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What Age Did Everyone Begin To Have Symptoms?


jwblue

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jwblue Apprentice

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GottaSki Mentor

Which symptoms?

Classic? Never

Gastro? varied until sustained at 32+ must add I had no idea what "normal" bowel movements were

Autoimmune? varied until sustained at 28+

the other several dozen that I had? entire life - pictures as toddler with cracker in hand - crazy bloat

I don't mean to dismiss - just not sure what your question is.

Edited to add...when I had symptoms

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jwblue Apprentice

Which symptoms?

Classic? Never

Gastro? varied until sustained at 32+ must add I had no idea what "normal" bowel movements were

Autoimmune? varied until sustained at 28+

the other several dozen that I had? entire life - pictures as toddler with cracker in hand - crazy bloat

I don't mean to dismiss - just not sure what your question is.

Edited to add...when I had symptoms

Any symptoms for Celiac.

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GottaSki Mentor

12 months.

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JDThornton Newbie

Mostly all my childhood. More severe at 18. Sustained since 26. I am now 29.

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GF Lover Rising Star

Alot of my depression and anxiety developed early when I still lived with my family. Around 20 the mental health issues ramped up. Did some heavy drinking during those years. First miscarriage in 1990, first child born in 1993 (also when hypo hit). Second child in 1995. I always had a problem with constipation since teens. After pregnancies all the digestion issues came on strong. Then year after year more stuff. Monster migraines, Arthritis, periformis syndrome, sacroilitis, degenerative disk, hemorrhoids out of control, Sicca symptoms, fibromyalgia (mine is skin surface pain), stiffness in all joints, carpel tunnel (I believe from all over inflammation) and now cancer. I was only diagnosed celiac 5 months before the cancer.

Resolved issues. Had hemorrhoids operated on, all digestive issues resolved, migraine only when cc'd, whole body inflammation is less. Fibro surface pain is less often. Have an appetite now. Carpel tunnel resolved, I believe, as a decrease in inflammation.

I still have a lot of fatigue and weakness issues but I believe that is related to a different condition.

Best of luck,

Colleen

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1desperateladysaved Proficient

I had mononucleousis when I was 19 and in college. After that I noticed, unending fatigue, bloating on occassion, and sensitivities to perfume and cigarette smoke. My appetite had unusual swings from famished constantly, to a severe lack of appetite. The symptoms gradually got more and more noticeble, but I think I was numbed either by extreme fatigue or lack of vitamin B. Gradually, the bloating and fatigue overcame me and did not go away.

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megsybeth Enthusiast

From the time I was born I was pale, skinny and had dark circles under my eyes. I guess around age four or five I had to have all my teeth capped because of "milk rot". At six I was ill for about a year: mono, tonsillitis, chicken pox. Just seemed to catch everything. After that, migraines, stomach isssues here and there, in early twenties abdominal pain. I didn't get diagnosed until 35 years old, two months ago.

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Cara in Boston Enthusiast

No problems at all until I got pregnant with my second child (age 38). I went from going to the doctor once a year (just for annual physical) to going in every few months with really random symptoms. (cardiac, neuro, GI, etc.) It got to the point where my doctor just thought I was making stuff up because nothing ever showed up on the many, many expensive tests they ran. When my son was diagnosed (2nd child - coincidence?) at age 5 I got tested and was positive. I had a negative biopsy, but once I started the diet, my health returned. It was amazing. I wish someone had thought to suggest it much, much sooner. I realize 5 years is not bad compared to others, so I really can't complain.

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luvs2eat Collaborator

I was 49... no other celiacs in my immediate or extended family. I had symptoms for about 2 months and was diagnosed by blood tests. Middle daughter was diagnosed at about age 26. Then youngest daughter was diagnosed a few years later at about age 27. And finally, oldest daughter was diagnosed at age 32. Still none of my siblings or extended family has it.

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Darkfire Ann Newbie

According to my baby records I was born on Sept 21. I was given oats and barely in formula on Oct 25th and Oct 26th I developed a severe allergic rash. That was 39 years ago so the connection was sketchy. That is the first reported reaction I had to Gluten. So it's safe to say I was drawn this way.

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  • 3 weeks later...
Jcrosk Newbie

Looking back I've had symptoms for 20 years but I could always attribute them to something else. In January 2012 my colon had enough and shut down. I lost muscle control of my colon and needed laxatives to get any movement at all. It took about a month to diagnose it properly as celiac. I had 2 bloodiest, both negative. My doctor wasn't getting it. I decided to go gluten free, did it for a week and got back control of my colon and I felt so much better. Then I ate a hamburger and onion rings and all my symptoms came back. I consumed gluten for almost 42 years till my body said enough.

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nvsmom Community Regular

I had "C" as soon as pablum was introduced and was into the doctor in my early childhood because of my chronic stomach aches. I can't remember as many stomach pains when i was a teen (migraines started instead) but they came back as an adult. I developed other autoimmune diseases, and other symptoms until I figured it out and got myself diagnosed this past year at age 38.

... 38 years I guess.

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love2travel Mentor

No clue as I have never felt ill from eating gluten. But I started suspecting something (not celiac at the time) when I had miscarriages. Then three years ago I got bronchitis then pneumonia. After that my celiac fog started - I believe my illness may have triggered it, as did an accident that left me in constant chronic pain. I have been diagnosed with fibromyalgia but believe that it is related to/caused from celiac. Not getting a bit better, even 1.5 years off gluten but there is always hope! :)

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designerstubble Enthusiast

I wish I knew! I keep trying to remember when things first started... Bread has bothered me for a long time... I always felt tired after eating it but that was it? Is that a celiac symptom?

Apart from that I would say my symptoms have come on really slowly. So slowly that I struggle to pinpoint it exactly. Apart from bread 'bothering' me, I guess I first started not feeling right about 5 or 6 years ago. So that would've made me 33/34 years of age.

I'm still struggling with the fact that I may have had this for a very long time... Or if not, something triggering it. It's a horrible idea to think that something I did (stress) might have started this horrible disease.

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L.O.C.T. Rookie

I remember the very day it seemed to all begin. Around age 10 or 11, I was eating out with my family and, while we were all waiting for food, I was struck with these horrendous stomach pains that I had never experienced in my life. I was really scared ; it was like my insides were going to explode...I just wanted to poke a hole in my side and deflate/remove whatever little mythical horse was kicking the inside of my torso from multiple directions :P I later found out that this was what gas cramps felt like, and little did I know that these were going to become a regular part of my life (as in, 2-3 nights per week, without fail) for the next few years. They disappeared, as if magically, when I stopped eating gluten.

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    • cristiana
      Thank you for your post, @Nedast, and welcome to the forum. It is interesting to read of your experiences. Although I've not had TMJ, from time to time I have had a bit of mild pain in my jaw, sharp stabbing pains and tingling in my face which appears to have been caused by issues with my trigeminal nerve.  I read that sometimes a damaged trigeminal nerve in coeliacs can heal after adopting a gluten free diet.  I try to keep out of cold winds or wear a scarf over my face when it is cold and windy, those conditions tend to be my 'trigger' but I do think that staying clear of gluten has helped.  Also, sleeping with a rolled up towel under my neck is a tip I picked up online, again, that seems to bring benefits. Thank you again for your input - living with this sort of pain can be very hard, so it is good to be able to share advice.
    • Julie Riordan
      I am going to France in two weeks and then to Portugal in May   Thanks for your reply 
    • Nedast
      I made an account just to reply to this topic. My story resembles yours in so many ways that it is truly amazing. I also suddenly became lactose intolerant, went a little under 10 years attributing all my symtoms to different body parts, never thinking it was something systemic until much later. I had the same mental problems - anxiety, depression, fatigue, etc. In fact, the only real difference in our story is that I was never formally diagnosed. When I discovered that my myriad symtoms, that had been continuous and worsening for years, all rapidly subsided upon cessation of consuming gluten, I immediately took it upon myself to cut gluten out of my diet completely. I live in America, and had lost my health insurance within the year prior to my discovery, so I could not get tested, and I will never willingly or knowingly consume gluten again, which I would have to do in order to get tested now that I have insurance again. But that is not the point of this reply. I also had extreme TMJ pain that began within months of getting my wisdom teeth out at - you guessed it - 17 years old. I was in and out of doctors for my various symptoms for about 5 years before I gave up, but during that time I had also kept getting reffered to different kinds of doctors that had their own, different solutions to my TMJ issue, an issue which I only recently discovered was related to my other symptoms. I began with physical therapy, and the physical therapist eventually broke down at me after many months, raising her voice at me and saying that there was nothing she could do for me. After that saga, I saw a plastic surgeon at the request of my GP, who he knew personally. This palstic surgeon began using botox injections to stop my spasming jaw muscles, and he managed to get it covered by my insurace in 2011, which was harder to do back then. This helped the pain tremendously, but did not solve the underlying problem, and I had to get repeat injections every three months. After a couple of years, this began to lose effectiveness, and I needed treatments more often than my insurance would cover. The surgeon did a scan on the joint and saw slight damage to the tissues. He then got approved by insurance to do a small surgery on the massseter (jaw) muscle - making an incision, and then splicing tissue into the muscle to stop the spasming. It worked amazingly, but about three months later it had stopped working. I was on the verge of seeing the top oral surgeon in our city, but instead of operating on me, he referred me to a unique group of dentists who focus on the TMJ and its biomechanical relationship to teeth occlusion (i.e. how the teeth fit together). This is what your dentist did, and what he did to you was boderline if not outright malpractice. There is a dental field that specializes in doing this kind of dental work, and it takes many years of extra schooling (and a lot of money invested into education) to be able to modify teeth occusion in this manner. Just based on the way you describe your dentist doing this, I can tell he was not qualified to do this to you. Dentists who are qualified and engage in this practice take many measurments of your head, mouth, teeth, etc., they take laboratory molds of your teeth, and they then make a complete, life-size model of your skull and teeth to help them guide their work on you. They then have a lab construct, and give you what is called a "bite splint." It looks and feels like a retainer, but its function is entirely different. This is essentially a literal splint for the TMJ that situates on the teeth. The splint is progressively modified once or twice per week, over several months, in order to slowly move the joint to its correct position. The muscles spasm less, stress is taken off the joint, as the joint slowly moves back into its proper position. The pain reduces each month, each week, sometimes even each day you go in for a visit. The joint has to be moved in this manner with the splint BEFORE the modification to the teeth begins. They then add to your tooth structure with small bits of composite, to keep the joint in its proper place after it has been sucessfully repositioned. Subtracting from your teeth, by grinding down bits of your natural tooth structure, is done very conservatively, if they have to do it at all. This process worked for me - after six months, my face, jaw, neck all felt normal, and I had no more pain - a feeling I had not had in a long time. It also made my face look better. I had not realized the true extent that the spasming muscles and the joint derangement had effected the shape of my face. The pain began to return after a few months, but nowhere near where it had been before. This immense reduction in pain lasted for a little over two years. The treatment still ultimately failed, but it is not their fault, and it is still the treatment that has given me the most relief to this day. Later on, I even went about three years with very, very good pain reduction, before the joint severely destabilized again. This field of dentistry is the last line treatment for TMJ issues before oral surgery on the TMJ. There aren't as many denists around who practice this anymore, and the practice is currently shrinking due to dentists opting for less espensive, additional educations in things like professional whitening, which have a broader marketability. Getting this treatment is also very expensive if not covered by insurance (in America at least). My first time was covered by insurance, second time was not, though the dentist took pity on me due to the nature of my case and charged like a quarter of usual pricing. Most cases seen by these dentists are complete successes, and the patient never has to come back again. But occasionally they get a case that is not a success, and I was one of those cases. A little over a year ago, I began seeing the second dentist who keeps my TMJ stable in this manner. The first dentist retired, and then died sadly. A shame too, because he was a truly amazing, knowledgable guy who really wanted to help people. The new dentist began to get suspicious when my joint failed to stay stable after I was finished with the bite splint and his modifications, so he did another scan on me. This is ten years after the first scan (remember, I said the surgeon saw "slight" damage to the tissue on the first scan). This new scan revealed that I now no longer have cartilage in the joint, on both sides - complete degeneration of the soft tissues and some damage to the bone. The dentist sat me down and had a talk with me after these results came in, and said that when he sees damage like this in cases like mine, that the damage to the joint is most likely autoimmune, and that, in his experinece, it is usually autoimmune. He has sent patients with cases like mine to Mayo Clinic. He said he will continue to see me as long as the treatment continues to offer me relief, but also said that I will probably have to see a dentist for this type of treatment for the rest of my life. He is not currently recommending surgery due to my young age and the fact that the treatment he provides manages my symptoms pretty well. I still see this dentist today, and probably will see this kind of dental specialist for the rest of my life, since they have helped with this issue the most. I did not inform him that I am 100% sure that I have celiac disease (due to my complete symptom remission upon gluten cessation). I didn't inform him because I thought it would be inappropriate due to not having a formal diagnosis. I was disappointed, because I had believed I had caught it BEFORE it had done permanent damage to my body. I had never suspected that my TMJ issues may be related to my other symptoms, and that the damage would end up complete and permanent. Luckily, I caught it about 6 months after my other joints started hurting, and they stopped hurting right after I went gluten free, and haven't hurt since. I of course did the necessary research after the results of the second scan, and found out that the TMJ is the most commonly involved joint in autoimmune disease of the intestines, and if mutliple joints are effected, it is usually the first one effected. This makes complete sense, since the TMJ is the most closely related joint to the intestines, and literally controls the opening that allows food passage into your intestines. I am here to tell you, that if anyone says there is no potential relationship between TMJ issues and celiac disease, they are absolutely wrong. Just google TMJ and Celiac disease, and read the scientific articles you find. Research on issues regarding the TMJ is relatively sparse, but you will find the association you're looking for validated.
    • trents
      Welcome to the forum, @SuzanneL! Which tTG was that? tTG-IGA? tTG-IGG? Were there other celiac antibody tests run from that blood draw? Was total IGA measured? By some chance were you already cutting back on gluten by the time the blood draw was taken or just not eating much? For the celiac antibody tests to be accurate a person needs to be eating about 10g of gluten daily which is about 4-6 pieces of bread.
    • SuzanneL
      I've recently received a weak positive tTG, 6. For about six years, I've been sick almost everyday. I was told it was just my IBS. I have constant nausea. Sometimes after I eat, I have sharp, upper pain in my abdomen. I sometimes feel or vomit (bile) after eating. The doctor wanted me to try a stronger anti acid before doing an endoscopy. I'm just curious if these symptoms are pointing towards Celiac Disease? 
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