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At What Age Were You Diagnosed?


fisharefriendsnotfood

At What Age Were You (or Your Loved one) Diagnosed?  

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prinsessa Contributor

Self diagnosed at 27 (about 6 months ago). My blood test came back negative, but I decided to try the diet anyway. I feel so much better now.

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Debbie65 Apprentice
Debbie, I am so glad you joined. So many have so many results from various tests - I do plan to go and make sure my blood levels look ok. Also I have been eliminating dairy and soy and most corn just in case. I still feel like I eat all the time. Guess the empty feeling will go away after a while. I don't think I am underweight though- 5'3 - 108. Also I am trying not to eat sugar. Wishing you good health...

I guess from your time difference you

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jesscarmel Enthusiast

diagnosed 5 months ago at age 27 after being hospitizlied for pancreatitis caused by the undiagnosed celiac. years of being told i had ibs

also because of my diagnosis my dad got diagnosed 2 months ago at 60

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lindalee Enthusiast
I guess from your time difference you?re from the US. You guys have it so tough over there with isurance and everything. I know the state of the national health in the UK is probably at an all time low at the moment(don?t know for sure as I haven?t lived there for ten years) but at least everyone has access to medical treatment whether they can afford it or not even though there are waiting lists and they can pre pay a certificate that makes prescription costs more bearable.

When I was a child( children under 16 don?t pay for medical necessities on prescription) I used to get a prescription for 6 cans of Rite diet gluten-free bread(anybody remember that?) & 6 pkts Rite diet gluten-free bics every week. At Xmas my mum used to buy me fruit cake. The pasta & stuff was gross and has put me off even trying these things to this day. My mother didn?t have to pay for the every day stuff and that was 35 -40 yrs ago.

My heart really goes out to the people in the Us- especially the ones with children who are Coeliac.

To get to what you were saying, the hungry feeling is another thing that seems to have gone from me very quickly, my eating intervals are much more civilised now. I used to spend in between meals dreaming about the next one.

Take care.

No I am not familiar with those foods. According to my baby book, I was eating bananas. I am so glad my mother journaled in the book since she has passed away. Since I'm self-employed I chose the high deductible insurance route. I am searching for a doctor who isn't a pill pusher more nutrition oriented.

Maybe since you aren't hungry all the time it means that you are absorbing your food well. Not sure about that. Well, I'm hungry(giggle) better eat - going to the James Taylor Concert tonight.

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Debbie65 Apprentice
No I am not familiar with those foods. According to my baby book, I was eating bananas. I am so glad my mother journaled in the book since she has passed away. Since I'm self-employed I chose the high deductible insurance route. I am searching for a doctor who isn't a pill pusher more nutrition oriented.

Maybe since you aren't hungry all the time it means that you are absorbing your food well. Not sure about that. Well, I'm hungry(giggle) better eat - going to the James Taylor Concert tonight.

I´m cringing as I write this but my curiosity is getting the better of me( picture me getting lower & lower in my chair and when you answer, picture me under it with my face screwed up saying " ohhh!!!!, I can´t believe I asked that but..........)

Who´s James Taylor?

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lindalee Enthusiast

I must be older than you. He is a singer - songwriter - lots of 70's hits...Fire and Rain, Something in the way she moves, Don't let me be lonely tonight, Long ago and Far Away, Carolina on my mind and my favorite is You've Got a Friend.. I'm really looking forward to it. I love 70's Music.

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Debbie65 Apprentice

Yeah,

I know most of those songs but couldn´t put a name to them so I´m guessing you might be around the same age as my hubbie who was born in ´57 and is 9 years my senior. We have that sort of conversation all the time, not just because of the age gap but also because I´m a person who has a talent for remembering half of everything.

This drives my friends crazy because I can never tell them a full news item or gossip story or recipe or anything come to think of it.

Can I blame Ceoliac for that?

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lindalee Enthusiast
Yeah,

I know most of those songs but couldn´t put a name to them so I´m guessing you might be around the same age as my hubbie who was born in ´57 and is 9 years my senior. We have that sort of conversation all the time, not just because of the age gap but also because I´m a person who has a talent for remembering half of everything.

This drives my friends crazy because I can never tell them a full news item or gossip story or recipe or anything come to think of it.

Can I blame Ceoliac for that?

Absolutely, We can blame alot on it!! :D:D

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Debbie65 Apprentice
Absolutely, We can blame alot on it!! Ha :D:D

Have a great time at the concert!!!!!!!!!

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Ashley Enthusiast

I was 14 when I was Dxed and now I'll be 16 in a month.

-Ash

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Kaycee Collaborator

Good question, this interests me.

I was dianosed with this at 48. Probably has been around for years and years, just slowly eating away at me.

I can't remember being a sickly child, I was always a bit overweight. I did have episodes of diahrhoea as a child, but who doesn't. I had a bit of a nervous breakdown when very young, and had been a nervous child. So maybe I did have this as a child, but quite mildly.

I have given up thinking on that. This is now, and this is when I am feeling my worst. Especially after eating something, don't know what, that made me ill yesterday. Just wanted to curl up at work and sleep!

Cathy

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utdan Apprentice

I diagnosed myself 2 years ago at 29 and was probably born with it. My mother gave me some homemade whole wheat bread at around 11 months old and got a dangerous fever from it. Interestingly, nothing dramatic ever happened again. Then I started noticing heavy anxiety issues at around 3rd grade and doubly intense at 6th grade and continued on but gradually got better ever since sixth grade.

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natalunia Rookie

I was diagnosed at 29, a few months ago. I had been sick with diarhhea several times a week for over 8 months. I thought I had giardia from my DD (adopted from Russia a little before the chronic D). I was tested for giardia, took meds, and it persisted, so I knew something was up.

I started to watch what I ate and note when I got diarhhea and noticed I got D about 1 hour after eating cake. My mom said maybe I had a wheat allergy (I have lots of other allergies, none food). I started researching wheat allergies and stumbled across celiac disease. I started limiting my wheat intake greatly.

I made an appointment with my general practitioner after a month, told him what I thought I had, and he sent me to a GI (he didn't see enough celiac cases to feel comfortable diagnosing me). The GI insisted on doing a colonoscopy first (family history of colon cancer), and I went gluten free (I was desperate to feel better). My GI agreed that the endoscopy wouldn't show much by the time they could schedule me for it since I had gone gluten free, and he said the dietary response is a better indicator than anything. He said if nothing else, I am gluten intolerant.

I am fairly certain my paternal grandmother has celiac disease (lifelong GI issues, multiple miscarriages & one stillbirth, diabetes, bloating, constantly belching). My brother has started (in the past 3-4 months) to get GI problems (cramping, diarhhea, gas) when he eats cake or something that has a lot of wheat in it (he eats very little pasta, bread, etc). My dad has always seemed to have GI issues, but not as severe as me or his mother. My mother has GI problems, but she doesn't think she has it. I'd like to get the genetic testing done just to see how many (if any) of the genes I have. That way I could possibly determine if it is one or both parents who I inherited this from. I had a lot of diarhhea as a child and threw up easily (still do).

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jayhawkmom Enthusiast

36. =(

Daughter - 4

Son #2 - 11 months.

Son #1 - no signs, symptoms, tests WAY negative.

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issima Newbie

I'm 55, just found out earlier this month. Have had tremendous job stress for the last 2 years, but it got really insane about 5 months ago. The bloatedness has developed correspondingly. However, I've got diverticulosis (diagnosed in 1990) and was told in the mid-90's I have IBS. Had sporadic bouts of very mild anemia before menopause, and recently I noticed I was having some of the same dizziness upon standing that I'd had with those anemia bouts (which ended in 2000).

This was discovered because I'm about to lose my job and wanted a full checkup. Went to my gastro who ordered CT-scan and then endoscopy when he saw enlarged abdominal lymph nodes and the CT scan showed small intestine inflammation.

Trying to find this in my family tree. Paternal grandmother died of lymphoma in her late 50's. No way to know about any celiac manifestations in her now. Maternal grandmother (and most of her sibs) had diabetes -- she had diverticulosis, alzheimer's, Type 2 diabetes. No one ever talked about wheat/gluten, etc. back then.

Our family doctor back in the 50's wondered out loud if I had celiac -- first time my mother heard of it. Never heard of it again until a few years ago when a friend was tested (tests negative) and told me about it. Now I have it, and from what I have read, my chances for real rebounding at this age are not all that great (hope that's not true) -- wish it had been pursued back then, but I didn't really have many of the more specific manifestations most people seem to have.

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lindalee Enthusiast
I'm 55, just found out earlier this month. Have had tremendous job stress for the last 2 years, but it got really insane about 5 months ago. The bloatedness has developed correspondingly. However, I've got diverticulosis (diagnosed in 1990) and was told in the mid-90's I have IBS. Had sporadic bouts of very mild anemia before menopause, and recently I noticed I was having some of the same dizziness upon standing that I'd had with those anemia bouts (which ended in 2000).

This was discovered because I'm about to lose my job and wanted a full checkup. Went to my gastro who ordered CT-scan and then endoscopy when he saw enlarged abdominal lymph nodes and the CT scan showed small intestine inflammation.

Trying to find this in my family tree. Paternal grandmother died of lymphoma in her late 50's. No way to know about any celiac manifestations in her now. Maternal grandmother (and most of her sibs) had diabetes -- she had diverticulosis, alzheimer's, Type 2 diabetes. No one ever talked about wheat/gluten, etc. back then.

Our family doctor back in the 50's wondered out loud if I had celiac -- first time my mother heard of it. Never heard of it again until a few years ago when a friend was tested (tests negative) and told me about it. Now I have it, and from what I have read, my chances for real rebounding at this age are not all that great (hope that's not true) -- wish it had been pursued back then, but I didn't really have many of the more specific manifestations most people seem to have.

Gosh, I hope that is not true about the rebounding. What are you reading? :( I have also just recently gone on the diet and really hope not to much damage has been done to us. I do believe stress is what brought my symptoms on. <_< I really hope that dizziness goes away.

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issima Newbie
Gosh, I hope that is not true about the rebounding. What are you reading? :( I have also just recently gone on the diet and really hope not to much damage has been done to us. I do believe stress is what brought my symptoms on. <_< I really hope that dizziness goes away.

I read research findings that say recovery is much slower and sometimes ineffective the older one is at diagnosis. Little kids have the best chance of full recovery. I assumed most folks here would have seen it as I first saw it at Celiac.com, though it is a bit new:

https://www.celiac.com/st_prod.html?p_prodi...-34106345417.e7

Whatever. I can't afford NOT to take this seriously -- am the single mother of a 14 year-old boy. But admittedly I'd love to see findings that are more encouraging than this.

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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
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    • 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. 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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. 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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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