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Back From The Doc

wsieving

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wsieving Contributor
wsieving
Posted

Well, I think I went in expecting too much. I really wanted this doc to wow my socks off, but he really didn't. Granted, I went in with probably close to as much knowledge on the subject as he had, and I listed all of DD's issues leaving nothing out right away, so I guess it didn't leave him with much to say. The thing I am most disappointed about though is the fact that he suggested no back up plan, didn't have much to say other than she was obviously "scrawny" and under the 3rd percentile. I asked him about the full panel of 5 tests and he said that two of them were very inaccurate and so they did not need to worry about those (the anti gliadin tests). So he drew blood, and now we wait for the results. I left there with nothing more than I arrived with other than knowing she was tested. This is so frustrating. Oh, and he diagnosed her with acid reflux and gave us a prescription that my insurance doesn't cover that costs over 300 dollars per month. MIL said seek a second opinion if we do not get anywhere with him, and I think I may have to do that.

I really thought he would order a RAST test. He didn't even mention it. Her cheeks have always been rashy, and I've never read anywhere that it was a Celiac symptom, so have always wondered if there is something else she is eating that is causing that. Anyway, I will update with test results once we have them. Thanks for listening.

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mftnchn Explorer
mftnchn
Posted

How disappointing but not an uncommon experience unfortunately. Antigliadin is only inaccurate for diagnosing celiac, it still will indicate sensitivity to gluten.

Rashes definitely are a sign of celiac, there is a skin version of the disease. If she has any weeping from the rash, get her to a dermatologist who can biopsy the weeping lesion. If positive, it is a positive diagnosis for celiac with nothing further needed.

I would be VERY cautious about using the acid reflux medicine. If she is celiac she may LACK stomach acid not have too much.

I would be very unhappy with this doc and look elsewhere.

ravenwoodglass Mentor
ravenwoodglass
Posted

I agree with the previous poster but if you do take her to a derm do make sure that they biopsy beside the lesion not the lesion itself. That is where the antibodies will form. If she can tolerate it use Pepto Bismal for the stomach pain. It will not interfere with acid production. Reflux is common with folks with celiac.

wsieving Contributor
wsieving
Posted
  • Author

I really don't think her cheeks have ever wept. They are just very rosy and extremely bumpy like eczema. Some days they are really really red, other days they are just pink, but always very bumpy.

feedmykids Rookie
feedmykids
Posted

Eczema can also be caused by a food allergy. I would find a doc. who would get her tested. Our pediatric GI told us that Antigliadin IGA is more common with Celiac. Antigliadin IGG is more common with an allergy to gliadin ,a sub protein of gluten, or chrohn disease, cystic fibrosis, etc... SO while a positive Antigliadin test may not be conclusive for celiac , it does mean something is going on. Hope you find out soon!

suzyks Newbie
suzyks
Posted

I will be taking my daughter to KC next month as well, I can't say that I have high hopes though. Her Pediatric Dr has dx her with having celiac but wants her to see Pediatric GI. I really don't have a lot of faith in specialists but I trust our PCP so we will go.

Hope you find out more.

wsieving Contributor
wsieving
Posted
  • Author

suzyks, which gi is she scheduled to see? I highly recommend NOT seeing Robert Kane. He had a horrid bed side manner, and I felt like he was completely clueless. He barely said anything while we were in there, and also told us to limit her fluid intake after giving us a fact sheet on Chronic Nonspecific Diarrhea and telling us that she doesn't meet any of the symptoms of it b/c she isn't thriving but wanted to treat her for it anyway. I'm a little bugged by this guy :angry: .

There is a doc up there that specializes in celiac and malabsorbtion, I would ask for him.

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suzyks Newbie
suzyks
Posted

There was a Dr that I was told, by the lady making the appointment, had a problem relating to younger children. It made me wonder why he was working at Children's Mercy? Anyway, she will be seeing Dr. Cocjin who she said is great, since I don't know I am taking their word for it.

I just have a feeling they will take one look at her and say, There is nothing wrong with this child! She LOOKS very healthy, except for the dark circles under her eyes and strange rash on her head. She FEELS awful most of the time though. I can always fall back on her primary Dr though, I hope.

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      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
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