Is Endoscopy Necessary?

[beth01]

I was recently diagnosed with Celiac and had my children tested as a precaution, my daughter was having some troubles with constipation,fainting, and upset bellies for a while.  Her blood test came up positive and our GP said to have her go gluten free.  There isn't a pediatric GI in the town that we live in, one has to come from Mayo in Rochester.  When they called to set up the appointment, they had said they were going to do an endoscopy.  My problem is, she has been gluten free now and I don't want her to get sick having to do the gluten challenge.  I explained that to the nurse and she said if she has been gluten free to keep her that way and we can discuss it when she has her appointment on the 18th.  Is the endoscopy really necessary?  She is 11. Has anyone else gone through something similar?

[nvsmom]

For an endoscopy, the gluten challenge is shorter, 2-4 weeks, so it might be doable. If there is no doubt that she has celiac disease, then it is most likely not needed.  Some like to get it done to look for other problems, and others like to do it so they have a starting point to comapre back to if things do not improve on the gluten-free diet.  Some have it done to get the official diagnosis so accomodations can be made at school - that's the onl way it will help anything as a general rule.

[beth01]

For blood tests for celiac, both her and I have had just the tTG IgA and the IgA.  I had the endoscopy the same time as the blood tests, I was really sick.  My GP that had Lainey tested was the one that said for her to go gluten free.  Can they officially diagnose her based on my Celiac diagnosis and the fact that her tTg IgA was >100?  Is there also more blood tests we should be having for the celiac?  I know about the basic blood panel( cbc, metabolic panel, and the vitamins) but I have seen some people having other Celiac tests.

Once again I am probably asking questions that can only be answered on a person to person basis, but I see my GI tomorrow and I know she is going to draw labs to see how I have been doing and not sure if I need to be having more done.  It's probably too late with the Celiac test though since I have been gluten free ( mostly besides a few mishaps) for two months.

 

Thank you again for all your input, both here and my other posts.  It's great to have people that actually understand what you are going through

[glutenfreeliac]

Normally, I'd say if you don't need an "official" diagnosis and you or your daughter are seeing great improvement on the gluten-free diet, then skip the pain of the endoscopy. In the case of your daughter, I strongly suggest keeping her gluten free and talking to the doctor about options. Having a celiac diagnosis in hand may be helpful when it comes to school and other accommodations in the future. The doctor may have a better handle on ways to achieve your goals without putting your daughter through the pain and suffering (and recovery period) of the gluten challenge.

[nvsmom]

Some doctors like to make sure it is celiac when dealing with the tTG IgA because it has a small (about 5%) false negative rate BUT that occurs mainly in the weak positive tests, like if the upper normal limit was 4 and she scored a 5. 100 is a high result regardless of what upper normal limit was used.

There are many other blood tests you could do to celiac disease. It would be best to do them right away if she will not be doing a gluten challenge. These are the tests:

TTG IgA and tTG IgG

EMA IgA - very similar to the tTG tests best tends to be positive in more advance cases. It is 98-100% specific to celiac disease

DGP IgA and DGP IgG - great tests for detecting early celiac disease or celiac disease in kids, as well as checking dietary compliance

AGA IgA and AGA IgG - older and less reliable tests

The complimentary tests are for D, A, K, Fe, Ca, Mg, B12, Cu, zinc, ferritin - those are the most common deficiencies. It is a good idea to check thyroid function too (TSH, free T3 and free T4, TPO Ab are good tests). Diabetes and thyroiditis are the most common c-occurring autoimmune diseases that accompany celiac disease, so it is a good Idea to keep an eye open for those.

[beth01]

Went to the Ped's GI today and he isn't going to do an endoscopy.  He feels comfortable officially diagnosing her based on my diagnosis and her tTg IgA.  He did draw the DGP tests so we will wait for them.  Has her going back in six months to have her tTg IgA checked again.  He had her checked for some deficiencies and thyroid testing and liver enzymes also.  Thanks for all your input!

[BlessedMommy]

Congrats on getting the diagnosis! So glad that she doesn't have to do a gluten challenge.

 

Best wishes for good and improving health on the diet!

[nvsmom]

 Best wishes with going gluten-free.