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lc1333

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lc1333 Apprentice
lc1333
Posted

Ok, the tests i've had and the results...

full celiac panel - negative

upper endoscopy - positive for villi damage

abdominal CT scan - fatty liver, otherwise normal

breath hydrogen test - positive for bacterial overgrowth

went on a gluten free diet - feeling SOOOO much better, no more diarrhea, no more cramping and burning pain, more clear headed

doc told me that i don't have celiac because i had negative bloodwork, in spite of the positive biopsy, put me on antibiotics (didn't work), probiotics (didn't work), then told me that if the probiotics didn't work I would have to go on long term, cycling antibiotics probably for the rest of my life...

decided to give the gluten free diet a shot after talking to y'all, other docs, and nutritionists

went to a follow up today to discuss the results of going gluten free, this is a synopsis of the conversation:

doc: so how are you feeling?

me: so much better, could i have celiac disease?

doc: no, because you had negative blood work

me: oh, ok, not even with a positive biopsy?

doc: no, because you had negative bloodwork

me: i heard that you can have a false negative and still have celiac if you have a positive biopsy

doc: no, because the blood tests are much more accurate these days, you are probably just gluten intolerant

me: ok, do you think i should be concerned about my kids, they've had many of the same symptoms i had

doc: oh, you have to get them tested

me: oh, really, why?

doc: because you had a positive biopsy

me: oh, so if they have positive bloodwork then they have celiac disease, even without a biopsy?

doc: well yeah, but a biopsy IS the gold standard, but because you had a positive biopsy, you can assume that if they have positive bloodwork that they have celiac disease

me: oh, ok

doc: it's very important that you get them tested, because if they do have celiac and it goes untreated they could have long term health problems like fatty liver and other problems

me: oh, so could my results showing fatty liver be because of longterm (35 yrs) untreated celiac disease?

doc: no, because you had negative bloodwork, but if the gluten free diet is working for you, you should stay with it, but it is difficult and expensive, so just having an intolerance is better because you don't have to be so strict...because if you did have celiac and weren't diligent enough it can cause long term health problems like fatty liver...

hmmm....i think i may actually be losing my mind...

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kareng Grand Master
kareng
Posted

What's the point of the " gold standard" ? ( banging my head on the table)

Look up the Celiac Center in Chicago...( www,cureceliac.com or something like that) . They have a question line you can call or fax your pathology report to. Maybe they would fax a note to your doc to say you have Celiac.

Roda Rising Star
Roda
Posted

Your doctor is a twit. One minute he is saying you have celiac (not outright, but when he is saying to get your kids tested because of your positive biopsy), then says you don't have celiac. Despite your negative bloodwork, you are diagnosed celiac based on your biopsy results. You could always get a second opinion if you need the diagnosis. At the very least get your kids blood tested too. Even if your kids tests turn out negative, don't rule out gluten/celiac as an issue if they are presenting with symptoms especially since your blood work was negative.

My oldest son has been blood tested several times over the past 3.5 years and it was always negative. I had him scoped almost 5 months ago and his biopsy was negative also. He went on a gluten free trial anyway(because of symptoms) and he is doing great. Gluten is definately and issue with him despite all testing negative.

mushroom Proficient
mushroom
Posted

Oh, I do so feel your frusstration. That man deserves to be slapped up the side of the head :blink: Knock some sense into him. Did you ask him why he biopsied you if it doesn't make any difference to celiac diagnosis if your blood work is negative?

Yes, do get the children tested, and if they have any symptoms at all go gluten free regardless. All of you. :ph34r:

kareng Grand Master
kareng
Posted

To get your insurance company to pay for your kids to be tested, they need a reason. If the mom has Celiac, that's a reason. That's why I hoped that your doc would listen to some doctors who know about Celiac.

Roda Rising Star
Roda
Posted

To get your insurance company to pay for your kids to be tested, they need a reason. If the mom has Celiac, that's a reason. That's why I hoped that your doc would listen to some doctors who know about Celiac.

Good point. I never had any problem getting my insurance to pay for the testing for the children. I'm not sure exactly how they coded it. I think they put an ICD9 code that was relevant to the test, like abd pain etc.

Roda Rising Star
Roda
Posted

BTW, I want to know how to talk both out of my mouth and my rear end at the same time. :blink::lol: Because that is what this guy is doing...

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Skylark Collaborator
Skylark
Posted

That reads like an Abbott and Costello routine. :blink:

We need to start a thread on stupid stuff doctors say! It would be hysterically funny.

lc1333 Apprentice
lc1333
Posted
  • Author

Yeah, I left the doctor's office thinking, really, am I just stupid because I can't understand a thing she was saying. She just kept contradicting herself everytime she spoke. What I'm not sure of is why she was so resistant to just saying, yes, you have celiac disease. Maybe she didn't want to look wishy washy or indecisive or something, I don't know. But it really was hilarious. She even told me to tell the kids doc that I had a positive biopsy, so the kids need to be tested for celiac. But she NEVER would say, because YOU have celiac the kids need to be tested. She simply wouldn't say it!!!

I'm not sure what the insurance will say, that issue never actually occurred to me, I'll have to check it out, thanks for mentioning that!

My sister was telling me to go get a second opinion but I really think that would be a waste of time and money, since a monkey could diagnose me after the tests and stuff, so I'm just gonna go with it.

Thanks for listening to me vent!!!

lc1333 Apprentice
lc1333
Posted
  • Author

To get your insurance company to pay for your kids to be tested, they need a reason. If the mom has Celiac, that's a reason. That's why I hoped that your doc would listen to some doctors who know about Celiac.

I hadn't thought of that, I will call on Monday and ask about it, but they do all have abdominal pains, so that might be enough, I'm glad you mentioned it, thanks!!

lc1333 Apprentice
lc1333
Posted
  • Author

BTW, I want to know how to talk both out of my mouth and my rear end at the same time. :blink::lol: Because that is what this guy is doing...

it was an amazing sight, lemme tell ya!!! :lol:

lc1333 Apprentice
lc1333
Posted
  • Author

That reads like an Abbott and Costello routine. :blink:

We need to start a thread on stupid stuff doctors say! It would be hysterically funny.

it really was!! it was hilarious, but i was really afraid my brain was going to explode trying to grasp what she was saying!! and not saying!!! :o

nora-n Rookie
nora-n
Posted

that was just full of contradictions! Yeah, otherwise one gets fatty liver, etc...Duh.

Bubba's Mom Enthusiast
Bubba's Mom
Posted

sooo..did you have the genetic test done?

My Celiac panel was negative, but the GI did a scope anyway because of the severity of my symptoms. My damage was severe and visible with the naked eye. My biopsies gave me the Celiac DX.

My PCP didn't believe my DX, because of the blood work and, I'm "too old at 54 to just be getting the disease." As a result she wasn't allowing any follow up blood work to test vitamin/mineral levels, etc.

Later I got the gene test done and was told it was negative for Celiac too. It's a good thing I didn't go out and eat doughnuts and pizza. I knew something had to be wrong because I'm very sensitive to gluten. It turns out my Dr. didn't know how to read the genetic test. I'm actually a DQ 2.2. We are the ones most likely to have severe damage and complications from Celiac.

Your Dr. sounds like she went to school with mine? Clueless!

Do you think the genetic test could clear things up? I found a very good explanation for reading the results on Wikipedia.

Open Original Shared Link

The SIBO can cause some villi damage, but it is usually secondary to Celiac. If your kids have some symptoms..will they be tested for SIBO too? There are too many unknowns here!

I advise you to procede as if you got the Ceiac DX. If you don't..you *could* open yourself up to more damage down the line.

I agree, this sounds like an Abbot and Costello act! :blink:

nora-n Rookie
nora-n
Posted

in the old days suspected celiacs with negative biopsies arranged to get their biopsy slides sent to Dr. Fasano, for a second opinion, and they got their diagnosis.

But your slide is already positive for celiac.

Maybe get an appointment with Fasano or someone that knows about celiac? He and the rest of the department sees lots of celiac patients. Second opinions too.

researchmomma Contributor
researchmomma
Posted

I really don't understand the reluctance by physicians to diagnose Celiac. I couldn't even get a biopsy for my daughter who has had almost 13 years of symptoms.

Maybe you could give this article to your doctor by Dr. Fasano. Here is an excerpt about testing:

AR: What about eliminating the need for the biopsy to diagnose celiac disease?

AF: Confining the diagnosis to a rigid set of rules, which, by the

way, I contributed to wrongly, does not reflect the real gluten world out

there. We know there are clinical cases of celiac disease in which not all

the criteria are there. We published a paper that said let

lc1333 Apprentice
lc1333
Posted
  • Author

so, i guess the only other thing to do is get the genetic testing, but also, i could just wait until my kids get their bloodwork done, if any other them are positive then i really don't need to look any further.

but how do you get genetic testing done? is it done through the doc's office? i think it's interesting that my doc didn't suggest it, on the other hand, maybe i shouldn't find it interesting - rather just par for the course with her...

ciamarie Rookie
ciamarie
Posted

Maybe there's some sort of performance rating or quota system for Celiac and other things, and since it's early in the year she didn't want to mess things up? I don't know, it's the only thing that makes any sense to me.

mommida Enthusiast
mommida
Posted

That reads like an Abbott and Costello routine. :blink:

We need to start a thread on stupid stuff doctors say! It would be hysterically funny.

It would be funny, until we realize how sad it really is. :o

Bubba's Mom Enthusiast
Bubba's Mom
Posted

My GI Dr. ordered the gene test. Any Dr. should be able to order it though? It seems like it would be a good idea if the bloodwork and biopsies tell two different stories? It's like another piece to figuring out the puzzle?

Of course if your Dr. doesn't know how to READ the test..it won't be helpful.

I asked for a copy of my rsults and looked it up myself.

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