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KristenS

Iron Defency Anemia & Iron Infusions

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I am q 29 year old female who has suffered from Iron Defency Anemia for 2+ years before finally being diagnosed with Celiac two weeks ago. My diagnosis was severe malnutrition due to Celiac. It has effected my B12, calcium and other nutrients as well. My only symptons of Celiac have been my nutritional defencies. No other GI symptoms.

I am slated for a bone density test this week, but my Iron Infusions are not set for another 2 months. I am feeling extremely exhausted, and can barely function, however they dont seem to feel like my iron infusions require fast tracking. Anyone else have such low iron and wait that long for infusions? How long did it take before your body started absorbing iron from food again? (FYI my iron has consistantly been at 1 for the last year + no improvement what so ever with large dose oral iron.)

Edited by KristenS

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I went from 19-45 years with anemia. However, when I was put on a supplement it raised it inspite of untreated celiac. I never went for the cheapest, but had my health professional select for me. IF you stay on a gluten free diet and continue work on healing you will take a while to overcome withdrawl (if you have it) and cross contamination issues. I am sorry you have had to suffer like this, but am happy that you have found the cause and can solve it with time.

Did you have testing for other nutrients? A shortage of B 12 can cause fatigue. I was short on pancreatic enzymes too. It is hard to say which nutrients you specifically need. I had a very thorough nutrition evaluation. It is nice to know exactly what I need. I found that my glutamine level was normal, so I didn't take extra. If one doesn't have enought B vitamins they won't be able to break down other nutrients. I wrote some about my testing in my blog on Celiac.com. Testing 1,2,3 was the name, I think.

I know it doesn't feel to nice now, but please hang on, use what you know, and keep trying to recover. I am about 6 months in and have been continuously making changes. I feel good today and some other days, but don't ask about yesterday!

Diana

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Hi Kristen, I have had Chronic anemia all my life and I have been taking 325 mgs of iron 3 times a day and told to eat liver every night but I kept getting worse and worse. Finally went to a Nuerologist and she said I have Lupus on top of needing a blood transfusion. My GP Doc didn't think I needed anything else done because it was chronic. But I cant get the transfusion until I have my Ablation procedure on Thursday because of Endometriosis, heavy bleeding.

My going gluten-free only helped for a little while, like a year before I started going down hill again.

You've only found out 2 weeks ago. It will take a little while to start feeling better. Try to be as strict as you can, for some it can take just a couple of weeks for some they didn't start feeling better until a year in. It took me 6 months before I started feeling better. Not to mention you may go through withdrawals which will make you feel worse.

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I went from 19-45 years with anemia. However, when I was put on a supplement it raised it inspite of untreated celiac. I never went for the cheapest, but had my health professional select for me. IF you stay on a gluten free diet and continue work on healing you will take a while to overcome withdrawl (if you have it) and cross contamination issues. I am sorry you have had to suffer like this, but am happy that you have found the cause and can solve it with time.

Did you have testing for other nutrients? A shortage of B 12 can cause fatigue. I was short on pancreatic enzymes too. It is hard to say which nutrients you specifically need. I had a very thorough nutrition evaluation. It is nice to know exactly what I need. I found that my glutamine level was normal, so I didn't take extra. If one doesn't have enought B vitamins they won't be able to break down other nutrients. I wrote some about my testing in my blog on Celiac.com. Testing 1,2,3 was the name, I think.

I know it doesn't feel to nice now, but please hang on, use what you know, and keep trying to recover. I am about 6 months in and have been continuously making changes. I feel good today and some other days, but don't ask about yesterday!

Diana

Hi Diana! Thanks for your reply.

My B12 is non exhistant as well. My extreme fatigue didnt really start untill the B12 dropped (I lived with the anemia for almost 2 years before it really took its toll.) Theres quite a few things I am low on, and am waiting for my appointment with my deitition to discuss how to get the rest of my nutrients up.

I wish my iron infusions were happening sooner, but hopefully I can get other things up in the interim and feel a bit better. I havnt had any withdrawl that I can discern, but its hard to tell as my symptons before gluten-free were fatigue, lethargy, irritability, mood swings and forgetfull/foggyness, so in essence I am a bit used to that already! Its hard not having any GI symptoms. I am being super anal retentive about contamination and such, but still fear that I am injesting unknown gluten and harming my body. I dont want to be come a person whos afraid of food!

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Hi KristenS,

I went gluten-free the end of October and life has been a roller coaster ride ever since. One good thing is the anxiety has lessened since maintaining the gluten-free diet (I've been glutened 5-6 times since going gluten-free and that has made it frustrating and difficult).

My hemoglobin was at 7.9 in '09 and I received iron transfusions (10 w/n about a month's time which is ENTIRELY too many!). Really, respect your body and don't try to push them through. That was a mistake. The first infusion was done in the doctor's office and after that, the hospital because my body reacted to the fast drip. Be sure to wait 30 minutes in the doctor's office after your first infusion so that you're not tearing down a freeway and have a reaction (like I did).

The iron infusions did not hold my hemoglobin at a normal rate for long. I changed hematologists and the new doc put me on oral iron which worked better. I stopped taking it in May '12 because I was on anti-vitals for shingles. My Ferritin & hemoglobin both declined.

I just got my lab results back since going gluten-free. My Ferritin is on the uphill climb with no vitamin support which seems to be a miracle.

I have started taking Floravital (liquid iron) from the health food store instead of going back to the Rx which I hope will boost my Ferritin to a desirable level.

I still do not feel well. There have been a few days of glory once I get pretty far past the glutening symptoms but I keep having trouble (w/CC?) and have stopped eating in restaurants or other people's food altogether. This is my plan for the next three months. This is my 11th day in from being glutened for a week (thought I'd go for testing but became too sick to continue with that plan). The longest I've made it is 15 days. Dairy has been eliminated from my diet and will reintroduce in July. It seems to give me symptoms as well. I also stay away from soy, MSG, GMO sources...

There's a great app called NxtNutrio that scans barcodes and tells you if any "offenders" are in the product. I don't know what I would have done without this app quite frankly. My house feels very safe as nothing comes in that isn't scanned (if it has a barcode, that is).

I'm relieved to see the post above saying that it took quite a while to feel better after going gluten-free. Like I said, the anxiety is better but I guess I have quite a ways to go still. With cold & flu season in swing, it's difficult to know how I'm doing.

Hang in there and good luck with your infusions.

Cali

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:) (accidentally posted twice so here's a smiley face for you)

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    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:
    Purée all ingredients together in a blender.
    Cover and refrigerate for at least 1 hour. 
    Adjust seasoning with salt and pepper, as desired. 
    Serve is a bowl with tortilla chips and guacamole.

    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.
    So how, you may ask, is all this related to gluten? As a starting point, one report from the medical literature identifies a patient who developed aphasia after admission for severe diarrhea. By the time celiac disease was diagnosed, he had completely lost his faculty of speech. However, his speech and normal bowel function gradually returned after beginning a gluten free diet (8). This finding was so controversial at the time of publication (1988) that the authors chose to remain anonymous. Nonetheless, it is a valuable clue that suggests gluten as a factor in compromised speech production. At about the same time (late 1980’s) reports of connections between untreated celiac disease and seizures/epilepsy were emerging in the medical literature (9).
    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.
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    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

    Jefferson Adams
    Celiac.com 06/13/2018 - There have been numerous reports that olmesartan, aka Benicar, seems to trigger sprue‐like enteropathy in many patients, but so far, studies have produced mixed results, and there really hasn’t been a rigorous study of the issue. A team of researchers recently set out to assess whether olmesartan is associated with a higher rate of enteropathy compared with other angiotensin II receptor blockers (ARBs).
    The research team included Y.‐H. Dong; Y. Jin; TN Tsacogianis; M He; PH Hsieh; and JJ Gagne. They are variously affiliated with the Division of Pharmacoepidemiology and Pharmacoeconomics, Department of Medicine, Brigham and Women's Hospital and Harvard Medical School in Boston, MA, USA; the Faculty of Pharmacy, School of Pharmaceutical Science at National Yang‐Ming University in Taipei, Taiwan; and the Department of Hepato‐Gastroenterology, Chi Mei Medical Center in Tainan, Taiwan.
    To get solid data on the issue, the team conducted a cohort study among ARB initiators in 5 US claims databases covering numerous health insurers. They used Cox regression models to estimate hazard ratios (HRs) and 95% confidence intervals (CIs) for enteropathy‐related outcomes, including celiac disease, malabsorption, concomitant diagnoses of diarrhea and weight loss, and non‐infectious enteropathy. In all, they found nearly two million eligible patients. 
    They then assessed those patients and compared the results for olmesartan initiators to initiators of other ARBs after propensity score (PS) matching. They found unadjusted incidence rates of 0.82, 1.41, 1.66 and 29.20 per 1,000 person‐years for celiac disease, malabsorption, concomitant diagnoses of diarrhea and weight loss, and non‐infectious enteropathy respectively. 
    After PS matching comparing olmesartan to other ARBs, hazard ratios were 1.21 (95% CI, 1.05‐1.40), 1.00 (95% CI, 0.88‐1.13), 1.22 (95% CI, 1.10‐1.36) and 1.04 (95% CI, 1.01‐1.07) for each outcome. Patients aged 65 years and older showed greater hazard ratios for celiac disease, as did patients receiving treatment for more than 1 year, and patients receiving higher cumulative olmesartan doses.
    This is the first comprehensive multi‐database study to document a higher rate of enteropathy in olmesartan initiators as compared to initiators of other ARBs, though absolute rates were low for both groups.
    Source:
    Alimentary Pharmacology & Therapeutics

    Jefferson Adams
    Celiac.com 06/12/2018 - A life-long gluten-free diet is the only proven treatment for celiac disease. However, current methods for assessing gluten-free diet compliance are lack the sensitivity to detect occasional dietary transgressions that may cause gut mucosal damage. So, basically, there’s currently no good way to tell if celiac patients are suffering gut damage from low-level gluten contamination.
    A team of researchers recently set out to develop a method to determine gluten intake and monitor gluten-free dietary compliance in patients with celiac disease, and to determine its correlation with mucosal damage. The research team included ML Moreno, Á Cebolla, A Muñoz-Suano, C Carrillo-Carrion, I Comino, Á Pizarro, F León, A Rodríguez-Herrera, and C Sousa. They are variously affiliated with Facultad de Farmacia, Departamento de Microbiología y Parasitología, Universidad de Sevilla, Sevilla, Spain; Biomedal S.L., Sevilla, Spain; Unidad Clínica de Aparato Digestivo, Hospital Universitario Virgen del Rocío, Sevilla, Spain; Celimmune, Bethesda, Maryland, USA; and the Unidad de Gastroenterología y Nutrición, Instituto Hispalense de Pediatría, Sevilla, Spain.
    For their study, the team collected urine samples from 76 healthy subjects and 58 patients with celiac disease subjected to different gluten dietary conditions. To quantify gluten immunogenic peptides in solid-phase extracted urines, the team used a lateral flow test (LFT) with the highly sensitive and specific G12 monoclonal antibody for the most dominant GIPs and an LFT reader. 
    They detected GIPs in concentrated urines from healthy individuals previously subjected to gluten-free diet as early as 4-6 h after single gluten intake, and for 1-2 days afterward. The urine test showed gluten ingestion in about 50% of patients. Biopsy analysis showed that nearly 9 out of 10 celiac patients with no villous atrophy had no detectable GIP in urine, while all patients with quantifiable GIP in urine showed signs of gut damage.
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    Source:
    Gut. 2017 Feb;66(2):250-257.  doi: 10.1136/gutjnl-2015-310148.

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    • Well you approached the SIBO side...what about candida? Stuff actually sets up worse after antibiotics. The good bacteria helps kill the stuff, but antibiotics can make it worse and kill off the good guys. It can cause gas, bloating, cravings for sugar, a almost drunk/hung over feeling. If your diet has been high in carbs/sugars then good chance.

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    • Hi Everyone, I've been diagnosed with celiac and I have been gluten free for the past 9 months, but I have not getting better.  The only thing that improved is that I no longer have diarrhea after eating meals.  I have bloating after eating, stomach pain, severe dry eye and a lump on my left side below my ribs that is becoming more painful lately.

      I am wondering what this lump can be?  I've had it since before I was diagnosed but it has only recently been getting painful and feels like it is getting bigger.  I had a CT scan a year ago that didn't find anything and the colonoscopy and endoscopy I had that found the celiac disease 9 months ago didn't find anything related to the lump.

      I'm wondering what this lump could be.  Can it be inflammation from the celiac or is it likely something else? I'm seeing my gastroenterologist tomorrow and I'm looking for suggestions.  He first thought the lump was gas and that I had SIBO / bacterial overgrowth but two weeks of Doxycycline made absolutely no difference for me.  I would love to have some ideas of what this could be so I can get him to run some tests on this lump. Thanks.
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      https://celiac.org/celiac-disease/understanding-celiac-disease-2/diagnosing-celiac-disease/screening/
      https://www.celiac.com/forums/topic/91878-newbie-info-101/

      I used to get sick more often when eating gluten...but if you immune system is fighting one enemy on the front line it gives way for something else to sneak past it and hit you hard. So yes I would say so.....I hardly ever get sick now days with a virus.....food intolerance, reaching my personal tolerances for ceratin types of foods in a meal, or some other random quirk normally makes me sick...but these are normally just purge and go on sick....not painful for hours.  
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