How Do You Deal With The Waiting?

[Irishgirl76]

I had my gastroscopy 2 1/2 weeks ago and am STILL waiting on results! I had a slightly positive TtG, and the lab report said that it was "essentially diagnostic of Celiac Disease", but of course I have to have a biopsy to confirm diagnosis. My daughter is unquestionably Celiac (her bloodwork results were off the chart, and she had marked villous blunting). So I'm pretty sure I have it as well, and have been gluten-free since my biopsy, but it's still driving me nuts that I don't have confirmation. When people ask me why I'm not eating gluten, it's kind of a pain to say "I think I have Celiac, but I'm not sure yet!". And my boyfriend keeps joking that the doctor will tell me that I am fine and can go back to eating gluten at any time (he is kidding, of course!). I took my sister to the hospital on Monday for a colonoscopy and gastroscopy, by the same doc who did mine. She actually went in for a colonoscopy due to multiple gastrointestinal issues, and as soon as she mentioned me, and that I probably had Celiac, he opted to do a gastroscopy as well. I'm now kicking myself that I didn't just ask him for my results when I was there, but I figured I was there to support my sister, not for me... I have called his office 3 times in the past week (although it specifically states in their message not to call multiple times); the first two times they didn't have results yet, and yesterday they said that they didn't have my results in the office, but that the doctor had them at the hospital. She said that if it was anything significant, he would have called me. (So, does that mean the result was negative, since I didn't hear from him?) I've called my family doctor, and the receptionist said that the results were in, but that she couldn't interpret them, and she would have to wait for the doctor (who wasn't in yesterday). Aargh. Anyway, I'm venting here to keep myself from calling again and making a nuisance of myself! I can cope with it either way (positive or negative), but the not knowing is seriously making me nuts.

[Cara in Boston]

From what I understand, if you had a positive Ttg, then, at the very least, you are gluten intolerant and should be gluten free. It does not matter what the biopsy says.

After my son was diagnosed and I realized that I had all the classic symptoms, I was tested too. My blood came back positive (TTG IgA and Gliadin IgA) and I was told that I had it too. My doctor scheduled an endoscopy for me just so they could have a "starting point" to measure my healing. My scope came back perfectly normal. My MD said no celiac, but instead "gluten intolerant." My son's MD (who is a celiac specialist) said that was just silly. I have it, as proven by my blood test and my positive response to the gluten free diet. She said that maybe the damage wasn't severe enough, maybe they didn't take samples from the right places, etc. etc. She said continuing to eat gluten until there is actual damage is just not smart.

It really doesn't matter as the treatment is the same. Gluten free for life.

With your family history, and your positive blood test, it really doesn't matter what they find on the biopsy.

Also, you don't need an "excuse" to eat gluten free. If you feel healthier eating that way, it is really up to you. It will be easier on your daughter to have you gluten-free too, so she doesn't have to do it alone.

Cara

[Irishgirl76]

Thanks Cara,

Yes, I will be gluten-free either way (our home is already gluten-free), but it's still driving me batty to not have a firm diagnosis. I went to see my GP for a separate matter this past Friday, and she asked if I'd heard from the Gastroenterologist yet. I said that I hadn't, so she had a quick look at the results she had received, and said that it only showed "inflammation", and she wasn't sure what that meant. She was going to send him a note to get more information. It has been almost 3 weeks since my endoscopy. Just frustrating to have a procedure done, and then to be unable to find out what the results are! I've tried calling the GI's office several more times but they never answer the phone. Hopefully I'll hear something this week.

[kareng]

Thanks Cara,

Yes, I will be gluten-free either way (our home is already gluten-free), but it's still driving me batty to not have a firm diagnosis. I went to see my GP for a separate matter this past Friday, and she asked if I'd heard from the Gastroenterologist yet. I said that I hadn't, so she had a quick look at the results she had received, and said that it only showed "inflammation", and she wasn't sure what that meant. She was going to send him a note to get more information. It has been almost 3 weeks since my endoscopy. Just frustrating to have a procedure done, and then to be unable to find out what the results are! I've tried calling the GI's office several more times but they never answer the phone. Hopefully I'll hear something this week.

If this were me, I would go to the GI office and ask for a copy of my results (procedure report and pathology report). I would tell them that my doctor asked me to get them & bring them with me. You tried to call but no one answers. You would be happy to come back in 2 hours to pick them up.

If you feel like that's a lie, you could tell them you need them for your records but they are more likely to stall on that one. You could say Dr. Karen Gee asked you to get them (I'm not a doctor but I would be happy to play one on TV).

[Bubba's Mom]

If it were me..I'd get a copy of the test results. I called for the results after my last scope and blood work and the nurse told me HER opinion of what it meant. It was wrong! I'm glad I double checked.

[Irishgirl76]

Good idea - if I don't hear from them on Monday I will go down there and ask for them.

[squirmingitch]

I would GO there on Monday & GET them. The hippa laws state YOU have a right to your medical records & they can not keep them from you. You do not have to give them any reason for wanting your own records & they have no right to ask your reasons nor to determine if your reasons are good enough for them. They are YOUR records. You will likely have to sign a release form requesting the records & authorizing them to release them to you but that is all. And I would not give them any more time to get them together. I'm sorry but I am adamant in these respects & I don't take any crap off anyone. 3 WEEKS for heavens sake! I would raise Cain in that office if they tried to put me off. When that kind of thing happens I talk LOUD --- loud enough that all the waiting patients can hear what's going on & wonder themselves what kind of Dr. they are about to see when you can't get your results for 3 freaking weeks!

I am not a rabble rouser. I am a very gentle, patient person but I will not tip toe around & be pushed around in circumstances like this. Stand up on your two hind legs & hold your head up & BE. Walk with confidence. Be nice but firm & if they start giving you excuses & more delaying tactics then get tough. No one is going to do it for you. The law is in your favor. Remember that.

[kareng]

She can give the poor girl who is making $8 an hour a little time to get the papers together. The reports are probably in the docs inbox on his desk or where ever they keep stuff that the doc hasn't " read." there is no need to be rude with the receptionist or the record clerk.

Yes, in the US, you have a right to a copy of your medical records. They have a right to some time to get them together and copied and they have a right to charge you $15 plus $1 a page for copies not going directly to another health care provider. They have a right to call the police to have a loud & belligerent person taken off the premises. They have a right to denote this erratic and mentally unstable behavior in your record.

Unfortunately, if Squiming is doing this often, her children will have some of the evidence they need to have her committed if they wish.

[Irishgirl76]

Well, after getting ready to pack the kids up and head to the GI's office, they called me. lol. She said he finally responded to her email (that she sent him a week ago!), and all it said was that my biopsy showed "mild changes that could be consistent with Celiac". She said that was all the email said, and asked if he had said anything to me when he spoke to me after the procedure. After the procedure, he did tell me that he could see some cracks in the intestinal wall that could be indicative of Celiac. (he also found an ulcer, and a polyp, which he removed). He also said that with that, my positive bloodwork, and the fact that my daughter has Celiac, that I was at the very least gluten intolerant and should avoid gluten. The report sent to my family doctor just showed inflammation. She asked if I wanted to just go with that, or if I wanted to speak to him myself. I said I would still like to speak with him, and she said he has a cancellation at 8:30 tomorrow morning... so hopefully he will give me some definitive answers. I will be sure and ask for a copy of my report.

Thanks for your support guys!

[squirmingitch]

Karen, please quote to me where I said she should be rude.

In fact, I stated she should be nice but firm.

Perhaps you took issue with the fact that I had a different opinion than yours.

"They have a right to denote this erratic and mentally unstable behavior in your record.

Unfortunately, if Squiming is doing this often, her children will have some of the evidence they need to have her committed if they wish. https://www.celiac.com/uploads/emoticons/default_ohmy.png' alt=':o'> "

At any rate, it was rude & hurtful of you to make the statements you made regarding my mental stability & the need to have me committed. Unless you were being deliberately cruel?

[kareng]

Karen, please quote to me where I said she should be rude.

In fact, I stated she should be nice but firm.

Perhaps you took issue with the fact that I had a different opinion than yours.

"They have a right to denote this erratic and mentally unstable behavior in your record.

Unfortunately, if Squiming is doing this often, her children will have some of the evidence they need to have her committed if they wish. https://www.celiac.com/uploads/emoticons/default_ohmy.png' alt=':o'> "

At any rate, it was rude & hurtful of you to make the statements you made regarding my mental stability & the need to have me committed. Unless you were being deliberately cruel?

No. I didn't mean to be cruel. I'm sorry that wasn't inteneded. I just meant that "raising Cain" with the poor clerk that has to make the copies only causes more trouble. Being "loud enough" that all the waiting patients hear could be seen as yelling.

[squirmingitch]

Irishgirl, I am so very glad to hear that you will finally be getting the answers you need! Congratulations!

[Irishgirl76]

Well, looks like I am an official member of the Celiac club. Damage to the villi was mild (a 1 on the Marsh scale), but with my positive TtG, symptoms, and family history, he said it was safe to assume I was Celiac. Either the damage was not very severe yet, or the several months I spent "gluten-free" (I didn't worry about cross-contam or hidden gluten, just avoided obvious gluten) prior to testing allowed my intestines to heal that much. If that's the case, I'm lucky they caught it at all. If I knew then what I know now, I would never have given up gluten without testing first. I just thought it might make me feel better, and didn't know anything about Celiac. Now whenever I hear of someone wanting to try gluten-free, I always suggest they test first! My boyfriend wants to do a gluten-free trial and I encouraged him to get a Celiac panel first. Not that I think he has it, but at least he will know before giving up gluten. If it's negative but he feels better without it, great! If he notices no difference he can go back to gluten land. But I think it's better to know what you're dealing with.

Anyway... glad to finally have answers and start focussing on recovery. Went grocery shopping today and only bought real food... no "gluten-free" stuff until I'm feeling better.

[Bubba's Mom]

Well, looks like I am an official member of the Celiac club. Damage to the villi was mild (a 1 on the Marsh scale), but with my positive TtG, symptoms, and family history, he said it was safe to assume I was Celiac. Either the damage was not very severe yet, or the several months I spent "gluten-free" (I didn't worry about cross-contam or hidden gluten, just avoided obvious gluten) prior to testing allowed my intestines to heal that much. If that's the case, I'm lucky they caught it at all. If I knew then what I know now, I would never have given up gluten without testing first. I just thought it might make me feel better, and didn't know anything about Celiac. Now whenever I hear of someone wanting to try gluten-free, I always suggest they test first! My boyfriend wants to do a gluten-free trial and I encouraged him to get a Celiac panel first. Not that I think he has it, but at least he will know before giving up gluten. If it's negative but he feels better without it, great! If he notices no difference he can go back to gluten land. But I think it's better to know what you're dealing with.

Anyway... glad to finally have answers and start focussing on recovery. Went grocery shopping today and only bought real food... no "gluten-free" stuff until I'm feeling better.

I'm glad you got the answers you needed to go forward into your healthy new life. Thank goodness your damage wasn't too much..just enough to get a firm DX.

I'm almost positive my hubby has Celiac. He has lots of the symptoms, along with hasimoto's, and a family history of many immune disease. He had a brother with type 1 diabetes. He refuses to be tested!

I think it's great your BF is open to the possibility.

[Irishgirl76]

I'm glad you got the answers you needed to go forward into your healthy new life. Thank goodness your damage wasn't too much..just enough to get a firm DX.

I'm almost positive my hubby has Celiac. He has lots of the symptoms, along with hasimoto's, and a family history of many immune disease. He had a brother with type 1 diabetes. He refuses to be tested!

I think it's great your BF is open to the possibility.

He does complain a lot of gastrointestinal issues, and seems to have trouble with his bones breaking (he broke one arm while arm wrestling, and then a year later broke the other one playing football!), plus numerous other fractures in the past. Lots of dental issues (soft enamel). Even if not Celiac, I think he will benefit from giving up gluten. Yeah, I think it's great he's willing to do testing, and willing to try a gluten-free diet. It was kind of funny actually, he kept implying that I was going to "make" him go gluten-free. I kept saying that no, I wasn't... my home is gluten-free but he is free to do whatever he wants outside of that. After making the same implication a few times, he finally gave up and told me he'd like to try it for a month and see if it makes him feel better. lol. I suggested if he wanted to try gluten-free that it would be wise to rule out Celiac first. He already had a bloodwork requisition from his doctor, so took it back to the office and asked them to add a Celiac panel. The receptionist tried to talk him out of it, saying that they couldn't order one unless he saw a GI first. He argued with her, and said no, that's not how it's done... he texted me and asked me what tests he should have, I told him, and the receptionist called the lab to verify, then went ahead and added them to his requisition. He's going tomorrow for the bloodwork.

[squirmingitch]

Welcome to the celiac club ~~~ officially! It took a while but you got the answer. Good for you! Now you don't have any doubts AND you can tell people you have that piece of paper that proves you're celiac.

Woo Hoo for your boyfriend!

Sounds like you've got it all together now. Happy eating!

[Bubba's Mom]

Your BF seems to have a lot of the Celiac symptoms? If he goes gluten-free it will be a lot easier for both of you.

I SO wish my family was on board with going gluten-free.

Isn't it funny how he sort of wanted you to "make" him go gluten-free? It works best when the gluten-free eater is doing the diet because they know they should..or have to for health reasons.