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DVK

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DVK Apprentice

I was wondering if anyone knows why celiac disease kicks in all of a sudden. I am sure I have it and I am waiting on tests, But I am 33 and I have had some stomach problems here and there but Why now has it kicked in to full Force?

DVK


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2kids4me Contributor

The trigger is variable - stress - physical or emotional. Physical illness - viral, bacterial or injury. You may have had celaic for years and been asymptomatic. It is an autoimmune disease like Type one diabetes, Hashimotos, Lupus, to name a few of the 60+ immune mediated diseases.

Why did I get Type 1 diabetes at age 25 but my son dveloped it at 9 ? I will never know.

If you have celiac or gluten intolerance - it is important that you educate yourself about the diet. Some people are not diagnosed til later in life (50 or 60) after suffering years of neurologic symptoms, osteoporosis, depression, anemia etc and no one checked for celiac til after that.

I am glad you have a doctor who is testing you for it, it is easier to deal with the unknown than the uncertainty of what is making you ill.

Welcome :)

DVK Apprentice
The trigger is variable - stress - physical or emotional. Physical illness - viral, bacterial or injury. You may have had celaic for years and been asymptomatic. It is an autoimmune disease like Type one diabetes, Hashimotos, Lupus, to name a few of the 60+ immune mediated diseases.

Why did I get Type 1 diabetes at age 25 but my son dveloped it at 9 ? I will never know.

If you have celiac or gluten intolerance - it is important that you educate yourself about the diet. Some people are not diagnosed til later in life (50 or 60) after suffering years of neurologic symptoms, osteoporosis, depression, anemia etc and no one checked for celiac til after that.

I am glad you have a doctor who is testing you for it, it is easier to deal with the unknown than the uncertainty of what is making you ill.

Welcome :)

Thank you for the information, the funny thing is after all the cat scans and ultrasounds and blood tests, it took me doing research and finding this sit to even bring it up to my Doctor,

Kaycee Collaborator

Same with me DVK, it took years for me to find out what was wrong with me. It was me who suggested to the Doctor what the problem might be, but before that I must add, he did not even know I had a problem, as silly me did not think my bowel habits were serious enough, and partly because I was so embarassed about it. But upon going gluten free, I now realise I had other little problems that have cured since themselves.

Even with all the cat scans, ultrasounds and blood tests you have had, they would not have been picked up coeliac as the blood tests etc for coeliac are quite specific. The closest I thing I got to finding out I had a problem was when I was told 20 years ago that I had high levels of antibodies, but the doctor thought it was because I had a rumbling appendix, but it wasn't that, and I never thought about that blood test till earlier this year.

My trigger could be a number of things, but I think it could've been when I was about 16 and my brother had been killed in a motorbike accident. It was about that time that I started having stomach problems on and off. Then when I was 30 I was in a very destructive relationship and that was what probably sealed my fate, as my symptoms were getting worse and worse, but slowly till earlier this year eating was no fun anymore and I felt I had to find out what gives.

Cathy

Marlene Contributor

Hi DVK,

There is a thread somewhere else on this board which deals with "The Trigger". Sorry I'm not sure which section it's under. You will find a lot of interesting stories on that thread. It seems for a lot of people that illness, such as mono, was the trigger. Also, for a lot of people it was a time of extreme emotional stress. I have also read that it can be set off by abdominal surgery such as gall bladder or appendix. Although I think that could be hard to prove seeing as how gall bladder disease can be a symptom of gluten intolerance. That would make it a symptom rather than a trigger.

Marlene

KaitiUSA Enthusiast

Mine was activated due to mono but many things can trigger it to activate. Likely, you have the gene for it and something activated that gene and that's why you have it now.

imagine22 Contributor

mine got significantly worse during pregnancy and post-partum.


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pinktulip Apprentice

When I went to my GI and we were talking he said that it's become more common in our area due to the living conditions. I live in New Orleans and he said since Katrina he has seen an increase in Auto Immune disorders across the spectrum.

Canadian Karen Community Regular
When I went to my GI and we were talking he said that it's become more common in our area due to the living conditions. I live in New Orleans and he said since Katrina he has seen an increase in Auto Immune disorders across the spectrum.

Now that is interesting...... I wonder if the poor living conditions, contaminated water, etc. contributed to a greater number of gastrointestinal illnesses, which served as the "trigger" to bring on the celiac....

I know my trigger was when I got food poisoning down in Jamaica......

Karen

Rachel--24 Collaborator
Now that is interesting...... I wonder if the poor living conditions, contaminated water, etc. contributed to a greater number of gastrointestinal illnesses, which served as the "trigger" to bring on the celiac....

Yeah...I'm thinking bacteria and parasitic infections. <_<

darlindeb25 Collaborator

Being no one knows very much about the why's and why nots of celiacs, I know mine was always there at some extent. My mother used to tell me that as a very young child she had to extra clothes for me because I would get sick while traveling. I do not have a great memory of childhood like my sister does, although I do remember her eating stones and dirt as a young child and the doctor saying it was a vitamin deficiency causing her to do it. She is also celiac. Then when I was pregnant with my 2nd son, things became much worse, stomach troubles several times a week, etc, he is 30 yrs old today, Dec. 2. When I was pregnant with my son Joe who is now 25, my sister lost her first baby--the stress of that situation kicked in my celiacs, full force. It took me another 19 yrs to finally find out what was wrong with me. I have been gluten-free now for over 5 yrs. 4 of my 5 kids are showing signs of gluten intolerance, one has been tested and told he doesn't have it, yet how many of us had false negatives? My oldest has terrible acid reflux and the doctor wants to test for ulcers, my daughter definitely is intolerant of corn, yet doesnt want to go gluten-free, she feels she would have to give up too many favorites.

maribeth Apprentice

I know mine was triggered bu a lot of stress and the dr just said it was depression or all in my mind and would put me on pills which I didn't take for very long as they made me feel worse. I can't believe how much better I feel after going gluten-free . Wish I'd know this years ago-life certainly would have been much different for me I'm sure. Beth.

Mary Contrary Rookie

I knew years ago wheat was not my best friend, too much bread or pasta cause bad C for a few days.

But three months ago we had a major family trauma, my step-dad died of cancer, I was constantly driving my poor mother 100 miles a day to see him in the hospital where he was for one month prior to his death..that is when my constant D started up, along with major bloating and gas and I still have it, but it has been better this last week, I have cut out all gluten for two months now, no official diagnosis yet, and maybe I'll never have one but I know what it is....the bloating and gas went away almost instantly, in a few days, after getting off of gluten though.

negative blood work last month, but I am going for biopsies this coming week and from what I gather on this site a positive there is doubtfull at this point because I have been of of gluten for 2 months now, but it is worth a shot anyway...that and a colonoscopy, just for my piece of mind if nothing else. But no matter what I am off of gluten...

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    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
    • MogwaiStripe
      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  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.
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