0
LT1313

Can Celiac Symptoms Come And Go

Rate this topic

Recommended Posts

I'm new to this forum stuff and have never posted before so please bear with me. I'm not sure where to start but here goes.

 

I'm a 48 yr old male and have always had on again off again stomach problems for as long as I can remember. I have always been active and in excellent shape (until lately) except for smoking for 30 yrs (quit yr and half ago). I'm 6-2 and have always been skinny. I work in a high stress job.

 

Back in January 2013 my wife got a stomach bug, which I also caught. Since then I feel like I never got over the stomach bug.The symptoms covered a wide range (all classic celiac disease symptoms except for no rash) so my Primary Doctor sent me to cardiologist (chest pain)and GI Doc(nausea, stomach pain, diarrehea and so on). Cardiologist gave a stress test which went bad and ended up have a heart cath, but that only found 30% blockage, but cholesterol level was 900. Not a big deal so treating with meds and come back in 6 months. Gi Doc does a CT Scan nothing found except fat on liver. Then does endoscopy which didn't show anything and biopsy was negative (don't know if they tested for Celiac). Mean while I was out of work on sick leave so I'm losing money. GI Doc recommends some other tests but was dragging his feet. Ends up his nurse pissed off my wife so it was on to new GI Doc who runs tests, all negative except that I was backed up and bloated. So I get to drink the wonderful stuff to clean me out. Next day no change. So he recommends going back to Primary and recommends brain scan. Primary said said it didn't make sense so sends me to new doc (colon doc) due to family history of colon cancer. So I get cleaned out again in less that a week and get colonscopy. All negative except for diverticilosis (sp?). So I pretty much gave up and went back to work. Also was sent for sleep study and it showed mild Apnea and restless leg Sydrome. So the put me on Nuvigil (i work nights).

 

So this week I decide to go back to primary to ask about relief for severe arthisis and tingling pain in my hands, shoulders and neck. Mind you I have had one cerical fusion surgery and numerous broken bones and dislocations. (Occupational hazzard).  So that is scheduled for Monday.

 

Now for the kicker. I was talking to my mother yesterday and she said "is it Celiac Disease". I'm like "whats that, never heard of it". She said you were diagnosised with it when you were a infant back in 1964, guess you out grew it. So I started reseaching it and all the symptoms fit and my wife said "that's you to a T". That would explain a lot of the issues I have had over the years.

 

My question is how reliable were the test back then and am I gonna run into problems with docs now. Is this really Celiac or was I misdiagnosised back in '64. Plus I never remember eating a gluten free diet when I was young. Or should I just figure I have it and start a gluten free diet.

 

I'm tired of feeling like crap and getting the run a round and taking multiple drugs every day that dont work.

 

Sorry for long post

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


Why not tell your doc this and ask for a Celiac blood panel?

Share this post


Link to post
Share on other sites

Why not tell your doc this and ask for a Celiac blood panel?

I plan to Monday

Share this post


Link to post
Share on other sites

Yes, Celiac WAS considered a childhood disease.  It was thought that you would out grow it as with some allergies.  We now know, as an autoimmune disease,  it is a diagnois for life.  It can come back with a fury, unfortunately.  

 

Welcome back to the Club! B)

 

EDIT:  Keep consuming gluten until all tests are exausted.  It will mess up your test results.  AND to corrrect my typo(s)! :wacko:

Share this post


Link to post
Share on other sites

Yes, Celiac WAS considered a childhood disease.  It was thought that you would out grow it as with some allergies.  We now know, as an autoimmune disease,  it is a diagnois for life.  It can come back with a furry, unfortunately.  

 

Welcome back to the Club! B)

 

EDIT:  Keep consuming gluten until all tests are exausted.  It will mess up your test results.

I read that and Im still eating gluten till i get a answer either way. Though I'm to point where I don't wanna eat anything at all for fear of getting sick

Share this post


Link to post
Share on other sites
Ads by Google:


Yes, Celiac WAS considered a childhood disease.  It was thought that you would out grow it as with some allergies.  We now know, as an autoimmune disease,  it is a diagnois for life.  It can come back with a furry, unfortunately.  

 

I guess that explains the arrrival of my cat into my life five years ago :P:D

Share this post


Link to post
Share on other sites

I guess that explains the arrrival of my cat into my life five years ago :P:D

 

:lol: :lol: :lol:

 

 

Shoot.....I get teased all the time for my weakness in proofing my posts.  POLITE PEOPLE overlook my flaws. <clearning throat> <_<;)

Share this post


Link to post
Share on other sites

I read that and Im still eating gluten till i get a answer either way. Though I'm to point where I don't wanna eat anything at all for fear of getting sick

You already have a diagnosis.  If you feel you want to start they diet...go for it.  It also can serve as a confirmation.

Share this post


Link to post
Share on other sites

Now for the kicker. I was talking to my mother yesterday and she said "is it Celiac Disease". I'm like "whats that, never heard of it". She said you were diagnosised with it when you were a infant back in 1964, guess you out grew it.
 
Oh, wow.  The things we find out from our parents/grandparents when they get really old.  :blink: 
 
This is completely anecdotal, but folk wisdom has it that smoking tobacco will suppress celiac symptoms, and you said you quit not that long ago.  May explain the flare up, but the only healers that will take you seriously on this are Indigenous, so perhaps just ask for the celiac panel blood tests to make the current doctors happy, and quietly go gluten free anyway, since you've been previously diagnosed.  You may not have been tobacco free long enough for the celiac to really get after your gut and make it a visible mess.  Or they didn't look for that.  Good luck monday !  

Share this post


Link to post
Share on other sites

In 1964, the classic symptom of celiac disease was 'failure to thrive"... meaning you probably lost a lot of weight as a child/had stunted growth. So on the one hand, a blood test or endoscopy was probably not done. On the other hand, if your celiac disease diagnosis was correct, you would absolutely still have it today. It cannot come and go--it is a lifelong illness that must be treated with a gluten-free diet. You're symptoms can come and go (and become less severe), but that wouldn't change the underlying illness.

 

I would get a blood panel ASAP. You should have results within a week. But DO NOT give up gluten before your blood panel--I gave up gluten for one month 4 months before my blood results, and even then, my doctor said they invalidated the results. So for peace of mind, keep eating gluten, at least once a day. But get a blood panel as soon as possible.

 

Share this post


Link to post
Share on other sites


Ads by Google:


Back in 1964 there were no blood tests for celiac screening, so a diagnosis would be from a biopsy or other means.. 

Share this post


Link to post
Share on other sites

Wow! Glad your mom remembered and told you! Good luck with your test. I am a smoker....about 5 a day and more on the weekends. I cut back last year from 1.5 packs a day....the symptoms started last year but the weight loss started about 2 years ago. I kept thinking it was because of my active dogs as I was always doing something with them. Then I thought it was stress due to a bad boss. Well dogs are under control, I have had a new boss for 6 months and if I eat breads and pasta I feel horrible. Doing that now for my test on Friday. Keep eating all the gluten you can until your test.

Share this post


Link to post
Share on other sites

Thanks for all the responses. I'm still eating gluten till I get tested, hopefully starting Monday.

Share this post


Link to post
Share on other sites

Over a year into gluten-free/celiac and my mother finally pops "you had so many stomach issues when you were a baby" into a conversation. That was followed by "you had the worst rashes"; however, I do think she disclosed the rashes when my son was a baby.

Seriously.

After my son had stomach issues (10 years ago), and everything that has happened with my gi health over the years....not a word.

Parents. What are you going to do with them???

Good luck at your visit. Hope testing goes smooth and quick.

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
0

  • Who's Online   5 Members, 0 Anonymous, 1,059 Guests (See full list)

  • Top Posters +

  • Recent Articles

    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:
    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.
    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

    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