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lemonade

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I have had a blood test and a biopsy which both came back negative for celiac disease. How every the gasto doctor said that I am gluten intolerant and that if i were to stay on gluten i may have celiac disease. Is it possible to be diagnosed with celiac disease if both tests come back negative?

has anyone here been in the same position as me?

I will also be tested by enterolab, so well see what my results will be. Is it possible to have a negative biopsy and blood test but positive result for celiac disease with enterolab?

thnx

L

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It is possible. Blood tests aren't that sensitive, especially if you weren't eating gluten before the test. And with the biopsy, the small intestine is 22 ft. long and the endoscope only sees 5 ft of that. It also depends on your dr, how many samples he took, and how the lab interpreted it.

Even if you're only gluten intolerant, the treatment is the same. Gluten free diet for life.

(((hugs)))

Good luck! :)

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Enterolab cant diagnose Celiac Disease but the results will definately tell you if you're gluten intolerant. Did you order the gene test? If you end up having a Celiac gene you could assume continuing to consume gluten will eventually lead you to Celiac.

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Thanks for the replies,

I ordered the compete test package from enterolab

L

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Guest nini

my opinion is that POSITIVE DIETARY RESPONSE is THE MOST VALID diagnostic tool there is. The blood tests and biopsies can only confirm it. They CANNOT ever say that they are completely negative. There are too many unknown factors still. Too many people that have gluten intolerance or have developed full blown Celiac after having negative tests and being told they could continue eating gluten.

Ultimately, your body is the best tool. Listen to it. If your body tells you it feels better off of gluten, even if it's not 100% better, listen. I had a positive blood test, but chose not to have the biopsy. My blood test results were HIGHLY conclusive along with my symptoms and my incredible positive dietary response. I've been gluten-free for 3 years now (end of March) and while I am mostly better, since I went undiagnosed for 33 years, I still have many health issues I'm dealing with. But I can tell without any doubts that my body reacts VIOLENTLY to gluten. And this is without a so called gold standard biopsy. Again, I repeat, Positive Dietary Response is your most valid diagnostic tool, listen to your body!

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Hi Lemonade, sorry you didn't get the results you were hoping for - I know how disappointing that is. It might be a good idea to get the blood tests rechecked at a later stage if you don't find out anything definite. I had been tested (blood test) in early 2004 (although I didn't know until later) & it came back normal, and later in 2005 I had 2/3 levels positive. I'm still without diagnosis but I'm going to try a gluten-free diet and hope I feel better. Hope the enterolab is more helpful :)

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Here's the skinny on the "Gluten Intolerance": A. You can be gluten intolerant without having Celiac Disease B. You can't have Celiac Disease without being gluten intolerant

It's kind of those set/subset things!

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Yes my blood test was negative. Stool test was positive for gluten sensitivity, the celiac gene and casein.

My doctor says that the blood test and biopsy are not always reliable, no test is. He feels if you feel better getting off gluten, then you have your answer.

Good luck.

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I agree with the others. My blood test came back negative. But thru Enterolab I got very positive results and learned I have two genes, one for celiac and one for gluten. Either way (i.e. with gluten OR celiac genes) the "cure" is the same: don't eat gluten. They can both make you sick. And ultimately, Nini is right....the answer is in the diet. If eating gluten makes you sick, why continue with it?????? The answer is actually quite simple! And the positive thing is, NO DRUGS are necessary to "cure" you!!

Enterolab also told me I was casein sensitive, and on my own observation I think I'm also lactose intolerant. But because of the casein test results, Dr. Fine said I should not have dairy either, and that continuing to eat casein I could also damage my intestines in the same exact way that eating gluten does. So the message is clear: It's all in the diet, and you need to take any sensitivity seriously.

By the way, as one book I'm reading states: If you stop eating gluten, your intestines heal and you no longer have celiac disease....you just have the predisposition to it if you added back the trigger, which is gluten. Remember that celiac disease is actually the term given to the observed intestinal damage seen via a biopsy. Gluten sensitivity is a huge spectrum of reactions, ranging from none at one end to celiac disease at the other end. And all celiac disease starts as gluten sensitivity, although apparently not all gluten sensitivity will lead to celiac disease (the damage). But BOTH can create the same unpleasant symptoms, which is why for both the prescription is identical: don't eat gluten!!

Another interesting factoid: Celiac disease is the ONLY autoimmune disease in which the environmental trigger (gluten) is identified and known! So other autoimmune diseases most likely also have some sort of specific trigger...scientists just haven't yet figured out what the trigger is. The other thing to remember, however, is that when you have one autoimmune disease actively occurring...such as celiac disease....you open the door to others, such as rheumatoid arthritis, lupus, etc. This is why it's so important to get a handle on this and stop eating gluten!!!

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    Jefferson Adams
    Celiac.com 06/19/2018 - Could baking soda help reduce the inflammation and damage caused by autoimmune diseases like rheumatoid arthritis, and celiac disease? Scientists at the Medical College of Georgia at Augusta University say that a daily dose of baking soda may in fact help reduce inflammation and damage caused by autoimmune diseases like rheumatoid arthritis, and celiac disease.
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    A type of cell called mesothelial cells line our body cavities, like the digestive tract. They have little fingers, called microvilli, that sense the environment, and warn the organs they cover that there is an invader and an immune response is needed.
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    Jefferson Adams
    Celiac.com 06/18/2018 - Celiac disease has been mainly associated with Caucasian populations in Northern Europe, and their descendants in other countries, but new scientific evidence is beginning to challenge that view. Still, the exact global prevalence of celiac disease remains unknown.  To get better data on that issue, a team of researchers recently conducted a comprehensive review and meta-analysis to get a reasonably accurate estimate the global prevalence of celiac disease. 
    The research team included P Singh, A Arora, TA Strand, DA Leffler, C Catassi, PH Green, CP Kelly, V Ahuja, and GK Makharia. They are variously affiliated with the Division of Gastroenterology and Hepatology, Beth Israel Deaconess Medical Center, Boston, Massachusetts; Lady Hardinge Medical College, New Delhi, India; Innlandet Hospital Trust, Lillehammer, Norway; Centre for International Health, University of Bergen, Bergen, Norway; Division of Gastroenterology and Hepatology, Beth Israel Deaconess Medical Center, Boston, Massachusetts; Gastroenterology Research and Development, Takeda Pharmaceuticals Inc, Cambridge, MA; Department of Pediatrics, Università Politecnica delle Marche, Ancona, Italy; Department of Medicine, Columbia University Medical Center, New York, New York; USA Celiac Disease Center, Columbia University Medical Center, New York, New York; and the Department of Gastroenterology and Human Nutrition, All India Institute of Medical Sciences, New Delhi, India.
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    Overall global prevalence of celiac disease was 1.4% in 275,818 individuals, based on positive blood tests for anti-tissue transglutaminase and/or anti-endomysial antibodies. The pooled global prevalence of biopsy-confirmed celiac disease was 0.7% in 138,792 individuals. That means that numerous people with celiac disease potentially remain undiagnosed.
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    Source:
    Clin Gastroenterol Hepatol. 2018 Jun;16(6):823-836.e2. doi: 10.1016/j.cgh.2017.06.037.

    Jefferson Adams
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    Dr. Ron Hoggan, Ed.D.
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    My own experience with stuttering is limited. I stuttered as a child when I became nervous, upset, or self-conscious. Although I have been gluten free for many years, I haven’t noticed any impact on my inclination to stutter when upset. I don’t know if they are related, but I have also had challenges with speaking when distressed and I have noticed a substantial improvement in this area since removing gluten from my diet. Nonetheless, I have long wondered if there is a connection between gluten consumption and stuttering. Having done the research for this article, I would now encourage stutterers to try a gluten free diet for six months to see if it will reduce or eliminate their stutter. Meanwhile, I hope that some investigator out there will research this matter, publish her findings, and start the ball rolling toward getting some definitive answers to this question.
    Sources:
    1. Toft M, Dietrichs E. Aggravated stuttering following subthalamic deep brain stimulation in Parkinson’s disease--two cases. BMC Neurol. 2011 Apr 8;11:44.
    2. Tani T, Sakai Y. Stuttering after right cerebellar infarction: a case study. J Fluency Disord. 2010 Jun;35(2):141-5. Epub 2010 Mar 15.
    3. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
    4. Jäncke L, Hänggi J, Steinmetz H. Morphological brain differences between adult stutterers and non-stutterers. BMC Neurol. 2004 Dec 10;4(1):23.
    5. Kell CA, Neumann K, von Kriegstein K, Posenenske C, von Gudenberg AW, Euler H, Giraud AL. How the brain repairs stuttering. Brain. 2009 Oct;132(Pt 10):2747-60. Epub 2009 Aug 26.
    6. Galantucci S, Tartaglia MC, Wilson SM, Henry ML, Filippi M, Agosta F, Dronkers NF, Henry RG, Ogar JM, Miller BL, Gorno-Tempini ML. White matter damage in primary progressive aphasias: a diffusion tensor tractography study. Brain. 2011 Jun 11.
    7. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
    8. [No authors listed] Case records of the Massachusetts General Hospital. Weekly clinicopathological exercises. Case 43-1988. A 52-year-old man with persistent watery diarrhea and aphasia. N Engl J Med. 1988 Oct 27;319(17):1139-48
    9. Molteni N, Bardella MT, Baldassarri AR, Bianchi PA. Celiac disease associated with epilepsy and intracranial calcifications: report of two patients. Am J Gastroenterol. 1988 Sep;83(9):992-4.
    10. http://ezinearticles.com/?Food-Allergy-and-Stuttering-Link&id=1235725 
    11. http://www.craig.copperleife.com/health/stuttering_allergies.htm 
    12. https://www.celiac.com/forums/topic/73362-any-help-is-appreciated/
    13. Ford RP. The gluten syndrome: a neurological disease. Med Hypotheses. 2009 Sep;73(3):438-40. Epub 2009 Apr 29.
    14. Hadjivassiliou M, Gibson A, Davies-Jones GA, Lobo AJ, Stephenson TJ, Milford-Ward A. Does cryptic gluten sensitivity play a part in neurological illness? Lancet. 1996 Feb 10;347(8998):369-71.

    Jefferson Adams
    Celiac.com 06/14/2018 - Refractory celiac disease type II (RCDII) is a rare complication of celiac disease that has high death rates. To diagnose RCDII, doctors identify a clonal population of phenotypically aberrant intraepithelial lymphocytes (IELs). 
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    To that end, a research team recently set out to try to get some information about the frequency and importance of clonal T cell receptor (TCR) gene rearrangements (TCR-GRs) in small bowel (SB) biopsies of patients without RCDII. The research team included Shafinaz Hussein, Tatyana Gindin, Stephen M Lagana, Carolina Arguelles-Grande, Suneeta Krishnareddy, Bachir Alobeid, Suzanne K Lewis, Mahesh M Mansukhani, Peter H R Green, and Govind Bhagat.
    They are variously affiliated with the Department of Pathology and Cell Biology, and the Department of Medicine at the Celiac Disease Center, New York Presbyterian Hospital/Columbia University Medical Center, New York, USA. Their team analyzed results of TCR-GR analyses performed on SB biopsies at our institution over a 3-year period, which were obtained from eight active celiac disease, 172 celiac disease on gluten-free diet, 33 RCDI, and three RCDII patients and 14 patients without celiac disease. 
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    Source:
    Journal of Clinical Pathologyhttp://dx.doi.org/10.1136/jclinpath-2018-205023