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Wondering About My Two Oldest
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Hi I'm fairly new here. Been reading a lot. I've decided that I'm going to get myself tested for celiac due to symptoms I've been having and my past medical history.

 

But now I'm wondering if I should go ahead and get my two oldest children tested too (I have 3 total).

My son has autism. In the past when he was about 6 (he's 10 now) we saw a DAN dr and he performed extensive allergy tests and said that he was allergic to like 50 foods. We avoided those foods as best we could for a few months which was SO difficult. Then I decided to get a second opinion on his allergies. I took the test results to another allergist who said there was no evidence of an allergy. So we let him eat a regular diet.As soon as we did that his teacher said she noticed and that his behavior was better while he was on the diet avoiding those foods. We dismissed what she said. I regret that now.  Well, his weight has ballooned since then. Don't get me wrong, he's probably 5'4" and is wearing a men's size 32/30 in jeans. He's big for a 10 year old. He's always been taller, but now I feel he's overweight. He's constantly hungry and sneaking into the snack cabinet always going for the carbs and foods with gluten. His favorite is saltine crackers. He'll eat an entire sleeve at a time. The other night we had pasta and before I knew it he'd had four bowls! He's on Intuniv and Sertraline for anxiety and to help with concentration at school, but is still failing a couple of subjects and is forgetful and irritable. At times he complains of headaches and stomach aches. He is very inactive and falls asleep in class at times and is hard to wake in the morning.

 

My daughter is 8. She is very moody and irritable. Just asking her to take a shower or clear her dishes will elicit an argument. She has gained a lot of weight too. She has a pretty big belly that sticks out. She is also forgetful and very unorganized. However, she has no problems in school and does very well. She does spend a long time in the bathroom every morning having bowel movements though. When she was younger we noticed that any time she got ranch dressing on any part of her skin it would turn bright red. So we took her to the DAN dr around the same time we took my son. Her test results showed that she was allergic to several foods too but we never really got on a special diet for her. Then after taking my son for the second opinion we just gave up. I feel pretty bad about that now. 

She has also just recently stopped wearing pull ups at night. She still has accidents at night and sometimes during the day I've noticed that her pants will be wet. Like she's leaked some urine or something. She is on oxybutnin for what her PCP believes is overactive bladder. 

 

They are both due for routine check ups so I was thinking of making appt for all three of us with our PCP and talking with him about our symptoms and asking for a test for celiac. We will most likely be doing a gluten free trial regardless of the test results. Is it worth the trouble of going in for an appointment for a diagnosis if we're going gluten free anyway? Part of me would almost rather see the doctor first just to discuss it with him and get his backing on the gluten free diet even if we don't get the testing. That way when my family complains about the difficulty of their diet I at least have my doctor's backing to explain it. 

What do you all think?

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the medical prof., except for the DAN doc, has failed your family!  Hopefully you are a stay at home mom, because detoxing that 10 year old is not likely to be quick or easy.  You probably will have to wean him, not go cold turkey.  then it will require a gluten free home.  you will need the dx to get the school on board.  good luck

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I suggest you get everyone tested before going gluten-free. If your pcp refuses, insist. If that fails there are online labs you can order the labs from (you go to a local lab for the draw).

You will need school support for the gluten-free diet there. Usually, that's a doctor's note.

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Unfortunately I'm not a stay at home mom. I work full time. My husband and I are talking about me staying home though because the cost of daycare/babysitting for 4 kids is so high.

I have an appt with our pcp on Friday afternoon. I've been making a list of symptoms for all three of us. I hope we get some answers.

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Insist on testing-- for all. It is so freeing to just KNOW.

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    • Thanks for posting.  I know it is difficult to talk about these sorts of things even on a webforum.  It is good thing for people to be aware though about celiac disease and that it can cause mental problems.  Gluten can cause brain damage and it can cause anxiety. If the brain does heal it may take a long time. I know that gluten can cause anxiety and obsessive thoughts.  My experience has been similar to your experience. When I first quit eating gluten I had a similar constant loop and strong negative feelings. There are lots of people on this forum who get anxiety when they eat gluten. Some people also experience gluten withdrawl where they experience anxiety after giving up gluten. It can take a long time for the body to heal and for obsessive thoughts to go away.
       It is normal for people to socialize with each other and to be comfortable about it. You said you have problems still socializing and being around people. It might be a depressing thought but it sounds to me like you still have problems with anxiety.  I would recommend considering what options you have available to treat the anxiety. When I quit eating Gluten I still had some symptoms, even though I felt much better. I have been slowly recovering over a period of about three years. I had obsessive thoughts even after I quit eating gluten.  Now I very rarely if at all think about those things. My experience is that my mind would latch on to certain things that caused me anxiety and focus on those things. Sometimes my focus would shift and I would latch onto other things. My ability to socialize has also improved greatly with time. I have made some dietary changes which I believe have helped greatly. It sounds to me like you have obsessive thoughts about things and maybe some brain damage. My experience has been that my obsessive thoughts about different things went away with time. I feel my obsessive thoughts were caused by gluten and not by what people did around me or any events. As my brain healed I became more self aware and things became less stressful.  I can't give medical advice on this forum but I can talk about my current diet and my experience with celiac disease. My experience with gluten is different from a lot of other people so it is a good idea to ask other people and to talk to a doctor.  I avoid oats and avoid almost all processed foods. I buy certified gluten free food. I eat healthy and I exercise every day. I take st John's Wort as I have read studies that say it may be as effective as some other anti-depressants for treating certain types of anxiety. It is available over the counter. I started with a small dosage and then stepped it up over time. I think it helps a lot.  This is also something that you should talk to a doctor about first. https://www.researchgate.net/profile/Martin_Mahoney2/publication/7426926_St._John's_wort/links/540d8acc0cf2f2b29a386673.pdf A lot of people with celiac disease have vitamin deficiencies.  Vitamin b deficiency can cause anxiety. Some people do not process the synthetic form of vitamin b (from normal pills)  very well, and do better on an activated form of vitamin b. I take:
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