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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

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

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.

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?

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.

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

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

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

Ashley Enthusiast

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

-Ash

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

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.

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).

jayhawkmom Enthusiast

36. =(

Daughter - 4

Son #2 - 11 months.

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

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.

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.

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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    • Scott Adams
      The first set of results show two positive results for celiac disease, so at the very least it looks like you could have it, or at the least NCGS.   Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.      
    • Scott Adams
      Elevated tissue transglutaminase IgA (tTG-IgA) levels are highly specific for celiac disease, and they are a key biomarker used in its diagnosis. However, there are some rare instances where elevated tTG-IgA levels have been reported in conditions other than celiac disease. While these cases are not common, they have been documented in the literature. Below are some examples and references to studies or reviews that discuss these scenarios:  1. Non-Celiac Gluten Sensitivity (NCGS)    - NCGS typically does not cause elevated tTG-IgA levels, as it is not an autoimmune condition. However, some individuals with NCGS may have mild elevations in tTG-IgA due to intestinal inflammation or other factors, though this is not well-documented in large studies.    - Reference: Catassi, C., et al. (2013). *Non-Celiac Gluten Sensitivity: The New Frontier of Gluten-Related Disorders*. Nutrients, 5(10), 3839–3853. [DOI:10.3390/nu5103839](https://doi.org/10.3390/nu5103839)  2. Autoimmune Diseases    - Elevated tTG-IgA levels have been reported in other autoimmune conditions, such as type 1 diabetes, autoimmune hepatitis, and systemic lupus erythematosus (SLE). This is thought to be due to cross-reactivity or polyautoimmunity.    - Reference: Sblattero, D., et al. (2000). *The Role of Anti-Tissue Transglutaminase in the Diagnosis and Management of Celiac Disease*. Autoimmunity Reviews, 1(3), 129–135. [DOI:10.1016/S1568-9972(01)00022-3](https://doi.org/10.1016/S1568-9972(01)00022-3)  3. Chronic Liver Disease    - Conditions like chronic hepatitis or cirrhosis can sometimes lead to elevated tTG-IgA levels, possibly due to increased intestinal permeability or immune dysregulation.    - Reference: Vecchi, M., et al. (2003). *High Prevalence of Celiac Disease in Patients with Chronic Liver Disease: A Role for Gluten-Free Diet?* Gastroenterology, 125(5), 1522–1523. [DOI:10.1016/j.gastro.2003.08.031](https://doi.org/10.1016/j.gastro.2003.08.031)  4. Inflammatory Bowel Disease (IBD)    - Some patients with Crohn’s disease or ulcerative colitis may have elevated tTG-IgA levels due to intestinal inflammation and damage, though this is not common.    - Reference: Walker-Smith, J. A., et al. (1990). *Celiac Disease and Inflammatory Bowel Disease*. Journal of Pediatric Gastroenterology and Nutrition, 10(3), 389–391. [DOI:10.1097/00005176-199004000-00020](https://doi.org/10.1097/00005176-199004000-00020)  5. Infections and Parasites    - While infections (e.g., giardiasis) are more commonly associated with false-positive tTG-IgA results, chronic infections or parasitic infestations can sometimes lead to elevated levels due to mucosal damage.    - Reference: Rostami, K., et al. (1999). *The Role of Infections in Celiac Disease*. European Journal of Gastroenterology & Hepatology, 11(11), 1255–1258. [DOI:10.1097/00042737-199911000-00010](https://doi.org/10.1097/00042737-199911000-00010)  6. Cardiac Conditions    - Rarely, heart failure or severe cardiovascular disease has been associated with elevated tTG-IgA levels, possibly due to gut ischemia and increased intestinal permeability.    - Reference: Ludvigsson, J. F., et al. (2007). *Celiac Disease and Risk of Cardiovascular Disease: A Population-Based Cohort Study*. American Heart Journal, 153(6), 972–976. [DOI:10.1016/j.ahj.2007.03.019](https://doi.org/10.1016/j.ahj.2007.03.019)  Key Points: - Elevated tTG-IgA levels are highly specific for celiac disease, and in most cases, a positive result strongly suggests celiac disease. - Other conditions causing elevated tTG-IgA are rare and often accompanied by additional clinical findings. - If celiac disease is suspected, further testing (e.g., endoscopy with biopsy) is typically required for confirmation. If you’re looking for more specific studies, I recommend searching PubMed or other medical databases using terms like "elevated tTG-IgA non-celiac" or "tTG-IgA in non-celiac conditions." Let me know if you’d like help with that!
    • MaryMJ
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    • trents
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    • Jack Common
      Hello! I want to share my situation. I had symptoms like some food intolerance, diarrhea, bloating, belching one year ago. I thought I could have celiac disease so I did the blood tests. The results were ambiguous for me so I saw the doctor and he said I needed to do tests to check whether I had any parasites as well. It turned out I had giardiasis. After treating it my symptoms didn't disappear immediately. And I decided to start a gluten free diet despite my doctor said I didn't have it. After some time symptoms disappeared but that time it wasn't unclear whether I'd had them because of eliminating gluten or that parasite. The symptoms for both are very similar. Giardiasis also damages the small intestine. The only way to check this was to start eating bread again as I thought. Now about my results.   These are my first test results (almost a year ago) when I had symptoms: The Tissue Transglutaminase IgA antibody - 0.5 U/ml (for the lab I did the tests 0.0 - 3.0 is normal) The Tissue Transglutaminase IgG antibody - 6.6 U/ml (for the lab I did the tests 0.0 - 3.0 is normal) Immunoglobulin A - 1.91 g/l (for the lab I did the tests 0.7 to 4 g/l is normal) IgA Endomysial antibody (EMA) - < 1:10 titer (for the lab I did the tests < 1:10 titer is normal) IgG Endomysial antibody (EMA) - < 1:10 titer (for the lab I did the tests < 1:10 titer is normal) Deamidated gliadin peptide IgA - 0.3 U/ml (for the lab I did the tests 0.0 - 6.0 is normal) Deamidated gliadin peptide IgG - 46.1 U/ml (for the lab I did the tests 0.0 - 6.0 is normal)   Then I didn't eat gluten for six months. Symptoms disappeared. And I started a gluten challenge. Before the challenge I did some tests. My results: The Tissue Transglutaminase IgG antibody - 0.5 U/ml (for the lab I did the tests < 20 U/ml is normal)) Deamidated gliadin peptide IgG - 28 U/ml (for the lab I did the tests < 20 U/ml is normal)   During the challenge I ate 6 slices of wheat bread. After the challenge my results are: The Tissue Transglutaminase IgA antibody - 2.0 U/ml (for the lab I did the tests < 20 U/ml is normal) The Tissue Transglutaminase IgG antibody - 2.0 U/ml (for the lab I did the tests < 20 U/ml is normal) Immunoglobulin A - 1.31 g/l (for the lab I did the tests 0.7 to 4 g/l is normal) Deamidated gliadin peptide IgA - 2.0 U/ml (for the lab I did the tests < 20 U/ml is normal) Deamidated gliadin peptide IgG - 2.13 U/ml (for the lab I did the tests < 20 U/ml is normal)   To be sure I continued consuming gluten. I ate a lot each day. Two months after I did the tests again. My results I got today are: The Tissue Transglutaminase IgA antibody - 0.7 U/ml (for the lab I did the tests < 20 U/ml is normal) Immunoglobulin A - 1.62 g/l (for the lab I did the tests 0.7 to 4 g/l is normal) Deamidated gliadin peptide IgG - 25.6 U/ml (for the lab I did the tests < 20 U/ml is normal)   Nowadays I didn't have any symptoms except tiredness but I think it's just work. I think it was this parasite because two years ago, for example, and before I didn't have these symptoms and I always ate gluten food. But I'm still not sure especially because the Deamidated gliadin peptide IgG results are sometimes high. What do you think? @Scott Adams
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