Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Back From The Doc

wsieving

Recommended Posts

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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,540
    • Most Online (within 30 mins)
      7,748
    Barrie S
    Newest Member
    Barrie S
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • knitty kitty
      Unusual bright yellow but odourless discharge

      By knitty kitty · Posted

      Yes, I, too, have osteoporosis from years of malabsorption, too.  Thiamine and magnesium are what keep the calcium in place in the bones.  If one is low in magnesium, boron, selenium, zinc, copper, and other trace minerals, ones bone heath can suffer.  We need more than just calcium and Vitamin D for strong bones.  Riboflavin B 2, Folate B 9 and Pyridoxine B 6 also contribute to bone formation and strength.   Have you had your thyroid checked?  The thyroid is important to bone health as well.  The thyroid uses lots of thiamine, so a poorly functioning thyroid will affect bone heath.  
    • Celiac50
      Unusual bright yellow but odourless discharge

      By Celiac50 · Posted

      That sounds so very likely in my case! I will absolutely ask my doctor on my next bone check coming up in March... Thanks a lot! 
    • trents
      Unusual bright yellow but odourless discharge

      By trents · Posted

      Calcium levels as measured in the blood can be quite deceiving as the body will rob calcium from the bones to meet demands for it by other bodily functions. Also, supplementing with calcium can be counterproductive as it tends to raise gut pH and decrease absorption. More often than not, the problem is poor absorption to begin with rather than deficiency of intake amounts in the diet. Calcium needs an acidic environment to be absorbed. This is why so many people on PPIs develop osteoporosis. The PPIs raise gut pH. And some people have high gut PH for other reasons. Low pH equates to a more acidic environment whereas high pH equates to a more basic (less acidic) environment.
    • Celiac50
      Unusual bright yellow but odourless discharge

      By Celiac50 · Posted

      Kind thanks for all this valuable information! Since my Folate was/is low and also my Calcium, there IS a chance I am low in B vitamins... My doctor only measured the first two, oh and Zinc as I has twisted her arm and guess what, that was mega low too. So who knows, until I get myself tested properly, what else I am deficient in... I did a hair mineral test recently and it said to avoid All sources of Calcium. But this is confusing for me as my Ca is so low and I have osteoporosis because of this. It is my Adjusted Ca that is on the higher side and shouldn't be. So am not sure why the mineral test showed high Ca (well, it was medium in the test but relative to my lowish Magnesium, also via hair sample, it was high I was told). But anyway, thanks again for the VitB download, I will look into this most certainly!
    • ElisaAllergiesgluten
      Allergy medication: cetirizine by the HealthA2Z is it gluten free?

      By ElisaAllergiesgluten · Posted

      Hello good afternoon, I was wondering if anyone has ever brought their anti-allergy pills? I have been wanting to use their Cetirizine HCI 10mg. They are called HealthA2Z and distributed by Allegiant Health.I’m also Asthmatic and these allergies are terrible for me but I also want to be sure they don’t have any sort of gluten compound.    I have tried calling them but to no avail. Has anyone ever used them? If so, did you had any problems or no problems at all?    thank you
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.