Jump to content



Celiac.com Sponsor (A1):



Celiac.com Sponsor (A1-m):


  • You've found your Celiac Tribe! Join our like-minded, private community and share your story, get encouragement and connect with others.

    💬

    • Sign In
    • Sign Up
  • Jane N Ogg
    Jane N Ogg

    Purpura and Celiac Disease

    Reviewed and edited by a celiac disease expert.

    Journal of Gluten Sensitivity Summer 2010 Issue. NOTE: This article is from a back issue of our popular subscription-only paper newsletter. Some content may be outdated.

    Purpura and Celiac Disease - Image: CC BY 2.0--mark_donoher
    Caption: Image: CC BY 2.0--mark_donoher

    Celiac.com 08/03/2019 (originally published 07/12/2010) - My daughter’s voice revealed her repugnance as she pointed to my legs.  “Mom, you have those ugly, red spots on your legs again! What are those things? Why do you get them?”

    I sighed and looked down.  Once again, the familiar vacation pattern was emerging.  After two or three days of hot weather and lots of walking on hard surfaces, little pinhead sized red spots would start appearing on my lower legs.  The spots would increase in number and in size until my legs seemed to be a giant blood blister.  I had no answer to my daughter’s questions.  



    Celiac.com Sponsor (A12):






    Celiac.com Sponsor (A12-m):




    After the previous vacation, I had taken a picture of my legs and later shown it to my doctor, but he only shrugged his shoulders, stating that my guess was as good as his.  Actually, I did have a theory.  Most vacations also caused pain throughout my entire body.  Many nights I lay awake with tears running down my face after everyone else was asleep.  Just turning in bed made me groan.  The only place that didn’t hurt was a nine-inch square area on my chest.  However, I desperately tried to hide my health woes from my family.  I took 10-12 aspirins each day to mask the pain.  My theory for the purple dots was that I had thinned my blood so much from taking so much aspirin that blood was seeping from my capillaries.

    Even after I was diagnosed with celiac disease eight years ago, my theory did not change.  After embracing a gluten-free lifestyle, the ugly spots stopped marring my legs while on vacation.  At that time I rationalized that my prior vacation diet consisting primarily of gluten-rich food such as sandwiches, pizza, cakes and cookies had caused the intense pain, so my self-diagnosis of aspirin poisoning still seemed appropriate.

    Recently, however, my now-grown daughter and I sat in front of my computer, doing a Google search to try to determine what was causing some bumps on her scalp.  As we clicked on one of the links, a photo popped up, and both of us instantly pointed at the screen.  I gasped, “That’s just what I used to have!” at the same time that she was saying, “Mom, I remember when your legs looked like that!”  We had accidentally located a site describing purpura.

    As it turns out, if I had ever gone to a doctor when the red bumps were obviously covering my legs, he would probably have diagnosed me with ITP, Idiopathic Thrombocytopenic Purpura, which is characterized by a low platelet count, normally functioning bone marrow, and the absence of a diagnosis of a disorder that would cause loss of platelets.  If they had known that I had celiac disease, the diagnosis would have been Secondary TTP, Thrombotic Thrombocytopenic Purpura, because there is evidence that gluten is a trigger for this condition.  (Refer to Dr. Ron Hoggan’s article, Thrombocytopenic Purpura and Celiac Disease, published on 7-26-1996.)

    The really surprising result of my internet search was the implication that the intense pain I felt during vacations might not have been solely the systemic result of ingesting gluten.  Purpura can also cause bleeding in the internal organs.  I was aware that there were times when I would have blood in my feces, but I had no way of knowing if other organs or muscles were affected.  If the high levels of gluten were indeed causing internal bleeding, I am extremely fortunate that I never experienced a hospitalization as this condition can be acute or even fatal.

    Perhaps you are wondering why I did not seek immediate medical attention when my legs were covered with horrible red bumps, there was blood in my stools, and I was suffering constant pain.  The answer is simple:  I did not trust doctors to be able to find out what was wrong with me.  A lifetime of bad experiences had taught me to go to the doctor only for “normal” ailments such as respiratory infections or a sprained ankle, but to leave out any mention of the myriad of “invisible” ailments that I had experienced since childhood.  Only when a particular problem was causing a major life-style interruption did I dare to broach the subject with a physician, and then only in a limited manner.  Fortunately for me, I had developed a very high pain tolerance and a very positive attitude toward enjoying life in spite of any physical limitations, so I was able to get by pretty well until a perfect storm of circumstances brought me down.

    Unlike many people with celiac disease, symptoms during my early years were primarily systemic rather than gastrointestinal.  It is only now, with hindsight perspective that these seemingly unrelated symptoms connect to indicate gluten sensitivity.  The earliest reaction I can recall occurred around age three when I would often think that cows or soldiers would be coming across the field to storm my grandparent’s farmhouse.  At the time, my family thought I was having nightmares because my parents had recently divorced, and I lived half of each week at the farm with my father and the other half of the week in town with my mother’s family.  Now I realize that the high-gluten diet at the farm was causing heart palpitations and pounding in my ears, a real sound that only a child would interpret as the sound of invaders.  By elementary school, I was often teased for preferring to read rather than run and play with other children.  Now I know that the reason I would become so fatigued and nauseated from the heat was a direct result of gluten poisoning.

    Being heat intolerant was actually a major problem until my diagnosis.  My parents often thought I was just being lazy and that I complained about feeling badly to get out of doing outside chores.  At summer camps, I became very creative at avoiding participation in any activity done in full sunlight.  My friends loved to lie in the sun, but I wondered why they thought it was so pleasant.  It never occurred to me that the pounding headache, the nausea, and the feeling that my heart was going to explode was something that only I experienced.  After I married a very adventurous man, summers included active vacations.  It usually took at least three months to recover fully from just one week’s holiday.  

    My gastric symptoms worsened in my teens, and flared up seriously from time to time.  At least once a week I would spend an hour in the bathroom, moaning with the pain of what I now know is a spastic colon.  Those episodes would leave me so weak that I would have to go to bed afterwards.  Finally, I started to realize that something was very wrong with me and began to voice my complaints.  At seventeen, I was hospitalized for three days for extensive and often painful testing.  The doctor did note that I had the colon of a sixty year old, but still concluded that there was no reason to be concerned because I was just a typical, emotional teenager of the 70’s whose angst was causing a few stomach problems.  

    It is difficult to describe what that diagnosis did to me.  The pains I felt were invisible to everyone else, and apparently even to the medical testing procedures.  My doctor and parents thought that I was inventing all this just to get attention.  The fear of being labeled a hypochondriac was greater than my fear of the pain.  It seemed that my only recourse was to just learn to live with it, whatever “it” was.

    Over the next twenty years, I experienced a wide variety of symptoms but I never considered that they could somehow be connected.  (For a full list of symptoms, see the box below.)  Applying some strategies from Psychology classes and church led to the development of some great coping skills.  By focusing on the needs of my husband and children, I could turn down the volume of my body’s cries for attention.  By emphasizing the joys of life, I could overlook the minor pains.  By visualizing the acute pain as riding a white-water river, I could choose to relax and let the pain “float” me to the next place of calm water.  Using a daily session of Bible reading and writing in my prayer journal was my therapy to overcome depression.  The natural vitality of youth carried me through those years in what I optimistically considered to be reasonably good health.

    However, early-onset menopause started in my late thirties.  With it began a rapid downward spiral in my health.  Those natural hormonal imbalances seemed to corrode the fragile façade that covered my infirmities.  At the same time, the pace of our lives accelerated from busy to chaotic as we entered into our teenagers’ world of sports, school clubs, and endless other social, community and church activities.  During those years my energy was sapped with what I sardonically referred to as “terminal fatigue.”  The straw that broke the camel’s back was our decision to purchase a custom built house.  Along with the understandable stress of learning the ABC’s of home construction while orchestrating the lives of busy teenagers, I also chose to faux finish most of the rooms in our new house.  During the cold months of January and February in 2002, I spent at least 30 hours each week mixing and applying paint in unventilated rooms.  The central heat was not yet operational, so the professional painters used a smelly, forced- air, propane heater.  Because I was so pressed for time, most of our meals were sandwiches from fast food restaurants.  As soon as the painting was complete, we made the exhausting move into our new home in mid-March.

    It immediately became apparent that my health problems were reaching a critical level.  Even after the unpacking was completed, each day I still had to lie down every few hours.  Continuing to substitute teach two or three times a week,  I was so completely drained at the end of school that I had to lie down for the rest of the day.  By now I was an expert at hiding my illness from most people by clever tricks of body language.  If my legs felt too leaden to keep up the pace a friend was walking, I could stop to point out some “important” thing that caught my eye so I could rest a bit.  I practiced lifting my sagging shoulders and smiling a hello when people came my way.  Those tricks could not deceive my family, though.  My mother and husband both feared I was dying.

    One particularly bad day, I dragged myself out to my nurse practitioner, who was also a family friend, and said, “Jack, check to see if this is diabetes.  If it is not, don’t worry about it; no one will ever figure out what this is.”  That statement was like waving a red flag in front of a bull, and Jack replied, “No, Jane.  We WILL find out what is going on here!”  

    The initial series of tests seemed to indicate that I had Lupus, even though the lab tests had borderline values.  I have since learned that many of the symptoms of systemic celiac disease are very similar to SLE.

    Then we discovered that my thyroid was under performing even though the lab tests were within normal limits.  According to Broda O.  Barnes, MD, PhD, lab tests aren’t sensitive enough to determine low-thyroid function when the hypothyroidism is secondary to a primary illness.  A reliable do-it-yourself test is the Barnes Basal Temperature Test.  Place a thermometer on the bedside table and immediately upon wakening take your armpit temperature.  It is very important to not sit up or move much.  If the temperature is 97.8 to 98.2 F, the thyroid is functioning normally.  Even a fraction of a degree lower indicates low thyroid function.  I took my temperature two days in a row and it averaged 95.3 F!  Within five days of starting thyroid meds, I felt significantly less tired.

    The next stop was a visit to a neurologist to evaluate leadenness in my legs that made walking difficult as well as the intermittent numbness and tingling in my feet and hands and sometimes across my right cheek.  As soon as I described my symptoms, the neurologist shook his head and scowled, “That cannot happen.  At whatever place on the spinal column that there is a problem, the numbness would be consistent below that point.  There cannot be numbness in random places like that.”

    Those words were like a slap across my face!  Again, a doctor would rather believe that I made up an impossible set of symptoms rather than look for a way to solve the mystery.  In typical fashion, I didn’t argue with him.  I just shut down.  He completed his exam and his tests but I already knew it was an exercise in futility.  Now, after years of being on a gluten free diet, I realize that the neuropathy is somehow a result of the spastic colon.  After a lifetime of suppressing the discomfort, I literally no longer feel abdominal pain when the colon is in spasms until it reaches a high enough level that I will suddenly collapse from the shooting pain.  The intensity of the spasms is in direct proportion to the area of the neuropathy; toes and finger involvement indicate mild spasms whereas numbness across the cheek, below the elbow and below the knees means things are getting bad.  The size of my bowel movements always confirms the neuropathy diagnosis of the intensity of the spasms.  [Note:  Nutrasweet Artificial Sweetener also triggers the neuropathy.]

    The next specialist was a gastroenterologist who diagnosed the celiac disease.  I had presented to him only the symptoms of blood in my feces and dumping diarrhea, fearing that disclosing any more symptoms would label me again as a hypochondriac.  When the doctor was explaining the results of my colonoscopy, he commented that I had an extremely spastic colon.  Jerking my head around, I snapped, “How did you know?  I did not tell you that!”   He looked very confused that I would not have told him about such an important symptom, but even then I could not bring myself to trust him with more information.  This month, because I am now virtually symptom free, I finally found the courage to present him the list of previous symptoms with an explanation for why I had withheld important diagnostic facts.  He looked shocked at the sheer number of symptoms, which made me glad I could report that I was now substantially symptom free.

    I take some comfort from knowing that my experience has been instructive to my doctors and will perhaps make the journey easier for others who have undiagnosed celiac disease.  The life-style change was difficult, and for a year I grieved the loss of my favorite foods as if a close friend had died.  But the results are astounding!  Now that I have been gluten free for several years, my children marvel at the change in my energy level.  Last summer, our family had a July vacation to Texas during a heat wave where the temperature soared to 112 degrees one day, yet I never missed one activity and felt well at the end of the trip.  While we were playing miniature golf one afternoon, I looked up to see my daughters smiling broadly at me, and they exclaimed, “Wow, Mom!  Look at you!”  

    Although I am now 55-years-old, I look and feel younger than I did twenty years ago.  Because of the benefits of a gluten-free diet, along with the discovery of Z-coil shoes for problems with my feet, I am like a new woman!  Out of my 70+ previous ailments, I now only have the allergies and those mild, easily manageable symptoms related to the hiatal hernia, tinnitus, and Sjogren-like dryness (these last three are linked to celiac disease and might not be a problem if I had been diagnosed earlier).   

    Recently, I was carrying a 19-inch TV down the stairs, and my younger daughter rushed to help me with the load.  When I cheerfully declined her help, she stepped back and declared, “Who are you, and what have you done with my Mom?”  May all who embrace the gluten-free life-style have such spectacular results!

    Summary of All Previous Health Problems:

    • Abdominal Pain
    • Acid Reflux
    • Allergies (seasonal, mold, chemicals)
    • Alpha-1, Anti-Trypsin Deficiency
    • Anemia
    • Arthritis/Joint Pain
    • Bladder/Kidneys Infections and Pain
    • Blood in Feces
    • Bloating
    • Brittle Nails
    • Colon Polyps
    • Cystocele
    • Depression 
    • Diarrhea/Constipation Cycles
    • Dry Eyes
    • Dry Mouth
    • Dry Nasal Passages
    • Dry Vagina
    • Dumping Diarrhea
    • Ectopic Pregnancies (2)
    • Extreme fatigue
    • Eye Pain, right side with migraines 
    • Eye Sensitivity to Make-up and Lotions
    • Face Aches
    • Facial Rash (similar to lupus rash)
    • Feet/Ankle Swelling
    • Fibrocystic Breasts
    • Foot Pain
    • Frequent Headaches
    • Frozen Shoulder
    • General Malaise
    • Generalized Weakness
    • Gout
    • Hair Loss
    • Heart Palpitations
    • Heat intoleranc
    • Hiatal Hernia
    • Hoarseness
    • Hypoglycemia 
    • Hypothyroidism
    • Hysterectomy
    • Infertility Problems
    • Insomnia
    • Irritable Bowel Syndrome/Spastic Colon
    • Lack of Concentration
    • Legs Buckle
    • Low Grade Fever
    • Lung Congestion
    • Memory Impairment
    • Mental Confusion
    • Mid-Back Pain
    • Migraines, Primarily Right Side
    • Mouth Ulcers
    • Muscle Weakness
    • Muscles Spasms in Back
    • Nasal Congestion
    • Nausea in Varying Degrees
    • Neck Stiffness
    • Neuropathy in Feet and Hands
    • Night Sweats (non-menopause)
    • Numbness and Tingling
    • Occasional Asthma
    • Plantar Fasciitis
    • Puffiness/Fluid Retention
    • Purpura
    • Rectocele
    • Right Cheek Numbness and Tingling
    • Shortness of Breath
    • Sore Tongue
    • Stomach Pain
    • Stomach Polyps
    • Tinnitus
    • TMJ – Temporomandibular Joint Pain
    • Vaginal Discharges/Yeast Infections
    • Various Localized Pains
    • Weight Gain
    • White Coating on Tongue

    User Feedback

    Recommended Comments

    My story is sadly very similar. I am 55 now too and have spent a lifetime of developing coping skills to survive and enjoy life between pain and recovery sleeps. I still experience neuropathy in my hands, feet and left facial side as well as sharp pains in my left eye. And reoccurring inner ear dizziness.  My children used to have bets with their friends whether I would be awake or asleep when the arrived home from school ?. Everything I did was met with brain fog, pain and recovery time. So much  of my life was limited by the missed diagnosis of being celiac. 

    Link to comment
    Share on other sites


    Join the conversation

    You are posting as a guest. If you have an account, sign in now to post with your account.
    Note: Your post will require moderator approval before it will be visible.

    Guest
    Add a comment...

    ×   Pasted as rich text.   Restore formatting

      Only 75 emoji are allowed.

    ×   Your link has been automatically embedded.   Display as a link instead

    ×   Your previous content has been restored.   Clear editor

    ×   You cannot paste images directly. Upload or insert images from URL.


  • About Me

    Jane N Ogg

    Jane Nichols Ogg is a “domestically challenged” homemaker who lives in Martin, Tenn., with her husband, Jerald, a vice-chancellor at the University of Tennessee at Martin.  When she is not traveling 80-100 days a year with her husband and family, Jane enjoys substitute teaching and occasional public speaking at various church and community events.  She developed a greater understanding of medical jargon by working for two doctors and three hospitals before the birth of their now-grown children, Jennifer and Jana.  Jennifer and husband Kevin live in Nashville, Tenn., where Jennifer is completing her Ph.D.  in political science at Vanderbilt University.  Jana, a missionary with CATALYST Missions, leads short-term mission trips from her Antioch, Tenn., home base.


  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-m):




  • Related Articles

    Dr. Ron Hoggan, Ed.D.
    The following was prepared by Ron Hoggan:
    I have only found three reports in the literature suggesting a coincidence of the two above-mentioned conditions (1, 2, 3). And yet, I was recently contacted by Karen Brinser, whose mother had been diagnosed with celiac disease and had a section of her bowel was surgically removed due to a small bowel adenocarcinoma. Karen indicated she had ITP, and asked if there could be any connection with celiac disease.
    I responded with the three citations to journal articles, along with some comments from Cooke & Holmes indicating that the platelet count could rise in celiac disease (4) (page 122). I seem to have missed the comment, later on the same page, that the platelet count can also be considerably diminished in the presence of granulopenia. They go on to say that granulopenia is not uncommon in celiac disease, and approximately 10% of celiac patients have total white cell counts less than 3500 per cmm and approximately the same percentage have either a neutropenia of less than 3000 or a lymphopenia of less than 1500 per cmm.
    Karen took the initiative and posted to the celiac listserv asking for responses from those who have experience with both celiac disease and ITP. One parent wrote about a daughter who had previously experienced ITP, but had regained her health since the diagnosis and treatment of her celiac disease.
    A middle-aged man who had suffered from ITP during the 1960s and 1970s and was treated with corticosteroids, was diagnosed with celiac disease in 1980. His ITP also seems to have resolved.
    A woman was diagnosed with both celiac disease and ITP at the same time, three years ago. Her gastroenterologist thought the two were related as both are auto immune diseases.
    Another woman had two severe bouts with reduced platelet levels occurring at ages 38 and again at age 45. At age 59 she was diagnosed with celiac disease and now blames the celiac disease for a variety of health problems, including her bouts with abnormal platelet levels.
    Another womans ITP eventually led her astute (my opinion) doctor, after excluding leukemia, in the direction that led to the diagnosis of her celiac disease.
    A father discussed his own and his daughters symptoms of purpura, as well as some associations between celiac disease and damage to capillaries. He structured some very thoughtful, compelling arguments suggesting that abnormal WBCs and platelet counts may well be associated with celiac disease. He also indicated that his symptoms had abated on the gluten-free diet.
    Another parent had one daughter diagnosed with celiac disease. When their other daughter started to develop symptoms of celiac disease they put her on a gluten-free diet. At age five, they re-introduced wheat to her diet to see if she could tolerate it. She was subsequently hospitalized due to ITP. At the time, the parents thought the ITP might have been due to a drug reaction. The daughter was returned to the gluten-free diet due to other celiac-like symptoms, and has not had any significant health problems since. All these anecdotal reports, but in combination with Cook & Holmes comments, and the three journal articles, the possibility of a connection seems reasonable. It is at least a connection worthy of investigation, as ITP can be deadly, as can some of the other sequelae of celiac disease. Given the delays between presentation of ITP, and diagnosis of celiac disease, the former could prove to be a valuable indicator of the possibility of the latter.
    Sources:
    Kahn O, Fiel MI, Janowitz HD Celiac Sprue, Idiopathic Thrombocytopenic Purpura, and Hepatic Granulomatous Disease. An Autoimmune Linkage? Clin. Gastroenterol. 1996 Oct;23(3):214-216. Sheehan NJ, Stanton-King K Polyautoimmunity in a Young Woman. Br. J. Rheumatol 1993 Mar;32(3):254-256. Stenhammar L, Ljunggren CG, Thrombocytopenic Purpura and Celiac Disease, Acta Paediatr Scand, 1988 Sep; 77(5):764-766. Cooke W & Holmes G (1984) Celiac Disease Churchill Livingstone, NY. Nelson E, Ertan A, Brooks F, Cerda J, (1976). Thrombocytosis in Patients with Celiac Sprue. Gastroenterology 70, 1042-1044. Croese J, Harris O, Bain B,(1976). Celiac Disease. Haematological Features and Delay in Diagnosis. Medical Journal of Australia 6, 335-338. Bullen A, Hall R, Brown R, Losowsky M, (1977). Mechanisms of Thrombocytosis in Celiac Disease. Gut. 18, 962.


    Yvonne (Vonnie) Mostat, RN
    Celiac.com 05/03/2018 - Time to spring into action and take control of your celiac disease and dermatitis herpetiformis! This means I have to "Scare you Silly" about not fully conforming to the gluten-free diet. Anemia, tiredness, and vitamin deficiency will continue to dog you if your gluten-free diet is non-compliant. You know those "just can't resist" items in your diet, the ones where the ingredient list does not actually say it is gluten-free, which may leave you open to cross-contamination that is common in the food industry?
    There is an estimated three million Americans with celiac disease, yet the vast majority still remain undiagnosed. The prevalence of celiac disease in Canada and the United States is growing, not diminishing! The high prevalence of celiac disease is also found in individuals with other disorders such as Type 1 diabetes, autoimmune thyroid disease and Down Syndrome. The prevalence of celiac disease in Type 1 diabetes around the world is 3 – 16%. According to Shelley Case, Author of Gluten-Free Diet: A Comprehensive Resource Guide: "Studies by Columbia University in New York and the Canadian Celiac Association revealed that adults suffer from the disease for an average of 10 - 12 years before being correctly diagnosed." The rare, but wise, physician who has diagnosed celiac disease correctly also sends the patient to be checked for diabetes and thyroid disease. 
    Do you know what Gluten Ataxia is? Ataxia is a symptom in many conditions that affect the nervous system. Ataxia causes clumsiness or loss  of balance and coordination that is not due to muscle weakness. Ataxia symptoms can be worrisome, and more so if you have been cheating on your celiac diet. Symptoms may vary but can include:
    Trouble using fingers, hands, arms and/or/legs Trouble speaking Trouble moving eyes Poor coordination and/or balance Tingling in extremities Gait problems Damage to the cerebellum (the part of the brain that controls coordination). Gluten ataxia is a rare immune-mediated disease in which the body's immune system attacks the nervous system as a reaction to the ingestion of gluten. It is a rare condition, but it can be related to celiac disease as well as non-celiac gluten sensitivity. Those with gluten ataxia often do not always have digestive issues or other symptoms. A strict gluten-free diet usually improves symptoms for those with gluten ataxia. Early diagnosis and treatment through the gluten-free diet can help stop progression and further cerebellum damage. 
    People who have dermatitis herpetiformis know only too well what that gluten-containing doughnut or tart can do to their bodies. The DH sores are so itchy, and well, just sore, that prior to my first diagnosis I thought I had head lice and self-treated myself it on three separate occasions! Though DH is a miserable disorder to have, and the sores appear in the same places time and time again leaving scars, it at least leads to a faster diagnosis once a dermatologist sees the itchy sores, which often appear in bunches on your scalp, upper arms, shoulders and shins.  While other people are watching television you are itching at sores in your head, picking off scabs, and in general feeling very miserable until the DH sores eventually heal. A biopsy of one of the lesions by that dermatologist can show dermatitis herpetiformis, but sometimes only after two or even three biopsies. The IgA deposits remain under the skin and that is why the DH sores keep coming back to the same place in your body. They are still there, and just come to the surface when you ingest gluten. 
    Some with DH have to remain on dapsone for the rest of their lives. I have been on dapsone for over 30 years, even though I attempted on several occasions to stop taking it. To me it is a wonder drug, but one that I have to be careful not to abuse, because dapsone can cause anemia, and something similar to anorexia because when you ingest it regularly you do not feel hungry, and thus lose weight. To heavy people this may seem like the perfect weight loss program. Believe me, it isn't. It can also cause Methemaglobinemia which, when ingesting will prevent your arteries from functioning as an oxygen carrier and can seriously affect your body so that oxygenated blood does not reach your starved blood cells. You either carry a SAT Machine to measure the oxygen levels in your blood, or go to the Emergency Department where they can check your saturation levels. If below 90 they will admit you, run a battery of tests, and you may be put into a side room somewhere to get an infusion of Methane Blue to flush out your blood system, and you may need to have a blood transfusion. If you are away on holidays this can be a very serious condition where you are unaware you have Methemaglobinemia, except for a feeling of being out of breath, and NEED to get to hospital as soon as possible so your SAT levels can be monitored. 
    Scaring you straight means not cheating day after day and then hoping a few dapsone will improve the condition. It won't—if you have passed the safe guideline of one pill daily. It is not simply a matter of taking dapsone in a 5 - 4- 3 - 2 - 1 as I was advised to do by an internist when I was first diagnosed with dermatitis herpetiformis. Ingestion over five days will no longer help you, and to my chagrin, can cause the condition to worsen. It is a serious condition; you can actually die from lack of oxygen in your blood!
    These few descriptions do not cover the fall out (of your hair) and the scarring of the sores on your legs and upper arms the Prednisone that they want to give you can cause a "roid rage" similar to what weight lifters have when they purposely ingest Prednisone to build up their muscles and become extremely irritable because of the Prednisone. ONE helpful clear lotion that I have to buy across the border in the U.S.A. is Scalpacin or Renewal, the latter being the generic name for Salicylic Acid (3%) which lessens the intense itching when applied directly to the sores (not to be ingested!). It says only 3% Salicylic Acid and I will confess that when I first "latched" onto this amazing "scalp itch and Dandruff relief liquid" I often applied twice daily to all the sores in my scalp and on my body.
    Did you know that approximately 3% of the general population in the U.S.A., according to Dr. Peter Green, have celiac disease? Once a patient develops one autoimmune condition the odds of developing another are greatly increased. Autoimmune disorders run in families, and different diseases may affect different parts of the body. A friend of our grandson was diagnosed as having celiac disease simply because she went to her doctor with complaints of a stomach ache. The doctor could have easily asked her if she had exams coming up, sent her for a blood test to rule out an appendicitis and left it at that, but he was a wise doctor who asked more questions and ordered the celiac blood tests. When that cameback positive he actually followed it up with a biopsy of the jejunum. She, as a teenager, was positive for celiac disease, but that doctor could have easily not ventured past the  stomach ache at that first visit and gone no further with his investigations. Fortunately, vigilance paid off this time. 
    He was thorough enough to refer her to a dietitian, but you know, she still cheats! I believe the reason she cheats is because she does not suffer from any of the symptoms of celiac disease right now, and does not have dermatitis herpetiformis. Amazing how vigilant you become with your diet when you break out in painful sores over 25% of your body, and experience diarrhea, stomach aches, nausea and vomiting!
    We never got into the other diseases she could possibly get from cheating on the gluten-free diet. Sjogren's Disease, Turner Syndrome, Type 1 diabetes, Williams Syndrome, Juvenile idiopathic arthritis, lactose intolerance, migraines, peripheral neuropathy, liver disease, are but a few of the disorders that can be connected to celiac disease. Have you ever looked up the symptomatology of these autoimmune diseases? Time you did!
     
    Did you know that there is a Celiac Disease Center at Columbia University which is one of the leading authorities for unexplained infertility issues, and that the prevalence of celiac disease in women with unexplained fertility is higher than the general population? Celiac disease may also be asymptomatic, meaning you show no symptoms at all. This is one of the reasons why it may be difficult for some people and their doctors to connect the dots between celiac disease and unexplained fertility.  
    I worked with obstetrician/gynecologists for years and never found one that, when doing the laboratory testing, included a test for celiac disease, yet it is common knowledge now that a celiac disease screening should definitely be part of the work-up that is done for infertility issues. People of reproductive age spend an enormous amount of money, time and energy trying to become pregnant and carrying the baby to term. There are more women depressed because they cannot conceive or those that cannot bring a baby to term. Several studies over the past ten years have found a link between celiac disease, infertility and spontaneous abortion. It is not known yet whether the nutritional issues (malabsorption) that occurs with untreated celiac disease is the cause of the reproductive issues, or if the immune system may be to blame.
    Many doctors define infertility as the inability to get pregnant after one year of unprotected sex. In women, fertility difficulties often result from a problem with ovulation, while in men, infertility usually occurs because the man does not produce enough sperm or produces abnormal sperm. Note that undiagnosed or untreated celiac disease can lead to a host of seemingly unrelated problems, including osteoporosis, depression, and anemia. Medical researchers “along with some observant obstetrician/gynecologists are realizing that undiagnosed celiac disease may also be a cause of otherwise unexplained infertility in both men and women."  A study undertaken in England, which has one of the world's largest celiac populations, indicates that fertility often returns after you start the gluten-free diet. 
    There are many causes for infertility, but up to 30 percent of couples who are infertile will be told that no specific reason for their infertility can be found. When this happens a diagnosis of unexplained infertility is given. In recent years, awareness of celiac disease has increased. You may not be able to quote "Celiac Disease is a chronic autoimmune disorder", but it is a good sentence to spread around to those who ask you, "Do you follow the gluten-free diet because it is trendy or you want to lose weight"? As awareness for celiac disease has increased, some researchers have started looking at a possible like between celiac disease and unexplained infertility.
    Some of the known causes are:
    Low sperm count, - sperm with mobility or motility issues Enlarged veins in the scrotum called varicocele. Klinefelter syndrome, a genetic disorder.  Although Klinefelter syndrome carries with it the risk testicular cancer, autoimmune diseases have been associated with this disorder, which is a chromosomal disorder. KS might increase the risk of some autoimmune diseases. It has been suggested that some autoimmune diseases may be more common in people with Klinefelter syndrome than in others, but the evidence so far is sparse. A research paper out of Oxford, England entitled "Associations between Klinefelter's Syndrome and Autoimmune Diseases” came to the conclusion that those with Klinefelter syndrome have increased risk of some autoimmune diseases. 
    If you have the test for celiac disease, at least the blood test, and if your partner has the ultrasound done for it you can go into the obstetricians office with a list of questions, including family history, research you have undertaken yourself.  I have seen so much heartache while nursing, watching a couple lose their baby prior to delivery, and those than cannot conceive but cannot afford invitro- fertilization. The damage that undiagnosed or untreated celiac disease can result in ongoing gastrointestinal symptoms such as vomiting, chronic diarrhea, stomach pain, and cramps. A number of these symptoms may also affect the reproductive system of women, for example:
    Delayed onset of menstruation Irregular periods No periods at all, known as amenorrhea Chronic pelvic pain And yes, endometriosis (where part or parts of the uterine lining attaches itself to the uterus and begins to grow) needs to be mentioned here. Many women who have this painful disease have been told that their only way of ridding themselves of this very painful disorder is to get a total hysterectomy. This is not always the case. There are now medications to help rid the uterus of endometriosis. Many obstetricians will perform a laparoscopy to determine the extent of the endometriosis, endeavour to lyse the adhesions from the wall of the uterus. Often this is all that is needed to ensure an introduction from the egg to the sperm and conception takes place. Other, more difficult cases can be referred to an infertility specialist, but be prepared for large costs. Many infertility specialists will tell you that if you can obtain a pregnancy while still struggling with endometriosis it often alleviates the problem. 
    Did you know that men with celiac disease may have gonadal dysfunction, which could complicate fertility issues? (That was a big learning surprise for me!) This ultrasound test can be ordered by your family physician, a gonadal ultrasound to rule out a cystocele. Finding out that your husband has a cystocele is not Earth shattering—it involves a small corrective surgery. 
    Did you know that Semen issues (specifically sperm morphology) found in men with celiac disease improved after following a gluten-free diet? Few studies have been conducted on celiac disease and male infertility. There is also a lack of scientific information and research studies on the potential link between non-celiac gluten sensitivity (NCGS), also commonly referred to as "gluten intolerance" and infertility. While research needs to be done, those with non-celiac gluten sensitivity are thought to possibly be at an increased risk of reproductive issues. However, the connection between NCGS and infertility is not yet known or proven.  One case review did suggest that a strict gluten-free diet may improve fertility for those with NCGS. 
    According to Healthline experts do not fully understand the effects of celiac disease on the reproductive system. The effects may be caused by malabsorption of nutrients, the impact it has on the immune system, or another currently unexplained reason. Some studies have noticed a link in untreated celiac disease in the mother and recurrent miscarriage, pre-term birth, and low birth weight.  In a meta analysis that looked at studies on infertility and celiac disease, researchers noted that women with infertility were over three times more likely to have celiac disease than the control group. You have to admit that is a large number, and what upsets me is the fact that numerous obstetrician/gynecologists do not automatically send this part of the women's population for celiac disease screening. 
    Yet women with unexplained infertility, were six times more likely to have celiac disease than women in the control group. Despite these studies, not all experts in the field are convinced about the connection. They state that more research is needed. BUT wouldn't you want to know that there is strong evidence that infertility and celiac disease are connected, and at least make your own decision with regards to getting tested? The tests undertaken by people with infertility are difficult to endure, are not only embarrassing but invasive. If celiac disease or gluten sensitivity runs in your family, or you suspect you have celiac disease, make a list of your symptoms. You'll want to discuss your concerns with your doctor and ask to be screened for celiac disease. A Reproductive Endocrinologist is who you would be referred to here in Canada, but you may have another title in the United States.
    If you are vigilante about eliminating gluten from your diet, you will stop the damage celiac disease is doing to your body. This may include lessening or eliminating the impact it may be having on your reproductive system.
     
    Sources:
    https://www.ncbi.nim.nih.gov/pubmed/25564410 Celiac Disease A Hidden Epidemic,  Dr. Peter H.R. Green American College of Obstetricians and Gynecologists (ACOG) Resource Center: http://www.acog.org American Society for Reproductive Medicine: http://www.asrm.org  Reproductive Changes Associated with Celiac Disease: https://www.ncbi.nim.nih.gov/pmc/articles/PMC3001971/  Healthline https://www.ncbi.nml.nih.gov/pmc/articles/PMC4600520/ 


    Jefferson Adams
    Celiac.com 11/07/2018 - A team of researchers recently set out to explore the relationship between dermatitis herpetiformis, as a common extraintestinal manifestation of celiac disease, and a gluten-free diet as a path to overall dermatitis herpetiformis improvement.
    The research team included Timo Reunala, Teea T. Salmi, Kaisa Hervonen, Katri Kaukinen and Pekka Collin. They are variously affiliated with the Celiac Disease Research Center, Faculty of Medicine and Life Sciences at the University of Tampere, the Department of Dermatology, Tampere University Hospital, the Department of Internal Medicine, Tampere University Hospital, and with the Department of Gastroenterology and Alimentary Tract Surgery, Tampere University Hospital in Tampere, Finland.
    Dermatitis herpetiformis is a condition marked by itchy papules and vesicles on the elbows, knees, and buttocks. Dermatitis herpetiformis is a common in people with celiac disease.
    People who have just dermatitis herpetiformis alone rarely have obvious gastrointestinal symptoms. Dermatitis herpetiformis is easily diagnosed by immunofluorescence biopsy showing pathognomonic granular immunoglobulin A (IgA) deposits in the papillary dermis. 
    One theory currently in play is that dermatitis herpetiformis is triggered by celiac disease in the gut and eventually develops into an immune complex deposition of high avidity IgA epidermal transglutaminase (TG3) antibodies, together with the TG3 enzyme, in the papillary dermis. 
    The age at which people are diagnosed with dermatitis herpetiformis has risen steeply in recent decades to the current average of 40–50 years. 
    The researchers found that the ratio of dermatitis herpetiformis to celiac disease is 1:8 in Finland and the United Kingdom (U.K.). Additionally, the incident rates of dermatitis herpetiformis are currently 2.7 per 100,000 in Finland and 0.8 per 100,000 in the U.K., is decreasing, whereas incidents of celiac disease are on the rise. 
    One positive finding is that Dermatitis herpetiformis patients who are on a gluten-free diet face an excellent long-term outlook, with an even lower mortality rate than the general population.
    Read more in: Nutrients 2018, 10(5), 602; doi:10.3390/nu10050602


    Jefferson Adams
    Celiac.com 01/28/2019 - Research shows that people with celiac disease have an increased risk of bone fractures, compared to the regular population, but there's not much good data on fracture risk in patients with dermatitis herpetiformis. A team of researchers recently compared self-reported bone fractures in patients with dermatitis herpetiformis against those with celiac disease. 
    The research team included C Pasternack, E Mansikka, K Kaukinen, K Hervonen, T Reunala, P Collin, H Huhtala, VM Mattila, and T Salmi. In all, they looked at self-reported fracture rates in 222 dermatitis herpetiformis patients, and in 129 control subjects with celiac disease. 
    The team provided a Disease Related Questionnaire and the Gastrointestinal Symptom Rating Scale and Psychological General Well-Being questionnaires to study members. They received 45 replies from the 222 dermatitis herpetiformis patients, and 35 replies from the 129 celiac disease control subjects. All patients had experienced at least one fracture. 
    Overall, cumulative lifetime fracture rates were about the same for both dermatitis herpetiformis and celiac disease patients. 
    Fractures More Common in Women with Celiac Disease
    However, when the team looked at the cumulative incidence of fracture after disease diagnosis, they found a significantly higher risk in women with celiac disease than in women with dermatitis herpetiformis. 
    Acid Reflux and Proton-Pump Inhibitor Connection
    Interestingly, both dermatitis herpetiformis and celiac disease patients with fractures reported more severe reflux symptoms compared to those without. Dermatitis herpetiformis and celiac disease patients with fractures also reported using more proton-pump inhibitor medication. More research needs to be done to explore this connection.
    To sum it up, self-reported lifetime bone fracture risk is about the same for both DH and celiac disease patients. However, after diagnosis, fracture risk is higher in women with celiac disease than in women with dermatitis herpetiformis.
    This means that women with celiac disease need to work with doctors to keep a tight eye on bone integrity, even when eating a gluten-free diet.
    Source:
     Nutrients. 2018 Mar 14;10(3). pii: E351. doi: 10.3390/nu10030351


  • Popular Now

×
×
  • Create New...