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Anyone's Doc Accept Enterolab Results?

Alexolua

By Alexolua
in Doctors

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Alexolua Explorer
Alexolua
Posted

So saw my doctor today, follow up to having biopsies done. They were fine, so I don't have any problems with gluten he says! Hmm.. showed him my Enterolab results, but he didn't really accept them. Said I wouldn't have symptons with my biopsies being fine, etc.

I do have to give him credit though, he was polite and nice about it. Drew more blood and was supportive of me going gluten free anyway. Have had doctors in the past who were <insert bad words here>. So that was a nice change.

My question, has anyone shown their doctor Enterolab results and had the doctor be more favorable towards them, despite lack of bloodwork or biopsies saying anything?

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Guest jhmom
Guest jhmom
Posted

Yes I showed my GI doctor my enterolab results and he accepted them, I think being on the gluten-free diet and improving on it had A LOT to do with it tho. He just reassured me that he ran all the same test too just blood and not stool and he also told me that it takes time for a disease to show up in the blood and that doctors were leaning more and more about Celiac.

In my opinion it doesn't matter if the doctors accept the dx or not, it is our decision to remain on the gluten-free diet! :D

Alexolua Explorer
Alexolua
Posted
  • Author

True, doesn't matter if a doctor accepts it.. but I was just hoping he would, because it would have been nice after having doctors telling me the wrong things, or telling me nothing was wrong, to have one tell me what was wrong, eventhough I do believe I know it. If that makes sense, lol.

Set up an appointment to see him again in 2 month, so hopefully then I can get him to say that it was Celiac, since I'll be telling him I'll be feeling better, fingers crossed. =)

Guest jhmom
Guest jhmom
Posted

I agree, it gives us valadation and lets these doctors know we are not crazy and not making these things up, that we are truly sick!!!!

Just make sure you explain to him how you feel now that you are on the gluten-free diet, if you feel 100% better tell him that....etc and maybe he will be more out to accept it, I'm not sure, just a thought!

Good luck to you!

Alexolua Explorer
Alexolua
Posted
  • Author

Well now that I'm gluten free, all I feel is missing gluten foods! LOL

But I'm on day 2 now, so the feeling better part I figure will come with time. =)

  • 4 weeks later...
snoopini Newbie
snoopini
Posted

My doc looked at me like I was nuts when I showed him the Enterolab results. Although he said it did explain a lot since he and the Univerisity of Philadelphia couldnt figure out what was wrong with me. My insurance didn't accept it either. And since he first thought I had lymphomas in my intestines you think he would have taken more than ONE biopsy....go figure!!

celiac3270 Collaborator
celiac3270
Posted
Well now that I'm gluten free, all I feel is missing gluten foods! LOL

But I'm on day 2 now, so the feeling better part I figure will come with time. =)

Trust me...that'll go...I felt the same way in the beginning -- that if I could, I'd go eat a big pizza or something...now, even if I was allowed to, you couldn't pay me to.......well, maybe pay me, but I wouldn't go do it on my own :) ...it makes me feel sick just to think about it -- yuck....after this, you'll never look at gluten the same way, and I doubt you'd want to back and eat it, especially if you were a symptomatic celiac.

-celiac3270

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Alexolua Explorer
Alexolua
Posted
  • Author

Quite symptomatic, LOL.

Up to 25 days now. Don't think I really crave gluten anymore, but just anything in general, that is like junk food! Trouble finding good junk foods so far, besides candy, hehe.

Still a bit annoying though when everyone here gets pizza, and I come across the left over. At first I wanted it.. now I want someone just to eat it and get rid of it! I wouldn't eat it though, do want to feel better. =)

Also had one long headache after I went gluten-free, lol.. that's gone too.

  • 2 weeks later...
chasefamily Rookie
chasefamily
Posted

Hello. pretty new here I got my biopsy results and they told me everything was fine but I have had no blood work at all. I want to know what is Enterolab? I really still believe that I have celiac and the Gi doctor thought so also, until the biopsy results I have appointment with him in two weeks.

Alexolua Explorer
Alexolua
Posted
  • Author

You can find enterolab here:

Open Original Shared Link

You should beable to get the info you need there. I don't think I'd do them justice, if I tried to explain everything (reasoning behind their testing, etc). Though will say, they are a lab that others here have used too, that said they had Celiac Disease, while their biopsies showed as normal.

Most of their tests I believe are from testing stool. They send you something in the mail, you give the sample, and send it back to them.

If you do believe you have it, I'd say check them out. =)

Nin Newbie
Nin
Posted

I was on my third doctor (a Naturopath) and by that point showed her various labs that had gone out of the normal range (Liver/Platelet/thyroid) and showed her celiac articles that confirmed that this happens with celiac and goes to normal once the body is recovering, plus I showed her the enterolab tests. I think she was a bit uncertain at first, but after a few visits and various discussions of my two year experience she began putting the diagnosis as celiac. I feel grateful to have found her as she is very thorough and patient with the various things that keep popping up and so far we are making progress on getting things fixed.

Good luck, hopefully the medical establishment will soon catch up with Dr. Fine at Enterolab. There was a great 3 day conference at NIH in Washington, and I got to go to day 3, and I think they have come a long way in understanding today's celiac patient and how differently celiac is now presented. It is a challenge for doctors to recognizel.

walnut Newbie
walnut
Posted

Hi, I am new to the board and also new to the gluten free lifestyle. I have been on a gluten-free diet for almost 3 weeks now. My mother is celiac and I have symptoms that are very typical of celiac disease or gluten sensitivity so I feel confident that is what I have. However, I have been seeing a GI who has done a colonoscopy, an EGD, a biopsy of the small intestine, which was negative and he is now testing blood for the three "things" (I forget exactly what they are called). I think the blood tests are going to come back negative as well since I am on a gluten free diet. I still think I am gluten sensitive even if not celiac as per those gold standard tests. I searched on the net and found the Enterolab to be very interesting. Reading Dr. Fine's essay made so much sense to me - I have now ordered the gluten sensitivity test from his lab - I am waiting to receive the test kit in the mail, so this is all very new. Meanwhile I still have my main symptom which is diarrhea - it is very, very frustrating. I cross my fingers and wish that it will go away sooner or later. I think I feel better on the gluten-free diet - very difficult to figure out how to cut gluten completely out of the diet and perhaps that is why I haven't yet seen more improvement in my condition. I find it a challenge to figure out how to handle my "new" situation - it is all made so much more difficult by the fact that the doctors don't understand that you can be sick even if not celiac as per their definition. I don't really want to be gluten sensitive, I would much rather be healthy and "normal" like I used to think I was, but I have to say that I almost hope the test results from Enterolab show that I am gluten sensitive, at least that way I know what is wrong and I will know what to do to become healthy again. At this point I am not going to go back on a regular diet unless someone can prove to me that I am not gluten sensitive. I actually feel better than before - yesterday, even though I experienced several episodes of diarrhea throughout the day, I had this clear energy from the moment I got up in the morning and it just stayed with me all day. I don't remember when I last had that sense of feeling energetic and clear. Even the bloating seemed way down and I certainly didn't pass gas like before - these small signs, I choose to take as signs that the gluten-free diet does me good. After all, it probably took a long time for me to become as sick as I am so I will have to be patient with my body when it comes to the time it takes to heal. I love to be healthy and all I want right now is to become healthy - it means everything to me.

I cried the first time I read messages on this board from other people who suffer like I do - it was such a relief to know that I am not alone in this. All the fears I have and the loss of control of your lifestyle. The sense that your condition is getting worse every day without you knowing where to turn for help. This message board and the existance of Enterolab give me hope.

I would love to hear from others - your story, your worries, your way of handling your situation. Thank you.

Walnut

Alexolua Explorer
Alexolua
Posted
  • Author
I have to say that I almost hope the test results from Enterolab show that I am gluten sensitive

I was feeling exactly the same way!

The blood test might show something, mine showed I might have Celiac Disease, but since everything else said no, my doctor thinks I don't. Though Enterolab says yes, and I'm banking on them.

If yer having trouble cutting out Gluten, well go to a diet of just fruits, veggies, and meat (not processed). Then work on finding products that are gluten free. Lots of foods can be cross contaminated, even at home. So getting new things for cooking can be helpful there as well.

I could go into more detail if you'd like, unless you've read stuff about that already?

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