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MycasMommy

Am I Forgetting Anything?

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Taking the teen to the doctor tomorrow to request a celiac panel.  We've never seen this doctor before and we have also just moved here from another state so it is a first visit too.

 

I will request these:

-tTG IgA and tTG IgG
-DGP IgA and DGP IgG
-EMA IgA
-total serum IgA and IgG
-AGA IGA and AGA IgG

 

AND allergy testing.

 

Symptoms:

Keratosis Piloris

Chronic sleepiness

Aching joints and growing pains (she is almost 18 now!)

asthma

ezcema

allergies (sneezing 20+times a day, eyes watery)

Sunken dark circled eyes

Occasional rashes that the dermatologist could not identify but will blister, pop, and bleed

and of course, her mom (me) having all of this at her age (except the horrible rashes) and now look at me *sighs*

 

 

I have been making sure she has gluten every single day for the past two months. Have I forgotten anything, or is there anything more I should ask?  I want all my ducks in a row.  I am not ready nor willing to be flung around from place to place with no answers.

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I think that is it.

My guess is that the KP is hormone related. It happened to me on my arms for one summer. Doctor had prescribed testosterone in addition to the estrogen and progestrone and KP was the result. Arms became nice and smooth a few months after I stopped the testosterone. I thought my sleeveless days were over!


Non-functioning Gall bladder Removal Surgery 2005

Diagnosed via Blood Test and Endoscopy: March 2013

Hashimoto's Thyroiditis -- Stable 2014

Anemia -- Resolved

Fractures (vertebrae): June 2013

Osteopenia/osteoporosis -- June 2013

Allergies and Food Intolerances

Diabetes -- January 2014

Celiac.com - Celiac Disease Board Moderator

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I have had KP all of my life and she has since she was hmm 1-2 years old.. so .. I dont know...  I know my mother had it too. I think it may just be genetic. But it is there, so I guess I should mention it>?

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Yeah definitely let them know about the family history, that will give them reason to do testing if they are on the fence about something.


I am my husband's "Silly Yak Girl" :)

I was diagnosed with Celiac Disease in January 2013. I also have Lupus and Common Variable Immunodeficiency(CVID) for which I am on IVIG.

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I also would ask for the typical bloodwork CBC, Iron, Vit B 12 ,Vit D, calcium , comp metabolic,

CRP...that way all your bridges are covered.....

 

 

Good idea!

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I don't like having blood drawn as I'm hard to get so I take the better route & get twelve tubes done all at once.....I just thought you mentioned being tired or sleepy , I think I would check the thyroid panel , TSh, T-3, T-4, Free T-3, Free T-4, Total T-3 reverse T-3..is she anemic? That may be another check...

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The doctor was great.  Ordered everything we asked for and sent a referral for the allergy testing too.  She did not know a LOT about Celiacs so she asked a lot of questions that I was able to answer and she spent a whole 1/2 hour with us discussing it and I was very pleased.  I let her know that sometimes the blood test is negative and she said OK then to be sure IF the allergy stuff doesnt have an answer she will have the biopsies done too as well as retesting.  The only blood test the computer/lab system would not accept is the older version one. She ordered the rest of the full work up for vitamins too AND she ordered the thyroid stuff Mamaw! I did not even ask for that.  So her results will be available on her online account record in 2-3 business days. We can see them of course, and if there is anything to look into more or positive results we will get a call for another appointment.  The allergist office will call us within the week too.

 

I am just impressed that she openly admitted she did not know a lot about Celiac and asked questions about many aspects of it. Pretty cool.

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It sounds like you found a new great doctor, which is a real find these days...sounds like she is willing to listen & understanding....you may want to list the doctor name as this doctor maybe be helpful to others who live in your area....

Hang onto this one!!!!

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That is awesome, great that you found a good doctor!  I love the doctors that have online medical records, it is so great.  Some of the tests may take longer than 2-3 days though, lab time can be long with specialty tests.  Will be interesting to see what they say.


I am my husband's "Silly Yak Girl" :)

I was diagnosed with Celiac Disease in January 2013. I also have Lupus and Common Variable Immunodeficiency(CVID) for which I am on IVIG.

Celiac.com - Celiac Disease Board Moderator

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WOw, Got the results back about 2 hours ago. That was REALLY fast.

 

CRP, High Sensitivity 0.0 - 10.0 mg/L

1.0

Vit D (25_Hydroxy) Total 20.1 - 50.0 ng/mL 14.6 Transferrin 192 - 382 mg/dL 177 Iron, SRM 31 - 171 mcg/dL 31 Anti Endomysial, IgA NRN

Negative

Immunoglobulin A 65 - 420 mg/dL 68 Anti tTransglutaminase, IgA 0 - 13 U <13 Anti Deaminated Gliadin, IgG 0 - 13 U <13

 

 

and there is nothing back yet for her thyroid tests?  I guess..  I think we can party and she is celiac free?  I think?  I think??? :D  :D  :D  :D  :D  The doctor wrote that her iron and Vit D are low and to get supplements so I will just share mine :D    the first numbers are the standard range and the last numbers were her results on each line. ( I am a lazy copy/paster)

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Did they run any IgG based tests, like DGP IgG and tTG IgG?  I was wondering because her Immunoglobulin A (total serum IgA) is at the bottom of normal, 4 points away from being considered deficient, and low IgA can affect IgA based tests (DGP igA and tTG IGA).  Getting the IgG based tests would be a good idea.  

 

Finding out what the actual test results are would be helpful too.  Was the tTG IgA a 1 or maybe a 12.99?  That <13 could mean a few things, and if it was a 12.9, with an almost deficient IgA, I would consider that it could possibly be celiac disease.  KWIM?  If her IgA was just a tiny bit lower, her tTG IgA and DGP IgA would be considered invalid because of the high risk of false negative results.

 

I feel like a cloud of doom.   :unsure: But I wouldn't party quite yet.  It looks pretty good but the low normal IgA could be a factor to consider.... Plus IgA is low in about 5% of all celiacs whereas in the regular population it is low in only 1 in 700.  Having a low IgA is suspicious in and of itself, and she is pretty close to low.... You might even want to get that retested.

 

I'm not a doctor though, and tend to view things from my own experiences and from what I have seen around here.  I could be waaay off on this.

 

Good luck with the thyroid test.   :)


Nicole 

"Acceptance is the key to happiness."

ITP - 1993

Celiac - June, 2012

Hypothyroid - August, 2012

CANADIAN

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Agreeing with Nicole. That IgA is so close to deficient. And with the D and iron being low too it makes me wonder. The IgG tests would be good to have done. It will be very interesting to see her thyroid stuff. From what I've read, low D and iron are fairly common in Hashis. I'm low in both and I have it. Let us know!


January 2014-Celiac

August 2014- Hashimoto's

"You never know how strong you are, until being strong is your only choice."

Bob Marley

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AH this is depressing to think about.  Hmm.. The DGPs were not available on the automated system that gets sent to the lab across the hall. She has an appointment with the allergist to see if that could be the issue too.  I do not know if severe allergies could do that to her with the Iron and Vit D ... I do not know anything.  Its quite frustrating.  Why cant there just be some sort of answer?  The only answer _I_ have is that wheat barley and rye making me insanely ill... and that all the other grains except rice make me almost as sick too. I really do not want her to have to go through years of not knowing or never knowing. I know she does not care so much right now. Someday, she will.  Still no word back on the thyroid tests. I really am hoping that is it all just due to an allergy.

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