My name is Bill. I have Celiac Disease (CD), Hyper-reactive Hypoglycemia, an overly excited LES (Jackhammer Esophagus), unexplained side chest pain (they think I am breaking ribs via coughing and the CD weakening the bones), and starting a quest to arthritis at the age of 42. To get to diagnosis was a wild ride (age 33 till present) and lots of painful nights and days. I have missed lots of work and thankfully I have insurance that can cover the absences. This started with one disease and has manifested to multiple diseases that they claim all have an autoimmune component. This site is to share my experiences and maybe provide help. I have had a nasty adventure with this disease and I have a lot of knowledge on this subject from reading medical journals and to being a total ass with doctors discovering answers to my questions. I intend to share those as they come to mind as separate entries on the forum.
From as far as I can remember I have always had interesting stools from diarrhea to constipation. I use to get rashes a lot also in my youth (I even have a scar from one that was on my leg – turned to a pigmented birthmark). Symptoms always went away so doctors never thought anything of it. They actually didn’t know till many years later when this thing popped; and even then they was confused for 3-5 years. Mom always thought I was a healthy kid but when I review childhood photos, at times I can see the descended bowel. My younger sister also has this bowel and today is having her own battles with digestive issues. Mom also said each of us children was jaundiced at birth and mom recently was taken from us by a liver disease which I think started with Silent Celiac. She was prescribed Prednisone to silence the disease which pissed off her immune system (Cancer in 6 months). When my pelvis was biopsied they specifically said (US Doctors via work) to never take this drug; me thinking I got most of my immune system from mom via breast feeding; she probably had a similar immune system like me. The immune system is too excited that the drug would make it worse or even helps the lack of ability to fend natural cancers we all get. That also was part of mom’s fate as she waited for a liver. Small Cell Lung Cancer. Diagnosis early is key in this diseases and if it’s too late, you’re constantly going to have issues. Ignore it completely, it can kill you.
Non-serological Celiac Disease (Biopsy/DNA diagnosed)
The Gold Standard is biopsy. Some don’t show antibodies; or at least not the ones they are looking for. This has always baffled me that the ones they think they know about, I don’t remotely show. However my aTTG does take off but never hits a 10+. If a blood test comes back negative but biopsies are positive then this is the term for diagnosis. It also can take a lot longer for healing to start on a gluten free diet and it could be 3-5 years before improvement or complete healing of the bowel visually. The mistake of Refractory CD can also be suggested which is a variant that never improves after 3 years by biopsy. Genetic tests also are completed which is oddly similar to the same genetic markers checked by 23andme. Two types are known to cause the disease which is a defect on the HLA (Human Leukocyte Antigen System) part of the white blood cells which helps the immune system with identification of foreign protein. Two defects known as HLA-DQ2.5 or HLA-DQ8 are noticed in people with this disease which somehow makes the immune system think that the foreign protein Gluten is a foreign invader. Individuals without these markers are considered to be Sensitive. My mom was both these markers; and she gave me one called HLA-DQ8 which I passed to my own son. There also is another digestive component called zonulin which is a protein in the tight junctions of the small intestine. This zonulin in genetic susceptible people binds to gluten allowing the tight junctions between cells in the villi to open allowing undigested protein, fats, and sugars to enter the livers blood network. Zonulin is supposed to help regulate the tight junction pathway. This binding causes an immune response and can be very aggressive as it destroys the villi also. The immune system identifies the small bowel as part of the problem because of this zonulin.
Reoccurring Celiac Symptoms
Although you may be gluten free; it all depends on the level of damage to the body. How severe? How long did it take to start noticing the gluten free diet was working?(Myself; that’s three years but the symptoms continued till last year when the Esophagus decided it was also done.) You could be waiting 10+ years for a life back. Your body has to remove all the gluten from the body to really see any solid improvements. I continually battle with weight loss; but as the years go forward it also improves a bit at a time. When the body releases the toxins and cytokines associated with the disease as you purge; you end up flu'ish and fell continually dragged. This makes any life activity hard to deal with. Anxiety can really get out of control and then one day you snap. You can’t cope or deal with anything anymore. There are days you just want to hide under a rock and die. I was forced to seek mental help because I just couldn’t handle the flood of whatever was happening inside my body and doctors puzzled on why I was reacting and not exposing myself directly with gluten. I had to go through even more diets such as FODMAP which I am still on but have noticed organic varieties I am ok with today. I personally think these things take time and you just have to adapt and make the food adjustments necessary based on your diary of food intake. One of the things with FODMAP’s is specific sugars is also not allowed. I spent many days in bed wanting whatever it was to take my life because the pain from eating things that might contain something like onion powder or fructose to name a few. Once I started the appropriate medications and we figure out what would work and wouldn’t react with each other; things started to improve. I have noticed organic varieties can be eaten within moderation. Anxiety also is a huge factor with this disease and people who once could handle it freely; can’t anymore. This is where the right medical help comes into play where a Psychologist can help. One of the most bizarre things with anxiety medication and CD is they can wake up old demons. So be prepared to face your past if you have supressed thoughts or memories. Seeing a mental health professional isn’t a failure like I once thought it was.
New Diagnosis and New Autoimmune conditions
Be prepared for new diseases and food reactions as your body that was damaged tries to repair itself. Arthritis, Diabetes, Esophagus Diseases, Mouth sores, migraines, Disease associated anxiety, and foul gas are some of the things I am plagued with today. Your list can be similar or a variation of symptoms ranging to hair loss. Dairy, corn products and eggs (organic eggs fine) I have begun to get similar CD reactions without atrophy also when eating. Organic seems to be the only way past any upsets. Specific sugars (FODMAP’s) might be an issue now as those cells are damaged and long gone from the CD; the only possible reaction is diarrhea or fowl gas. Fructose/Sucrose/Lactose and alcohol sugars are new irritants. Maintaining a Food Diary is a must when your symptoms continue. If you stay on track you will continue to go uphill to good health and learn to respect; staying safe with your custom diet because my diet may not be the same for you. I strongly feel it all depends on how long silently you reacted before it finally woke up that dictates the severity of your CD and the length of time till you improve. Any slip-up your fault or someone else’s sets you back and you start to realize at how much of your life it takes away each time; and it could be years before you realize it but we are human and we have to learn by screwing up a few times before it finally sets. CD is a lifestyle and requires drastic diet changes over night and for life. Cheating on food is damaging and you will never get better.
Early Diagnosis is important - Get Tested
Getting tested is the only way to prevent the hell you will go through from diagnosis to recovery. Problem is the testing doesn’t work for everyone but should for most. Doctors will not biopsy anyone and mine was warranted because of past problems with the stomach. To their discovery I had atrophy and between GI and lab; they couldn’t make up their mind on its cause. One day it was decided to try and in 3 years we saw changes. It’s due to its late detection as it is a genetic disease (HLA-DQ 2.5/8) and it only will show in those with one of these HLA alleles. Therefore an early diagnosis could be genetic tests and once you are told you have one of the alleles, you should probably avoid it; unless you want to have your own adventure if it decides to wake up.
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