Blood test results

[Donna2k3]

Hi! My daughters pediatrician thinks she has celiacs. These are her blood test numbers 

 

TTG 11

<4.0 U/mL (negative)
4.0-10.0  U/mL (weak positive)
>10.0 U/mL (positive)
 

EMA was positive

gliadin Iga was 43 

Gliadin igg was 40 
Negative: <20.0 U

Weak positive: 20.0-30.0 U

Positive: >30.0 U

However when we took her to the G.I Dr. ( from the best hospital in MA) she was not concerned and said to do the biopsy,but seems to think all her symptoms come for her consitpation. She also has low vitamin D, but high b12.  We go Monday for the biopsy. I am so confused her pedi says all signs point to celiacs.Any information you can share would be appreciated. 

Thanks!!

 

[squirmingitch]

Her blood panel is POSITIVE!!!! She's celiac! I don't know what in the world the GI is thinking. That's crazy! The GI obviously doesn't really know celiac. The constipation is tripping her up but celiacs can be constipated as much as they can go the other way and more than 50% of dx'd celiacs presented with NO GI issues.

Keep her eating gluten until you get the results of the endoscopic biopsies.

[Donna2k3]

Thanks for your reply. That's what my husband and I thought too. She has a ton of symptoms that's fit celiac. Also I was going to start her gluten free diet after her biopsy on Monday cause the dr said the results take two weeks. Is there a reason I should keep her eating gluten until we get the results? Thanks for your help.

[squirmingitch]

Welllllllll, in this particular case it would be best to keep her on gluten until the results come back. The reason I say this is b/c this GI seems whacky. There's a chance you may need to go to a different GI & have the endoscopy redone. I was going to say get a new GI but since the endoscopy is on Monday then I would go forth with it rather than waiting the time it would take to get a new GI & schedule an endoscopy. This GI seems set that it's not celiac & when they get that in their brain it's usually pretty darn hard for them to admit they were wrong. My concern is that she won't take enough biopsies from the right places b/c she's either dumb about how many & where or letting her personal (already formed) opinion influence what she will do. The problem is that you can't be there in the OR with them standing on the GI's shoulders making her do the right thing. Not knowing your daughters age, the other concern is that there may not be "enough" damage just yet, it may be patchy, etc..... that with the mindset this doc has, she will poo poo the dx. 

Let me say that it would be a travesty & wholly awful IF you had to put your daughter through another endoscopy but we know how very important it is for her to have an official, dyed in the wool dx. So I'm just trying to think down the line & prevent problems before they come up. I mean, this doc may not even take any biopsies. That sounds insane I realize, but really, it happens more often than you would think. I can't tell you the number of times we've had people come on here after having an endoscopy for celiac where the doc didn't take any biopsies b/c the doc is so stupid as to think they can see the damage & doesn't realize there MUST be biopsies!

If you take her off gluten & heaven forbid, you have to end up putting her back on it to get further testing then chances are she's going to get much, much sicker when she's put back on gluten. That most often happens with us and I'm talking about radically sick.

See, I'm basing all my thinking on the fact that despite ALL the positive celiac blood work, this dimwit doc doesn't think it's celiac & instead it's all related to the constipation. That is just so far out there, it's NUTS! She's flying in the face of hard evidence! Every test you listed was positive. I can't even begin to understand how this GI comes to her insane conclusion. THAT'S why I am so concerned. 

[Donna2k3]

Ahh good point! She is 13 and has been miserable for over two years. It started with chronic hives. We have been to a dermatologist, and a allergist and they brushed it off to her seasonal allergies and now she has joint pain,bloating,constipation,fatigue,headaches just all around miserable. I just want answers quick. she is getting depressed and says she hates her life cause she doesn't think anyone believes her. It's heart breaking . I hope we get answer soon. Thanks for the advice I will keep her on gluten. She is just miserable and I figured the sooner she is off gluten the sooner she will feel better. 

[squirmingitch]

I understand. Poor thing, made doubly rough because 13 is a really hard age even in the best of times.

OK, at 13 she should show the damage in the biopsies. I didn't know if she was 2 or 3 yrs. old & in those cases sometimes they just plain haven't lived long enough to be damaged where the biopsies pick it up - it can be so patchy then. 

Gosh, I'm really feeling for her & you both and I so want to say take her off gluten the moment the endoscopy is over but I'm afraid to say that b/c I've seen some pretty weird things go on that you would never expect. Docs can be so uninformed!

Please let us know how things turn out & send your daughter some hugs from me and tell her I believe her. Please let her know that most of us had been told by doctors they think it's all in our heads, didn't believe us, blew us off so we know exactly how she feels. Remind her her pedi believes her & he's been more helpful than the GI has. 

Press the GI for 6-8 biopsies but a bare minimum of 6. 

{{{{{{{{{{{{{{{{{{{{{{HUGS}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}

[Donna2k3]

Just wanted to update. On Monday my daughter was diagnosed with celiacs. Her biopsy was a mixed bag of results some came back marsh 2 and some came back marsh4!!! I was told that, that is normal for celiacs cause damage can be patchy.  I am happy that we finally have a answer of all her symptoms but sad that she has to deal with this for the rest of her life. Now just waiting on my 16 year olds panel to come back. Does anyone know his odds of having celiacs also? He has no symptoms and his father and myself came back negative. I am glad I found this board. It is very helpful!

 

 

 

 

[squirmingitch]

Thank you for letting us know. The gluten free diet is not bad once you get used to it and she will. I'm not sure of the exact odds for your son but they are increased by having a first degree relative with celiac. Remember that all first degree relatives should be tested every 2 years in the absence of symptoms and immediately if symptoms present. 

[cyclinglady]

Sorry to hear about your daughter!  My heart goes out to all of you (I have a 15 year old daughter myself who, so far, does not have celiac disease but with two parents with gluten issues, who knows?)

Review our Newbie 101 thread under "Coping" for valuable tips.  My tips?  Do not eat out for months until she has healed.  Try to eat whole foods that are not processed.  Learn all that you can about keeping her safe.  

Hugs!