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Amanda1978

Diagnosing An 8 Year Old

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Hi all, I'm sure this has been asked before but I'm going to ask anyhow. (I will continue to search and read through the forums later when kids are napping or in bed tonight.) Also, I have been researching gluten/celiac problems for a long time, but didn't have the forethought to write down names of tests as I went along.

On to the point of my post, I'd like to know which tests I should get for my 8 year old daughter to test for celiac disease or a gluten intolerance. (Specific lists or links to these lists that I can print and bring to the doctors with me would really be appreciated. Or even other links/info I should bring along.) Or anyone know of a good doctor I should see in the Ottawa, ON area? (I've asked for referrals to doctors of my choice in the past and my family doctor has been more than happy to do so. I also don't mind driving a hour or more if needed for a really good doctor.)

She has had numerous health problems for several years.

- Constipation (started before she was a year old, she was formula fed, solids introduced around 4-5 months???, I really can't remember if she had constipation while only on formula or if it was after introducing solids) Wasn't severe when youger but the last few years she has had some really bad bouts where I'd have to bring her into the ER or see our family doctor daily to monitor it. Doctors said that the meds for her acid reflux were probably the cause of her constipation getting worse. When it's bad she'll sometimes miss several days of school. It also seems that when she gets constipated it will re-occur several times (ex. every 1 1/2 or 2 weeks for 2 months or more, and then normal for several months after that.)

- Several UTI's (presumed to be caused by the constipation, she had several x-rays and other tests to rule out bladder/kidney problems)

- Lots of passing gas, as child she thinks it's funny but as she matures I'm sure she won't be so pleased

- Keratosis pilaris on her arms, I don't remember when it started but she's had it for at least 3 years, was told nothing could be done for it except a cream that may or may not help if itching got really bad

- Inverse psoriasis on her bottom for the last 2 1/2 years? At first it would come and go, but eventually it was there all the time to the point of being raw and bleeding. It wasn't immediately diagnosed and the dermatologist only said she thinks that's what it is. (If this gluten/celiac doesn't resolve the issue I'm switching dermatologist because I just don't like her and she doesn't seem to want to find out why her skin is reacting. When I mentioned avoiding gluten and asked if I should try avoiding anything else she gave me the she should eat lots of fruits, veggies, and lots of "healthy" whole grains such as brown bread speech. Haha, apparently brown bread is acceptable when avoiding gluten?!?!? So, she hasn't been very helpful.)

- Acid reflux. She was always complaining of an upset stomach since she was old enough to talk. (She's a whiner though, so even a hang nail is a big deal. On the bright side I always know all her symptoms. lol ) I always believed she truly did have an upset stomach. I finally found a doctor who listened when she was 4 years old. (Most doctors dismiss little tummy upsets in young children. Grrr....) He did a bunch of tests (celiac blood markers, diabetes, lactose, etc.) All were negative so after several months of trying to find the root of the problem he tried her on zantac. It helped most of the time but eventually she had to start taking nexium. This also helped most of the time, but not always. I've kept him as our family doctor. He tries to find the root of problems before throwing meds at symptoms, but I know like every human and doctor he may be missing stuff, so I still research myself. He does listen when I talk to him, sometimes he agrees sometimes he disagrees but he always listens and will do tests or referrals that I ask for. (Which is why I'm asking for help before going in about this.)

- The only thing found in all the blood tests was that her iron was a very tiny bit low. Not enough for meds or continued monitoring.

- When she eats too much "junk" food at parties, family gatherings, etc. she throws up. Sometimes several times throughout the night and has an upset stomach. She learned around 4/5 years old to limit how much she'd eat because she didn't want an upset stomach. (Thank goodness she is a kid who listens to reasoning.)

- She has mild asthma, seasonal and animal allergies.

- She has always been emotional. She's very shy, will cry easily when overwhelmed or upset, etc. At one time about 3 years ago she was taking Reactine for her allergies and seemed to be getting depressed. (Would cry for no reason, tell us she was sad but didn't know why...) As soon as we stopped the Reactine the symptoms of depression went away within weeks. Now she takes singulair during severe allergy season and aerius in between.

I think that's all for now, if I think of anything else later I'll update it.

Everything has been treated individually, but I've always believed they were all connected. When she was around 4 years old she had a blood panel for celiac done. I think the doctor only did a "basic" test to see if we should test further. (I really can't recall exact test or tests done.) It was negative so they dropped the whole idea of celiac/gluten-intolerance. As mentioned before, he also tested for dairy/lactose, diabetes and other things he thought may be the root of the upset stomach. Since then the other problems have crept up one by one, or become more severe.

In late spring I decided to eliminate foods in her diet to see if it would help. Based on her symptoms, and the fact that I really think wheat is not healthy for anybody (my personal opinion, not my husbands so it's been a continuing battle about what our 3 kids can eat) I decided to eliminate gluten first. I planned on starting as soon as school was done for the summer so I could watch everything she ate. At the end of the school year she was going through a bout of repeated constipation again. (In fact she missed the last 3 days of school.) I stopped all meds (nexium, dermatop, hydrocortisone) and gluten the last week of June. Her psoriasis, acid reflux and gas greatly improved within the first week. (I did use coconut oil on her bottom.) She did get badly constipated about 5 days into it but I would say it was a residual effect of her constipation "cycle". By the end of the second week she had no complaints of upset stomach and her bottom was so clear that if I were to look at it for the first time I would never have known that two weeks before it was raw and bleeding or that she even had a skin problem.

After the first two weeks my husband agreed we should try it longer. Near the end of July my daughter looked at me while rubbing her arms and said in a surprised voice "The bumps are almost all gone. My skin is just nice and soft!"

So, to summarize, she hasn't been constipated since the beginning, her skin cleared (arms and butt), her acid reflux is almost completely gone (she has said about 10 times over the summer that it tastes like vomit when she burps, but she'd say it in passing and not as a complaint that her stomach hurt), allergies hasn't been as bad but still there, and gas is now at a "normal" amount. I can't say whether any of her emotional issues have changed since she has been at home for the summer so no "stress" of school and being too shy to talk to the teachers or talk in front of the class. (Likely just her personality anyhow.)

I believe she is gluten-intolerant or has celiac (or maybe food allergy?). My husband is still a bit skeptical but can't deny the changes he's seen in her and agrees it has been relieved from going gluten-free. He wanted to try re-introducing gluten to see how it went. I agreed to do one meal or snack a day for a week. (Started 3 weeks ago.) During that week her bottom got itchy and she had a bit of stinging when she peed at the end of the week. No complaints of tummy upsets or bad taste when burping but she had more gas again. At the end of the week she went gluten-free again. Her psoriasis on her bottom has been getting worse, and last night was to the point of bleeding again. I started her back on dermatop last night and coconut oil in between. (Hopefully it clears quickly.) I think it's a "delayed" or ongoing reaction to the gluten, my husband isn't so sure but still agrees gluten-free has helped and does not want her acid reflux and constipation to return.

So, with my husband not being completely sure about it all, and my daughter wanting to have gluten "sometimes" I'd like to get a diagnosis from our doctor. This is why I'd like to know all the tests (skin, blood, biopsies, etc.) that are available, and what should I request. I don't mind paying for anything not covered under our health care system or our extended insurance, I would just like a straight-forward answer so I can tell them this is the way it is, this is what you need to avoid. KWIM? Also, I know some of the tests require her to have eaten gluten foods before hand or they'll be negative no matter what. How long before the tests (and what tests? all?) should I have her eat gluten and how much should she eat?

Sorry it got so long, but I guess it'll work kind of like a log for me to refer back to later, and I also wanted to get the whole story out for the best opionions from everybody.

Thanks for reading and any input you may have!!!

Amanda

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