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Frustrated With Dr
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2 posts in this topic

I just received my results back from my endoscopy and colonoscopy. Everything was negative. When I asked how many biopsies the Dr took, the receptionist said 7 (but only 1 in the small intestine). He did not do a blood test prior to the procedures. My PCP who referred me specifically said to test for Celiac. My instructions from the GI office is to continue Prilosec (which was giving to me Oct 3) and take Immodium and return in 3 months. I feel like the last 2 months have been wasted and no telling how much $$.

My choices are

1. Go back to my PCP and ask for a celiac panel. Dr visit: $100+ costs of blood tests (my annual blood tests run $125-200, so no telling how much a panel will cost).

2. Follow the GI instructions and be in pain for 3 more months and then pay $150 to see him again.

3. Go to another GI, which who knows how much that will be. Probaly $150-225 for office visit. Plus tests costs. My endoscopy/ colonoscopy was $1000 (hospital fee)+ dr fee+anesthia fee (haven't received bills yet).

4. Go gluten free and see how I feel.

Since the end of August to now, we have/will spend about $2500-3000 for my digestive issues and really didn't testing done that needed to be done. With our high deductible, this is all out of the pocket.

Crohns, Ulcerative Colitis, Cancer, Bacteria, etc has been ruled out. But now I'm wondering if that is bogus too since he ruled out Celiac.

The reasons I wanted a dx was so I know how careful I need to be, whether or not to get my son tested, and to have "proof" that im not crazy..

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If I were you....I would talk to my regular Dr. since he seems to be on board with the Celiac thing. Let him know exactly what you put in your post about the lack of biopsies and that the GI was an idiot. Then ask him for the Celiac panel blood tests. Do the blood work then after giving the blood for said blood work I would go on a gluten free trial. Depending on whether you're willing to spend more money to go see a new GI doc for another round of biopsies. If you are, wait for the biopsies to be done and then do the trial gluten free.

 

How frustrating it is to have doctors that don't know what they're doing when it comes to this. There is actually a topic here in the forums devoted just to that....but I don't remember off the top of my head where it is.

 

Hope you can get some answers. Either from doctors that are doing a decent job or from your own trial and error.

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    • To answer some of your questions.... Non celiac gluten sensitivity does not cause any damage to the small intestine so that is not the source of the "little holes or bumps".  You need to get her records including the report of the endoscopy to see exactly what it says as well as the pathology report of the biopsies. You should always get medical records anyway & keep a copy for yourself. How many biopsies did he take? There should be a minimum of 4, ideally 6. The small intestine is very vast even in a small child. An adults is the size of a tennis court! That's a whole lot of territory so biopsies can miss damage especially when enough of them are not taken! She has 2 positives on the serum panel. This crap about "weak" positives should be thrown out of the nomenclature! A positive is a positive, weak or not! Her DgP IGG is way over the range and extremely telling. As far as my knowledge goes, there is nothing else that causes a positive DgP IGG other than celiac disease. False positives are really rare and to have 2 false positives would be astronomically rare! You are right & smart that she really does need an official diagnosis! IMHO, keep her on gluten for right now. Get a second opinion pronto & I believe you'll be able to get her a dx based on the 4 out of 5 rule if nothing else. I wouldn't think it's going to take more than a month to get to see another doc for a second opinion. Then you can take her off gluten. Kids heal up really fast, way faster than us old geezers! I'm sure as others  wake up & get on their computers they will be along to voice their knowledge. I am in the eastern time zone & rise before the birds so I was on here early. Hang in there mom! You're doing the right thing!
    • Is coffee glutem free or not ?  Always wondered about this ............. got to have my coffee... I am new to this  , very new .........
    • Now that my initial rage has calmed a tad.... your daughter has to fulfill 4 out of 5 of the diagnostic criteria. Second opinion can do a gene test. If positive, then she will have4 out of 5 of the dx criteria to dx without a positive biopsy. See: http://www.gastro.org/news_items/a-biopsy-should-not-be-required-to-make-the-diagnosis which says in part: The presence of signs and symptoms compatible with celiac disease. Positive serology screening (high serum levels of anti-TTG and/or EMA). Presence of the predisposing genes HLA-DQ2 and/or –DQ8. Histological evidence of auto-insult of jejunal mucosa typical of celiac disease. Resolution of the symptoms and normalization of serology test following the implementation of a gluten-free diet.   Also see: http://www.tenderfoodie.com/blog/2014/5/1/dr-fasano-on-new-gut-autoimmune-research-autism-clearing-up.html She can get a dx after her symptoms resolve on a gluten-free diet!
    • OMG!!!! The doc wants her to get sicker & sicker & do further damage so he can diagnose her? Don't do me any favors doc!!! I'm so spitting med right now I can't even speak! Find a new doc, take the records & get a second opinion. Maybe the next doc will have a freaking brain & dx your daughter. She should be dx'd! This is absurd in the extreme. The very least that should happen is the doc give her a dx now & then in a year or 2 have her do a gluten challenge & do a biopsy all over again but seriously, that would be just as cruel as what he's doing now. He's an ASS!
    • Celiac disease may lead to a host of other inflammatory, gluten-related ... Fortunately, Diet Doc offers gluten-free diet plans which are customized to ... View the full article
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