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Officially Diagnosed Today
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11 posts in this topic

Well I was officially diagnosed today through enterolab. Here were my results. Not sure if my hypothyroidism caused it or if this caused hypothyroidism but I was diagnosed as having irritable bowel syndrome about 20 years ago...Doctor thought i might be lactose intolerant at the time but i wasn't...i guess he should have looked into wheat considering i always got sick from cereal and pizza (why he thought it was lactose).

Fecal Anti-gliadin IgA 28 Units (Normal Range is less than 10 Units)

Fecal Anti-tissue Transglutaminase IgA 34 Units (Normal Range is less than 10 Units)

Quantitative Microscopic Fecal Fat Score 332 Units (Normal Range is less than 300 Units)

In the descriptions after it it kinda freaked me out with talk about pancreatic issues with fecal fat etc But it sure seems like it's just straight gluten intolerance based off my symptoms over the years?

Can anyone tell me if this means actual celiac disease or just sensitivity? How does one find out for sure if it's celiac? Or is all autoimmune celiac? Was never quite clear on that.

Well at least I know now. Honestly most people would probably be more upset than me...for me...I finally have an answer to years of different types of digestive issues. At least I assume it's what the "irritable bowel" was all those years ago. What a sad mess I was sitting on the toilet crying from the pain in my lower tummy *sighs*

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Can anyone tell me if this means actual celiac disease or just sensitivity? How does one find out for sure if it's celiac? Or is all autoimmune celiac? Was never quite clear on that.

I'm glad that you feel you have found your answer. What's most important is that you go on the diet and find relief. And this is the best source of information around.

EndoLabs do not/can not test for Celiac Disease. And they claim that they can test for sensitives. Okay, well... you can guess that I'm not a big fan. B) But many people here are.

Your best test, is to go gluten free and measure your response. You might have already done that. If you have a positive dietary response, you will know that you have a gluten sensitivity or Celiac.

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Oh I definitely did already as I have yet to have one of my stomach aches since going gluten free. I was getting some stomach aches that made me feel somewhat like i was going to throw up but more of an ache to it really. I haven't had it so far since going completely off the gluten.

Why are you not a fan of labs?

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Oh I definitely did already as I have yet to have one of my stomach aches since going gluten free. I was getting some stomach aches that made me feel somewhat like i was going to throw up but more of an ache to it really. I haven't had it so far since going completely off the gluten.

Why are you not a fan of labs?

So glad you are finding relief.

Dr. Peter Green, the foremost research doctor in Celiac Disease has stated that there has not yet been a test that can measure for gluten sensitivity.

Enterolabs and Dr. Fine have profited millions of dollars from testing, that his peers and experts in the field, consider invalid.

Of course, this is my opinion. I am certain that others may feel differently. Everyone finds their place by different roads.

But, I am happy for you that you have found your answer.

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Enterolabs and Dr. Fine have profited millions of dollars from testing, that his peers and experts in the field, consider invalid.

I think I would say "not-validated", which is different. 'Invalid' implies not true, while 'not validated' suggests that it could be true or not,but you need to check.

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I think I would say "not-validated", which is different. 'Invalid' implies not true, while 'not validated' suggests that it could be true or not,but you need to check.

Yes, agreed :) . "Not validated" is a better and more accurate choice of words. Thank you for calling that to my attention. ;)

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I had to go gluten free irregardless due to hypothyroidism anyhow. But I definitely don't feel as bad when I'm off of it. I've had problems for years with my digestive system. Not sure why any reaction would show in my stool if there wasn't anything?

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Actually what I'd be curious to know...has anyone taken this test and been shown to NOT be gluten sensitive? If it's legit I would assume there would be people who haven't had gluten intolerance? My husband is currently waiting on his results so I guess we'll see with him lol

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Is there a reason you did not have a celiac blood panel?

Best way to figure out is to go that route, and have an endoscopy, especially if you have had stomach issues that long- there could be a great deal of intestinal damage.

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Actually what I'd be curious to know...has anyone taken this test and been shown to NOT be gluten sensitive? If it's legit I would assume there would be people who haven't had gluten intolerance? My husband is currently waiting on his results so I guess we'll see with him lol

There have been several threads on this, and yes, people do test negative.

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I didn't get a blood panel because i'm still going through a lot of blood testing to do with thyroid right now and everything is so expensive. I also heard that it doesn't necessarily show up in blood so i went with the stool test which seemed to be more definite from what i'd read all over the place.

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    • I think the idea of grinding your own at home stems from the thought that flavored coffees might be ground on the same machines.  The grinders in the grocery are not cleaned between uses.  However, I have not found a flavored coffee bean that had gluten, so it's probably not a real concern.  For coffee that comes from a factory ground, I wouldn't worry at all.   Machines would be cleaned between flavors and nothing but coffee could be made on the machines or even in the same building ( everything made would taste/ smell like coffee). if you still have doubts - I went to the International Celiac Disease Symposium a few years back.  This is held every few years in different countries for medical professionals that study and treat Celiac.  They present research, etc.  All food served was gluten-free.  We drank a lot of plain, already ground, coffee!  A lot!   Coffee is not on any lists as a gluten containing food.  Talking legitimate organizations - not some blogger or pseudo- science website.   After all this, if you still doubt that coffee is gluten free...... Then don't drink it!  It leaves more for me!    
    • 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!
    • 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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