Please Give Opinion On How To Proceed With Positive Ttg

[michelepta]

Yesterday I found out that my that I tested positive for tissue transglutaminase AB, IGA.  The lab only said 4+ H with the reference range of <4 U/mL.  I asked if the 4 meant my level was 4, and the Doctor told me that it could be higher, but now the lab just puts 4+ because anything higher needs checked out.  Because my husband has Celiacs I told her I was just going to join his gluten free band wagon and not get anymore tests.  She was perfectly fine with the decision and says she recommends gluten free diets to ibs patients all the time and sometimes it works.  

 

I have Hoshimotos and now I read that it could possibly raise these antibodies.  I originally only got the antibodies checked because I seem to always have a vitamin deficiency-D, B12, Magnesium, K.  My stomach is fine, but I know that this doesn't mean much.

 

Should I just go gluten free or get more tests?  What is the benefit of the biopsy?  My husband went gluten-free without one so I don't really know what the benefit is.

 

Anyone know the statistic for kids of two parents with Celiacs?  I was looking around and didn't see anything.

 

THanks for any suggestions.

 

 

[cyclinglady]

Are we related or what? I have Hashi's, celiac disease and my only symptom at the time of my diagnosis was anemia -- no tummy issues. My husband has been gluten free for 13 years but no formal diagnosis (he went gluten free per the poor advice of my allergist and his GP). Autoimmune disorders run rampant in both our families.

I had the intestinal biopsy because I could not believe that both us would need to be gluten free! I had gone to a GI for a routine colonoscopy, so two scopes was no bother! I am glad of the formal diagnosis. I had a Marsh Stage IIIB damage (moderate to severe) and I am glad that I have this on record for future scopes if needed. Nice to know that SIBO and cancer was not detected. Makes it easy for my kid to get tested every couple of years. So far, she is clear. I am encouraging the rest my extended family to get tested even when symptom free!

Since my diagnosis, I have fractured two vertabrae. Again, because of my celiac disease dx, getting bone scans approved by insurance is a snap!

Keep eating gluten if you decide to do the biopsy.

Welcome to the club!

[michelepta]

Thanks for the advice.  My side is horrible with autoimmune issues.  I have four siblings and all five of us have at least four autoimmune conditions.  All of us have hoshimotos.  (I only had three till yesterday.)  One of the reasons I decided to get tested is because two of my sisters who are in their mid fifties (I am 47) were diagnosed last month with osteopinia.  Since my husband is gluten-free it threw up a red flag to me that maybe we had this without the gi symptoms.  

 

Maybe I'll fork over the money for the biopsy.  Our wonderful insurance will make me pay $900 so it's kind of a bite.  I suppose I could look at it like a cancer check.  I think I "see blood" in my stool so I can go ahead and get my age 50 colonoscopy at the same time.  

 

Thanks for the reply

[squirmingitch]

Plus with a formal dx, it will make it easier to get your kids tested. Also, I might mention that your siblings & parents should be tested. If any of your sibs or parents balk and many do b/c they can't imagine life w/o gluten; then you having a formal dx might be the difference in them getting tested. 

Are you sure your insurance will not pay for it? If the doc orders it they should cover it especially since current protocols for celiac say an endoscopy is de rigueur along with the positive blood for a proper dx.

[RMJ]

If you go gluten free and the TTG goes down to a normal level, that would be evidence that the high level was due to the gluten. Unfortunately, if it is still 4+ you won't know anything - it could have come down but since they don't give a quantitative result you wouldn't know.

[michelepta]

The insurance will help pay, but that's the deductible.  Already called all the siblings (parents passed long ago) and they are all going to get checked.  All of them are in the medical field and are very realistic about needing to get checked out.  

 

Thank you all for the advice.

[LauraTX]

....Maybe I'll fork over the money for the biopsy.  Our wonderful insurance will make me pay $900 so it's kind of a bite.  I suppose I could look at it like a cancer check.  I think I "see blood" in my stool so I can go ahead and get my age 50 colonoscopy at the same time.  .....

 

If you look at the big picture, 900 dollars is a small price to pay for something that can potentially save your life.  If it is something that is possible to scrounge up, do it.  Healthcare is one area you don't want to go cheap with.  Also, if the whole procedure is going to fall within your deductible, some medical offices and hospitals will negotiate on medical bills.  900 is a little small for that, but it doesn't hurt to ask.  It can range from payment plans to taking some off ie, paying 850 now and just calling it even.  

 

University of Chicago Celiac Disease Center gives a Open Original Shared Link of Celiac disease in someone who has a first degree relative with it.  However, if you both passed the gene onto a child, the chance is going to be higher. The first step for the kids is to get the genetic test done to see if they have had the Celiac gene passed on, and then annual antibody screening for the ones who have a gene for it.  With it seemingly so prevalent in the family, I would ask their doctor to do a full genetic and antibody screening so you can get it done with one blood draw to see where everyone is.

[nvsmom]

The tTG IgA has a specificity for celiac disease of around 95%, which means that only 5% of the positive are caused by diabetes, thyroiditis, crohn's colitis, liver disease, or a serious infection.  When something other than celiac disease is the cause, it tends to be a low positive (like a 5 rather than a 10 or 20).  It's unfortunate that your lab wasn't a bit more specific. 

See pages 7-12 of this report for more info: Open Original Shared Link

 

If you want to skip the endoscopy, you could always request more labs. The EMA IgA is similar to the tTG IgA but tends to detect more advanced celiac disease; it is very specific to celiac disease so a positive almost always means celiac disease.  The DGP igA and DGP IgG could also give you a positive result.  The tTG IgG might also be helpful.

 

The endoscopy can miss as many as 20% of celiacs so ensure the doctors take at least 6 samples (if you choose to have it done) so there is a reduced risk of the damage being missed.

 

Chances are that your positive is celiac disease though.  If you choose to go gluten-free now (because all testing is done to your satisfaction) then welcome to the club.    I hope you feel better on the diet.  Welcome to the board.

[michelepta]

Thank you everyone.  I think I'll start with more labs.  My husband had genetic testing done and was homozygous for 2 and 8 so our kids have at least one set.  My daughter has had a full panel done twice due to anemia and is negative.  She refuses to do an endoscope and since she is 18 it's super hard to force her. I'm going to henpeck her when she comes home over the summer. I got the at home test they do in Canada for ttg IGA for my son three years ago to make sure his migraines weren't gluten related and he tested negative.  But I know all this could change-that's why every other year I ask for my son to have a thyroid check.  With both parents and his sibling it seems prudent.