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I Suppose I Don't Have Celiac Disease
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My primary doctor just called and said she "thinks" my biopsies came back okay. Alerted me that I was anemic, which we realized last year. I have not heard from the GI doctor. The conversation was weird. She asked me if I had seen the GI yet. If you are asking me that, then how would you think my biopsies came back okay?

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Sometimes labs, xrays, and pathology reports will be sent to the doctor that did them & the regular doctor. So in this case, they sent the pathology reports (biopsy reports) to the GI who did them and your regular doctor. Get a copy. Your regular doctor may not understand the results and would prefer the "expert" :blink: GI tell you about them.

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I just don't think she even has the results yet. Why ask if I have even seen the GI if you have my results back?

Nobody wants an autoimmune disease, but a medical explanation as to why I was so sick since February would be nice.

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I just don't think she even has the results yet. Why ask if I have even seen the GI if you have my results back?

Nobody wants an autoimmune disease, but a medical explanation as to why I was so sick since February would be nice.

Let me try again. She may have gotten the results but not understand or feel she should interpet them. They don't just say "Patient has Celiac". She would prefer you speak to the GI about the results. If this were me, I would call the GI office and see if the results are in.

The findings on this may not tell you what is wrong. It may just tell you what isn't. You can try gluten-free and see if it helps. You may be gluten intolerant but not Celiac.

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Let me try again. She may have gotten the results but not understand or feel she should interpet them. They don't just say "Patient has Celiac". She would prefer you speak to the GI about the results. If this were me, I would call the GI office and see if the results are in.'

The findings on this may not tell you what is wrong. It may just tell you what isn't. You can try gluten-free and see if it helps. You may be gluten intolerant but not Celiac.

I think I am going to go ahead and go gluten free regardless. I should have found my own GI. I didn't mean to come rudely if I did.

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I think I am going to go ahead and go gluten free regardless. I should have found my own GI. I didn't mean to come rudely if I did.

NO. Not rude. I just didn't make it clear.

Call the GI office and see if the reaults are back. Sounds like the only way you are going to find out.

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I think your dr. Meant have you seen the gi doctor yet - since the results have come back (not have you seen the gi doctor in the first place).

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I'm not sure because she also asked me if he found anything... which she should have known already if she actually had my results.

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I called the GI's office today and they stated that they still haven't received the results of my biopsies. It was a week ago today that I had my EGD and colonoscopy.

I joked with my coworkers that it probably came back positive, but since I am Black and it is just not possible for me to have it, they keep checking it over and over again.

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I called the GI's office today and they stated that they still haven't received the results of my biopsies. It was a week ago today that I had my EGD and colonoscopy.

I joked with my coworkers that it probably came back positive, but since I am Black and it is just not possible for me to have it, they keep checking it over and over again.

I think you should print this and hand it to all the fools who say that. http://www.cureceliacdisease.org/wp-content/uploads/2011/09/CDCFactSheets8_FactsFigures.pdf

And I'd be really interested to know if that percentage is influenced by the number of Black Americans who have medical insurance. There are studies out there showing underrepresentation in other conditions - and the train of thought is they just aren't getting tested.

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So why did your regular doc say she "thinks" your results are okay? Would she have expected to hear from the GI by now, a nd since she didn't, concluded that a ll must be fine?

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I'm not sure. She does stuff like that often. She called me a few weeks ago telling me my FMLA paperwork was ready to be picked up, her intern called the next day saying it was ready. When I went to pick it up, it was not ready. She filled it out when I got there.

I have been with her since I was 18, but it almost seems like she is not listening to you, especially since they started using laptops instead of paper..

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    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
    • I like your plan Cara, I may have to include it in my sons.    Poor little guy is still very very sick. I think he is resisting and cheating, despite having the support of two other siblings and a 100% gluten-free home. 
    • Despite it being a nightmare, I did wait for my kids to get biopsies. At one point I had one severely ill child gluten-free and two more waiting having to eat it. It was worth the wait though and I think long term a biopsy may be worthwhile, especially for school. I have already had issues with schools and camps so having a firm diagnosis has been helpful. 
    • Knowing that the reaction to gluten in celiacs is an uncalled for immune system reaction, I was thinking of how a cure would be possible. Maybe a medicine that somehow turns off the immune system. The only thing that i've heard do that... HIV.  obviously that's way worse than celiac. Just some food for thought.
    • Well, you can probably get an apple or something.  You might be able to get someone to boil you some eggs.  But be careful of things like nuts that should be naturally gluten free.  They have almost always been soaked in a flavor solution that usually containes caramel coloring, "soy" (wheat) sauce and other aditives.  If I am really hungry and must eat in a Chinese restaurant, I order plain white rice and steamed vegetables.  But even so, you must monitor it carefully.  The rice sometimes has other substances added to give it a better texture, and very often the vegetables have in fact had "just a little bit" of soy sauce added.  To be fair, celiac disease is hardly ever found in East Asians, so understandably people are not tuned it to it.  Also, culturally, with the exception of fruits, it is generally thought that the flavor of foods needs to be enhanced, so it is had to find anything natural even in the "western" gorceries. Even in the western restaurants, be careful.  Fish and meat and often vegetables are usually pre-marinated. I will not even attempt to address the issue of cross-comtamination, since that is a whole higher order of things. I do know what I am talking about; I have celiac and have worked here for nearly 7 years.  
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