BUT WAIT! ..... There's more! Part 1

Yes, there is more! The "Dreaded List" was only about what my daughter and I deal with because we have Ehlers-Danlos Syndrome Hypermobility Type (EDS-HT).

On top of all the things that I listed for our EDS-HT condition, my daughter and I also deal with 2 major autoimmune diseases and 3 immune/possibly-autoimmune diseases, as well as an Endocrine System Metabolic Syndrome that effects our Thyroid, Pancreas, blood sugar, and so forth, and runs through the female line of my Sicilian family. I am not talking about just diabetes, but a whole cascade of hormone problems relating to the Endocrine system as a whole. As far as we can discern, these categories do not belong to the vast array of disorders that are linked or caused by EDS-HT, even though there is mounting evidence that EDS-MT may, in of itself, be an autoimmune disease as well. These categories seem to stand on their own, though they do cross over in some cases, such as with the thyroid.

AUTOIMMUNE DISORDERS:

1. Hashimoto's Thyroiditis: "or chronic lymphocytic thyroiditis is an autoimmune disease in which the thyroid gland is attacked by a variety of cell- and antibody-mediated immune processes, causing primary hypothyroidism (low thyroid). It was the first disease to be recognized as an autoimmune disease. It was first described by the Japanese specialist Hakaru Hashimoto in a paper published in Germany in 1912." - https://en.wikipedia.org/wiki/Hashimoto's_thyroiditis (Hashimoto's comes under both our autoimmune list AND our endocrine metabolic syndrome list).
   
   My daughter and I seem to need to be treated with not only T-4 (standard thyroid hormone), but T-3 as well (the hormone that our body is suppose to convert T-4 into so that it can be used, but does not). Why this is so is still a mystery, and the use of T-4/T-3 to treat low thyroid is still a controversy in the medical community, but many studies and many more personal antidotes show that those who take both like it and say they do better (as we did).T-3 when taken with some SSRIs (anti-depressants often called: Selective serotonin re-uptake inhibitors) help the anti-depressant relieve depression better. Depression is a major symptom of low thyroid to begin with. According to the American Thyroid Association: "The extent of T4-to-T3 conversion varies from one organ to the other, but in some organs, like the brain and pituitary, this process provides most of the T3." In light of the controversy of T-3 treatment, I find that statement especially interesting. There is growing research about an auto-immune disorder that swells the front portion of the Pituitary, and its role in a cascade of auto-immune disorders throughout the endocrine system in some people and their families. This "cascade of auto-immune disorders" nearly matches the auto-immune diseases that my daughter, my family, and I have, which may explain why treating our Hashimoto's with T-3 is successful. The down side is that currently the only way to diagnose this particular pituitary disease is by autopsy. Not something we are yet willing to personally sacrifice at this time ..... at least while still alive, that is ....
   
   Another unusual connection we found was that when we discovered the Celiac disease we have, and went on a gluten free diet, my daughter's thyroid eventually recovered and she no longer has to take thyroid medication and does not seem to have any of the symptoms any more. Researching this the other day I found that this is not new nor abnormal. There are still studies going on about it and why, but there seems to be enough reported occurrences to warrant further study and hope for those in the early stages of Hashimoto's. The link between Hashimoto's and Celiac disease is already well established. Unfortunately, my thyroid was apparently to far gone to recover, and still gets worse with each passing year despite sticking to a strict gluten free diet.
   
   Some of the symptoms my daughter and I, on the average, suffer(ed) from with our Hashimoto's are/were:
   
   • Low Normal Thyroid Level Test Results: I went over 20 years un-diagnosed and untreated for my Hashimoto's because my tests always came out very low normal. Virtually right on the low /normal thyroid line. I had studied the disease and the symptoms, knew I had it, but was ignored by all my doctors because of the test results of my thyroid levels. This is particularly disturbing in that, according to Johns Hopkins Medical of Baltimore: "Untreated hypothyroidism may lead to anemia, low body temperature, and heart failure." Long after I was finally diagnosed my Endocrinologist said that when he was a young doctor he was a purely numbers man, but after 20 years he became a doctor who looked at the numbers, then asked the patient how they felt. He would then, depending on this info, do a trial hormone T-4 treatment and see if it helped and go from there. It was from patients like my daughter and I that he learned that the numbers could be deceiving. So deceiving that in my daughter and mine's case, she had low normal, but tested positive for the anti-thyroid anti-body, and I, who was by then showing very low thyroid levels, came up negative for the anti-thyroid anti-bodies (which 15% of all Hashimoto's patients seem to do). We now joke that if there is a % of patients that will not show up on a test, even though they have the disease, I will be in that percentile. It happens to me a lot! As I mentioned in one of my earlier posts, my late doctor laughing stated that if my body can do it backwards, it will! So far, that seem to still be true ....
   
   
   • Fatigue: The Hashimoto's seems to become active during puberty, or for my family, during high stress and/or serious illness. For my daughter and I, it was puberty. As part of that, we became extremely tired all the time, no mater how much we slept. By the time my daughter was 14 or 15 she could barely get out of bed. I suspected she had my thyroid disease, but her pediatricians would not listen to me. It took firing them and taking her to my rheumatologist at the age of 16 to get her diagnosed. The minute she started taking the thyroid pills, she woke up and got our of bed for the first time in 2 years. I was not that bad, but I was exhausted for over 20 years before my thyroid pooped out and THEN I was believed, and began treatment. It was horrible having all the major systems and not being able to get the proper treatment because of a faulty understanding of the test results in relation to the disease.
   
   
   • Weight Gain: As children, my family is super skinny. Come puberty, and we not only begin to put on the normal weight needed to trigger puberty, but we never stop and no dieting in the world will stop the weight gain.
     
     One of the things about all this that I still get from doctors, and which still chafes me, is the often violent and snarling accusation of self-dilution from doctors over my claim that going for 20 yeas un-diagnosed and untreated with Hoshimoto's is what was the major cause of my initial weight gain. Why? Because since starting treatment I have yet to loose weight, thus, A-huh!, it obviously can not be true, for if it was, I would have lost weight. If I try to talk about the fact that I was a dancer in intense daily training, and dieting at the same time when I first gained weight, as well as about the complex nature of my condition and endocrine system, and the generations in my family afflicted with this, my claim is summarily dismissed and I am contemptuously snub as someone who is oblivious to the truth: That I eat to much and that, and only that, is and was the cause for my weight gain. Discussion over! (see more on this generational phenomenon in my family below in the Endocrine System Metabolic Syndrome section).
   
   
   • Cold Intolerance: Being cold, and being susceptible to the cold, has been a life time issue since puberty. It was worse before we were treated for the Hashimoto's. And, it was also not an issue at all during menopause for me. It was rather nice walking around during the winter with my internal heater keeping me warm!
   
   
   • Low Basel Body Temperature:  Besides feeling cold all the time, low basal body temp is a known symptom, and problem. It is popular right now to equate low basal temp with proof of low thyroid function. I tend to agree with most scientist and doctors that that is a mistaken use and understanding of the low temp in hypothyroidism. Yes, you can have a low body temp with hypothyroidism, but in of itself, that alone is no proof. It needs to be in conjunction with other symptoms, physical features, and test results. I had the extreme low normal thyroid level, the symptoms and physical features listed here, AND a basal temperature of 97.0 F. Well below the new normal range. All taken together it was obvious what was going on, but back in the 1970-90s, doctors relied on the test numbers only and ignored what the patient was actually displaying and experiencing, especially if you were a woman, and heavens forbid, overweight while being female as well. Today, my basal temp is higher, but still lower than 98.6 F, usually by one whole degree more or less, on average.
   
   
   • Sparse, Coarse, and Dry Hair: Not sure about this because I think thinning hair is just an inherited feature of my mother's family. But if I do not take extremely good care of my hair, I do get this very badly. And besides, my daughter's hair is thick and luscious, and below her waist. She takes after her dad, lucky girl!
   
   
   • Heavy Menstrual Flow or Irregular Periods: >My daughter and I have/had this "in spades".
   
   
   • Depression: Yap, here it is again. So much of what we deal with have "depression" as one of the symptoms. Which is why it is so hard to treat in us.
   
   
   • Droopy Eyelids: I have had this since puberty. Doctors still ask if I can see alright; does it interfere with my ability to see. Nope, not that I can tell. Though it does keep the sunlight from hurting my eyes so much.
   
   
   • Goiter: Despite having all of the above, I also had a small goiter that was not found until I saw my first endocrinologist as an adult. He was surprised that it had not been found before. I always wondered, and I asked about why this thing called the thyroid in my throat clicked back and forth across my esophagus. It was a bit painful at times, but mostly annoying and it would catch sometimes before popping over to the other side when I turned my head. I simply got snickers from the doctors examining me (nearly all male), and was told that I just had a rather masculine Adams Apple. Since going on hormone treatment, my enlarged thyroid is now all gone.


2. Celiac Disease: Oh Celiac, oh Celiac, how do thee embrace my life? Let me count the ways ... no really, let me! Of all the things that I thought were medically wrong with us, I truly never thought it would be the inability to consume gluten that would be one of the biggest culprits. I am half Italian, for Christ's sake, and raised on my Italian-American mother's wonderful cooking! We lived on pasta and sour dough french bread most of our lives! They were the mainstays of our diet. I now shutter when I think about it.
   
   Just what is Celiac disease? I ask you this because with all the info and hysteria floating around about gluten, most people totally miss-understand it, or simply deny it even exists, even many doctors still today pooh pooh it. Gluten gets a bad rap. People equate it to a toxin, they believe they would be healthier without it, and other such misinformation. Gluten, is a very important and viable source of plant based protein! UNLESS you have the genetic autoimmune disease for Celiac and/or Gluten Sensitivity. "Gluten is the composite of two storage proteins, gliadin and a glutenin, and is conjoined with starch in the endosperm of various grass-related grains. Worldwide, gluten is a source of protein, both in foods prepared directly from sources containing it, and as an additive to foods otherwise low in protein ... True gluten is limited to certain members of the grass family. The stored proteins of  maize and rice are sometimes called glutens, but their proteins differ from true gluten." - https://en.wikipedia.org/wiki/Gluten
   
   Gluten is NOT a toxin by any shape or means. It is a protein that the immune system mistakes for a undesirable foreign body and sends out anti-bodies to attack and destroy it, if you have the genes in your DNA that do that. IT IS A MISTAKE THE IMMUNE SYSTEM MAKES! I can not stress that enough. Why Celiac is so destructive, and why people get confused about the toxin issue is the fact that the process of destroying the gluten, and some of the by-products from the destruction of said gluten, leave behind chemicals, toxins if you will, that do the actual damage to the villi of the intestines. It is not the gluten that damages the villi by just being present. It is the body's act of destruction that causes the damage, and leaks toxic by-products of that processes into the body as a whole, possibly raising the chances for stomach and other cancers. What is the actual causes of Celiac disease and the damage it does to the intestines and the body itself, is both complex and illusive. There are genetic elements, most likely environmental elements (research shows that something changed in the 1950s causing a 10 fold spike in gluten intolerance markers in the blood), other possible chemicals in wheat that cause or contribute to the resulting symptoms and damages (such as FODMAPs, an acronym for: fermentable oligosaccharides, disaccharides, monosaccharides, and polyols.), and so forth. Much research is still needed to understand and treat this disease, BUT until so, gluten is not the big bad that most people think, except for those small % of people that have Celiac disease, or demonstrate a true sensitivity. Eliminating gluten from your diet is not the magic bullet to a healthier life for most people, and can in fact be detrimental to your overall health and nutrition.
   
   I will get off my soap box now, and get on with the matter at hand: How Celiac Disease Impacts My & My Daughter's Lives, & When and Where A Gluten-Free Diet Helped. Looking over the list as provided by the Celiac Disease Foundation, most of it is just a re-hashing of symptoms and disorders I have already listed here above, and in the EDS-HT list. Hence again why my daughter and I call ourselves onions! I will try to make this brief:
   • Gastrointestinal: "Abdominal pain and cramping, bloatedness with abdominal distension (thought to be due to fermentative production of bowel gas) .... As the bowel becomes more damaged, a degree of lactose intolerance may develop. Frequently, the symptoms are ascribed to irritable bowel syndrome (IBS), only later to be recognized as coeliac disease; a small proportion of people with symptoms of IBS have underlying coeliac disease, and screening for coeliac disease is recommended for those with IBS symptoms." - https://en.wikipedia.org/wiki/Coeliac_disease
     
     For me it started out as painful recurring constipation in my teens with bloating and gas, and finally severe abdominal pain that would keep me up all night and/or double me over. Before going on the gluten free diet, I would look down at my protruding, 9 month of pregnancy looking, stomach and ask when I was going to give birth to this thing that I had been caring around for decades. It became so painful that I often wondered if my gut would burst wide open.
     
     Funny thing about all that. Not funny ha ha, funny ironic. During my late twenties and early thirties I had two separate intestinal x-rays (something they use to do as part of a regular physical back in them olden days), both times the radiologist commented on the abundant gas present in my intestines. One went so far as to comment on the fact that he had never seen someone with so much gas before. But when I tried to ask questions about this, because I was also having pain and bloating, I was immediately cut off and told not to worry about it. They actually seemed both upset that they were heard and afraid to answer my question. I always got the impression they were afraid of instilling concern were they thought non was, thus nipping the potential for hypochondria and hysteria to take root. That was about 20 years before we finally realized we had Celiac disease. Thatwas 20 more years of damage, risk of cancer (such as lymphoma), and the aggravation and creation of other debilitating autoimmune diseases.
     
     Later in life, my gut issues developed into constant diarrhea for about a decade (bet you wanted to learn about that one! Ha!), with occasional abdominal pain that I would break out in a sweat, and if I was standing, it would bring me to my knees. Can't tell you how many walls I have slowly slide down, nor the half hour I once spent on the floor of a bathroom because I could not move. No one ever found me. Very scary experience laying there alone, unable to get help and feeling like your gut is going to leap out of your belly like the creature from the movie "Alien".
     
     My daughter had many of the same experiences, but I believe the damage was a lot less because she went on the gluten free diet at the age of 26, where as I was 51 at the time. I still have GI problems because the damage, I believe, was to severe to heal completely, and because of the stomach acid suppressors I take, that I am now very susceptible to bacterial infections (food poisoning) and parasites. I go to two or more Pot Lucks each month, and would get mild food poisoning symptoms for a day or two afterward, including a mild fever. Since I made the connection between the post-lucks, and occasionally eating out, I have begun to be very cautious about the cooked and raw food I eat away from home. I have not had as much of a problem since, save for the three years I had Giardia from a Pot Luck, until I figured out what it was and took treatment ... sigh! Hence, one of the wonderful side effects of untreated Celiac disease and the life long damage, and threat to your health, it can cause.
     
     All in all, the minute we went on the gluten free diet most of our gut issues either cleared up for the first time in years, and in some cases decades, or got extremely better. My daughter and I have been on a gluten free diet for 10 years now, and even the smallest amount of gluten makes all our gut symptoms come back with a vengeance. I also believe that at this point in my life I still suffer from IBS. So to say the least, I am very, very careful these days, but even then mistakes are made. For example, I recently went through a longish bought with returned gut issues and it took months to find the product that was the source of the cross contamination. Once found and eliminated, it once again cleared up, but I am seeing longer and longer lingering symptoms after each gluten contamination incidence, which does not bode well for my GI tract.
   • Malabsorption (In General): "The changes in the bowel make it less able to absorb nutrients, minerals, and the fat-soluble vitamins A, D, E, and K." - https://en.wikipedia.org/wiki/Coeliac_disease
   • Megaloblastic Anemia: "is an anemia (of macrocytic classification) that results from inhibition of DNA synthesis during red blood cell production. When DNA synthesis is impaired, the cell cycle cannot progress from the G2 growth stage to the mitosis (M) stage. This leads to continuing cell growth without division, which presents as macrocytosis. Megaloblastic anemia has a rather slow onset, especially when compared to that of other anemias. The defect in red cell DNA synthesis is most often due to hypovitaminosis, specifically a deficiency of vitamin B₁₂ and/or folic acid." - https://en.wikipedia.org/wiki/Megaloblastic_anemia
     
     About 5 to 8 years (or more), before my daughter and I went on the gluten free diet, I developed a very severe and nearly untreatable case of Megaloblastic Anemia. My doctor explained to me that my bone marrow had stop producing red blood cells at the rate it should, but had no clue as to why. I ended up on, if memory serves me, 7X the normal treatment dose of iron, with no improvement. Then my doctor told me that I should add 500 MG of vitamin C with my iron, but if that did not work, he would have to start iron shots. Not a good thing that! Thank goodness adding the vitamin C pushed my blood count one or two points into the normal range. Heaven forbid I should forget my iron and C, because I would once again plummet into anemia.
     
     When people scoff at me for being on a gluten free diet, and they often do, I tell them the story of my Megaloblastic Anemia, and how it took being on the diet for a whole year before my anemia was cured (rather dramatically and suddenly), and that since then my blood count tests have been perfectly smack in the middle of the normal range and I have not needed iron supplements since that day. That usually makes them pause and reconsider.
   • Immune & Autoimmune And/Or Correlated Disorders: "Coeliac disease is associated with a number of other medical conditions, many of which are autoimmune disorders." - https://en.wikipedia.org/wiki/Coeliac_disease Some of those diseases that we do have, or know about, and have been impacted by Celiac and a gluten free diet, are:
     • Hashimoto's Thyroiditis: Detailed info above. HT and Celiac are closely tied, as are many autoimmune diseases. Autoimmune diseases tend to run in packs, so if you have one, you are often at a very high risk of having or developing multiple others. As detailed above, my daughter's Hashimoto's disease seems to have either cleared up or become doormat since going on a gluten free diet.
     
     
     • Eczema: "Eczema is a term for a group of medical conditions that cause the skin to become inflamed or irritated. The most common type of eczema is known as atopic dermatitis, or atopic eczema. Atopic refers to a group of diseases with an often inherited tendency to develop other allergic conditions, such as asthma and hay fever." - http://www.webmd.com/skin-problems-and-treatments/guide/atopic-dermatitis-eczema
       
       I have had head to toe Eczema since I was 7 years old. My daughter, since she was 3 or 4 years of age. Since going on a gluten free diet our Eczema has virtually cleared up, with only occasional small flair ups, usually when we accidentally ingest gluten. See below for more about the immune-autoimmune nature of Eczema.
     
     
     • Asthma: "A triad of atopic eczema, allergic rhinitis and asthma is called atopy. The strongest risk factor for developing asthma is a history of atopic disease; with asthma occurring at a much greater rate in those who have either eczema or hay fever." - https://en.wikipedia.org/wiki/Asthma
       
       Like a lot of kids with Eczema, I developed asthma around age 13. All my life it has been anything from mild, to severe, to nearly killing me more than once. Since going on a gluten free diet, my asthma has greatly improved, and most of the time I do not need my inhaler, except during peak air borne allergy seasons: Spring and Fall. My daughter's asthma has also improved since going on the diet. See below for more about the immune-autoimmune nature of asthma
     
     
     • Hay Fever & Other Air Born Allergies: As with the asthma, I use to be so bad that I had to be on an all day, 24 hr allergy medication, just to be able to breath, and not drown in my own snot. After going on the gluten free diet I no longer need the medication, except for occasional season flairs. No more yearly multiple cases of bronchitis and pneumonia, thank goodness.

IMMUNE / AUTOIMMUNE SUSPECT DISEASES: 

Although eczema, asthma, and hay fever/air born allergies are not yet listed as autoimmune diseases, the evidence is beginning to pile up that show that they most likely are, but for now they are still listed as an immune over-reaction. Despite that fact, and the findings from new research, I have included them here. More over, "Allergy and autoimmunity result from dysregulation of the immune system. Until recently, it was generally accepted that the mechanisms that govern these disease processes are quite disparate; however, new discoveries suggest possible common pathogenetic effector pathways ... The presence of autoantibodies in some allergic diseases suggests an autoimmune basis for these conditions. Because of the central role T cells play in immune reactivity, the T cell receptor loci have long been considered important candidates for a common disease susceptibility within the immune system such as asthma, atopy, and autoimmunity. Immunomodulation is the key to successful treatment of asthma and autoimmune conditions." - http://www.ncbi.nlm.nih.gov/pubmed/14646381

1. Eczema: As mentioned above, Eczema "is a term for a group of medical conditions that cause the skin to become inflamed or irritated. The most common type of eczema is known as atopic dermatitis, or atopic eczema." In the medical community it use to be believed that eczema was merely a topical irritant because you had hypersensitive skin and you may also be over emotional as well. Yet, "up to 50 percent of children with atopic dermatitis will develop other allergic diseases, including asthma, a phenomenon termed the “allergic march,” the gradual acquisition of co-existing allergic diseases.[Source]"... In the past few years research has shown that eczema shares many of the features and other properties of autoimmune diseases:

   "A fundamental question regarding the allergic march is if a child has eczema, for example, which is associated with TSLP production in skin cells, why would some of those children subsequently be more susceptible to other allergic diseases at different sites of the body such as the gut or the lung?" asks Artis. "Although we have known that TSLP is associated with allergic diseases for many years, how this biological messenger might influence multiple allergic diseases has been a puzzle." - ["Thymic stromal lymphopoietin (TSLP) is a protein belonging to the cytokine family. It is known to play an important role in the maturation of T cell populations" ... "Cytokines, a varied group of signaling chemicals in the body, have been described as the software that runs the immune system, but when that software malfunctions, dysregulation of the immune system can result in debilitating autoimmune diseases"]
   
   The origins of the present study lie in previous reports that showed that different versions of the gene encoding TSLP, an inflammation-producing cytokine, are associated with increased susceptibility to multiple allergic disorders, and that exaggerated TSLP production is associated with asthma, eczema, and food allergies in children. Together, these studies indicate that TSLP could be a critical regulator of multiple cytokine-associated allergic inflammatory diseases. - http://www.uphs.upenn.edu/news/News_Releases/2011/08/allergic-march/

   For my daughter and I this meant an array of mild to severe skin eruptions, lesions, and blistering. These ranged from dry rashes to open, weeping, putrefying wounds. At some points of my childhood these skin eruptions and rashes covered over 50% of my body, more or less. I use to call it my own personal leprosy. The itch is almost undiscribable. It attacked the nerves, and felt like it was all the way into the bones. I would often scratch till my skin would shred and bleed. The only thing that would stop the itching was to dig my nails deep into my skin till the itch stopped, or running scalding hot water over the area till the skin was nearly seared and the pain was too great to continue. But it would stop the itching and allow me to apply cream or ointment before it all started over again.
   
   These were not itchy dry rashes or bumps. These lesions were raw open flesh that often had a bad odor and leaked amber colored fluid that would dry into a crystallized crust. I had red raw rashes on my eyelids (as well as my face and behind my ears), and as I slept, the same amber fluid would leak out along the edge of my eyelids, gluing them shut. By morning I could not open my eyes. I would have to pick and pull bits and pieces of the crystallized crust from my eyelids, often tearing out eyelashes at the same time, until I could finally open my eyes. Another time, in 5th grade, I had tiny blisters running along the sides of my fingers that itched all the way to the bone. At the same time my hands would dry out, the skin would crack open bleeding, and along the bottom of my fingers the skin would rip open in bloody lengthwise slashes on the flat area between each joint. I could not bend my fingers without causing them to bleed, so I devised a form of bracing using popsicle sticks. I would slather my fingers in Hydrocortisone cream, then lay my fingers along the sticks and held them in place by wrapping gauze around my fingers and the sticks. Very hard to write when all 10 of your fingers are taped flat to popsicle sticks. I must have looked very odd, yet no one, that I remember, every said a word. Not even the teachers. I did find decades later in my school records that the school had been hounding my mother to take me see a doctor when I was in 1st or 2nd grade. Back then we had no insurance, but eventual after my mother remarried and we had Kaiser, the school stopped bugging her to take me to a doctor. I was not aware of any of this, other than my mother accusing me of causing the disease because I was to "emotional". She always made a fuss about how unpleasant it was taking care of me and my Eczema, always saying or implying that I just did not try hard enough to get better. I learned at a very young age to doctor myself most of the time.
   
   Besides the itching, there was stinging and burning, as well as infections in the open wounds. My daughter had the same types of lesions, but it did not cover as much of her body. Suffice it to say, it was pure torture. It was by far one of the major nightmares and emotional scarring of my childhood. Yet, when we went on the gluten free diet, our eczema went into remission. We now have only very rare, and small flair ups, especially after inadvertent gluten digestion. We still have Eczema, but it is nothing like it was when we were children.



2. Asthma: Asthma as a paradigm for autoimmune disease: "by looking at the key elements that regulate the immune response in both asthma and autoimmune conditions: mast cells, antibodies, T cells, cytokines, and genetic determinants. The parallel appearance of asthma and autoimmune conditions in the same patients may reveal that such aberrations of the immune system have a common pathophysiologic mechanism. Mast cells, which play a key role in asthma, and the wealth of inflammatory mediators they express, make it likely that they have profound effects on many autoimmune processes. Activation of protein kinases by inflammatory cytokines and environmental stresses may contribute to both allergic and autoimmune diseases." - http://www.ncbi.nlm.nih.gov/pubmed/14646381
   
   So, along with the type and severity of the eczema that we had, along came the requisite asthma in our early teens. It started out mild, then seasonal, then finally, for me, brought on by running or other outdoor exercise. I was a dancer and as long as I paced myself and did not dance in the grass in the spring, I was OK. By my early 20s it was full blown and in the fall of my 22nd year, I nearly died from an acute attack while camping in the White Mountains of New Hampshire. My now ex-husband had to literally carry me to the emergency room. At that point I was merely taking small sips of air and near blacking out from the lack of oxygen. A shot in the arm of adrenaline gave me instant relief and my first large gasp of air. I then began to talk a mile a minute and giggle inappropriately. I was and felt very silly, but joyous at being able to breath and not dying!
   
   Since that episode while camping, the worst time of year for me (besides spring), has been and still is in the fall when the trees, and rag weed and other grasses, shed there pollen. Before going on a gluten free diet, I would end up in the emergency room for emergency breathing treatments every fall. Once I was gluten free, my asthma improved and I stopped going to the emergency room for about five years. But recently since the pollen count has been at all time highs these past few years, my asthma has come back with a vengeance. Now I am having great difficulty in breathing and constantly loosing my breath, with even the smallest and mildest of movements. I use both a rescue inhaler and a long-term steroid inhaler everyday. If I miss a day or two, breathing becomes very difficult. My daughter, on the other hand, has had long term mild asthma, that has now, in her 30s, developed into chronic bronchitis and some OPD (Obstructive Pulmonary Disease).



3. Hay Fever & Other Air Born Allergies:  "Allergies are an overreaction of the immune system to substances that generally do not affect other individuals. These substances, or allergens, can cause sneezing, coughing, and itching. Allergic reactions range from merely bothersome to life-threatening. Some allergies are seasonal, like hay fever. Allergies have also been associated with chronic conditions like sinusitis and asthma." - http://www.cdc.gov/healthcommunication/ToolsTemplates/EntertainmentEd/Tips/Allergies.html As noted above, Allergies bare many of the same aspects and characters of autoimmune diseases, and the medical community is beginning to do research into the idea that they are indeed autoimmune in nature and substance. I and my daughter do not find that odd or new in any way. We have long suspected that.
   
   The hay fever and other air born allergies also started at the same time as the asthma, that is, in our early teens. Hence puberty. As you read this blog you will see that very point repeating itself often, i.e. 'on set at puberty'. Like the asthma it started as a season thing, then became all year round, then, for me, it became so intense that my nose dripped and swelled all the time, and I would do explosive bouts of sneezing. Often 10 to 15 sneezes in a row, so quickly that I often lost my breath and became dizzy. The sneezes became so powerful on a daily basis that I often cause whip-lash, dislocated vertebra in my neck, and popped out many of my rib heads in both the front and back of my rib cage. I was miserable and used up truck loads of tissues every years. This constant chronic weeping from the nose also cause recurring lung infections, especially during the winter. It also often triggered or exacerbated my asthma. With a full blown episode I would end up on the bed with my nose running full speed, sneezing over and over again, a massive neck and headache, and gasping for breath. It felt like I was drowning in my own snot. In a way, I was.
   
   Finally in my 30s (late 1980s) I went to an allergist. They did a skin scratch test, with 100 single and combo scratches. I tested positive for over 90 to 95% of them, all air born: all trees, all grasses; all furred animals, all feathers, all pollen, all dust mites, and so on. Only mold had a low reaction percentile, much to my surprise. When I asked the doctor about getting allergy shots, he claimed that my allergies were too many and too wide spread for shots to be of any use. I believe that today things are different, and they can treat someone like myself. I believe so because my niece has just tested positive in exactly the same way that I have, with the same responses and allergies, and her allergist IS making a special series of shots for her.
   
   Things got so bad for me that when Seldane (Terfenadine - removed from the market in 1997, and replaced with Allegra), a 24 hour non-drowsy anti-histamine, came out, I started using it every day. This was great in many way. Not only because it was a 24 hr drug, but it did not effect me the way all other anti-histamines did. Other anti-histamines knocked me out with just a single dose, and sometimes caused a drug induced form of Apnea. Seldane was a life saver for me. When Allegra replaced Seldane, it worked, but nothing since has ever worked as well as Seldane did for me. I took Seldane/Allegra for nearly 15 years until I went on my gluten free diet. Since then I no longer have to live on those drugs and my allergies are much more manageable, and often, I go nearly symptom free without any medication. I still am very allergic to dust mites and seasonal pollen, but other than that, life is so much better.
   
   • Allergic Rhinitis:"Allergic rhinitis is an allergic reaction that happens when your immune system overreacts to substances that you inhale, such as pollen.
     
     The two types of allergic rhinitis are:
     
     
     • Seasonal allergic rhinitis (hay fever)
     • Perennial allergic rhinitis, which occurs year-round
     
     Hay fever is caused by outdoor allergens. Perennial allergic rhinitis is caused by indoor allergens, such as dust mites, pet dander, and mold ...Most patients with allergic rhinitis have symptoms before age 20 ... Many people who have allergic rhinitis also have asthma." - Source: Allergic rhinitis | University of Maryland Medical Center http://umm.edu/health/medical/altmed/condition/allergic-rhinitis
     
     I have posted this separate because of the significant history that we have with this, especially my daughter.
     
     My daughter and I have chronic sinus headaches caused by allergies. We have had them since puberty, and they have never completely gone away. Even with the improvement afforded by staying on a gluten free diet. Before the GF diet, sinus headaches would get so bad that we would wake up screaming in pain, literally. Only heavy duty decongestants would give us any form of relief. These screaming headaches happened at least once a month, and during peak seasons, weekly, often lasting for days on end. In the end, my daughter, who had a four year, non-stop, massive headache from age 9 to age 13, had to have surgery to carve out her sinuses, and give her some relief, and clear up the chronic infection she had.
     
     Often the sinuses would swell so bad that they would push down on the long roots of our teeth, loosen them, and displace them downwards so that we could not fully close our mouths. Today, since going on the GF diet, we are doing better, but our sinuses are still swollen and we always have a chronic, constant low grade sinus headache. Also, when we get a bad cold on top of the Rhinitis, our sinuses still swell up and displace and loosen our upper teeth. When this happens it feels like someone has shoved a large, thick spike right through your check bone. So much fun!

So, there you have it. Part one of the remaining two lists (after the EDS-HT list). The next post will be for the Endocrine System Metabolic Syndrome condition that runs through the female line of my Sicilian family. I was going to do these last two list all in one post. Thought it would be a simple matter of listing them, since most people are familiar with these conditions. But after doing some research to bring me up to-date, I learned so many new developments, and new research, that the first of the two remaining lists just kept getting longer and longer. Finally I just gave in and gave it the same attention and detail I did to the EDS-HT list. I am glad I did. It has been very educational and has confirmed and made steadfast my belief that all that my daughter and I are going through boils down to an autoimmune issue, and may include damage in general to chromosome 2, were many, if not most, of these condition's genetic markers can be found. If this is true, then there is hope that a transfusion of donated bone marrow may indeed be a viable solution for us. It is in the bone marrow, from what I understand, that the immune cells are taught "Self-Non-Self" coding. A failure in this coding is what is believed to be the main cause of autoimmune conditions. Why this happens, is another issue, most likely a genetic issue, which is corrected with the change in the bone marrow DNA from a marrow donation from a different, unaffected person. So there is still hope.

Update on the last two lists ......

So, just a quick update on how the final two lists are going. Though they are taking 10Xs as long as I had thought they would, the processes has been a wonderful learning experience. I have discovered new research on several of the diseases we have had for decades, and for which we thought were thoroughly understood. New research has once again validated our experiences, and suspicions, concerning the probable autoimmune links to eczema, asthma, and our allergies, as well as new info concerning hypothyroid disease, and Celiac.

So please bare with me once more as I gather all this information together in a coherent form, for this blog is not just about the lists, or how it all has and does affect us, but also about in depth information, and new research and resources. That takes time and a great deal of writing.

See you soon ......

Lilith