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So according to my test results I am negative for celiac but.... I am very low in iron. This surprised me very much as although I don't eat meat (I do eat fish) I am a bit of a health nut, and eat masses of green leafy veg, dried fruit (all the high iron ones like raisins, figs, prunes etc) beans such as soya beans and kidney beans and I take multivitamins and use protein powder which also is loaded with added vitamins and minerals.

The doctor has put me on iron pills - according to the bottle the 'normal dose' to treat anaemia is 2 tablets per day, I have been put on 3 per day! It's not like I am large, or heavy, I am 5ft 2" and wear a UK size 6 clothes! so there is not much of me to need a bigger than normal dose.

I have to go back in 3 months for another blood test to see if that has fixed the problem.

I was also given some info on Irritable bowel syndrome and some Colpermin capsules to try, for my stomach/bowel symptoms.

The thing is I don't know now whether to go back to being gluten free now or to wait until after the 3 months on iron, because if I stay on gluten and taking the iron does not resolve the problem (if it is an absorption issue), then it gives a genuine picture of things. However if I take the iron AND go gluten free at the same time, then the doctor will just put the improvement down to taking the iron alone.

It also is nagging at the back of my mind that I had gone gluten free for a week or so, and did a 6 week gluten challenge before the blood test, and I worry that maybe I had not eaten enough gluten...as the first thing my doctor asked was if I had been eating gluten at the time of the test.

I don't have the actual results (as UK GPs are not generally happy about actually handing over the numbers).

My feeling at the moment is just to take the iron (and colpermin) and see what happens to my iron level. It would perhaps explain why |I have been feeling even more exhausted than normal!

Has anyone else had similar results/ low iron etc?

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Did you have an endoscopy or just bloodwork? I know someone that had very low iron due to an ulcer that was found via the endoscopy. She also tested negative for celiac.

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You won't have thrown the bloodwork with only a week gluten-free and the six weeks back eating gluten.

As Christine says, you probably need an endoscopy and biopsies. Idiopathic low iron can be caused by celiac and the bloodwork has about a 20% chance of false negatives.

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Thanks for your replies....

It was just bloodwork which was negative. There has been no suggestion of a follow up endoscopy.

With regard to ulcer... actually my mum was found to have low iron last year, it turned out to be due to an ulcer which turned out to be cancer (inoperable- and now terminal) So I would be lying, if that was not at the back of my mind!

I guess all I can do just now is wait and see if the iron pills change anything when I get re-tested in 3 months. If it does nothing then obviously there is another issue, if the iron fixes the problem, then I will just need to be much better with my diet than I though I had been, and really make sure I load up on iron rich foods etc, as there is no way I am going back to eating meat!

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Thanks for your replies....

It was just bloodwork which was negative. There has been no suggestion of a follow up endoscopy.

With regard to ulcer... actually my mum was found to have low iron last year, it turned out to be due to an ulcer which turned out to be cancer (inoperable- and now terminal) So I would be lying, if that was not at the back of my mind!

I guess all I can do just now is wait and see if the iron pills change anything when I get re-tested in 3 months. If it does nothing then obviously there is another issue, if the iron fixes the problem, then I will just need to be much better with my diet than I though I had been, and really make sure I load up on iron rich foods etc, as there is no way I am going back to eating meat!

With a family history like that...I'd ask for an endoscope. I was one of the 20-30% that tests negative on blood tests. An ndoscope showed severe damage. If I had stopped at the blood test results..who knows what might have happened?

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You are right about my family history, I think the same too, I would add that my daughter sometimes displays symptoms which could be gluten related too.

Am I right in thinking that if there is damage, that the iron pills won't help if absorption will be an issue?

At the moment I am thinking that if the iron does not help then I will have good reason to ask for further testing....

I hate being in this position, as I already have a few health issues, and just feel like I a trying to find another one! My doctor is pretty good, but sometimes I do wonder if she thinks I sit at home looking up things to find wrong with myself!, as I am unfortunate in having M.E (C.F.S) which is one of those things which can't actually be 'proved' by a medical test other than elimination of other things, Ehlers Danlos type lll (hypermobility) and (reactive) depression as a result of living with the pain and limitations of the other 2 conditions.

So, pushing for further investigation just feels like I am looking for another condition to add to my collection as it were (although she has already added IBS!) but if the iron does not work I would have a reason to ask for further investigation....

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You are right about my family history, I think the same too, I would add that my daughter sometimes displays symptoms which could be gluten related too.

Am I right in thinking that if there is damage, that the iron pills won't help if absorption will be an issue?

At the moment I am thinking that if the iron does not help then I will have good reason to ask for further testing....

I hate being in this position, as I already have a few health issues, and just feel like I a trying to find another one! My doctor is pretty good, but sometimes I do wonder if she thinks I sit at home looking up things to find wrong with myself!, as I am unfortunate in having M.E (C.F.S) which is one of those things which can't actually be 'proved' by a medical test other than elimination of other things, Ehlers Danlos type lll (hypermobility) and (reactive) depression as a result of living with the pain and limitations of the other 2 conditions.

So, pushing for further investigation just feels like I am looking for another condition to add to my collection as it were (although she has already added IBS!) but if the iron does not work I would have a reason to ask for further investigation....

I had severe damage and they put me on iron pills. I guess they're hoping for a patch of villi that might grab it? It's been slow to resolve in me, which is pretty normal I guess.for all anemics? If you're waiting until future blood tests show you're not absorbing the iron, it may take a while I think?

I know you have other issues, and may worry that you'll be pegged as a hypochondriac? I'd ask for the scope anyway. The IBS, anemia, family history, and other illnesses should be enough to justify the reason for a scope?

Maybe if you took a print out to the Dr. about causes for anemia, it would make a better case for further investifgation?

http://www.webmd.com/a-to-z-guides/understanding-anemia-basics

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I had severe damage and they put me on iron pills. I guess they're hoping for a patch of villi that might grab it? It's been slow to resolve in me, which is pretty normal I guess.for all anemics? If you're waiting until future blood tests show you're not absorbing the iron, it may take a while I think?

I know you have other issues, and may worry that you'll be pegged as a hypochondriac? I'd ask for the scope anyway. The IBS, anemia, family history, and other illnesses should be enough to justify the reason for a scope?

Maybe if you took a print out to the Dr. about causes for anemia, it would make a better case for further investifgation?

http://www.webmd.com...g-anemia-basics

Thanks for that Bubba's Mom, certainly very informative reading. I have to be re-tested in 3 months, so that will show if the iron has made any difference. I guess I have waited this long, I can wait a bit longer....It took me years to get diagnosis of the other things I have, so I guess I am used to the whole process of going through banging my head against a wall for a long time first :) but I will definitely push the point if the iron issue has not resolved at my next appointment based on the article you kindly found, so thanks very much for that.

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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.
    Those scientists recently gathered some of the first evidence to show that cheap, over-the-counter antacids can prompt the spleen to promote an anti-inflammatory environment that could be helpful in combating inflammatory disease.
    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.
    The team’s data shows that when rats or healthy people drink a solution of baking soda, the stomach makes more acid, which causes mesothelial cells on the outside of the spleen to tell the spleen to go easy on the immune response.  "It's most likely a hamburger not a bacterial infection," is basically the message, says Dr. Paul O'Connor, renal physiologist in the MCG Department of Physiology at Augusta University and the study's corresponding author.
    That message, which is transmitted with help from a chemical messenger called acetylcholine, seems to encourage the gut to shift against inflammation, say the scientists.
    In patients who drank water with baking soda for two weeks, immune cells called macrophages, shifted from primarily those that promote inflammation, called M1, to those that reduce it, called M2. "The shift from inflammatory to an anti-inflammatory profile is happening everywhere," O'Connor says. "We saw it in the kidneys, we saw it in the spleen, now we see it in the peripheral blood."
    O'Connor hopes drinking baking soda can one day produce similar results for people with autoimmune disease. "You are not really turning anything off or on, you are just pushing it toward one side by giving an anti-inflammatory stimulus," he says, in this case, away from harmful inflammation. "It's potentially a really safe way to treat inflammatory disease."
    The research was funded by the National Institutes of Health.
    Read more at: Sciencedaily.com

    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.
    For their review, the team searched Medline, PubMed, and EMBASE for the keywords ‘celiac disease,’ ‘celiac,’ ‘tissue transglutaminase antibody,’ ‘anti-endomysium antibody,’ ‘endomysial antibody,’ and ‘prevalence’ for studies published from January 1991 through March 2016. 
    The team cross-referenced each article with the words ‘Asia,’ ‘Europe,’ ‘Africa,’ ‘South America,’ ‘North America,’ and ‘Australia.’ They defined celiac diagnosis based on European Society of Pediatric Gastroenterology, Hepatology, and Nutrition guidelines. The team used 96 articles of 3,843 articles in their final analysis.
    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.
    Rates of celiac disease were 0.4% in South America, 0.5% in Africa and North America, 0.6% in Asia, and 0.8% in Europe and Oceania; the prevalence was 0.6% in female vs 0.4% males. Celiac disease was significantly more common in children than adults.
    This systematic review and meta-analysis showed celiac disease to be reported worldwide. Blood test data shows celiac disease rate of 1.4%, while biopsy data shows 0.7%. The prevalence of celiac disease varies with sex, age, and location. 
    This review demonstrates a need for more comprehensive population-based studies of celiac disease in numerous countries.  The 1.4% rate indicates that there are 91.2 million people worldwide with celiac disease, and 3.9 million are in the U.S.A.
    Source:
    Clin Gastroenterol Hepatol. 2018 Jun;16(6):823-836.e2. doi: 10.1016/j.cgh.2017.06.037.

    Jefferson Adams
    Celiac.com 06/16/2018 - Summer is the time for chips and salsa. This fresh salsa recipe relies on cabbage, yes, cabbage, as a secret ingredient. The cabbage brings a delicious flavor and helps the salsa hold together nicely for scooping with your favorite chips. The result is a fresh, tasty salsa that goes great with guacamole.
    Ingredients:
    3 cups ripe fresh tomatoes, diced 1 cup shredded green cabbage ½ cup diced yellow onion ¼ cup chopped fresh cilantro 1 jalapeno, seeded 1 Serrano pepper, seeded 2 tablespoons lemon juice 2 tablespoons red wine vinegar 2 garlic cloves, minced salt to taste black pepper, to taste Directions:
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    Cover and refrigerate for at least 1 hour. 
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    Dr. Ron Hoggan, Ed.D.
    Celiac.com 06/15/2018 - There seems to be widespread agreement in the published medical research reports that stuttering is driven by abnormalities in the brain. Sometimes these are the result of brain injuries resulting from a stroke. Other types of brain injuries can also result in stuttering. Patients with Parkinson’s disease who were treated with stimulation of the subthalamic nucleus, an area of the brain that regulates some motor functions, experienced a return or worsening of stuttering that improved when the stimulation was turned off (1). Similarly, stroke has also been reported in association with acquired stuttering (2). While there are some reports of psychological mechanisms underlying stuttering, a majority of reports seem to favor altered brain morphology and/or function as the root of stuttering (3). Reports of structural differences between the brain hemispheres that are absent in those who do not stutter are also common (4). About 5% of children stutter, beginning sometime around age 3, during the phase of speech acquisition. However, about 75% of these cases resolve without intervention, before reaching their teens (5). Some cases of aphasia, a loss of speech production or understanding, have been reported in association with damage or changes to one or more of the language centers of the brain (6). Stuttering may sometimes arise from changes or damage to these same language centers (7). Thus, many stutterers have abnormalities in the same regions of the brain similar to those seen in aphasia.
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    With the advent of the Internet a whole new field of anecdotal information was emerging, connecting a variety of neurological symptoms to celiac disease. While many medical practitioners and researchers were casting aspersions on these assertions, a select few chose to explore such claims using scientific research designs and methods. While connections between stuttering and gluten consumption seem to have been overlooked by the medical research community, there is a rich literature on the Internet that cries out for more structured investigation of this connection. Conversely, perhaps a publication bias of the peer review process excludes work that explores this connection.
    Whatever the reason that stuttering has not been reported in the medical literature in association with gluten ingestion, a number of personal disclosures and comments suggesting a connection between gluten and stuttering can be found on the Internet. Abid Hussain, in an article about food allergy and stuttering said: “The most common food allergy prevalent in stutterers is that of gluten which has been found to aggravate the stutter” (10). Similarly, Craig Forsythe posted an article that includes five cases of self-reporting individuals who believe that their stuttering is or was connected to gluten, one of whom also experiences stuttering from foods containing yeast (11). The same site contains one report of a stutterer who has had no relief despite following a gluten free diet for 20 years (11). Another stutterer, Jay88, reports the complete disappearance of her/his stammer on a gluten free diet (12). Doubtless there are many more such anecdotes to be found on the Internet* but we have to question them, exercising more skepticism than we might when reading similar claims in a peer reviewed scientific or medical journal.
    There are many reports in such journals connecting brain and neurological ailments with gluten, so it is not much of a stretch, on that basis alone, to suspect that stuttering may be a symptom of the gluten syndrome. Rodney Ford has even characterized celiac disease as an ailment that may begin through gluten-induced neurological damage (13) and Marios Hadjivassiliou and his group of neurologists and neurological investigators have devoted considerable time and effort to research that reveals gluten as an important factor in a majority of neurological diseases of unknown origin (14) which, as I have pointed out previously, includes most neurological ailments.
    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). 
    However, researchers really don’t have much data regarding the frequency and significance of clonal T cell receptor (TCR) gene rearrangements (TCR-GRs) in small bowel (SB) biopsies of patients without RCDII. Such data could provide useful comparison information for patients with RCDII, among other things.
    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. 
    Clonal TCR-GRs are not infrequent in cases lacking features of RCDII, while PCPs are frequent in all disease phases. TCR-GR results should be assessed in conjunction with immunophenotypic, histological and clinical findings for appropriate diagnosis and classification of RCD.
    The team divided the TCR-GR patterns into clonal, polyclonal and prominent clonal peaks (PCPs), and correlated these patterns with clinical and pathological features. In all, they detected clonal TCR-GR products in biopsies from 67% of patients with RCDII, 17% of patients with RCDI and 6% of patients with gluten-free diet. They found PCPs in all disease phases, but saw no significant difference in the TCR-GR patterns between the non-RCDII disease categories (p=0.39). 
    They also noted a higher frequency of surface CD3(−) IELs in cases with clonal TCR-GR, but the PCP pattern showed no associations with any clinical or pathological feature. 
    Repeat biopsy showed that the clonal or PCP pattern persisted for up to 2 years with no evidence of RCDII. The study indicates that better understanding of clonal T cell receptor gene rearrangements may help researchers improve refractory celiac diagnosis. 
    Source:
    Journal of Clinical Pathologyhttp://dx.doi.org/10.1136/jclinpath-2018-205023

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