Never had a biopsy - now being questioned about diagnosis

[GFAnnie]

I need some advice, please! I had a blood test done for Celiac about 4 years ago and my doctor told me I tested positive for Celiac. I also had my three year old tested and he too had positive results. (I also have a niece who was diagnosed the same way prior to my getting tested). Long story short, I accepted these results and my son and I have been living a gluten-free life ever since. Fast forward to now, and my sister and niece have come to the conclusion with the help of a doctor my niece now sees, that she probably doesn't really have celiac, she's just gluten sensitive. This is not based on any particular medical tests. I guess the doctor did look at her old results and this is just "what she thinks." So now I'm being kind of attacked by my sister because she's convinced my son and I don't really have it either and we should just "lighten up." (we're not terribly symptomatic) I realize now it was a huge mistake to not have the biopsy done, but my doctor at the time did not see the need, and my sister (who is now telling me I don't have it) also never bothered with the biopsy for my niece.

So I guess my question is, now what? Have I been foolish to assume my son and I have celiac for the past four years and lived a gluten free life based on positive blood test results? Should I insist on a biopsy now? I have hit the point where gluten does cause me intestinal problems so I dread the idea of eating gluten for six weeks.

[squirmingitch]

First off, did the same doc dx you, your son & your niece? Was this a traditional doc?

You need to get copies of your records, copies of the blood work he based his dx on. Always, always, always get your lab records & keep copies. Call, email or write or stop by his office & request copies of the records. When you get them , if you post them here (along with their reference ranges) we can help interpret them and tell you if the correct tests were done.

Secondly, did you actually turn down the endoscopy at that time? Did the doc say he would refer you to a GI for an endoscopy?

Third, if your sister & niece think that being "just gluten sensitive" means that one doesn't have to worry about being pristinely gluten free they are wrong. Celiac or gluten intolerant, still need to avoid gluten like the plague. There is currently no test for non celiac gluten intolerance but the research is still ongoing as to what the long term effects are & we can't say definitively. At this point, many of the world celiac experts think non celiac gluten intolerance is the precursor to full blown celiac. 

A gluten challenge period for an endoscopy is 2 weeks of eating gluten every day whereas the serum (blood) panel is 12 weeks length. 

Finally, if you feel you need to eat gluten free then stand up to your sister & tell her to butt out & you will eat how you think you should eat. 

[Silly65]

OK Annie,  I had a biopsy after 4 or 5 yrs. of begging my Dr. for the biopsy.  He thought just by looking at me that I did not have a gluten problem.  Well he was wrong.  I have Celiac Sprue ( I think I spelled that right) which the  biopsy help discover.  You have to do what is right for you and yours.   I want to warn you if you have not eaten gluten in a while you are going to feel terrible if you start,  but you will find out that you are at least intolerant or not.  If you keep eating gluten and you are intolerant it  could get worse.   I don't think grains are good for anyone really.

[GFAnnie]

Thank you so much for your replies. No, the doctors for all three of us were different doctors. My niece had a regular family practitioner, but my son and I see naturopathic physicians  - though the tests were the traditional blood serum tests that are recommended, no crystals!  From what I can remember about the endoscopy discussion, I think it was basically "So is that it? Should I get any other tests?" and my naturopath said something to the extend of "You could get a biopsy, but it's basically a sure thing, I don't think it's really necessary." At the time I had a newborn with health issues and my life was pretty much spiraling out of control so I decided the blood test was good enough. I do have copies of the results somewhere and I need to go locate them. Like I said, life was out of control at that time, so I maybe foolishly took their word for it and the results just got stashed somewhere! I will see if I can find them tomorrow and post, because I really would love to have some input. But I'm happy to know the gluten challenge only needs to be two weeks. That sounds a lot more manageable. Also, that's a good point about whether I'm celiac or gluten sensitive, I would still need to be off gluten entirely, so does it really even matter? I know for my sister and niece, this is very much a conscious choice to find any excuse they can to avoid having to keep my niece 100% gluten free anymore. And sure, I'd love to think we wouldn't have to be, but either way, it seems like we need to be anyway because clearly something is going on in our blood to show there is some kind of problem?

[GFAnnie]

I've got my son's results! I discovered that I posted about them once before, a long time ago, and didn't really get much response. (I still need to find my own.)

Tissue Transglutaminase AB, IGA  25H  (less than 4 means no antibody detected)

Gliadin (Deamidated) AB (IGA) 6   (less than 20 antibody not detected)

Gliadin (Deamidated) AB (IGG) 18  (less than 20 antibody not detected)

Thoughts? 

[squirmingitch]

So yes, your son is positive. I completely understand about life getting out of control (more often than not unfortunately). 

Yes, it's totally up to you if you wanted to go through with an endoscopy or not. As to your son, my only thought there is school, after that college & keeping him safe by being able to prove he has a valid dx. Now, you could also contact that doc & ask him for a written dx for your son & bypass the endoscopy for him by doing that.

In your original post in this thread it did sound like your sister & niece are looking for an excuse, any excuse to claim she doesn't have to be gluten free. That's too bad. Your sister is only hurting her daughter. It also seems like they are using you & your son for their own validation. If they can get you to go along with their head in the sand program then they will feel better about continuing to deny reality. They want you to be complicit in their denial. 

You said:

And sure, I'd love to think we wouldn't have to be, but either way, it seems like we need to be anyway because clearly something is going on in our blood to show there is some kind of problem?

Yep. Your son has positives. If yours are too then yes for both of you.

[GFAnnie]

Thank you so very much! Sometimes I feel like I'm only now getting my feet back on the ground after 5 years of craziness and this celiac thing just kind of got tossed onto the pile of craziness. My sister and niece had been my celiac ambassadors when we first got our diagnosis, sending recipes, advice, and gluten free care packages - but in the past year or so they've done a complete 180, and the rest of my extended family are all too happy to jump on her bandwagon. So here I am questioning everything because we never did do the biopsy. I will contact my doctor and have her send my results again but I think I recall them being very close to my sons, though maybe slightly lower. 

[squirmingitch]

Aw, you're welcome hon. It sounds like you've had a time of it for a while. You don't need anyone coming along & upsetting the apple cart just now. I don't think I will ever truly understand why so many people are so against having to be gluten free. They act like it's a death sentence or something. Okay, so it's not fun & it does change your life in certain ways & it does make social situations harder but it's NOT the end of the world! It's ONLY food! We don't have to go through chemo or radiation, we don't have to stick ourselves with an insulin filled needle every day, we don't have to take pills every day. I just don't get why people rail against it so. You can still eat. You just can't eat gluten. So what's the big deal? Deal with it I say! Buck up & quit whining - you're not going to die. (I'm venting, not yelling at YOU Annie) I just do not understand people!

I guess the extended family wants to bury their heads in the sand too. It is genetic. One day one or more of them are likely to have some real effects. You can lead a horse to water.......