it did in his liver (put ‘gluten liver’ in a search engine and read away). as a baby my BIL was also told that once symptoms abated that eating gluten again was just ‘fine.’ same as my MIL. take celiac seriously! http://www.glutenreactivity.net has lots of info. i feel for you watching him suffer, but try to read more to understand the whys of testing. jmho! good luck. i feel for you guys.
oops, should have mentioned his blood test could be negative and his endoscopy positive, so it is another diagnostic tool. if all else fails, use the gf diet. check into probiotics, too, or SIBO, or candida, or parasites, or even Lymes …
best wishes.
While I understand the importance for him to have gluten in his system for the testing, I find it highly unacceptable to allow my child to suffer from belly aches where he constantly begs for medicine to make them go away, puke, and have diarrhea all over while the managed care system that is military health care drags its feet. My son has already been sick for a month, and I had to argue to get allergy tests run 2 weeks ago that we’re still waiting on the results for. I’m not going to let my child suffer like that another 2 months if he doesn’t have to. That’s a long time for a small child to be that sick. So while it may be a “blip” to you, it’s my child and his health to me. If there’s something I can do to make him feel better, I will. The whole point of my post was to illustrate how inefficient the military health care system is.