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Typing Of Celiac?

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By a fluke, I was diagnosed with Celiac Sprue after an endoscopy (that was for acid reflux and done during a colonoscopy). Biopsy showed some very unhappy villa in that small intestine.

I was directed to do the blood tests, as well, but every single one of those tests came back NEGATIVE. I've read about "false negatives" but didn't really quite understand why they can be. A followup visit to my gastro had him baffled, as well. He doesn't understand how I can have a positive biopsy but a negative blood test.

After the visit, I read that sometimes blood tests aren't as sensitive and stool tests are much more accurate.

ANYWAY......aside from that, apparently my biopsy came back consistent with TYPE B celiac.

I had no idea these things were TYPED. I tried to find out more about this, but only found one website that talked about it and it was WAY over my head (I think it was an actual medical website FOR medical professionals that would understand the jargon).

SO..I am wondering if anyone else knows about this typing and what it means? My doc only told me that from A to D and D is the worst.

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Welcome!

There are others on this board that were diagnosed by biopsy with negative blood work. My own blood work was only weakly positive with total villous atrophy after decades of undiagnosed Celiac Disease. More research is needed to understand the reasons behind the variety of antibody levels in the blood of those with Celiac Disease.

For Celiac Diagnosis, biopsies of the small intestine are typed by the Marsh Scale. If your doctor used the letter "B" - I think he meant Marsh Scale 3B - it is best to request a written or electronic copy of the endoscopy report along with all blood tests so that you know exactly what was found.

Here is a basic explanation of the Marsh Scale used to type Celiac Disease.

Stage 1, the cells on the surface of the intestinal lining (the epithelial cells) have more lymphocytes (white blood cells) among them than normal - Stage one is not specific to Celiac Disease.

Stage 2, the changes of Stage 1 are present (increased lymphocytes), and the crypts are larger than normal.

Stage 3, the changes of Stage 2 are present (increased lymphocytes and larger-than-normal crypts), and the villi are shrinking and flattening (atrophy). There are three levels of Stage 3:

3A--Partial villous atrophy

3B--Subtotal villous atrophy

3C--Total villous atrophy

Stage 4, the villi are totally atrophied (completely flattened) and the crypts are now shrunken, too.

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WOW! I had no idea!

Thank you SO much for this information. Any idea how long it takes to get to each stage? I am trying to figure out how long I've had this issue. From what I know, nobody in my family has had this!

Thanks again!

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No, the progression cannot be gauged by length of time you've had it, although obviously the longer you have had it the more advanced it is likely to be. :)

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Mushroom is right...there is no way to know how long you have had active Celiac Disease.

You may find that your acid reflux along with some minor aches, pains or digestive symptoms that were never enough to cause concern before disappear once you are gluten-free. My first indication of healing was my hair, nails and skin - my nails were brittle and peeled my entire life - again I had no idea this was not normal until I was about three months gluten free and realized I had healthy nails that weren't breaking as often and were no longer peeling. I had pretty great hair and skin before diagnosis, but both became much healthier once gluten was removed.

Now that you have been diagnosed, your siblings and children should be tested (blood) every 3-5 years - more frequently if symptoms occur. Acid Reflux was not a symptom for me, but was the only major symptom that one of my children had. There are over 300 symptoms, so it is important to rule out Celiac should your family have unresolved non-specific health concerns. Additionally, since you had all negative blood - I'd add endoscopy to look for "unhappy villi" (love that term) &/or trial elimination of all gluten to tests needed if your family has unresolved concerns.

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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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    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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    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
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    Journal of Clinical Pathologyhttp://dx.doi.org/10.1136/jclinpath-2018-205023