In The Middle Of Testing

[Em314]

Could use a little support or feedback or something. Kinda in limbo at the moment.

[history]

Had symptoms which celiac could explain for *years.* Primarily (but not limited to) intense abdominal pain/GI issues and fatigue/energy issues. Talked to my doctors last year, but unfortunately I didn't talk to my PCP herself, and I ended up having my worries sort of blown off by the nurse practicioner I spoke to (we did eliminate thyroid issues, diabetes, and severe anemia as causes, at least; this year we also eliminated vit D deficiency, liver issues and gallbladder issues). Talked to my PCP *this* year (Late September) and made sure she knew just how bad the pain is and how often it happens, and she ran a couple of tests including a celiac panel, which she and I both thought was a short in the dark. She called me back early October and said it looked like celiac was a good possibility, which was initially really depressing, but have since done a bit of research (including reading through some of the stuff you guys posted here) and switched over to hopeful, because if cutting out gluten would actually get rid of the pain issues and the fatigue/energy issues, Oh My God would it be utterly worth it, and it seems like it wouldn't be nearly as restrictive as I initially feared.

[/history]

Anyway, met with GI specialist a few weeks ago who said based on test results I amost definitely do have celiac. (TTG, IGA 15 (flag reference range =<4), GLAB IGG >100 (flag range =>20), GLAB IGA 58, flag range >=20)- all with significant amounts of gluten-y bread products in my regular diet, in case anyone asks.) She reccommended endoscopy to get more data.

Had upper endoscopy today. Not a fun thing, but glad it's over and done with. She did the endoscopy herself, and said there were no obvious signs of celiac disease, but she's waiting on biopsy results, which we will discuss when we meet next week. Meantime she wants me to get the blood tests re-done in case the blood test itself was a false positive, which I will do on Saturday. She still seems convinced I probably have it and that I may be either be not be in a particularly severe phase with it, else the damage is farther down than she actually went. She's still encouraging me to stop gluten now (now that the endoscopy's done), so I can feel better asap.

I at this point am actually *hoping* it's celiac because that at least points to a solution, and a relatively simple one at that. I'm pretty dang sure the energy problems and pain I get really *aren't* normal, and I've been sort of in denial about that for a long time. If it's not celiac, that means there's some other cause, and I'm already very, very tired of doctors and tests (and taking time off of work and away from leisure time to see doctors and get tests, night I add.) So now, it'll actually be even *more* depressing if it's *not celiac.

Anyway- anyone had similar experiences? Knowledge, wisdom, hope, etc. to empart? This forum has actually already helped me tremendously, though I haven't posted yet. =)

[nvsmom]

Welcome to the forum, but sorry you have to be here.

Your blood tests look very positive. (I'm not familiar with the GLAB tests but my mind is a bit foggy with a cold tonight.) With so many positive tests, that's really indicative of celiac; I doubt you are a false positive as that's pretty rare. With a biopsy, most celiacs have said that their damage could not be seen with the naked eye so waiting for the microscopic examination is a good idea.

You might want to look into getting your calcium, B12, and ferritin levels checked. Celiacs are often low in these and that makes the fatigue worse. You might want to check your thyroid too since celiacs are more likely to develop Hashimoto's than the rest of the population; good test for that are TSH, TPO Ab, and free T4.... my energy problems did not go away with a gluten-free diet because I have hashimotos, but my GI issues are much much better.

I wish you luck starting out on the gluten-free diet. I found the first few weeks difficult because I went through a withdrawl where I was very cranky, tired, cranky, hungry, and cranky... I mentioned cranky right? LOL Hang in there. After a month the diet was already starting to seem easy. It's not that difficult to follow if you focus on preparing your own meals from simple and real foods rather than buying gluten-free substitutes.

Glutamine is helpful to some to aid in healing, and many around here swear by probiotics... I'm sure others will chime in.

Good luck and best wishes!

[1desperateladysaved]

I at this point am actually *hoping* it's celiac because that at least points to a solution, and a relatively simple one at that. I'm pretty sure the energy problems and pain I get really *aren't* normal, and I've been sort of in denial about that for a long time. If it's not celiac, that means there's some other cause, and I'm already very, very tired of doctors and tests (and taking time off of work and away from leisure time to see doctors and get tests, night I add.) So now, it'll actually be even *more* depressing if it's *not celiac.

I know this feeling. I hoped it was and hoped it wasn't. I took my genetic results to the MD hoping she would debunk them, but she backed them up. That along with my symptoms as I went gluten free firmed up the diagnosis. I know what you mean if it is not Celiac then whatever could it be? I was both relieved and disappointed in my positive results. Celiac is something that you can do something about. The unknown disease is mysterious and looming overwhich you have no control.

I hope your test results will be instructive and clear for you. It sounds like you already have a positive response to the diet and that is great!

Get well, soon,

Diana

[Em314]

The endoscopy results confirmed celiac, BTW. I'm having my doc mail out the results (I don't doubt her, I just like having that kind of info), but she said that (IIRC, and I she RC) at least 4 out of 6 biopsies confirmed it, and the blood re-test confirmed it, too. I'm having a f/u with her in three months.

She wants me to have one more endoscopy done maybe half a year out or so (she seems quite convinced that this will be a necessary thing). I'm not so sure I'm going to actually be willing to do that, but it's a long way out, so we'll see. There will have to be some obvious demonstrable benefit to having another one done, or an obvious risk to not doing one. How willing I'm going to be will depend on how I'm feeling and what my blood tests are saying- she was able to explain why I might need one done, but she definitely didn't sell me on it, lol.

I'm sold on going gluten-free, anyway. It seems doable, but it seems like the transition's going to be a pain in the butt. :/

[sa1937]

Em, my GI doc has not suggested that I have a repeat endoscopy/biopsy so I haven't had to ponder that. I do have annual blood tests, which come back negative so obviously I'm doing something right.

Going gluten-free is very doable and I agree that it's a pain in the butt...but once you get used to it, it becomes pretty easy. If you check the recipe section, you'll find that we eat very well. The only thing I really miss is the spontaneity of grabbing a fast bite to eat anywhere I choose.

[tom]

  On 11/29/2012 at 11:06 PM, Em314 said:

...at this point am actually *hoping* it's celiac because that at least points to a solution, and a relatively simple one at that.

...

And *that's* the most important thing.

It can be tough to get used to eating a new way, but wow is it ever worth it as symptoms fall away.

Congrats on your Dx & healthier rest of your life!