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Is This Unreasonable?

Tasha2004

By Tasha2004
in Doctors

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Tasha2004 Contributor
Tasha2004
Posted

My Mom (80) has been showing signs of accidentally ingesting or coming in contact with wheat/gluten.

The primary care doc didnt believe me when I said they could do a Gliadin IgA or IgG to test for this.

Mom informed me today, she had a round of (refrectory?) sprue several years ago, and needed steroids to clear it up.

I sent the primary care a nice kind letter (even though I am angry) and some articles from here. Also another letter from the Celiac association saying they even run this test on Celiacs at their conventions, so asking for one is no big deal.

The primary sent my Mom to a gastro. Every gastro around here is booked until Fall.

I asked the gastros office, who has a referral and knows my Mom is truly Celiac, to please have the gastro call the primary doctor and discuss running the blood test. They wont do it, they wont even ask her. "your mom is a new patient and we cant do anything unless the primary asks us." I informed them, the primary doesnt get it, and they rudely told me to take my Mom to the ER. Yes, the ER wants us there on a non-emergency when the local ER's cannot handle patients right now.

I am so ticked.

I am a diabetic, with other conditions. I am a huge advocate for my own health and belong to a goodly few support groups. Even my doctors will run a ttg or IgA on me because I showed an elevated IgA and nothing else. They know I know what I am talking about.

I believe these doctors often refuse to talk on the level with the patients (or in my case, the patient's caregiver.) I feel for you all if you have trouble getting help. I really do.

I dont think I was at all out of line asking the Gastro's office to help me out. You know the Gastro would instantly understand the situation, but obviously they cannot be bothered until October.

sheesh.

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penguin Community Regular
penguin
Posted

How obnoxious! And who told her she had a "round" of refractory sprue? It was my understanding is that refractory was like, forever. You have to be on steroids forever, right?

Quack. Is there any way to get her to another doctor, perhaps yours?

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Tasha2004 Contributor
Tasha2004
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Posted

Chelsea: OOps, sorry I spelled refractory sprue wrong.

No, about 17 years ago my Mom had a round of what I called refractory sprue. I found an aricle on this web site on it, and they said they often had to comb through the patient's diet and often ended up putting on a short round of steroids. That is what happened to my Mom then, and that may be what happened this time.

Mom said it took her a long time to get over it, and she was pretty darn sick. She isnt that ill this time, but it would be nice to have the blood test so we can see if something has crept in again.

You all have such a huge list of things to watch out for, and an 80 yr old can easily (as can anyone) make a mistake and get hidden additives or gluten.

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tiredofdoctors Enthusiast
tiredofdoctors
Posted

I think that really stinks. I have just had the same type of experience with the neurosurgeon. What a pain in the neck.

I can't believe that you have to wait three months for your mother to see the GI doc. That is not acceptable. Ask to get on a cancellation list . . . then call every day to see if there are any cancellations that day. You'd be surprised when you become a thorn in their hiney how fast your mother gets in . . . . . it works pretty well. Some offices just don't care, but some just want you to stop calling!

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Tasha2004 Contributor
Tasha2004
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Posted

Lynne: My Mom had the blood draw for the test or tests yesterday. I wasnt able to go with her, so I dont know which ones they ordered, I think probably IgA.

I must have convinced the doctor when I sent her four pages of documents.

Mom is feeling much much better, so it may have been some incident of eating something that wasnt right.

Thanks for writing!

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  • 2 weeks later...
tiredofdoctors Enthusiast
tiredofdoctors
Posted

Tasha - I am so glad. It is SO frustrating when you can't get past the front desk, then when you DO, you have difficulty with the doctor listening to you with more than half an ear. Please keep me informed about your mom's condition . . . . I'd like to know about her test results, if that's not intrusive.

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Tasha2004 Contributor
Tasha2004
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Posted
Tasha - I am so glad. It is SO frustrating when you can't get past the front desk, then when you DO, you have difficulty with the doctor listening to you with more than half an ear. Please keep me informed about your mom's condition . . . . I'd like to know about her test results, if that's not intrusive.

She just got the results. They did either an IgA or IgG, I dont know which and Mom couldnt find her paper. It was negative. I hope that doesnt make the doctor feel like she ordered the test for no reason. I hope she knows now what to do for the next person.

Mom is doing much better, but feels she truly did eat something wrong somewhere along the line. Thanks for asking!

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tiredofdoctors Enthusiast
tiredofdoctors
Posted

I'm glad your mom is Okay, but wouldn't it be nice to have some answers? Don't want to say, "Sorry your mom isn't sick", but I was hopeful that the doctor would have delved into this with a little more zeal. Good luck to you . . . and take care of you . . . . Lynne

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Tasha2004 Contributor
Tasha2004
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Posted

OH, she does have that visit with her new gastro, in October. So she will get further help, and maybe they can discuss it together.

It could be the gluten was totally out of her system before the blood test too.

I'm teaching a class to my fibromyalgia support group this week on being proactive and self management.

Hee hee, got some practice in already.

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tiredofdoctors Enthusiast
tiredofdoctors
Posted

That was funny!!!!! Good luck . . . . I'd still pester the heck out of the GI doc's office! Sometimes, it's just a matter of principal. :lol:

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ravenwoodglass Mentor
ravenwoodglass
Posted
She just got the results. They did either an IgA or IgG, I dont know which and Mom couldnt find her paper. It was negative. I hope that doesnt make the doctor feel like she ordered the test for no reason. I hope she knows now what to do for the next person.

Mom is doing much better, but feels she truly did eat something wrong somewhere along the line. Thanks for asking!

Please make sure she trys the diet anyway. I was tested and relying on blood work cost me many years of misery because of false negative results.

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Tasha2004 Contributor
Tasha2004
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Posted

Mom's been on the Celiac diet for over 20 years! But thanks.

Yes, it is scary. Before she was diagnosed she went down to about 65 pounds.

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