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(This is the latest post on the blog linked from my profile. I thought the parents on here might relate.)

Last week Jupiter got glutened. I almost didn

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Firstly --- it WILL get better. The reaction to a smudge of gluten may not change, but your ability and his to navigate a gluten free life most absolutely, definitely will.

Secondly --- we've all been through detective school, trying to figure out where some gluten was picked up. I think that first 12-18 months I was the most paranoid mother on the planet. But I don't want a paranoid kid, and I don't want his life to be consumed (ha!) by food. So I gave up the paranoia (which is mom's security blanket) and farmed out a great deal of the detective work to him over time. You will feel more secure, and so will he, in time.

Thirdly ---- My son limped. He staggered. He couldn't sleep, he couldn't eat. At 4, we refused an endoscopy because it seemed too scary and invasive for him. I wondered if that would have avoided missing a year of school, a 44 day hospitalization, and all Those Bad Things That Happened. I know you carry guilt about not keeping TBTTH away from your child, but in the end, you triumphed. You kept at it. You perservered and ultimately got answers and you will keep doing that as you journey with your child, and he will learn what that looks like and be a very independant, strong, and determined person -- moreso than without the diagnosis.

Don't feel guilt. Don't feel pity. Don't look back. You'll feel sorrow and grief and anger, and let 90% of them go only when you are ready to. (I still can't see soup crackers -- a food we fed him prior to dx but when he was so sick --- without a pang) The journey is forward, and the road can be lovely. You and your child will travel together and learn so much about yourselves, and that is not a Bad Thing. We have all been there, and we are up here around the bend, enjoying the view. I am confident that you'll be here too.

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Thanks, you are sweet. I know this is a perfectly normal thing to feel, I guess that's why I posted it.

We have gotten pretty good at avoiding gluten, actually our son hasn't been glutened in something like 6 months and that's why it caught me so off guard. Mostly we are moving forward and see the silver lining, but there are these moments...

One of my biggest regrets is actually that we DON'T have a true diagnosis. After his surgery my partner researched the connection between rheumatoid problems and gluten and we took him off it. After that, we realized that we'd screwed up our chances of testing for celiac. He got glutened repeatedly when we first eliminated it and his symptoms were awful. No way could we make him do that for months, just for a blood test to tell us what we already knew. Add to this our kid was traumatized from his dr visits and the surgery and past visits to the ER for stomach problems which included IVs and blood draws, and we didn't want to put him through a blood draw if it wasn't necessary. After he improved so much from the gluten-free diet so quickly, we didn't want to put him back on it. So we got a genetic test to see if he had risk factors for celiac and he does. The dr did agree this was 99% likely to be celiac.

So we're confident it's the right thing, but we don't have an official diagnosis. This doesn't seem to bother anyone but me. I guess my main fear is that we have figured out this part of the puzzle, but there could be something else underlying that we've missed because we didn't do full testing.

The doubts I have are not so much about the gluten - we know about it and are able to deal with it, and feel so much better. The feelings that really get me the most is that I should have trusted myself but I didn't, and that caused my kid bad health. I'm afraid I will do the same denial thing about other issues, despite my best intentions.

My daughter has some issues, too, including some odd behaviour, extremely small stature, and Tourette's, but we have not figured out what's going on. The GAPS diet has helped the Tourette's a little bit and her mood a lot, but it's not a huge change. I don't know if it's a matter of just accepting who she is, or if there is something actually physically wrong. I want to accept her the way she is and not pathologize her, but that's what I did with my son's dyslexia and ADHD stuff and all that was corrected completely and quickly by our dietary changes. I feel like I must be missing something that will seem obvious someday, after the damage is done.

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DomesticActivist,

Guilt is one of those things that I wish I could get rid of, as it's unproductive but so much part of being a mom sometimes.

I certainly think that you did all that was humanly (or mom-superhumanly) possible. You said that they tested for "everything" and then in the end you and your partner made a leap of faith that has proven to be good.

I, too, knew something was wrong for years and asked the doc to test for anything and everything - RA, cancer, leukemia, diabetes, etc., but they didn't test for celiac (probably would have been seronegative anyway) and food wasn't even on my radar. And the docs didn't really take me seriously or maybe they didn't ask the right questions. I had a little boy who was always less "hardy" than I thought he should be and sick and missed school but he didn't have many overt symptoms. I too blamed him for a bad attitude at times. I will forever be grateful for my diagnosis because it opened my eyes to celiac (and casein intolerance) for him. He does not have a diagnosis (which can be a good thing or a bad thing) but is pretty good about compliance and says he's 99% sure that he has it.

Regarding your fears that there is something else...that is possible but if he's happy and thriving that's unlikely. If it is, it's not that you are missing something but that the underlying issue is still hidden. However, you're ahead of the game at this point and going back on gluten wouldn't help you find out any other answers, so you're still better off with the knowledge you've gained.

Thanks for you post. I enjoyed reading it.

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