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I have been seeing many docs for the past two years for symptoms that completely fit celiacs. but they are just giving diagnosis of ibs or issues from having my gallbladder out after histroectomy.(even though had inflamation in small intestine since after histo.) But it is not just fatty foods that bother me, really its any food it seems. I have had D for two years now and have lost 60 lbs this year without trying(heavy carb lover and coke drinker?) many other symptoms include

iga deficient

weight loss

fibro

neuropathy

joint pain

bloatting

extreem stomach pain

inflamation(4 ct scans) in small intestine

very low vitamin d levels

trouble with absorbing nutrients(can't keep it in

nasua

fatigue

low grade temp frequently???

And even being diagnosed falure to thrive as an infant(saw this listed on another site)

They ran blood work and did biopsy a year ago said test were negative but there was inflamation in small intestine.(it's been there for two years. since then symptoms have gotten worse, now vitamin d is low, and they actually relooked at iga levels(iga deficient like I told them) and yet they wont redue the biopsy? can the results change in a year? what do you do, it's not like I want this diagnosis(love my carbs) but I am tired of feeling so sick all the time, I can't even enjoy eating or have the energy to be with my kids. the only thing that stops D is to actually stop eating? have been looking at just going Gluten-Free to see if it helps but everything says not to untill you get diagnosis.

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oh my. First, I am SO sorry that you are suffering so much. Many, many times the biopsies can be falsely negative. If they don't look in the right place or take enough samples, damage can be missed. Depending on the blood work they did, it may be also falsely negative if you are IgA deficient. There are tests that can be run for IgA deficient people (one of them is the TTG-IgG) and you should ask your doctor about those.

If they do the test and it comes back negative or won't do the test, I would give gluten free a good try. Many, many of your symptoms are CLASSIC of gluten intolerance. Many people have gotten relief from the gluten-free diet without a "firm" diagnosis.

Good luck!!!

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oh my. First, I am SO sorry that you are suffering so much. Many, many times the biopsies can be falsely negative. If they don't look in the right place or take enough samples, damage can be missed. Depending on the blood work they did, it may be also falsely negative if you are IgA deficient. There are tests that can be run for IgA deficient people (one of them is the TTG-IgG) and you should ask your doctor about those.

If they do the test and it comes back negative or won't do the test, I would give gluten free a good try. Many, many of your symptoms are CLASSIC of gluten intolerance. Many people have gotten relief from the gluten-free diet without a "firm" diagnosis.

Good luck!!!

Thank you so much for the help and information. I will be talking to my doctor again!

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My dad had his gall bladder removed and he says it made his symptoms worse. Definitely check into celiac testing. My blood test was false but biopsy and genetic testing (testing for the hereditary gene for celiacs) came back positive.

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I do wonder if there is a link between gall-bladder and gluten. My "symptoms" really started after I'd had my gall bladder taken out in 2000. Over the years they've gotten steadily worse. I'd be curious to know if anyone else sees a link?

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I'm afraid gallbladder and celiac are a common story on these boards. Often the poster will have had the gallbladder removed hoping for relief from symptoms, and they just continue to get worse. Not to say that some of these gallbladders did not need removing, but others have had relief of gallbladder-type symptoms on a gluten free diet (even symptoms which have been confirmed as coming from the gallbladder) so there does seem to be a definite correlation.

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Yea also my aunt had her gall bladder removed and she feels nauseous and sick all the time. She had a alot of tests done and they couldn't find anything so they ruled it as severe ibs. I called her and my dad for you and they said they find relief from avoiding dairy and pastas and breads. My dad drinks something called aloe Vera juice (you can get it at Walgreens) and he said it provides him relief. I now drink it to and it helps with bloating and D.

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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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