I need your opinions please

[momtojess]

Jess had bloodwork done in Dec and it came back positive. It was the tTg Aga. Her # came back greater then 100.. i asked what it was specifically and the endo didnt know, just said that alot of labs stop measuring at 100 since it is so far over positive.

We go to the GI dr in march. From all I have read I am betting they will want to do an endoscpoy to offical diagnose her.

My question is, other then to offically get a diagnosis, is there any other reason to have them do the endoscopy? I would think do another blood test, if it comes back outragous, then we go GF. I am freaking out about having about having her put to sleep.

[aklap]

Hi Tammy,

Ultimately, the call is yours. You can choose to have the EGD or not.

Will the doctor give her an offical dx with just positive blood work? Some docs will, some docs won't.

Is the positive blood work enough of an indicator for you to keep Jess on a GF diet for life?
Will you or Jess have doubts if you don't get an offical dx?

These are questions only you and her can answer. Everyone deals with this lifestyle differently. Some people need that "piece of paper" [aka official dx] telling them that they need to be GF for life. Others, have it in them to stay GF just because they know they feel better.

Are there benefits to having an EDG? They can see if there's anything else going on. If she's having gastro issues, it might be a benefit.

As far as sedation - you might check with the gastro in how they handle kids. For adults, they don't put you completely out. It's called "conscious sedation". You are awake, but you are so far out of it, you don't care. Plus they give you meds that make you forget what has taken place. Kids, they may put out completely.

[MamaC]

Tammy,

When Jenn had her endoscopy 16 years ago, it was outpatient and she was home, playing and hungry within hours. It was the first time I saw her put under. It was disturbing for me, but a breeze for her. (Unfortunately, each subsequent experience with anesthesia has been progressively more alarming - she fights it and has a heck of a time coming out of it.)

Jenn is the type of person who someday will need to SEE that official diagnosis. Seeing that paper made my husband accept her diagnosis. Many others go GF with just the positive blood work.

If you feel you will go through with the endoscopy (and it would be my advice to do so) you must keep her on gluten to ensure the accuracy of the endoscopy results. It may be the hardest thing you've ever had to do, knowing that the GF diet will help her start healing.

One of the reasons I advise the endoscopy is that someday, down the line, you may need to be able to prove it - to Jess, to insurance, to the taxman if you end up claiming celiac expenses...

You are in my thoughts.

Becky

[hrermgr]

I know what you're going through! We were given the choice to do the endoscopy right away or wait for a couple months then do another blood test since T didn't have any symptoms. We were told that the only way to absolutely diagnosis Celiac was with the endoscopy. We just went with the endoscopy right away so that if positive, we could make changes immediately or if negative, know that she didn't have it.

Well, she was positive so we made changes to her diet right away. I'm glad we found out sooner rather than later.

Good luck. There is no easy answer....

[momtojess]

Thanks for you help...

I will talk to the GI and see what he suggests. If she had any stomach issues then I would probably been leaning more towards doing it to rule out other things, but she doesnt have any.

We are letting her eat as we always have till we find out we need to go GF. Its almost a blessing to have these few months to get prepared and educated on GF frees before we have to go that route.

[BrendaK]

Westinsmom hasn't posted on this yet, but her son did not have any symptoms of celiac when he went for the biopsy after having positive bloodwork. His biopsy came back positive for celiac. So, if she does have positive bloodwork, I would really encourage a biopsy to see if there is damage. I personally had a biopsy done a few years ago and it was super super easy, and a very quick recovery time. In fact, DH brought my kids to the hospital, took them to breakfast in the cafeteria and we all went home together -- it was a breeze.

[momtojess]

Westinsmom hasn't posted on this yet, but her son did not have any symptoms of celiac when he went for the biopsy after having positive bloodwork. His biopsy came back positive for celiac. So, if she does have positive bloodwork, I would really encourage a biopsy to see if there is damage. I personally had a biopsy done a few years ago and it was super super easy, and a very quick recovery time. In fact, DH brought my kids to the hospital, took them to breakfast in the cafeteria and we all went home together -- it was a breeze.

I talked to Michelle about it, so thats probably why she hasnt posted. lol After all the posts on her saying it isnt so bad, I am not as opposed to it.. still not 100% convinced but feel better about it.

[WestinsMom]

Okay, Michelle will post! :) If it were me, I would want to know for sure. I am not opposed to not having the endoscopy. I just know that I would hate not being 100% sure. It is a different lifestyle to embrace and I don't know if I would sign up completely without knowing for sure.

Now, let me say that without BrendaK's pushing, I wouldn't have persued it. We had positive antibodies for years. We saw a gastro at first and he said not to worry about it at that time. In retrospect, his numbers probably just weren't high enough to warrant the endoscopy. So a few years later, after getting to be quite close with BrendaK, she convinced me to get him tested farther. I feel good knowing that we made the right decision to find out for sure. I know we are doing all we can to keep his as healthy as possible. With no symptoms it was easy ignore.

Talk to your gastro...who knows what they will say. You have lots of time to think about it. You aren't in a hurry to go gluten free due to symptoms, so you are in a great position.

[Ellen]

My child does NOT have celiac and I have no personal experience other than reading abstracts. I just wanted to share this recent one I read...

Aliment Pharmacol Ther. (javascript:AL_get(this, 'jour', 'Aliment Pharmacol Ther.');) 2008 Jan 11 [Epub ahead of print]http://www.ncbi.nlm.nih.gov/corehtml/query/egifs/http:--www.blackwell-synergy.com-templates-jsp-_synergy-images-synergy_linkout.gif (http://www.ncbi.nlm.nih.gov/entrez/utils/fref.fcgi?PrId=3046&itool=AbstractPlus-def&uid=18194500&db=pubmed&url=http://www.blackwell-synergy.com/openurl?genre=article&sid=nlm:pubmed&issn=0269-2813&date=2008&volume=&issue=&spage=) Links (javascript:PopUpMenu2_Set(Menu18194500);)
Coeliac disease: a biopsy is not always necessary for diagnosis.

Hill PG (http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=Search&Term=%22Hill%20PG%22%5BAuthor%5D&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_RVAbstractPlusDrugs1), Holmes GK (http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=Search&Term=%22Holmes%20GK%22%5BAuthor%5D&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_RVAbstractPlusDrugs1).
Departments of Chemical Pathology and Gastroenterology, Derbyshire Royal Infirmary, London Road, Derby, DE1 2QY. United Kingdom.
Background: In view of the high diagnostic accuracy of IgA-tissue transglutaminase antibodies (TGA) for detecting coeliac disease (CD), we have explored whether a small bowel biopsy is always required to establish the diagnosis. Aim: To define the TGA level giving a positive predictive value (PPV) for CD of 100% and subsequently assess the proportion of new diagnoses of CD having such a result. Methods: The Celikey kit was used to measure TGA. Results: All patients with TGA levels >30 units/mL i.e. 10 x upper limit of normal (ULN) in 2002/2003 had characteristic small bowel mucosal lesions. In a subsequent audit 58% of 112 new diagnoses of CD in 2004/2005 had levels above this cut-off. Conclusions: We have shown that a TGA level can be defined which gives a PPV of 100% for CD. From published data these observations can be extended to most second generation TGA kits. Our data provide further evidence that diagnostic guidelines could be modified so that small bowel biopsy is no longer regarded as mandatory in patients with such high TGA levels. This will avoid an invasive procedure and lead to more rapid diagnosis and earlier treatment for over half of new patients with CD.
PMID: 18194500 [PubMed - as supplied by publisher]

[WestinsMom]

Wow, Ellen, thanks for sharing...I know Tammy will be happy to read this and take to her gastro. :)

[Ellen]

There still remains the question was the UK study done in order to avoid the extra cost of biopsy?

[WestinsMom]

Oh, yeah, the dreaded financial motivation... :(

[lodiej]

Our daughters GI said that the lab results are 95% accurate. However going GF is a huge lifchange and the only way to know for sure is to have the EGD done. He left the decision comepletly up to us. She only had 1 mild symptom but her labs were extremely high. In the end we went with the test and are awaiting results. The test went very well and our daughter who is 4 was a complete trooper!
Good luck with your decision.

[momtojess]

Thanks guys.. I have tried to put it in the back of my mind for last month.. We go the GI dr in 2 weeks.

I plan to tell him my fears and see where it goes from there.

That study is interesting, but then the financial point is too. Obviously with her labs being so high, if we decide not to do the endoscopy, we will do GF.. we wont just ignore it and keep life the same.

[josmom]

I realize you have gotten a lot of input on this matter. Josie just got diagnosed with Celiac a couple of weeks ago. They did the blood work in December and it way way high so we did order the biopsy to find out what's going on. They took several biopsies from her esophusgus, stomach and small intestine. The biopsy results made it a black and white issue. We will meet with the nuitrionist next week to go over how to be gluten free. I really wanted to go with the don't ask don't tell theory as the diabetes control has been such a struggle. The reality is that wasn't an option. Josie is ten and handled the endoscopy just fine. She was very anxious prior to it but once we got to the hospital she stepped up to the plate. Had a small problem with her sugars she went high before the procedure even with fasting and they gave her glucose in the IV. The end result of that was our first keytone experience. It did resolve itself within 24 hours thank goodness. So, just make sure your sleep doctor is familiar with type 1 needs. I am sure my experience is unique. Please keep using the forum to gather knowledge as well strength. We will get pass this maybe just one day at a time.