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Wondering About My Two Oldest


brandyburl

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brandyburl Apprentice

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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frieze Community Regular

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

1

pricklypear1971 Community Regular

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.

brandyburl Apprentice

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.

Mom-of-Two Contributor

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

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    • catnapt
      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
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